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VixenMum

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Hello, everyone. I'm new to the forum. I'm one half of a valiant parenting team, caring for a 10 year old with drug resistant epilepsy and ASD. I am from the UK and interested to hear from anyone who might be going through what we're going through right now. Our daughter was diagnosed with epilepsy at the age of 5 (having had 5 tonic clonic szs within 7 weeks). Her epilepsy was controlled with medication (sodium valproate) for 2 years. Doctors thought it had gone into spontaneous remission so meds were withdrawn. All was good until 5 months later she started have szs again, but these were different. We were introduced to myoclonic, atonic and absences. She went back on sodium valproate and Lamotrigine (Lamictal in the US?). She experienced more than 30 of these a day and went on to the classical ketogenic diet as well as meds. We had mixed success on the diet until last August when she became sz-free for 6 months. That was until 2 Feb when she had a tonic clonic sz. Since then her epilepsy has worsened to such an extent that she is experiencing several hundred szs a day (mostly absences but 15-20 myoclonic). We are seeing the neurologist next week and I am going to request a repeat MRI. Her last scan was when she was 5 years old. Her neurologist told me last year that if my daughter's condition didn't improve our only option was to review the medication. Has anyone else experienced the same or something similar? It's likely, almost certain, that my daughter will have to live with this condition for the rest of her life and I simply can't accept that meds are the answer. I'm sure there's a lot of research taking place in the US, of alternative treatments, which I won't be familiar with, so I'd just like to ask whether you have any advice or can direct me somewhere for further information. For example, I've read about Trigeminal Nerve Stimulation, which isn't available in the UK right now. Does anyone have any experience of this? Thanks so much for taking the time to read this. Very best wishes.
 
Hi VixenMum, welcome to CWE!

I hope others will be able to chime and help with your situation. I think we do have some mmebers with children with co-occurring epilepsy and ASD. I know it must be tough to feel like your treatment options are limited.

We do have several members who are now being treated with VNS or have tried it in the past. I think that TNS is still awaiting full-approval for use here in the U.S as it is in the UK. There was a study done by King's College in London, so you might be able get information about pending availability of the treatment by contacting them.

Best,
Nakamova
 
Don't think there is much chance of seeing anything on imaging if she has generalized seizures, but there can be lesions for some generalized epilepsies that surgery helps. Might be helpful to see about genetic testing as it might point to better treatment option. If it's worse because she's starting puberty, can they possibly delay that or otherwise see if there is some way to help things hormonally?

Lamictal is the us brand name for lamotrigine, my child takes the generic (lamotrigine). Currently controls atypical absence and myoclonic. Current doc likes to have the partial base covered since initially the dx was partials (he wasn't around for that, episodes were classic abdominal SP, gustatory SP, olfactory SP, staring CPs and one not classic pain that responded to meds that only treat seizures) but the partials are very rare now. It doesn't follow any classic aggravation from meds so I can relate to changing seizure types feeling strange. Expect we'll know more when puberty hits. Still, have met a few other families where they delayed puberty (those kids also had vns). Hoping TNS turns out to be as viable.
 
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Hi VixenMum, welcome!
saying-bye-bye-smiley-emoticon.gif
 
Note -- this is an older thread....
 
The Necro-thread virus is spreading rapidly through the internet, Old dead forum threads will be coming back to life, sort of, you know, ZOMBIE THREADS!!!
 
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