New here, on behalf of my 10 month old. . .

[Brey]

Hi!
New to the "seizure world". I'm still researching and trying to learn the "lingo". My daughter had her first seizure just before she was 7 mos. She has had a total of 4 in the past 4 months, which from what I've been reading, really isn't that bad. However, the length is what scares me. The first 3 were 10-12 minutes long. The fourth one lasted about 30 minutes or so. They have always been on one side of her body (unilateral?). We just got some genetic test results back (which she is giving more blood for more thorough results in a couple weeks), and she was diagnosed with Dravet Syndrome. I've read so much about it and it scares me to death. She has been taking Keppra 2.5 ml 2x for a little over 2 months now, but will be getting weaned off (happy about that - I SWEAR it makes her have tantrums!) She has started Depakote 1 ml 3x (Valproic Acid - assuming that's the generic one) and will be starting Frisium soon - just picked those pills up this week. I guess I am just looking for someone who has this to tell me everything's going to be ok. From what I've read on here so far, you all seem so knowledgable, helpful and kind. If anyone has any input on these drugs (mostly frisium), that would be appreciated too!! There are only like 2 pharmacies in the US that can get it?!? And it isn't covered by insurance.
Thank you for reading!

 

[Wobblez]

Hi Brey, welcome to the forums.

Wow, that's unfortunate that you have to deal with this with such a young bub but at least the docs know what's going on and can treat her. Next time she has a seizure, remember she isn't suffering. When I fall unconscious I wake up from the nicest, most relaxing dreams! I am always wandering through fields of daisies or wheat and chatting to friends, it's quite clique'd really!

As a child I used to get one side of my body that was partially paralysed and I couldn't walk in a straight line, I could only walk in circles but I learnt to deal with this and still find ways of getting my mum's attention. I look back and realise that as I was diagnosed at 3, I grew up with Epilepsy really quite well. It never stressed me, I knew mum was always there and my teachers would help me if I fell. Now that it appears to have resurfaced it's more distressing as an adult because I am obviously alone a lot more than when I was a child.

I don't know anything about Dravet Syndrome, can you tell us more?

Big hugs, stay strong she'll get sorted soon, its just a matter of finding the right dosage of meds. And here's a bonus, lots of kids grow out of their epilepsy. I had a ten year break where I was totally fine and off medication completely. I haven't yet been diagnosed so my issues may not be epilepsy now either...fingers crossed.

 

[Dutch mom]

Hello Brey,
Welcome on CWE.

Forgive me if I don't find the right words because English is not my native language. I can relate to how you must feel, reading about Dravet syndrome on the internet, finding information and stories you don't want for your child. I've been there myself, many years ago, but I do remember how I felt like it was yesterday.

I would like to tell you everything is going to be okay with your daughter and I regret I can't. Dravet is not a 'good' diagnosis at all and it has no good prognosis for seizure control and development of your child. It's not a type of epilepsy that will go away and the genetic disorder will have consequences for your child's motor and coginitive development. Some children with Dravet only have a learning disability but many kids have a developmental delay/are mentally handicapped and many don't talk. Most of them do learn how to stand and walk but they do walk instable (bit like a 'drunk kid'), often a special needs stroller of wheelchair is needed.

To give her the best chances it's important to try to get the seizures as well controlled/reduced as possible. Beware of overheating because many kids with Dravet don't sweat. When they get too warm (warm summer, overdressed, physical activities), they usally end up in the hospital with a severe status, just like a fever can cause this. Longer periodes of non convulsive statuses (NSCE) are common in many older Dravet kids.

My 11-year old son has Lennox Gastaut syndrome (LGS) which is one of the 'maligne' childhood epilepsy too, an epilepsy syndrome with many similarities to Dravet syndrome/SMEI: similar development of various seizures that usually are med resistant and usually cause cognitive retardation. LGS has no genetic cause like the SCN1A-chromosome deletion in Dravet; my son's LGS was caused by braindamage.

I do know many kids with Dravet (and their parents) in the Netherlands from the internet (a Dutch forum) and I have met many of them in real life (my best friend has a son with Dravet.)

Many of these kids use Frisium (clobazam) as adjunctive med to AEDs, succesful meds (in terms of seizure reduction) for Dravet are Topamax, valporate (Depakote/Epilim) combined clobazam/Frisium. Midazolam (Dormicum) is usally used for seizure intervention (nasal spray and sometimes IV.) There is a contra-indication for Lamictal which aggravates seizures in Dravet.

In the last few years the new med Stiripentol (Diacomit) is prescribed specificly for Dravet (usually combined with valporate and frisium) which seems to have a positive effect on Dravet seizures, especially on the NSCE's. Some kids with Dravet I know are far more better since they are treated with stiripentol.

The ketogenic diet has also proven to be succesfull for about 50% of the Dravet kids who have tried it (my son is on this diet for 6.5 years now, AED free with a significant seizure reduction.)

My son has used Frisium for several years, in our country it's a far more regular med for epilepsy. But it's tricky stuff too because of the addictive effect (the body gets used to it very fast.)
Here you can read more about clobazam on CWE:
http://www.coping-with-epilepsy.com/forums/f23/epilepsy-benzos-11161/
http://www.coping-with-epilepsy.com/forums/f23/anyone-been-clobazam-10364/
http://www.coping-with-epilepsy.com/forums/f23/adding-new-medication-clobazam-7107/

Wobbelz: for more information about Dravet, a Dutch father I know has made this website about Dravet syndrome http://www.dravet.com/dravetuk.htm (languages Dutch and English) where you can read more about Dravet in several files, stories and links .
And here http://www.coping-with-epilepsy.com/forums/f23/dravet-syndome-3104/ I posted several links to websites/files about Dravet.
For searching on Google use 'SMEI' (Severe Myoclonic Epilepsy in Infancy.)

 

[Brey]

Thank you!
I'm sorry you don't have a diagnosis - that's one of the hardest parts - the "not knowing"! I'll keep my fingers crossed and prayers will be said for you!
I'm still trying to learn more on Dravets, it's rather rare. From what I've read so far, she may always have it - obviously I will be looking into other options, like the ketogenic diet (once she's older). I don't want her to be on all kinds of drugs for forever. We don't even keep aspirin in the house - I'm one for trying natural methods, however in this case, we need to treat aggressively, so meds are the way to go.
One study said 85% of kids that have this will make it to adulthood. That scares me. There is a good chance of developmental delays (right now - she's my little genius - I think she may even be smarter than her 4 yo brother! lol).They say the delays may not be noticeable until age 2 and they should stabalize by age 4. I'm hoping, and so is our ped neurologist, that if we can get the seizures to stop for a long enough period of time, maybe her brain will forget how to have them. Don't know if that's something that is possible, but it's nice to think about it!!
If we can keep the seizures minimal, maybe there won't be much, if any, damage. I still have some hope for now, we are not sure how bad the genetic mutation is. It could be minor, if that's the case, she may not have Dravets, it may be one of the milder forms of epilepsy. I'm bringing her to a genetic counselor on the 29th, more blood will be taken - more thorough than the last one, supposedly. Will take 6 weeks to get the results tho.
I just take it one day at a time, hope for the best and enjoy every moment with my little angels - that's all anyone can do, right?
Thank you for reading and replying!!! Any and all support is so important!! Hugs to you Wobblez!!

 

[Dutch mom]

Hi Brey,

like the ketogenic diet (once she's older).

The ketogenic diet is far more much easier to do when a child is (very) young. There is a ketogenic formula called Ketocal for baby's, toddlers and kids that are fed by a G-tube. Older children have a very restricitve diet which is far more difficult to comply to and more difficult to calculate and to cook. Younger children maintain adequate ketosis better. I do no many baby's (10 month and up) on this diet. The side effects are less severe compared to the side effects of meds and the effectiveness in med resistant childhood syndromes is far more better than with AEDs. On www.matthewsfriends.org you can subscribe to a forum where are many parents who have small children on the diet.

 

[Dutch mom]

FYI: http://en.wikipedia.org/wiki/Stiripentol

Diacomit is indicated for use in conjunction with clobazam and valproate as adjunctive therapy of refractory generalized tonic-clonic seizures in patients with severe myoclonic epilepsy in infancy (SMEI, Dravet's syndrome) whose seizures are not adequately controlled with clobazam and valproate.

• December 2001 - Treatment of severe myoclonic epilepsy in infancy (SMEI). EU orphan designation number EU/3/01/071.

Being an orphan drug prescription stiripentol is funded.

 

[Brey]

Dutch mom,
Thank you!!! Yes, I've read those articles - they make me sick every time I try to do research, trying to find anything to help my daughter, Bailey. I believe we can get her thru this with minimal "damage". We caught this early and will be starting her on Frisium tomorrow. I'm hoping starting her on some of these drugs early can maybe help her from getting worse. We have a wonderful ped neurologist - he's from europe (not sure where), so he's familiar with the drugs you mentioned, which I am thankful for.
I'm trying to stay positive. I'm not that strong - I don't know how you or any other moms do it. It's got to be that "mom instinct" that keeps us going. lol
Thank you so much for those links and your support!!! Good luck with your sons continuing success with the keto diet (will definitely try that once Bailey's older - she's too little now).
Keep positive and stay strong mom!

 

[Brey]

OMG! Really?? I didn't know babies could do this diet - this is all so new to me, I didn't think that was possible. I will DEFINITELY check that out!! Thank you again mom!! However, if there is a bottle or cup she needs to drink out of, that could be a problem - I'm still nursing her! I know I need to get her to drink from something, other than me, but with all she's been going thru, it's a comfort thing and I can't take "the girls" away from her yet. lol I am so looking into this tho!! Thank you!!

 

[Dutch mom]

Normal Ketocal ratio 4:1 for kids age >1 year http://www.shsna.com/pages/ketocal.htm

Ketocal Infant ratio 3:1 for baby's and kids 0-3 year http://www.shs-nutrition.com/no/shs-produkter/ketocal_infant

Ratio 3:1 instead of (the usual) ratio 4:1 = 3x as many fats as carbs + protein together.

Indications and Prescribability:


Ketocal Infant can be used to administer the classical long-chain triglyceride (LCT) ketogenic diet (3:1) for the dietary management of intractable epilepsy and other disorders where the ketogenic diet is indicated e.g. disorder of carbohydrate metabolism such as pyruvate dehydrogenase deficiency and glucose transporter type-1 deficiency.

Ketocal Infant can provide complete nutritional support or supplementary feeding for infants and young children from birth to 3 years of age.

A food for special medical purposes.

 

[tase37]

Hi!
Just wanted to send you a big hug from Finland.. My baby is 3 months tomorrow and we don't know for sure has she got epilepsy or not..she had her first seizure when she was 2 days old.. spent 3 weeks in ICU!

 

[Dutch mom]

Big Hug back from Holland. My son was in PICU for 3,5 weeks since he was 2,5 days old, I know what you've been through and still go through. It took a long time before we had a diagnosis. I do hope she will be seizure free. Take care.

 

[RobinN]

Hugs to all these little ones. So very difficult to watch when they are so helpless.

My daughter was 14 when she had her first TC, and I will always remember how it felt.

Blessing to each one of you.

 

[kiki03]

Hi,
I have a son who was diagnosed with Dravet syndrome at the age of 8 yrs old and started have seizures at the age of 8mths. Its been a roller coaster for him. He is now on Frisium, Verapamil (used for Dravets), Depakote and the keto diet. We are fighting insurance for the Stiripentol. Frisium will be approved this year through he FDA...we can't wait.. If you want to contact me, PM me. It is an awesome feeling to be able to contact other families that are trying to cope with Dravet syndrome. I can also help put you in contact with families that may be close to you too. Just let me know.

Kimberly Skriba