new here - 9 yr son with seizures

[mel]

Hi - I am new to this forum. I have a little boy - christopher, who is 9. He suffers from autism, SLD, and seizures.

His seizures are tonic clonic which often go into status - last one was 5 weeks ago and went on fully for 50 minutes. Its the first one he has had for years so we are a bit concerned. He also has complex partials when unwell and absence seizures regularly.

He has severe learning disabilities and autism. He is not on any meds at the mom as he was weaned of epilim a few years ago when the seizures stopped. We are trying now to see what the seizure type and pattern is before considering meds again. (TBH don't want to go down the med route is poss as he has just started talking - 10 words - and just got toilet trained in the last 6 months)

We do however now have midazolam for emergency situations.

Would love to hear from any other parents.

 

[Dutch mom]

Hello and welcome Mel!

My son just turned 11 last month. He has Lennox Gastaut syndrome and is a special needs child as a result of braindamage. Between 2 and 6 years he has been on many AEDs but none of them helped to control his seizures, instead he suffered many side effects from the meds. Six years ago he started on the ketogenic diet. The result of this diet is a significant seizure reduction and a significant improved EEG. We've weaned off all aeds about five years ago. Only incidently we have to use liquid clonazepam (drops) for emergency situations.

 

[mel]

Your son looks so cute!

I find myself worrying all the time at the moment though as I know how much damage the longer seizures can do. We are lucky that they are so spaced out time wise. He had alot of "febrile" convulsions between the age of 6 mths to 4 years - a few were status and he ended up in PICU a couple of times. He went on Epilim which done the job and was weaned of at 5 years old successfully.

He then had a generalized tonic clonic at 7 years old and I suspected absence seizures too which the ped. was not convinced about (but then nor was my husband!) The tonic clonic was normal duration and stopped by itself so no worrys there. Fevers now usually come with complex partial seizures which i videoed for the ped and she immediately dx them as such.

Then wham! like a punch to us another seizure hit 5 weeks ago. Playing outside and came in for a bath (hottest day of the year so far), sat in bath and had an absence which when we lifted out of the bath as soon as we realized he started jerking and I phoned for ambulance. He had breathing difficulties with the seizure and when in Resus. at hospital he was put on Phenytoin intravenoulsly and lorazepam. He was intubated and MRI'd which ruled out any changes in the brain.
He stopped fitting after 50 minutes.
I am happy to say he has no ill effects from it. Me- I am a walking nervous wreck now!
We left hospital after a couple of days armed with midazolam for the "next" time.
Great!
I and his ped. are stuck because where as I know it is a life threatening situation to get into status he is not having them reg. enough for me to warrant meds.

He has had testing for fragile x, woods lamp test for tuberous sclorisis, Angelman syndrome, and genomic hybridisation, MRI and EEG. Most were years ago.

I am thinking now along the lines of Generalized Epilepsey with Febrile seizures + (GEFS+) which is to do with sodium channels and inhetited epilepsey (I have epilepsey)


Sorry - I have really gone on to much!

Thanks for taking the time to read.:soap::soap:

 

[Bernard]

Hi mel, welcome to the forum. :hello:

My wife used to have multiple, daily absense seizures, but hasn't had any in over a decade now since she used EEG neurofeedback. Neurofeedback has also been used successfully for treating autism:

http://www.coping-with-epilepsy.com/forums/f22/neurofeedback-autism-3073/

 

[hootie]

Hi! Welcome!

My son is 11 and started having absence seizures last summer. He is also "on the spectrum".

He is taking Depakote, which seemed to control the seizures at first, but then the seizures started increasing. The neuro wants to increase the Depakote but I am reluctant.

We tried about 50+ sessions of neurofeedback. The seizures were decreasing in the area trained **on paper** (the QEEG) but his seizures seemed more frequent and longer. Not sure if this was due to Depakote or NFB.

About 6 weeks ago, I decided to keep him at 2 caps of 125mgs of Depakote twice a day and went to a TCM practitioner. He was put on a bunch of herbal blends. His seizures started decreasing. About 3 weeks ago, the herbs were doubled and I have not seen any seizures.

We have also found that potato products increase his seizures. We have eliminated potato from his diet.

 

[mel]

Thanks for the advice.

I am really in a wait and see position at the moment but I think if the situation did get more regular with the tonic clonics (I hope to god that it doesn't) then diet would be on of the first things I would discuss with the doctor. We have done 2 year long attempts at gluten free and casein free diet for our son to help his autism. It helped his bowels but that was all!

I hate the waiting part the most and not being able to do anything proactive - its not in my nature!