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21 December 2016

Sincere apologies to anyone who has checked here for news of Neve this year. We regularly update her Facebook Page 'Reach for Neve' but, with everything going on, have neglected her website. It has been a difficult and worrying year and you can read all about it here.

 

January saw us battling, not only daily seizures, but also our Local Authority as they threatened to stop all funding for Neve’s home education programme and refused our request to move her to an autism specific school in the next county. After numerous meetings, strongly-worded letters and telephone conversations, it was clear we were not going to come to an agreement and so the next step was to take them to tribunal - not a situation we relished at all!

 

February saw us continue to wean Neve’s strict high fat/minimal carb Ketogenic Diet in a last attempt to get some benefit from the trial drug ‘Epidiolex’ (pharmaceutical Marijuana) which we’d started in August 2015. The diet and this new drug did not interact well for Neve and we desperately wanted to see if we too could get the benefits (reduced seizures and improved cognition) that many others were seeing.

 

March saw us completely wean Neve’s diet and finally, after 6 years, I could stop weighing every gram of every meal Neve eats. It was quite a habit to break and we joked that I was secretly weighing Meg the Dog’s food! Just before Easter we got the fantastic news that our Local Authority were backing down; we didn’t have to go to tribunal and Neve could go to our school of choice from September - phew!

 

In April, whilst Jake was away with school, we took Neve down to Grandad’s in Cornwall but a combination of bad weather and bad seizures meant it wasn’t our most successful visit. The cold, wind and rain really aren’t good for Neve and really limit our ability to get out and about.

 

We did, however, have a super trip to Miller’s Ark Farm at the end of April. A charity called ‘Animal Touch’ arranged for us to have a private visit so that Neve could get up close to all the animals. Neve was very taken with the geese and got to feed the lambs, donkeys, guinea pigs...it was a lovely morning!

Neve turned eight in May and we celebrated quietly at home with family. We realised as we looked at our gorgeous girl that we needed to start thinking about the future and the fact that she was quickly getting too tall and too heavy for us to lift and carry post-seizure. We started making enquiries about the feasibility of getting a grant to build a downstairs bedroom and bathroom for her.

 

June was a busy month with several settling-in visits to Neve’s new school interspersed with lots and lots of seizures. It was clear that the Epidiolex, even off the diet, was not helping and so we decided that at our next visit to Great Ormond Street we would discuss coming off and explore what options Neve had left to her.

 

At the end of July, we managed to get away for a week to the Isle of Wight to help Granny celebrate her 70th birthday. Even on the morning of our departure Neve’s epilepsy was very active but whilst on the island she was great - hardly any seizures and out and about every day. It really was an unbelievable difference and we really felt like we had a holiday. The bubble burst within 24-hours of being home as her seizures came back with a vengeance. Who knows why they were so much better that week - maybe the sea air, better air quality, change of scene...who knows.

August was a busy month with ongoing therapies and

tutoring, a trip to the theatre to see ‘The Tiger Who  Came to Tea’ and a trip to ‘A Day out With Thomas the Tank Engine’. August also saw us back to Great Ormond Street Hospital and the decision was made to wean the trial drug and try another new drug called ‘Perampanel’.

September saw Neve start her new school. She started just a couple of mornings a week with the plan to increase these if her health allowed. She hadn’t talked about school at all during her year off and it is very hard to know what she really thinks as she can’t express her feelings. We were certainly very pleased that she was part of a caring school once again and felt positive about her future schooling.

 

October arrived and we had yet more decisions to make about Neve’s epilepsy treatment.  ‘Perampanel’ was not helping her seizures and had a nasty side effect of making her very unsteady on her feet (think Bambi on ice!) We decided to wean it. We were also invited to take part in yet another drug trial for a drug call ‘Fenfluramine’, for which initial results in Europe had been very promising. Drug trials are not to be undertaken lightly. They involve a lot of gruelling visits to Great Ormond Street (for numerous tests and bloods), daily monitoring of seizures, countless questionnaires and they are exhausting for us all. However, 2016 was already our worst year for 5 years in terms of seizure frequency and severity and so we really did feel like we were running out of options. By the end of October the two most recent drugs were gone and we had signed up for the new trial.

With the new trial due to start in the middle of December, November was spent recording daily seizure so we could see if there were any improvements in the New Year. Neve continued to go to school between 1-4 mornings a week but every time she tried to stay for lunch she had violent convulsive seizures, which we think may be due to the lighting in the hall or perhaps the noise levels - its very hard to know for sure. Her teacher is always very keen to ensure that Neve gets to access as much of school as possible so suggested a small ‘lunch club’ just for Neve where a few children join her for lunch in the classroom. How lovely and thoughtful! In November, ‘Meg the Dog’ had been with us for a whole year! She is quite a character and whilst Neve talks about her when we are away from home she still doesn’t choose to interact with her independently. Now that Meg has calmed down and is much more predictable we will work on getting the two of them interacting more and more in the hope that one day Neve and Meg will be best of friends.

 

We had some more good news in November. We were granted planning permission for Neve’s downstairs bedroom and wetroom. We still have to apply the the Disabled Facilities Grant but hopefully we will get this and it will cover around 50% of the cost of the build. We will be fundraising next year to help towards the cost of furnishing Neve’s new bedroom. We need to install: a special bed (one that folds into the wall so we can use the floor space for her physio); air conditioning (she can’t regulate her own body temperature and the hot weather triggers seizures); cctv (so we can monitor her for seizure activity whilst she sleeps); and built in storage (for the numerous bits of ‘kit’ we have for her). So, if anyone would like to do a fundraising challenge for her in 2017 we would LOVE to hear from you. Our aim to to try and raise £4000. Can you help?

 

And so to December, and we are looking back on 2016 battered and bruised. You never get used to seeing your child seize and the violent convulsive seizures have increased from 1-2 every two months to up to 6 a week. As I write this Neve has had four in four days. Poor Neve is often ghostly pale with big dark circles under her eyes, and she is exhausted. We are trying not to get our hopes up with the new drug trial - the disappointment of the last one was enormous - but who knows maybe next year’s update will be a really positive one.

 

Neve, despite all that she endures,  continues to smile and giggle and love unconditionally. She has no awareness of her seizures and for this we are incredibly grateful. Whether it’s 7 o’clock in the morning or 7’o’clock at night when she wakes from her post-seizure sleep the first thing she says is, ‘Time for breakfast’ and this picks us up when we feel like everything is just too hard.

 

Wishing you and your family a wonderful time this Christmas and may 2017 be all that you wish for. Graham, Becs, Jake, Neve and Meg Xxxxx

 

22 December 2015

Well, an eventful few months to say the least! Neve went back to school in September. She is now in Key Stage 2 (Year 3) but from the outset she struggled with the school environment and in particular the noise and activity levels in her new class. She became very anxious, her behaviour deteriorated and she constantly needed to chew something to help calm herself down. Her seizures were four times worse on the three-days-a-week she was at school compared to being at home and consequently very little learning, if any, was taking place. It was a hard decision but this couldn’t continue and so we took her out of school at the beginning of October. Immediately her seizures returned to their normal daily levels and we knew we had made the right decision at this time. We started to look at what other educational options were available and are currently talking to the LEA.

This last year or so, Neve’s hands have been triggering more and more seizures, when she eating, doing jigsaws, doing handwriting exercises, pressing buttons on toys etc. We saw Neve’s Neurologist in the middle of October and he confirmed a secondary diagnosis of Somato-sensory Evoked Epilepsy, which is rarely seen in Dravet. Yet another challenge for poor Neve and currently we have to feed her all her meals and she has to be more closely monitored than ever.

We were very conscious that, whilst confident we can meet her educational needs at home, she was getting very little opportunity to mix with other children and so we enrolled her in a weekend special needs dance class and also a special needs gymnastics group. We are very fortunate that such classes even exist and she really enjoys them. We have also started weekly Music Therapy and along with her Yoga, Occupational Therapy, Hydrotherapy, Chiropractic and Cranial Osteopathy she is kept very busy. You can see how vital Neve’s Trust is – we really couldn’t do a fraction of what we do for Neve without it!

At the end of November, and after much research, we welcomed the latest member to the Dandy household – Meg the Tibetan Terrier. Our hopes are that she will be an Autism Companion Dog for Neve, bringing pleasure, calm and friendship, as they both get older. I think it is fair to say that we hadn’t quite anticipated how tiring and labour intensive having a new puppy would be, not helped by the fact that she is still, nearly four weeks on, not settling at night. Meg is very interested in Neve whereas Neve is still playing it cool although certainly not frightened or bothered by her barking. Jake it is fair to say is smitten!

And so to December, and we are looking back on 2015 with very mixed emotions. We have had some lovely highs but also a fair number of lows and nearly every month we have had to make some very difficult, often life-changing, decisions. Neve continues to be the light in our lives. She loves unconditionally, finds pleasure in the simplest of things and asks for a ‘hug, kiss, cuddle or squeeze’ on an almost hourly basis. She picks us up when we feel like everything is too hard and she reminds us that life can be fun.

Wishing you and your family a wonderful time this Christmas and may 2016 be all that you wish for. Graham, Becs, Jake, Neve and Meg Xxxxx


14 September 2015

Well the summer holidays went very quickly and as well as 3 scheduled visits to Great Ormond Street Hospital for a new drug trial we managed to get to Grandad Geoff's in Cornwall, to stay on a farm in Devon (thanks to Give them a Sporting Chance), to go Riding for Disabled and to go into London to see 'Aliens Love Underpants'. Neve's seizures and special ketogenic diet initially went a bit haywire on the new epilepsy drug but patience and tweaking seem to have helped calm things down a little. We are soon to make some more adjustments in the hope that we will see an improvement in Neve's epilepsy control and potentially her cognition too. Fingers crossed!

Neve has gone back to school, Monday-Wednesday, in a mixed Year 3/4 class and is taking a little time to adjust to the new environment, noise and routine. Last week she had 4x as many seizures at school than at home so hoping that this improves as she gets used to it all. Thankfully she has the wonderful Kate at school to make sure that all her needs are met.

She has the rest of the week at home and she continues to work with her long-standing and fabulous tutor Jo. Jo, along with Neve's Autism Consultant Duncan, work tirelessly to help Neve reach her full potential. Her language, both spoken and understanding, has come on so much thanks to their hard work and commitment over the last four years.

Neve continues to receive weekly/fortnightly therapies and is especially enjoying her weekly Special Needs Yoga. She is seriously flexible and her seated position of choice is a half lotus - puts the rest of us to shame :-) We are forever grateful to everyone who has raised and donated money to Neve's Trust so that we can continue to give Neve the best life possible.

19 June 2015

Not too long until the summer holidays and so we are busy planning some activities for Neve including a few mornings at the Special Needs Holiday Club, swimming at the hydrotherapy pool and even a trip to theatre to see 'Aliens Love Underpants' (one of her favourite books!) Interspersed with this will be regular sessions with her tutors who will continue with her daily physiotherapy, occupational therapy and language programmes. Her daily seizures mean that it takes a very long time for new skills to be acquired and so daily input is essential. We have two breaks planned - a visit to Grandad in Cornwall and our stay on a farm in Devon. This is going to be our most adventurous and bravest summer to date!

Neve is a bit up and down at the moment with morning seizures upon waking happening 5 mornings out of 7. There doesn't seem to be any real pattern to these although she is definitely worse if we have to wake her up rather than waking up naturally. Half and hour of multiple myoclonic (electric shock like) seizures leave her in a fog for the rest of the morning and it is a really rubbish way to start the day :-(

REACH for Neve fundraising has been going well and we are on track to reach our target. A huge THANK YOU to everyone who has supported our darling girl.

20 May 2015

HAPPY BIRTHDAY NEVEY! Can't believe our beautiful, brave and bubbly little lady is 7! We had a little tea party for her on Sunday and today she spent her birthday at school and then Nanny and Grandad came for tea. Quite a few seizures today but no rescue meds needed thank goodness. Reasonably stable over the last couple of months, mostly little seizures that last less than 5 seconds but can be numerous across the day and so mean she gets very tired. She's eating well and sleeping ok, enjoying school and so lots to be thankful for.

Fundraising still going well and we have raised about £7,600 of our £10,000 target so far. Neve still receiving regular therapies including Occupational Therapy, Cranial Osteopathy, Special Needs Yoga, Physiotherapy, Chiropractic and a specialist Autism programme - she's a busy girl and the funds raised are very well spent!

Looking forward to planning some treats for the summer holidays :-)

19 March 2015

Goodness how did that happen - we are already in March?! Apologies if you have been checking in for news of Neve and have noticed that it has been somewhat missing!

Neve has had an 'up-and-down' start to the year with some good spells but some rather nasty seizures too to keep us on our toes. The nastiest of the seizures was an hour long episode at the end of January, which really did come as a shock to the system for all of us. It had been over 4 years since she had had a seizure of this magnitude and it looks like a winter virus was to blame. She took a good few weeks to get back to her usual smiley self and is still very 'sensory' seeking in that she feels that need to chew almost constantly (clothes, hair etc) A great deal of her seizures are caused by putting pressure through her hands, for example, using a fork, pressing a button on a remote control or toy, pressing a light switch etc. This is known as 'sensory evoked epilepsy' and Neve's neurologist is going to look into it more for us. He has never seen it in Dravet Syndrome before and is going to ask colleagues at Great Ormond Street for their thoughts.

Neve is still enjoying her 3-days-a-week at school and is supported wonderfully by her 1-2-1 Kate. She is still having her tutor at home Thursday and Friday and also weekend mornings and the wonderful Dhi has been doing a great job whilst Jo has been on maternity leave. We say a sad 'Goodbye' to Dhi and a hearty 'Welcome back' to Jo at the end of April. Having a school-home mix works very well for us as Neve gets very over stimulated and tired at school and at home we can keep it as quiet and calm as she needs.

This week saw us mark 5 years on the ketogenic diet. This amazing high fat diet dramatically reduced the number of life threatening convulsive seizures that Neve was having and has enabled us to reduce her daily medications by two-thirds. Every gram or every meal has to be weighed and eaten but Neve is a KETO STAR and takes it all in her stride. We are hugely grateful to Sara and David at The Daisy Garland and Nicol, Neve's ketogenic dietician, for all their support over the last 5 years.

Neve is fast approaching the grand old age of 7 and we are hoping to have a little birthday party for her again in May. We have a short trip to Cornwall planned in April to see family and friends and a bigger holiday booked in August in Devon. We are very excited about this first 'real' holiday and even more so because of the setting - Neve LOVES animals and we are staying on a farm! The amazing charity 'Give Them a Sporting Chance' have made a very generous contribution towards the cost of the holiday, which has enabled us to go for a week in the summer holidays. We can't wait!

Our fundraising efforts are going well and we are now half-way through our 'REACH for Neve' 12-month campaign and have raised nearly £6,000 or our £10,000 target. All monies raised go towards the cost of Neve's ongoing therapies. We have some exciting events taking place including a stall at an Autism Fair, a night-time 5K Glow Run and a half marathon to name but a few. See our Fundraising Page for more details.

15 December 2014

Once again the weeks have been racing by and we are nearly at Christmas. Neve has been unwell the last few days with a nasty chest infection, which caused some equally nasty seizures. She seems to have perked up this afternoon and will hopefully make it back to school in time for their Christmas production. Last year she missed it because of a seizure that morning so we are keeping everything crossed this time around. Every year, just before Christmas, we do a yearly update and here is this years...

HELLO AND SEASON’S GREETINGS!
We can’t quite believe how quickly the year has gone and wanted give you a little up date on how Neve is doing.

2014 has been an interesting Dravet year, with both highs and lows. The beginning of the year was punctuated with monthly seizures requiring rescue medications and one hospital admission. Thankfully these big seizures settled down by March and we started to look forward to the warmer weather and being able to get Neve outside.

IN April we started Neve’s garden project and before long she was able to enjoy her very own sensory musical garden thanks to Variety UK and the fundraising efforts of family and friends. Neve loves her new garden and is able to go out for short periods when the weather is favourable.

JUNE and July were quite worrying months as Neve started to have many more seziures and we saw the emergence of new seizure types including drop seizures which would see her fall to the ground with no warning. This was obviously very frightening but thankfully we did find out the cause - teeth! Once all four back teeth were through her seizures settled and she was able to enjoy the summer holidays. We were very brave again and went down to Cornwall to visit family for a few days and even took Neve into London for the first time to see ‘What the Ladybird Heard’ at the theatre.

NEVE is now in Year 2 and started back to school in September. She still loves school and attends three-days-a-week. She has wonderful support from her 1-2-1 Kate and is making progress, particularly in reading and number work. Her fine motor skills are still significantly impaired and writing, drawing, dressing etc are still very difficult for her. We continue to work with a number of different therapists to help her development as much as we possibly can.

WE started a new Facebook Page and awareness and fundraising initiative in September called ‘REACH for Neve’ (Rewarding, Exciting and Adventurous CHallenges).  Friends and family have been fundraising to help us reach our target of £10,000 in 12-months. This is what we spend every year on Neve’s therapies and tutors and we can’t thank everyone enough for their amazing kindness and generosity.

NEVE is still on her special Ketogenic Diet and by the beginning of October, after 20 months, we finally weaned one of her two remaining anti-epileptic drugs. It has always been our aim to reduce her drugs as much as possible and for her seizures to be controlled by her diet. Thankfully, one less drug means Neve can benefit from fewer side effects from her medications.

THIS year, as last, we will be making donations to three wonderful charities that support Neve, in lieu of Christmas cards: Dravet Syndrome UK, The Daisy Garland and Sebastian’s Action Trust. Wishing you a wonderful Christmas and New Year!  Much love Graham, Becs, Jake and Neve x

8 October 2014

An up and down sort of month for Neve. A few odd seizures such as the one she had Monday that involved over three hours of continuous clicking and clucking her tongue. This is known as a focal seizure affecting a certain lobe (area of the brain) and it is just so horrible seeing her taken over by this seemingly harmless action. Needless to say, she was shattered that evening and was asleep almost as soon as her head touched the pillow. She was ok on Tuesday with only intermittent clucking but all rather strange.

We have successfully weaned a second anti-epileptic drug and so far so good with respect to big withdrawal seizures. it has always been our aim to reduce her medication as much as possible and the let her special ketogenic diet do the work and it feels good that she is now on just a small amount of one drug rather than three strong ones with all the side effects that they have such as loss of appetite, sleep disturbance and aggression.

Neve is enjoying her three days at school and continues to make slow but forward progress. She has her tutors for 18 hours over the rest of the week and this continues to work well for us and her.

Our 'REACH for Neve' fundraising initiative is going well and we have raised £800 of our £10,000 target in the first month. There are some Rewarding, Exciting, Adventurous CHallenges and quite frankly some bonkers ones too. If you are reading this and haven't checked out Neve's Facebook Page (REACH for Neve) please do as there are weekly updates here. Also, if you are reading this and fancy doing a fundraising challenge for Neve please do get in touch ( This e-mail address is being protected from spambots. You need JavaScript enabled to view it )

13 September 2014

Can't quite believe the summer holidays are over and the children are back at school! Neve has done so well during the holidays despite one significant seizure (requiring rescue medications) and around 3000 smaller seizures (lasting between 1-5 seconds).

These holidays have been her most adventurous to date and Neve has:
- been to Cornwall and seen the sea for the first time
- enjoyed two mornings at KIDS holiday club
- been to the farm three times
- enjoyed two play dates
- been into London to see the show 'What the Ladybird Heard'

We've also kept up with a lot of her therapies and she has:
- been to Special Needs Yoga three times
- been to physiotherapy four times
- been to the cranial osteopath three times
- been to the chiropractor twice
- been to the hydrotherapy pool twice
- and had 120 hours of dedicated tutor time

This is what we do, even in the holidays, to ensure that Neve continues to develop both physically and mentally and that she reaches her potential - whatever that might be. This is why we fund raise for Neve's Trust. She will always have seizures and her condition may well deteriorate in years to come but we are doing everything we can for her every single day. Thank you to everyone for your continued support.

Neve has gone back to school happily and is now a big Year 2 girl. We are so pleased that she likes school so much and know that she is brilliantly looked after there by Kate her dedicated 1-2-1. She is still doing Monday-Wednesday at school and then being home schooled Thursday and Friday (and weekend mornings). This enables us to fit in her therapies too. She certainly is kept busy. :-)

12 August 2014

Well, we think we know what has caused the increase in seizures over the last few weeks - TEETH! All 4 of her big back teeth have come through and we are hoping that this explains the mystery temperature, increase in seizures and slow eating. Neve had her worst seizure since March last week requiring rescue medication which thankfully stopped the seizure but caused her to have terrible halucinations afterwards. So horrible to see her screaming so fearfully.

Apart from this, the summer holidays are going ok so far. We have had a couple of 'firsts' with Neve attending special needs holiday KIDS club (with her 1-2-1) for a couple of mornings and we also took her into London to see 'What the Ladybird Heard' at the theatre. Both went really well and we hope to continue to do more and more things with her.

Neve's Facebook page is going from strength to strength and she now has 210 followers. We've had lovely feedback from people and hopefully it is helping to increase awareness of Dravet Syndrome and giving people an insight into what Neve has to deal with on a day-to-day basis. For daily updates don't forget to LIKE (and SHARE) Neve's page Reach for Neve

We are going to down to Cornwall again soon to see family and friends down there. We went for the first time last year and hopefully this year's trip will be just as successful. The ambulance service and Truro hospital know are coming but hopefully we won't be requiring their services.

3 July 2014

We have started a Facebook page in order to share how amazing Neve is, to help raise awareness of Dravet Syndrome and to launch our new fundraising initiative 'REACH for Neve' (Rewarding, Exciting and Adventurous CHallenges for Neve). This year, family freinds Kate and Molly are taking up the fundraising gauntlet and doing 6 crazy challenges over the next year or so to help to us to reach our goal of raising £10,000 so that we can continue with Neve's intensive therapy programme for another year. If anyone else would like to join our REACH for Neve campaign and do a fundraising challenge please do get in touch and don't forget to LiKE and SHARE Neve's Facebook page Reach for Neve

More details on our Fundraising page.

1 July 2014

A bit of a mixed time at the moment as, seizure-wise Neve is quite unstable. Seizures are more frequent and stronger with a new variety (drop seizures) and the reappearance of ones we haven't seen for some time (absence seizures) :-( Thankfully they are all short but they can be quite violent and how she didn't knock herself out the other morning as her head smacked the table I don't know. We don't really know what is going on but she has bad hay fever again this year and is really struggling to keep her own body temperature down in this warm weather. Always something.

The 23rd June saw the first ever International Dravet Awareness Day and we held a coffee morning and raised £230 for for Dravet Syndrome UK. To mark the occasion I also posted the following piece on Facebook and had the most amazing response. I thought I'd share it here too.

10…The average number of seizures Neve has during breakfast. Mornings are particularly troublesome for Neve and seizures can be as subtle as an eye flutter or strong enough to bang her head off the table. She never cries.
9…The number of days of Neve’s longest hospital stay. She has been admitted by ambulance on over 60 separate occasions.
8…the number of different hospitals Neve has been in. Neve has permanent open access at Wexham Park’s Children’s Ward.
7…the number of different seizure types Neve currently experiences. There is never any warning of when or where a seizure will happen.
6…Neve’s current age. Developmentally she ranges from 18 months to 5 years – she cannot dress herself and is still in nappies but is learning to read. She is also autistic.
5…The number of Ketogenic meals Neve has each day. Neve is on the Ketogenic Diet, a very high fat, low carbohydrate and adequate protein diet. It has significantly reduced the number of life-threatening seizures Neve has. Every ingredient in every meal has to be weighed to the nearest gram.
4…The number of times Neve has been put into an induced coma in order to save her life from seizures that would not stop despite being given every drug available.
3…The number of anti-epileptic drugs Neve has been on at any one time. These drugs have significant side effects including sleeping, eating and behavioural problems. Thanks to the Ketogenic Diet we have managed to wean over 50% of these drugs.
2…The number of minutes we will allow Neve to seize before administering strong rescue medications to try and stop the seizures before they take hold and cause serious brain damage.
1…The number of smiles and ‘Hello darlings' it takes each morning to help you pull yourself together and face another day. Neve is truly AMAZING!

22 May 2014

HAPPY 6th BIRTHDAY to our gorgeous Nevey! We celebrated on Sunday with a tea party with two of her little friends from special school. They all loved the instruments in our new musical sensory garden and had a great time chasing bubbles (thank you Auntie Lynn for the mains-powered bubble machine!) We have never had a little party for Neve before and so this felt like a real milestone.

We have had a busy couple of months. As mentioned, Neve's sensory garden is now complete and she is loving being outside, playing on the cymbals, xylophone, bells and drums. We can't thank Variety UK enough for funding the instruments and Ben, at Greenbee Gardening (www.greenbeegardening.com) for installing them into fantastic, mini-beast themed, sensory 'pods'. This garden project has been two years in the planning and fundraising and it feels fantastic to have created something that brings Neve so much enjoyment.

We started our appeal to collect enough mobile phones to exchange for an iPad for Neve at the end of March but after just a few weeks the wonderful Ascot Round Table heard about our appeal and offered to buy Neve an iPad Air. We were so touched and Neve is loving playing games and reading books on her new tablet. We are still collecting mobile phones in order to exchange for a new laptop which I will use daily to calculate Neve's ketogenic meals and so please do get in touch if you have any mobile phones.

Last month I was approached by Dravet Syndrome UK to ask if I would be willing to talk to a journalist about caring for a child with Dravet Syndrome. Never being short of things to say on this subject, I happily agreed and the article appeared both online and in print. The photographer took some beautiful pictures which was an added bonus and Neve looks utterly beautiful. I had to laugh though when someone posted a comment online which read '...sincerely hoping that her mother doesn't pluck or wax her daughter's eyebrows'. As if anyone in their right mind would and oh, to have the time! http://www.dailymail.co.uk/health/article-2618675/Girl-5-never-birthday-party-holiday-excitement-kill-her.html

Neve hasn't been too bad recently. We had a bit of a blip when we added Potassium Citrate to her regime to help prevent kidney stones (an unfortunate side effect of the ketogenic diet). Unfortunately for Neve the side effect of Pottasium Citrate was horrendous diarrhea which lowered her medication levels and led to an increase in seizures. She is settled again now and we will try the potassium citrate again but will introduce it much, much more slowly. Seizures are at around 40-a-day (ranging from eye flickers to head-banging-the-table ones) with the occasional longer one (1-2 minutes) due to over-exertion, over-excitement or illness. She is very sensory seeking again (constantly chewing her hair or clothing) and the dreaded breath-holding is back - joy! That said, she is happy and smiley and very affectionate. She is a pickle mind you. She has gone back to using just 2-3 words when making requests, for example, 'Bye bye doll' when she wants me to put the jack-in-the-box back in. When I asked her to use her words the other day she said, quite eloquently, 'Mommy put the doll back in the box please.' What a madam!

We are looking forward to going to the fantastic Bluebells holiday house for three days soon. It will be a nice break and both Neve and Jake love it there, especially the hydrotherapy pool, games room and music room. A huge thank you to Sebastian's Action Trust for the opportunity to go again and enjoy quality family time together.

 

20 March 2014

We are now about 7 weeks dairy-free and have seen a significant reduction in Neve's seizures - some days seeing around 75% fewer myoclonic jerks! So, so pleased and she is eating her meals and extra oils just fine. Having had three significant seizures requiring rescue meds in December, January and February we have yet to have one in March and are really hopeful that we might break this current bad run. We have also seen a slight improvement in her autistic behaviours and she definitely seems to be more 'with us'.

Now that the weather has warmed up we can finally start to get Neve outside and she even went on her trike on Sunday. Providing it is not windy and she is wearing her sunglasses and cap and doesn't get over-excited or over-exert herself she is managing to stay outside in the garden for 15 minutes at a time which is wonderful as she loves being outside. Next week is going to be very exciting as work starts on her sensory musical garden. Variety UK have very generously provided her with outdoor musical instruments and we have a wonderful gardener Ben, from Greenbees Gardening, installing them and creating lots of different sensory experiences with the use of carefully selected plants and aggregate. Can't wait to see Neve's face when she sees her very own giant xylophone in the garden!

Neve still really enjoying school and giggles her way through most of her three days. She has her home tutor for the rest of the week and this is working very well for us as it means that she has a nice mix of input and doesn't get too tired. Her parent's evening went weil and she is making progress which is great. All in all, Neve in a good place :-)

1 February 2014

January has been an 'up and down' kind of month. Another big seizure almost exactly a month after the last one was a real downer. Just 5 minutes outside was all that it took. Can you imagine not being able to spend five minutes outside on a relatively warm, sunny winter's day? Not sure whether it was the cold or the sunlight or both but whatever it was it sucks! Neve was violently sick afterwards, as she was last month, and this would seem to suggest that her oral rescue medication is not for her. We've had to make changes to her emergency protocol as we just can't risk her being sick mid-seizure. More changes too to her special ketogenic diet as this would appear to not be as effective as it has been in the past. We have now taken out all dairy so that she is now casein and gluten free. In fact her body is now a temple, albeit a temple in need of serious rewiring! Taking out dairy from a diet that requires you to eat 112g of fat a day is no mean feat but she is a 'Keto Star' and takes all her healthy oils from a syringe and has taken a liking to almond nut butter! I give her coconut milk through her feeding tube and it has been surprisingly easy to do without butter, cheese and her Ketocal formula. We are keeping a close record on her myoclonic (electric-shock like) seizures and so far they have gone down slightly. Don't want to jinx things so will write more next time. Feels good to be doing something positive and proactive when so much of Neve's condition is out of our control so I guess January has ended more 'up' than 'down'.

1 January 2014

A very sad start to the year, as the little boy Ollie I mentioned in my last post died at 7.25pm on 27 December. He was a gorgeous little boy whose parents did so much for him and it has really hit our UK Dravet community hard. I'd made him some learning resources last month as him Mum, Sarah, was so keen to teach him and still can't quite believe he's gone - Dravet Syndrome is such a brutal disease. His parents have set up a fundraising page for Dravet Syndrome UK in his name https://www.justgiving.com/OLLIE210411/

Neve is ok, still lots of small seizures so I have modified her special diet in an attempt to help reduce them. Ollies's death has made me want to keep her closer to me than ever and her going back to school next week will hit me hard.

I recently came across a blog by a lady called Sheri Dacon. It summed up the emotions that go with having a child with special needs so perfectly that I thought I would share some of it here. Her son is autistic. Sheri writes:

“There is a kind of grieving that exists with having a special needs child. My child is very much alive, and I am so grateful, especially since I have witnessed his seizures and considered the possibility, if just for that split second, that he was dying. But the hopes and dreams I had for my child die a little more each day as I watch him move forward in life. When he was just five or six, I had hope that he would outgrow certain behaviours with age and that he would function better. It was that hope that kept me going. Yet here we are at age nine, and while some behaviours have improved, others have declined. It is hard to hope when your child pushes against an ever stronger current.  Adolescence is just around the corner and it is scary. The grieving never ends. If you let your guard down for even a moment, some terrible incident will come slamming into you, reminding you that your child will never be like the others.  He will always be different. Slam!

To accompany the grief, there is its sister–guilt. Guilt that I did something to cause it. That I should have noticed the signs sooner, gotten more and better treatment, sought a different course or path. That I should be doing more, reading more, helping more, trying harder. That I should spend more time, more money, more effort supporting my child. That I should experiment with a different therapy, a different drug, a different teacher, a different diet. And whenever I try to give myself a break, cut myself some slack from overworking, overthinking, over-trying — there’s always a judgmental comment or stare to put me back in my place. Sometimes it brings me to uncontrollable sobbing. I can’t make the grief or the guilt go away.

And yet if there was one thing I’d want parents of non-special needs kids to know, it’s to please be aware that we — the moms and dads of those “special” kids — are hurting. Yes, we love our kids. No, we wouldn’t trade them for anything in the world. But the love we have doesn’t take our pain away. In fact, it just intensifies it. Because we can’t take their hurt away. We can try and try and try, and we DO, and it might even help a little, but we can’t make the pain that accompanies disability go away.”

27 December 2013

Festive greetings to everyone. We hope that you have had a good Christmas with loved ones. Neve has been having a bit of a rough time with increased seizures and even a hospital admission on 18 December due to prolonged seizures - the first time in over 2 years! She has had a couple of infections so at least there is a reason although generally her seizure activity (both number and type of seizures) has increased over the last couple of months and so it does feel like we may be entering a different stage of her condition. Dravet Syndrome is like that, you never know what is around the corner and have to be ready to deal with seizures 24-hours-a-day. We try to stay focused and positive and concentrate on one day at a time but there are times when it feels completely overwhelming and the thought that the next seizure could be the one that could take her away from us leaves you floundering. This year has been particularly devastating within our international Dravet community with 14 children having lost their lives and one 2-year-old boy called Ollie in the UK currently critical as I type.

So, nearly 2014...2013 seems to have gone so quickly. A year of firsts again with Neve starting school, visiting family in Cornwall and have her feeding tube operation. Overall a positive year and Neve has made progress in many areas. We are blessed to have very supportive family and friends and a whole 'team' of people including her tutors, teachers, nurses, private and NHS therapist working hard to make Neve's life happy, safe and fulfilling. We really couldn't do what we do without them. Thank you and Happy New Year. XX

10 November 2013

A mixed few weeks for Neve. October saw a large increase in seizures and subsequently a deterioration in sleep, behaviour and learning. We think the increase in seizures was due to stress and anxiety at school and her small, daily (myoclonic) seizures go up to 200-a-day. Poor Nevey :-( I went into school and after a two-hour meeting we agreed a number of changes to Neve's school day to ensure that potentially stressful situations were significantly reduced and that quiet relaxation time is built into each day. She has been back at school for a week now and I'm glad to say that she had three good days with only around 20 myoclonic seizures each day. We really hope she can continue at school as she does enjoy it and especially loves music with Mr Joe, forest school with Mr Chris and P.E. with Ella and has started mentioning the other children again.

Over half term Neve had her chicken pox vaccination. This is not given as standard but chicken pox presents a very serious risk to Dravet children and now Neve is mixing with other children we felt that it was a wise move. We are still to give her her MMR - next year if we are feeling brave.When a child's health is so compromised decisions like this are never easy.

We officially started our winter hibernation today. We took Neve for a walk to feed the ducks as it was such a beautiful day but after 15 minutes she had a 2-minute seizure from the cold and that was the end of her fresh air and sunshine. I really hate that her epilepsy stops her from getting outside - just rubbish! Roll on April!

16 September 2013

Glad to report that Neve's operation to change her feeding tube to a button (think swimming armband button) was a complete success. No big seizures as a result of the general anaesthetic and she can no longer chew on her tube - hurrah! We are also now 2-years since we were last admitted to hospital because of a seizure - double hurrah!

Neve has enjoyed going back to school although was tearful for the first few days as she had to go in a different door - bless her little autistic boots! She is in a mixed Year1/2 class with 9 other children and this week will see her do three full days for the first time ever - fingers crossed she doesn't get too tired as this can be a trigger for extra seizures. Her teacher is very pleased with her and she has a full three days with the usual literacy, numeracy, music, history etc and well as occupational therapy, speech therapy and physiotherapy.

We have found a great local company to create Neve's sensory/musical garden but as the weather will soon be too cold for Neve to go out in we have decided to install the instruments in Feb/March next year. This will give me time too to contact all the local garden centres to see if they would like to donate a plant or two - can't hurt to ask.

Neve has had her fifteen minutes of fame recently when her Make-a-Wish wish granter named his car after her. Neve the 22-year-old white Mazda took part in the Motoscape Rally Challenge (7 countries in 5 days) and lots of money was raised for such a worthwhile cause.

 

12 August 2013

It never ceases to amaze me how quickly the weeks go by. So Neve has now completed a whole term at school and was up to 4 half-days a week by the end. She tried two whole Monday's which went ok although she did have noticeably more small seziures in the afternoon/evening. The aim in September is to work up gradually to three whole days and then do two days home-schooling too. Finger's crossed. Very nervous about the forth-coming term because of the increase in seasonal viruses bit will just have to see how she copes. It's fair to say Neve LOVES school and names the children and teachers all the time. She will be going into Year 1 and will have her home-tutor Kate with her at school as her dedicated 1-2-1.

In this year of 'firsts' and 'being brave' we have finally plucked up courage and taken her to down to her Grandad's in Cornwall. We went for four days and she coped amazingly well with the journeys, new places and people. It was great to know that trips like this are now possible although the 6.5hr journey there might mean its an annual event rather than a weekly one! We took her to the Seal Sanctuary, the local regatta (where we discovered she loves brass bands but hates loud-speaker systems) and also out for a gentle boat trip on the Helford River.

We are now half way through the summer holidays and Neve is continuing with her tutors. Having Neve's Trust means that we are able to continue her home programme which she thoroughly enjoys. We do all sorts of things and no two days are ever the same. For example, this morning she has played with he water tray outside, done an obstacle course, had a massage, practised her fine motor skills, read her reading books and worked on naming and understanding what we do with each part of our body. Tomorrow might include numeracy work, drawing in her sand box, articulation exercises, Playdoh, playing with her toy cars and music. It really is very varied and hugely rewarding.

At the end of August, Neve is going back into hospital to have her feeding tube changed for a small button which will be much easier to look after. This involves another general anaesthetic unfortunately but after that all care can be done at home. She continues to do well with her oral and tube feeding and her special diet is keeping the big seizures away. She still has her daily 30-40 little ones and a few bigger one-minute ones but these are typically from over-exertion so we just have to very careful and limit time in the garden to 10 minutes and always take her pushchair with us. Sleep is the bigger problem at the moment as she finds it very difficult to get to sleep - sometimes takes 2-3 hours to settle. She does at least sleep through until at least 6.30am once she is asleep so it could be a lot worse.

Our next big project for Neve is creating a sensory garden for her. The wonderful and generous Variety UK have awarded Neve a grant so that she can have some outdoor musical instruments and so we are just about to start speaking to some local gardening companies to help us install them and to plan how we can make it a real sensory experience. It will hopefully turn the garden into a wonderful space for her even if she is only outside for small amounts of time.

9 June 2013

Well, Neve has had a busy few weeks! School is going well. She has completed her first half-term in Reception at Special School and everyone is delighted with how well she has coped. She has been doing 3-half days and goes up to 4-half days for the remainder of the term. She has either Jo or Kate (her home tutors) as her dedicated 1-2-1 at school which i'm sure has been a major factor in her coping so well. There are around 9 other children in her class, who are mostly autistic. Several of the children are non-verbal and Neve is by far the most chatty. She has already memorised her weekly timetable and has impressed her teachers with her academic abilities. I'm much less stressed about her being away from me although my heart is still in my mouth every time the telephone rings and she is at school.

The 20th May saw Neve turn 5. This felt like a real milestone and I can remember in those dark, dark days between the ages of 1 and 3 wishing that we could fast forward to when she was 5 when things might be a bit easier for her. Neve's seizures are pretty much the same - 30-40 small seizures a day but amazingly we haven't had a 2-minute seizure for over 2-months. I think this is because her special diet is working more effectively now she is partly tube-fed and meals are taking 20 mins rather than 90 mins or more. The diet work even better if you can get them off medications and I'm currently weaning one of her anti-epileptic medications with the ultimate aim of getting her off medications altogether but that could still be a couple of years off yet.

Last week we had our second family holiday since Neve was 4-months-old. We went to the wonderful 'Bluebells' again - the purpose built house for sick children built by the amazing Sebastian's Action Trust. Both Neve and Jake had a wonderful time and it was thankfully drama-free. Neve loved swimming everyday in the the hydrotherapy pool and by the end of the week was managing 15 minutes without too many seizures. She also loved the music room and sensory garden. We had two day trips to Birdworld and Peppa Pig World and Neve seemed to really enjoy herself and coped very well with the heat and bright sun.

All in all, Neve is in a calm place right now. She is still showing developmental progress, particularly in her speaking and reading; she is sleeping quite well and feeding has improved significantly since her gastrostomy. Behaviourally she is very repetitive and easily gets fixated on things e.g. a particular puzzle, a picture on the wall, a line from a particular song which she sings over and over and over again. That said she can be very cheeky at times and has a very sunny personality and is very affectionate. Long may it last.

18 April 2013

Glad to say that things are much more positive here this month after a tricky couple of weeks. Neve's gastrostomy stoma (hole) had got infected but it has cleared up now and feeding, both liquid and solids, is going well. Her seizures were in excess of 100 a day but slight tweaks to her diet have helped enormously. We reduced her calories as she was putting on weight a little too quickly and increased her ratio (fat to protein/carbs) and her seizures are back to around 30 a day, which she can cope with. Yesterday was a momentous day as she started school! We just went in for an hour and a half and she coped well. At first she ignored the other children but was happy to go up to the teachers. After a while she started acknowledging the children, who are largely autistic too, and then took a particular shine to two little boys and tried to hug them which resulted in both boys crying! She was very tired after an hour so I think we will have to build up to a full morning. The aim, eventually, is that she will do 5 half days at school and 5 half days at home with her tutors. Exciting times for Neve and anxious times for Mummy!

23 March 2013

Gosh, might have spoken too soon. Neve had her first status seizure in over 18-months on Friday evening. Thankfully it stopped after 15 minutes with the first lot of rescue medications but it came as a huge shock to the system for everyone. Neve was very distressed afterwards, understandably so, and has been very anxious and repetitive for the last couple of days. Really wish we knew what had caused it. Theories are: delayed reaction to general anaethetic; body struggling with new diet regime; body rejecting the piece of plastic now sticking out of her abdomen; or body fighting virus (she now has a cold) and couldn't cope as well following operation and antibiotics. Poor Nevey :-( Hopefully now that her cold has come out she can get rid of that and start feeling stronger. Her eating is dire - over an hour and half to eat 100 calories this morning - so thank goodness we now have the option of liquid feeds. One positive is that after 18-months of not needing rescue medications, Midazolam does now seem to work again. Previously it had stopped working because her body had got used to it. Have to say though, that I am more anxious than ever about her starting school after Easter.

18 March 2013

Well, I'm pleased to say that we are home again and that Neve's operation to insert a feeding tube went very well. Neve was an absolute star and very brave indeed. The doctors and nurses were amazed how calm and chilled she was and she has taken to being tube fed with no problems at all and does not seem phased at all that she has a tube sticking out of her tummy. It is a huge relief that it is done and that there were no complications. We are still giving Neve small meals but we can now supplement those meals with her special milk and know that she is getting all the calories and nutrients that she needs. It was such a difficult decision to make but hopefully it will improve everyone's quality of life.

13 March 2013

Goodness me, where have the last couple of months gone?! Lots to share but probably the biggest news is that, after 15 months of difficulties with Neve's eating, we have finally had to make the very difficult decision for her to have a gastrostomy. This is where a feeding tube is inserted through the abdomen that delivers nutrition directly to the stomach. Eating (or not) has come to dominate every day and is hugely restrictive on every day activities. So, she goes in to John Radcliffe Hospital tomorrow and hopefully we'll be home in a few days and all will be well. We will still give her food to eat orally but this can be very small portions and the rest can be Ketogenic formula milk delivered via her tube.

We're still hospital-free - 18 months!! Daily seizures remain a constant feature but she has, on the whole, been happy and content. The cold, windy winter weather has meant we have been pretty much housebound and on the few occasions we have ventured out the wind and cold have contributed towards 2-minute seizures and so it really hasn't been worth the risk. Not sure how she will be in the warmer weather due to her photosensitivity and so we will just have to see how much we get outside in the months to come.

We are in discussions with our local special school and Neve will hopefully have a trial at school next term, starting with 3 sessions and hopefully going up to 5 sessions after the May half-term. There are so many things to consider from avoiding potential seizure triggers to ensuring she has no opportunity to eat anything whilst she is there because of her diet and from making sure that she has supportive seating to having a robust emergency plan in place. Still lots to sort out and its exciting and terrifying in equal measures!

3 January 2013

Happy Christmas and a Happy New Year everyone! Hope you all had a lovely time. Neve not too bad as I write. Two biggish seizures over the holiday period (Christmas Day and New Year's Eve - nothing like timing!) and the usual little ones but still no hospital :-) This week: eating good; sleep hit and miss; breath holding horrendous! We are Day 3 into Intensive Toilet Training which is as painful as it sounds (for us!) We are sitting Neve on the loo every 15 minutes but today she's had as many accidents as successes so the jury is most definitely out a to whether she will get it. Unfortunately she just doesn't seem to realise that she needs to go so she might not be ready quite yet.

2013 could be an exciting year for Neve as we are in discussions with our LEA about the possibility of her attending school part-time after Easter. It's going to come round very quickly and I'm already having sleepless nights about it but I'm sure it would be good for her to start mixing with other children and maybe even making a little friend. Its the worry about infection, seizures, managing her diet etc that keeps me awake and it will be a huge change for us both/all.

Neve continues to enjoy her time with her tutors and we are currently working on her articulation, play skills, independent play and fine motor skills. She still enjoys more academic things (letters, numbers etc) but has recently learnt to catch and loves to 'play ball'.

15 December 2012

Neve has had a mixed few weeks. We are still hospital and rescue medication free and have now completely weaned one of her three anti-epileptic medications which is fantastic, especially when one of the known side effects is developmental delay. Her eating has been problematic again though and the breath-holding has been a big issue too. The sound of your child repeatedly gasping for breath really is distressing and even more so when it is all self-inflicted. No-one seems to know why she does it and I haven't come across another Dravet child that does it either. Neve continues to have her 40+ daily little seizures but thankfully nothing bigger now for 10 days.

Instead of sending out Christmas cards this year we have made donations to four wonderful charities that have supported Neve in 2012: Dravet Syndrome UK - who support families whose children, like Neve, have Dravet Syndrome www.dravet.org.uk; The Daisy Garland - who fund Neve's Ketogenic Dietician and who offer amazing advice and support www.thedaisygarland.org.uk; Sebastian Actions Trust - who, amongst other things, enabled us to go on our first family holiday in four years! www.sebastiansactiontrust.org; and Make-a-Wish Foundation -  who granted Neve's wish to have her very own sensory room www.make-a-wish.org.uk We can't thank these charities enough for the support they have given to our gorgeous girl.

Well, nearly Christmas and although Neve doesn't understand what is going on she is rather taken with the musical snowman that comes down from the loft at this time of year. I wonder how many renditions of 'Jingle bells' we will be treated too this festive season! She is also quite taken with Father Christmas although insists on calling him 'Burger'. If anyone can think why please do let us know.

6 November 2012

Goodness where have the last 2 months gone! I'm happy to say that we are 14 months out of hospital despite a couple of colds and half a dozen longer 2-minute seizures. Neve continues to do well with her tutors although as her understanding improves she is getting more and more bossy and her favourite word is 'No!' Neve's language is coming on and we are getting a lot more spontaneous requests 'I want...' 'Open box' 'Where is...?' 'Turn it on' etc which is wonderful to hear and a huge improvement on even 6 months ago. Her play skills are improving and as a result she is breath-holding less as she now has more to do.

She is on the waiting list for a gastrostomy but her eating (chewing and swallowing) has been ok of late and so we dont feel she needs this at the moment.

One of Neve's biggest challenges at the moment is the difficulties she faces with her hands. Her fine motor skills are very delayed and she struggles to do things like hold a pen or fork. She cannot dress herself or manipulate fastenings like buttons or zips and this is obviously going to be a life-long challenge for her. We do work with her every day to try and improve her poor muscle tone and strength and it is both frustrating and rewarding in equal measures! Her hypermobility also means that she sits in the lost unusual positions and recently she sat awkwardly and managed to sprain her own ankle - stretching the ligaments and so making walking very painful. This has improved over the last week but we have put her back in supportive boots to try and limit the damage.

Neve's playroom is finally complete and she is loving this dedicated space. We used monies raised to furnish the room with storage for her toys and her teaching aids and a nice big rug to play on. We applied to the wonderful and fabulous Make-a-Wish Foundation and they granted Neve's wish for sensory equipment and so Neve now has her own bubble tube, mirror ball and projector. All the power points for this were installed by our lovely builders/electrician and paid for by Neve's Trust. I think its fair to say that Neve is in sensory heaven and if she could she would want to thank each and every person who has generously supported her. Seeing her so content is like a huge hug everyday and so its a massive thank you from us too!

2 September 2012

Wow! We made it! One year since Neve was last in hospital! What an amazing milestone given that her previous record (since she was born) was 15 weeks between hospital admissions. And what's more, despite thousands of small seizures in the last year, Neve hasn't needed the horrible rescue medications to stop her seizures either!

We are so proud of you Nevey; you are so brave and so good at taking all your daily medications and eating your Ketogenic Diet. You try so hard with your tutors and despite all your seizures you smile and giggle every day and remind us just how lucky we are to have you. We love you precious girl.

30 July 2012

Loads has been happening - I could be here all night! So, we adjusted Neve's diet (replacing some of the saturated fat with unsaturated fats, increasing her Omega 3 intake, reducing Omega 6, and adding supplements including magnesium, fish oil, and vitamins D and B6) and about three weeks ago the daily seizures finally seemed to stop. After 7 months of up to 50 small seizures a day she finally went 3 days without any seizures. Yippeee! On day 4 she had a 2-minute seizure with no obvious trigger but then we managed another 5 days seizure free. She then had another 2-minute seizure with no trigger and then 3 days seizure-free before the small daily seizures reared their ugly heads again - Pants! So, back to tweaking her diet, adding a few more calories as she has lost 1kg in weight and back to hoping and wishing that tomorrow might, just might, be seizure-free. Those 2-weeks with only 2 seizures were great and Neve was much happier, giggling for no reason, not aggressive and her eating was fantastic so I am more determined than ever to try and stop these daily demons.

Prior to all this Neve's eating had been horrendous again with each meal taking up to 90 minutes! That's up to 6-hours a day feeding her! She was losing weight and we had started talking about a gastrostomy with Neve's consultant as long term this just couldn't continue. Thankfully all good at the moment, with meals taking about 30 minutes, but we are still going to speak to the surgeon in case she deteriorates again. We know several Dravet children who are tube fed and so this outcome isn't unusual.

On a more positive note, the extension is well underway. We have walls and a floor and by the end of next week we should have a roof and windows/doors. So far so good as no mess inside and we have the most considerate builders you could ever meet. They always check before doing any drilling or anything too noisy that could potentially upset Neve and its like having our very own DIYSOS team minus Nick Knowles!

We had our first family holiday this month in 4-years! We went to a wonderful house called The Bluebells. it is run by a charity called Sebastian Action Trust and provides holidays for children with life-threatening and life-limiting illnesses. Neve and Jake loved it! We had a fantastic 4-bedroom apartment and wonderful facilities including a sensory room, art room, games room, music room, hydrotherapy pool, sensory garden, mini golf etc. Nanny and Grandad and Granny and Keith came too and all in all, despite the rain, we had a lovely break and have already booked to go next year.

Two days after our holiday, Graham carried the Olympic Torch in Dunstable. He said it was an amazing experience and his torch runners tracksuit is now lying next to my wedding dress in acid-free tissue paper! He was nominated by Lloyds TSB for all the work he has done for SportsAid and to recognise all his efforts in raising awareness of Dravet Syndrome and raising funds for Neve. We were all so very proud.

18 June 2012

Graham has been back in fundraising mode with his first Triathlon at Blenheim Palace, this time raising £1,500 for The Daisy Garland charity. He will be carrying the Olympic Torch on July 9 in Dunstable (breakfast time) so look out for him on the Red Button or the London 2012 site.

29 May 2012

Well, our little lady has reached the grand old age of 4! Not that she had any understanding that it was her birthday but we had cake and Jake enjoyed opening her cards and presents. Still lots of small, daily seizures but quite happy and affectionate in herself. We had Neve's Special Educational Needs Statement Review this month and everyone was very encouraged by her development and very happy with the programme we are running at home. The meeting was attended by 'Team Neve', including Neve's Physio, Speech Therapist, Educational Psychologist, Autism Consultant and tutors as well as the Bracknell Forest SEN Officer and we felt very fortunate to have such great support for Neve.

We've been looking very closely at Neve's Ketogenic diet and have made a number of changes to try and regain some seizure control. This has included replacing some of the saturated fat with unsaturated fats, increasing her Omega 3 intake and adding supplements including magnesium, fish oil, and vitamins D and B6. It's still early days but hopefully this will all help.

We have used some of Neve's Trust money this month to buy a fantastic spring-free trampoline. These are the safest trampolines you can buy and Neve LOVES it! It is fantastic for her core stability and muscle tone and is something that she can do with her brother. Some days she can go on for 30 minutes without a seizure and other days she can only manage a couple of minutes but we will use it so much in the months and years to come and so a massive THANK YOU to everyone who has donated!

The other BIG news is that we have a start date for our extension - yikes! This means that before the year is out Neve will have her own dedicated therapy/classroom which will be simply fantastic. At the moment we have her equipment and resources in literally every room in the house and to have a dedicated space for her will make such a difference. We will use some of her Trust money to help kit out the room and make it somewhere she will love to learn.

3 May 2012

Our friends and family are doing a great job with all their fundraising efforts for Neve, which is helping us deliver the best possible care and treatment for her. Last year, Greenfield Golf Club raised over £4,500, with a huge amount of time and effort being put in from Nanny and Grandad (Andie & Tim). This year we have some serious physical challenges taking place to raise funds, with Carl and Grant's epic 'Ten's and Five's Challenge' (see Fundraising page), Manu Blanchard's first and probably last Iron Man in the South of France and a team from The Windsor Clinic taking on the 'Three Peaks' . We've also have veteran runner, Andy Davies, taking on a series of events to raise money for Neve. A huge thank you to you all and the very best of luck!

13 April 2012

Lots and lots of small seizures - over 50 yesterday - poor Neve. Unfortunately the seizures do appear to be getting worse and its very upsetting. Sometimes she is able to shake them off but other times she cries through either pain or fear - we are not really sure what. She is also showing signs of agoraphobia - crying inconsolably when out in big open spaces. This has happened on four occasions in the last week or so and they are places we have been to many times before. She just keeps asking 'Alright?' over and over again and saying 'No, no'. Lets hope it is just a passing phase. She has had a cold for over a week now and maybe this is causing the increase in seizure activity - lets hope so.

Breath holding is once again out of control but whereas before it was always when she was sat down now it is when she is standing up. This does make meal times, car journeys etc easier but it is still hugely frustrating and upsetting hearing your child gasping for air dozens of times a day.

Neve is still enjoying her morning sessions with her tutors despite all the seizures. As soon as they arrive she insists on playing hide and seek with her toys and she giggles away as she counts to ten and says 'Coming ready or not'. She has started singing more in the last few weeks and gave us a lovely rendition of Bob the Builder this morning. We had a 'brave' afternoon and took her to a children's theatre production of Hairy Maclary and Friends. She was so engaged and really belly-laughing. it was really quite emotional to see her so thoroughly enjoying the stories and songs and lovely for us to be able to do something as a family. We shall definitely be doing more of this in the future.

Neve was fitted for a special needs trike this week. They are custom-made to fully support the child and have a parental control bar to help her steer and brake and hopefully we'll be able to get this before the summer is out. It will be great to get her out of her pushchair in Windsor Great Park, riding alongside her big brother. We have also been looking at trampolines as Neve went on one recently and loved it - we couldn't get her off! It will be very good for building up muscle tone and strength and trampolines are a valuable tool for therapy for children with autism and sensory integration disorders. It is so amazing to have Neve's Trust money to be able to get this equipment for Neve and we feel so blessed that people have been so generous with their time and money.

4 March 2012

Well done Nevey!! Six months today without any rescue medications or visits to hospital. And over the winter too - wow!!

15 February 2012

Gosh how quickly 2012 is going! Neve is both good and bad. 'Bad' because she is still having daily seizures - some days as many as 40 - but thankfully short (less than 10 seconds) and whilst very tiring for her we haven't been in hospital or needed rescue medications for 23 WEEKS!!! We are obviously very concerned abut the number of seizures she is having and the fact that she hasn't had a seizure-free day since the beginning of December. Her neurologist is suggesting an increase in medications but we are very reluctant to do this at the moment because of all the horrible side effects including developmental delay. We are currently trying subtle changes to her special Ketogenic diet but will obviously have to do something more drastic if the situation gets any worse. The 'Good' is that Neve is doing really well with her tutors and her development is really coming on, especially her language. She loves her morning sessions and is very studious - asking to sort her colours and shapes, do her phonics sounds and counting and play trains and dolls. it really is wonderful to see and hear :-) Having the tutors means that some of the pressure is taken of me to teach her and we can enjoy doing the messy stuff like painting, Playdoh, and sand and water play. We really do feel very blessed that our LEA has funded this programme for Neve and feel sure they will be as pleased as we are at her progress.

Neve's eating has improved in the last few weeks through a combination of cranial osteopathy and also making her food a little softer and therefore easier to eat. She has been assessed and her swallowing reflex in thankfully fine although she does tire very easily when chewing and struggles sometimes to move the food to the back of her mouth in order to swallow it. Sleeping is still a bit hit and miss but generally better than it was and our blanket policy of completely ignoring all breath-holding does appear to be paying dividends. Now if we can just sort these rotten seizures out...

We have decided to be a little braver with Neve this year and have started taking her swimming. She LOVES it! We have been given the use of a private pool and so it is very safe in terms of germs and I can honestly say I've never seen her happier. She calls the swimming pool the 'big puddle' and has a huge grin on her face from the minute we arrive. We are trying to take her weekly and she mentions the 'big puddle' at least 20 times a day in between visits :-)

1 January 2012

Happy New Year everyone! Hope 2012 is a good year. Lots going on here both good and bad. Neve is now 17 weeks without rescue medication and hospitalisation - the longest she has ever gone in her life - and so this is definitely something to be very thankful for. I wish I could say she was seizure-free as well but in the last month she has started having up to 30 small seizures a day. Each one might only last a few seconds but the sheer number are upsetting her with a deterioration in behaviour, sleep and feeding. The latter is most troublesome as meals are taking anything upto 90 minutes each as she seems unable to swallow her food and gets very distressed. it is very stressful for us too as we put her anti-epileptic drugs in her food and her special Ketogenic diet requires her to eat every gram of her food. She has also stopped drinking independently and we have to get 1100ml of water in her every day. We had planned for her to stay on the diet for the next couple of years at least and so are feeling pretty desperate at the moment.

That said it all seems very trivial compared to the terrible news we heard today. We belong to a Dravet Syndrome Support Group on Facebook and heard today that 14-year-old Connor passed away this morning. His parents, Richard and Sarah, are always to first to offer support and advice to other Dravet families and Connor's death has really affected everyone. Our thoughts and prayers go out to Richard and Sarah and their family and friends. Connor's death is a very stark reminder of the risk all our Dravet children are at of sudden unexplained death (SUDEP) and I have been kissing and hugging Neve this afternoon like a mother possessed. Dravet Syndrome is such a cruel disease and I wish more than anything that 2012 is a year where we get a step closer to finding a cure.

17 November 2011

This week saw the start of Neve's home teaching programme. We have recruited two tutors who will each come 3 mornings a week to work with Neve. We are really hoping that this programme will help with her language, social, cognitive and motor skills as well as her creative play. Its all done through play-based activities and hopefully she'll be having so much fun she won't even realise she's learning. Seizure-wise its been a quiet month so far with only one small seizure and a couple of absences. Long may it continue. Have been meeting some more Dravet mums this month which has been really nice and its fascinating to hear how similar and yet how different our Dravet angels are.

28 October 2011

Well, not a bad month all things considered. A few little seizures but nothing requiring rescue medications and the older she gets the less time she seems to need to recover afterwards which is good. We are half way to our target of 15 weeks and 6 days without being in hospital. We had some great news at the beginning of the month - our LEA have agreed to fund a 2 year home teaching programme for Neve. This means that she will have a tutor coming to the house to work with her 6 days a week, 3 hours a day. The LEA will fund it term time and we will fund it for the rest of the year and so all the monies raised this year will be put to very good use indeed. The programme will be managed by an early years autism specialist and we are really excited by what this could mean for Neve's development. We are searching hard for 2 tutors to work with her and can't wait to get started. Her language is continuing to improve and at an appointment today she very clearly said 'Mummy, iPad' - obviously not wanting to join in anything we might have planned for her but rather wanting to play Peppa Pig on her iPad :-) Her behaviour is also improving with slightly less breath holding and much less aggressiveness; in fact she has been very loving and cuddly this month.

We had our first 'normal' family outing ever today braving a children's farm not too far away. Neve loved it, especially getting up close to the sheep and goats. I found it a bit stressful because of the risk of her catching a cold etc and the risk of seizure through over-excitement but I guess we were mainly outside and only there for a couple of hours. Sad really that such an outing should be such a big deal but glad we have done it before the cold weather sets in and its too cold for her to go outdoors.

27 September 2011

Goodness, where have the weeks gone! Well, we got to 15 weeks and 5 days without needing rescue medications and then in the early hours of Sunday 4 September Neve had an hour long seizure due to a severe chest infection :-( We had to give her four lots of rescue medications and she came very close to being intubated again but it did eventually stop. She had a strong course of antibiotics and I'm glad to say has been seizure-free since. If nothing else it has reconfirmed our decision to have her taught at home for the next few years rather than attend a pre-school as she just can not cope with common childhood illnesses. Over the summer we have been weaning one of her anti-epileptic drugs, Sodium Valproate; a drug known to cause developmental delay. We have been weaning it very slowly but in the last few weeks her language seems to be have really come on and we're convinced that it's due to the wean. Her pronunciation is much clearer, she is putting endings onto her words and we are getting more 2-word phrases - all great stuff! We are still having behavioural problems (breath-holding, biting, scratching, head banging) but on good days it isn't as bad as it was and on bad days we just make sure there is a cold bottle of wine in the fridge for when she's in bed! If we want to better our record of 15 weeks and 5 days without rescue medication then we need to get to Christmas Eve - now wouldn't that be an amazing Christmas present!

15 August 2011

Neve's Canoe Challenge went without a hitch (nearly) and we are pleased to say that the team made it to the finish in one piece, albeit various body parts aren't now quite working how nature intended them. It all started on Thursday afternoon with Steve and Mel collecting the team and heading to Henley for the boats. Graham and Steve W had a guest slot on BBC Radio Berkshire to talk about the challenge and Dravet Syndrome. The first night was in Cricklade where we met up with our legendary canoe expert, Rich Harpham and started the search for the source of the Thames. Due to the lack of rain it was barely a stream but determined to do it by the book, we waded in at 5.30am and made slow progress for the next few hours. This involved getting in and out of the boats, fighting through weeds, reeds, swans and fallen trees. Team A even had a couple of swims due to the tight turns and obstacles. We eventually made it to St.Johns Lock (the home of Old Father Thames) and the welcome sight of Mel with provisions and a hot drink. After a long day of pretty much constant paddling we stayed near Oxford and had our broken bodies rebuilt by our personal physio, Katrina. Day 2 started with drizzle and we had about 50 miles ahead of us, which we managed in 13 long and painful hours. Team A with Steve (Olympic) Williams arrived at Leander Club a good deal earlier than us and had the beers lined up and the curry house booked. Considering Steve had only been in a canoe 6 times beforehand and had to pick up Jason's slack, it was impressive but rather disheartening to see him disappear ahead around each bend. Day 3 was 'only' 22 miles which we managed ahead of schedule and the guys did a great job of fundraising at Boveney Lock. We arrived in Windsor at 3pm to a great reception and Neve was there to cheer us in. So far we have raised over £4,000 and we'd like to thank everyone who has donated and supported the challenge. It was a real team effort and that's the last time we'll be in a canoe for quite a while!

9 August 2011

'Physically sick' is the only way to describe how we felt after Neve's latest seizure. She was in the garden and as the seizure took hold and she lost consciousness she crashed on to the paving stones taking the full impact of the fall on her face. Thankfully the seizure self-terminated but her face is now black and blue and very swollen. She has been incredibly brave once again but looking at her lop-sided smile is just a heart-breaking reminder of how horrific her illness is. Today is quite a big milestone as it is 12 weeks since she last needed any rescue medications and we have never gone longer than 12 weeks without being in hospital. She is still having seizures but they are stopping within 2 minutes. The biggest challenge currently is her increasingly 'odd' behaviours and we are talking to specialists about the very real possibility that Neve is ASD (Autistic Spectrum Disorder). Her breath holding has reached a whole new level and now that she has learned to climb up on her chair she does so for the sole purpose of holding her breath. It is incredibly distressing as a parent to hear your child continually gasping for air and we are completely at a loss as to how to stop her. She does it at the table so we have to sit on the floor to eat, in the car, the pushchair and even sitting on your lap! It is so frustrating and as if we haven't already got enough to deal with.

Friday sees the start of the second Neve Challenge and Graham and friends will be canoeing a ridiculously long way in a ridiculously short period of time. See the fund-raising page for more details. Neve says, "Good luck Daddy. I am very proud of you!'

25 July 2011

Only two seizures this month, both less than two minutes, despite another horrible cold and so the diet and/or the increased dose of one of her anti-epileptic drugs (Stiripentol) seems to be doing the trick. We are 10 weeks tomorrow without any rescue medications and so getting a bit nervous as we have never gone more than 12 weeks without all the horrible drugs and being in hospital. The biggest challenge with Neve at the moment is her behaviour. One of the side effects of Stiripentol is aggressiveness and since increasing this drug at the end of May, Neve has been really struggling. A day doesn't go by without her scratching, biting, kicking and head-butting and my hands and arms are literally covered in scratches. She does this if there are noises she can't cope with (crying, shouting etc), if she is frustrated and occasionally for seemingly no reason at all. It is becoming really difficult with friends' children because if they whinge or cry she is likely to scratch them or pull their hair and she even did this to a little boy at the park who we didn't know. Even though we know it is the medication affecting Neve, it does have an impact on our daily interactions with her as head butts to the nose, bites on your leg, and finger nails down your face really hurt and its so difficult to know how to react. If anything, it has made us even more determined to continue weaning her drugs as we heard from a family who found that the behaviour problems all but disappeared when the drugs were weaned and the diet was allowed to work its magic. Unfortunately it has taken us a year to wean one of her three drugs by a third so we have a long way to go - maybe a suit of armour might be a good investment for now :-)

22 June 2011

Well we've had a much better month since our last post. Neve has been on pretty good form and managed 5 weeks with only a few absence seizures. She did have a 2 minute seizure yesterday (caused by the windy weather) but hopefully it was a one-off. She is still struggling with her sleep and we are having at least 4 disturbed nights a week. She is really struggling to fall asleep and then finds it hard to stay asleep and some nights can be awake for up to 3-4 hours in the middle of the night. As well as being exhausting for us, our worry is that if she gets over tired this in itself could bring on a seizure. Sleep problems are common with Dravet children and something we have been dreading as up until now she has been pretty good. There are medicines you can give children to help them fall asleep but we are resisting giving her any more medication for the time being as she has quite enough as it is. She has definitely become more inquisitive in the last few weeks and can now be seen looking out of her bedroom window at Jake and his friends on the school playing field when she should be having her lunchtime nap. She's also getting more bossy and amongst her many demands are 'more nose' (more nose-rubbing at bedtime); 'more ickle' (more tickling); and 'more poo' (more smelling her feet and pretending they are really stinky). The latter has her in hysterics and its a sound you never tire of hearing :-)

20 May 2011

Happy Birthday Neve - 3 today! Can't quite believe our little girl is 3 and what a birthday week she has had! We very nearly spent her birthday in the High Dependency Unit of Wexham Hospital following dozens of seizures in the last couple of weeks. She has had seizure 'clusters', where seizures come within a few hours of each other and whilst each one is only 1-2 minutes long they just keep on coming. She was literally fitting for 2 minutes, crying for 2 hours, eventually falling asleep only to be woken 5 minutes later by another seizure. It really was relentless and her usual rescue medications were doing nothing to stop the seizures coming. After 5 days in hospital the decision was taken to give her a much stronger drug and thankfully that did the trick and we were able to bring her home a day before her birthday. The seizures and the drugs have left us with a little girl who is very hyperactive, unable to concentrate on anything, struggling every night to fall asleep and waking in the early hours. We are hoping that as the drugs wear off these side effects will lessen and we'll have our Nevey back.

10 May 2011

We are once again on the roller-coaster that is epilepsy. Neve has now had 10 seizures in 12 days, including 4 in the last 24-hours. She is thoroughly miserable and is banging her head all the time on any hard surface she can find. She is very unsettled and cannot concentrate on anything or sit still for even a minute. Her breath-holding, when seated, is completely out of control and we are having to sit on the floor at meal times just to get food in her. Poor Neve - if only we could get into her head to see what is causing her so much pain. it could be any number of things causing the seizures: a virus, not enough fluids, constipation, not enough calories in her diet, the recent drug wean we did, the warmer weather, maybe a urinary infection, maybe none of things - who knows?!. It is so hard to know what to do for the best especially as she is showing no real signs of illness - no cough, runny nose, rash...it is almost better when she is ill because at least then you have a definite reason for her fits.

Neve has had such a good couple of months and the contrast is startling. Neve is hardly recognisable at the moment and is it physically and emotionally draining for us all. Even Jake said today that he wished he could have a sister that didn't have epilepsy. Lets hope that this current cluster comes to an end very soon and we can get back the Nevey who only a few weeks ago was laughing and splashing in the paddling pool.

29 April 2011

Neve had a seizure today after being seizure-free for 28 days! Just a small one and no rescue medications needed but she has a slight temperature so we think she is fighting something. Its really disappointing when she has a seizure after being so well but fingers crossed it's a one-off and we can start counting upwards again and get to the magical one-month seizure-free milestone. Watch this space! It's a big night for Neve tonight as she is spending her first night in a bed. She is such a big girl that I am really struggling to get her in and out of her cot and so we have put her in her cot bed, hoping that she will sleep in it peacefully without falling out all the time or going walkabout in the early hours of the morning!

25 April 2011

Neve had one more small seizure on 2nd April but nothing since then which is fantastic. She has just had a shocking cold too but got through it unscathed which is a first. Diet is going well and, unlike last year, she will now keep her hat on and so has been able to go outside without the sunshine triggering a seizure. She has had a lovely Easter playing in the paddling pool in the garden and has been shrieking with laughter at her big brother's antics. A wonderful thing to see and hear. We finally had our Brainwave assessment this month. This assessment looked at her development across seven areas (Visual Cognition, Hearing and Comprehension, Movement, Speech, Hand Function, Self Help and Socialisation) and we now have a play-based, daily programme to do to try and help her fulfill her potential. It was a really interesting and positive experience and has helped to re-energise us. We would highly recommend it to anyone with a disabled child. www.brainwave.org.uk

30 March 2011

26 days seizure-free!!! Yes, Neve has just gone 26 days seizure-free! She has been bright and alert, playing and learning and it has been fantastic. Unfortunately her good run ended today with a short seizure whilst out in the garden but we are praying that it was a one-off and that all will be well tomorrow after a good night's sleep. She had a very busy morning seeing her Neurologist in Oxford, is slightly constipated and it was very windy in the garden and any one of these factors could cause a seizure. We will have a very quiet day tomorrow and see how she goes.

13 March 2011

Following my last entry Neve had two glorious, seizure-free weeks. It really was wonderful. And then it all went down hill again and we had one of the worst times to date. She fell ill with Pharyngitis and was put on Penicillin. This, we now know, reacted badly with her anti-epileptic drugs and she had well over 20 seizures in 2 weeks. It really was a torrid time. As well as the seizures she suffered from: insomnia; loss of appetite; listlessness and then hyperactivity; shocking balance; sudden and unexplained sobbing; and she also lost many of the skills she has acquired. Toys she has played with for a year or more were completely new to her; she couldn't recognise her letters, colours or shapes; she couldn't do her beloved puzzles; she didn't recognise family friends; and her language was almost non-existent. It was absolutely heart-breaking. After five days on the Penicillin, with the Pharyngitis all cleared up but the seizures continuing, we knew something was very wrong and stopped the Penicillin. 24-hours later the seizures stopped and gradually over the following two weeks things have slowly returned to normal. Once again it would seem to be antibiotics that have caused Neve serious additional problems and it puts us, as parents, in an awful dilemma as we feel like we never want her to have any antibiotics ever again! Just hoping that as spring approaches and the winter bugs recede that we can enjoy a period calm. Collective crossing of fingers please :-)

3 February 2011

I'm not sure how to even start this entry as we've had such a stressful couple of weeks. In the last two weeks Neve has had an ear, throat and chest infection which has resulted in: 13 seizures of varying lengths; 8 days in hospital; 5 lots of rescue medication; 3 lots of antibiotics and 1 new type of seizure! It really has been a hellish 2 weeks but once again she has bounced back and is looking far better than her Mommy and Daddy. I won't go into all the details but would just like to mention the new seizure Neve had just in case any one reading this is in a similar position and should ever experience it. She had, what I can only describe as a 'screaming seizure' and it was the most terrifying thing to witness. She was so absolutely petrified and screamed uncontrollably, clawing at me and pleading with me to make it stop. Its hard to describe but it wasn't driven by pain or temper but pure fear and it was so bad that she had to be sedated. She had had strong IV antibiotics and anti-epileptic drugs and talking to another family they have experienced the same thing in a similar situation. its something that i hope she never has to go through again and I am just thankful that she probably has no memory of it at all. A week on and she is her happy, loving self and we are trying to get back to 'normal' family life and trying to catch up on lost sleep.

5 January 2011

Happy New Year! I hope everyone reading this has had an enjoyable festive season and managed to escape all the horrible viruses that seem to be around at the moment. Neve has been reasonably well in herself but unfortunately has had quite a lot of seizure activity over the holidays. We did manage to stay out of hospital (thank goodness!) but Neve has had several small seizures nearly every day which has made her very tired and quite miserable at times. We have adjusted her diet and medications a little over Christmas and so hopefully this will help. Now that everyone is back at work we can pick up with her therapies although we did manage to fit in visits to the Chiropractor and Cranial Osteopath over the holidays. We are just about to start the statementing process for schooling and the Educational Psychologist is coming for the first time on Friday. It is quite a long drawn out process by all accounts but we have excellent support to help us through this process. Neve is really delayed in some areas and less so in others, and in some areas she is possibly in advance of her chronological age. For example, she can pick out an oval shape but couldn't point to her own nose; she can count and recognise numbers up to 10 but can't really clap her hands together; and she knows most of her letter sounds but still cant readily put two words together when speaking. But its the fact that she is still learning and developing, however slowly, that keeps us going and makes us even more determined to help her in any way that we can. Lets hope 2011 is a good year for Nevey.

14 December 2010

Good days and not so good days at the moment but no major seizures for nearly 2 weeks. Quite a few small absences most days, gets very angst and is very wobbly on her little legs but also lots of smiles and giggles. Hasn't got a clue what Christmas is all about but is enjoying trying to pull the decorations off the tree. Neve has recently learnt to say her name and when you ask 'What's your name?' she responds with great enthusiasm 'Neeeeee'. Very cute! She's also joining in with my singing and we now do a great rendition of 'One Man Went to Mow' - eat your heart out Take That!

30 November 2010

Here we go again! Got to Saturday and thought that we had managed to get through Neve's cold without a seizure but then on Sunday her cold seemed to take hold again and she had two one-minute seizures. Then on Monday she had one for 15 seconds and then a massive one that lasted nearly 40 minutes! As the last seizure took hold she fell and banged her head on the door and injury is always a risk now that she is mobile. A&E was incredibly busy and the sights, sounds and smells made it really not a nice place to be - I'm just glad Neve was still completely out of it. It now appears that Neve has an ear infection as well and so we have started a course of antibiotics. We stayed in overnight and got home just before lunch time today. Despite the seizure, the drugs I had to administer to stop it, the cold and the ear infection she's not been too bad at all today. It never ceases to amaze me how she manages to bounce back time after time - she really is one amazing little girl.

21 November 2010

Good news and not so good news this week. The good news is that after tweaking her special Ketogenic Diet a little her absence seizures have reduced by 80% which is fantastic. Neve also had a developmental review this week by the Community Pediatric Consultant and he was 'very pleasantly surprised' by how much progress Neve has made during the last 6 months, especially given the number of seizures she continues to have. The not so good news is that Neve has come down with a shocking cold and is feeling thoroughly miserable. We are desperately trying to keep her temperature down as have ended up in intensive care due to coughs and colds in the past. Fingers crossed it doesn't linger too long. The hospital bag is packed and ready in case we need it.

14 November 2010

Spoke too soon again. Seizure yesterday whilst in the garden. We had only been outside 10 minutes but that was enough over-exertion to trigger a seizure. Thankfully stopped after a couple of minutes but she was really unhappy for the rest of the day. Fingers crossed for a better week to come.

13 November 2010

A strange week for Nevey. No big seizures but lots of small absences - up to a dozen a day that we're seeing. They last up to 5 seconds and afterwards she looks at you as if to say 'What was I doing?' Weather not great so indoors a lot but always lots of playing to do to keep us busy.

4 November 2010

Neve has bounced back after Sunday's adventures. She is happy and enjoying playing with her toys. Her new special needs table and chairs arrived on Tuesday and this gives her lots of support whilst she is doing puzzles, colouring etc. She has even learnt to recognise her numbers 1-5 this week - well done Nevey!

1 November 2010

A big seizure yesterday requiring 4 lots of rescue medications. Neve air-lifted to hospital but fortunately it stopped after 30 minutes so escaped intensive care. 8 weeks since her last hospital admission but can't help but feel that this could be the start of a very long winter. No obvious trigger for seizure yesterday although she was sneezing in the morning. Ambulance/Air Ambulance crews fantastic as ever. Neve very wobbly today but has improved as the day has gone on. Lets see what the next few days bring.

23 October 2010

Spoke to soon! Neve seems to be coming down with a cold and cough and had 2 seizures yesterday as a result of a raised temperature - again thankfully short and self-terminating. Even these short seizures take it out of her though and she will need to sleep for up to 2 hours straight afterwards. Got up at 3am to give her Paracetamol and thankfully we didn't have any more seizures in the early hours. Not too bad today all things considered although her walking is very wobbly and she has fallen over a great deal. She is very brave though and rarely cries - despite her little legs being covered in bruises. Fingers crossed the cold doesn't linger for too long.

17 October 2010

Neve has had a mixed few weeks. Averaging 2 seizures a week, thankfully all short and stopping on their own without the need for rescue medications. She has had horrible nappies (hope no-one is eating while they read this!) and so thinking she may have a slight tummy bug. Did another very small drug wean a couple of weeks ago. Very difficult to know whether the seizures she has had since are as a result of this but we are weaning incredibly slowly so I think unlikely. Another drug wean due tomorrow but will wait and see if her nappies return to normal first. Developmentally we are taking a few steps forward - never has a Mommy been so happy that their little girl can finally put large pegs into a peg board and a bottle of milk into baby's mouth! We've also had a couple of new words and she seems to be understanding a little bit more too. As a result of everyone's incredible generosity we have just started with a new private Physiotherapist and also a Homeopath. Hoping that we can boost Neve's immune system through Homeopathy as the next few months could be very tough indeed what with all the Winter bugs lurking around the corner. Last Autumn/Winter, as many of you reading will already know, Neve was in intensive care four times as a result of uncontrollable seizures as a direct result of coughs, colds and stomach bugs. Let's pray that this is not something that is repeated this year.

25 - 27 September 2010

Graham, Andy, Jason and Emmanuel (on day 3) have completed their cycling challenge - and what a challenge it was! After a very tough 300 miles of cycling they rolled into Windsor to a fantastic welcome and most importantly to a big hug and kiss from Neve. A huge thank you to everyone who has donated. The boys really did take their bodies to the brink and Tim did an amazing job driving the support car and keeping them on track. Graham already thinking about his next challenge so watch this space..!

13 September 2010

Neve had her 101st seizure today - not a milestone we ever wanted to reach and this doesn't include the dozens of brief absences and myoclonic jerks that she has too. She has had a difficult week as she had a huge 45 minute seizure at 4.30am on Monday, 6 September. This was caused by a fever from the Hand, Foot and Mouth disease and we had to give her 4 lots of horrid rescue medications and we were in hospital for two days. Thank goodness she sleeps hooked up to a Pulse Oximeter that measures her oxygen levels and heart rate. If this hadn't alarmed (her heart rate was 234 beats per minute!) we may not have heard her and this just doesn't bare thinking about. No idea what caused today's seizure as she was in her pushchair at the time collecting Jake from school. It only lasted a minute but wiped her out for the rest of the day. It really feels relentless at the moment - she isn't going more than 3-4 days without a seizure. Poor Nevey.

5 September 2010

Neve airlifted to hospital yesterday following a 12 minute seizure. She has Hand, Foot and Mouth Disease which is very common in young children although we've no idea where she has contracted this from. We brought her home after 5 hours and she had a reasonable night. She is not great today so keeping a close eye on her. Unfortunately rescue medications given to stop the seizure and so our new record to beat is 11 weeks and 2 days. We have been asked quite a few questions recently about Dravet Syndrome and so have added some more to the 'About Dravet' section.

3 September 2010

Click on the link to read the article about Neve in the the local papers. Ascot News Link - The Villager - Bracknell Standard

30 August 2010

We started the drug wean this week with a very small reduction in her Sodium Valproate. Going well until Saturday when she had 3 seizures in just over 24 hours. Two of these seizures were what is known as Todd's paralysis. Todd's paralysis is a neurological condition experienced by individuals with epilepsy, in which a seizure is followed by a brief period of temporary paralysis. in Neve this saw her lose the use of her arm for about 10 minutes after the seizure. Apparently Todd's paralysis may also affect speech and vision. The other seizure was a drop attack where one minute she was standing and the next she was lying on the floor. All very frightening and we are all feeling a bit frazzled to say the least.

21 August 2010

Neve's seizures averaging 2 a week at the moment but for the last 9 weeks now they have all been under 2 minutes. They still knock her out and she is very tired, disorientated and distressed for a couple of hours afterwards but no rescue medications and no trips to hospital - long may this continue! Neve's diet prescription has been changed this week as she was showing signs of being really hungry - so now she gets extra strawberries and cream for breakfast! She definitely seems to have more energy as a result. Her Neurologist has agreed to a very slow wean of one of Neve's antiepileptic drugs and so we are going to start that on Monday. The diet works best with as few drugs as possible so this is a major next step. We are feeling excited and nervous in equal measures and praying that we don't get any major breakthrough seizures.  Neve's development has plateaued of late and so it will be very interesting to see if this picks up again once we start reducing the drugs which in themselves are known to cause cognitive impairment. Watch this space!

9 August 2010

Another seizure today - possibly due to slight overexertion - but again it stopped of its own accord without the need for her rescue medications. We are no longer keeping track of the number of days between seizures as they are happening just too frequently. Instead we are keeping positive by focusing on the number of days that have passed when, despite multiple seizures, we haven't had to give her any horrible rescue medication and as of today that is 7 weeks and 4 days! Our longest period before (pre-diet) was 10 weeks and 5 days so watch this space.

5 August 2010

Another nasty ear infection has seen Neve have 7 seizures in a week! Thankfully all less than 2 minutes and no trips to hospital although the she did have a seizure in Car Phone Warehouse which was different! Balance very poor at the moment and lots of falling over but she is determined to walk and keeps getting back up. Hoping for some better health before the Autumn.

16 July 2010

Not sure where the last month has gone. Neve has been in hospital again this month with a very nasty upper respiratory tract infection. She had a very high temperature, swollen tonsils, ear infection, nasty all-over rash etc but amazingly, despite all this, only two seizures both less than a minute in duration. We are accrediting this to the Ketogenic Diet and feel very positive that it is starting to help Neve. Even a couple of months ago Neve would most definitely ended up in intensive care with such a nasty virus but this time we were at our local hospital and whilst she was very poorly the seizures were pretty much kept at bay.

19 June 2010

Gosh what a week! We seem to have entered a new phase of this horrid condition and Neve has had 8 seizures in less than a week. They have all been as a result of being outside and the thought that she can't even enjoy fresh air in the garden or local park is a very depressing one indeed. She had a big seizure on Tuesday which stopped after 25 minutes and 3 lots of rescue medication. She was taken to Wexham Hospital by ambulance which was no mean feat as Royal Ascot had just finished and the traffic was horrific. The same happened on Thursday when she had 5 seizures in quick succession and we had to battle through Ladies Day traffic. Today (Saturday) she has had 2 more, although shorter, and so we felt able to stay at home. Each seizure leaves Neve very miserable and disorientated and we always imagine that her head and limbs must really ache. Have emailed her Neurologist to ask for his thoughts and until then will continue to watch her every second of the day.

13 June 2010

Neve is progressing well, although has had three small seizures in the last week, attributed to being too hot and over-exerting herself. This was only 5 minutes playing football with her brother and so we are concerned how this will limit her.

13 May 2010

Good news and bad news. The bad news is that Neve had another seizure yesterday evening - the rigid/turn blue variety which lasted 2 minutes. The good news is that she came out of it without the need for her rescue medications and she recovered really well. We didn't take her into hospital as they are still rife with winter sickness bugs. She has been tired today but on good form all things considered and no more seizures so fingers crossed that's it for a while.

1 May 2010

What a difference 10 days makes! Neve doing really well. Ketogenic Diet going well, she has lots of energy and what's more she has started walking! So proud of her and just thrilled that she is walking before her second birthday. Big smiles!!

20 April 2010

We seem to have turned the corner. Neve still very wobbly but we have had lots of gorgeous smiles this morning and she has started eating again. She really is remarkable!

18 April 2010

We've just had possibly the worst week to date. Poor Nevey. She started being sick on Monday night - literally every 5-10 minutes for 5 hours! The vomiting only stopped as the seizures began and eventually she had to be intubated yet again. We spent a couple of days in intensive care in London before coming back to Wexham were she was treated for pneumonia and gastroenteritis. We brought her home yesterday but she is still very weak, wont eat solids and is very chesty. We are all very bruised and battered but hopefully we are over the worst.

12 April 2010

Just out of hospital following another seizure yesterday. This one was brought on by a slight temperature due to a cold. Managed to stop it after 20 minutes but took three lots of rescue medication. She was very distressed afterwards but then slept and woke up calmer. Poor Graham and Jake were half way to Cornwall when it started and had to abandon their holiday! Neve's illness affects our whole family every single day.

8th April 2010

Can't believe it! Neve had got to 10 weeks exactly without a seizure and then had one this afternoon. It appeared to be brought on by strobing on a friend's television screen. Managed to stop it after 20 minutes with two rescue medications. Had to smile as paramedic thought I was the local GP! One positive is that she bounced back quicker than ever before and we only stayed in hospital for 5 hours. (Previously we would have been in overnight at least.) Thinking it may be due to the diet. That was seizure number 60 and hospital admission number 27 (not that I'm counting!).

31 March 2010

Neve doing well this week. It's now 8 weeks and 6 days since her last major seizure. Ketogenic Diet going ok and Neve is in 'Ketosis' which means she is now using the fat in her diet for fuel rather than carbohydrates. The bi-product of this is ketones which can help to reduce seizures. It's early days but things are looking quite positive.

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