seizures - epilepsy?

iVillage Member
Registered: 01-11-2005
seizures - epilepsy?
6
Tue, 01-11-2005 - 9:46pm

Hi, I am hoping someone may have some ideas or can give me advice.

My friends son has just turned 2 years old. he had a lot of problems at birth, group b strp, meningitis plus a couple of other infections. he has severe cerebral palsy, eyesight problems and epilepsy.

When born, he was put on phenobarbitone to control the seizures, this sort of worked, but left him like a zombie. At about 1 year old, the drs changed the medication to tegratol(Australian brnad name - i think). The effect on the seizures was the same as the phenobarb, but at least gave him a bit of personality as he isn't zombie-like all the time.

The incidence of seizures has begun to increase and the drs want to change back to phenobarb, which the parents are not keen on. In fact, dad is not sure that they are 'real' seizures as they are brief, brought on by cold (ie, bath water too cold, or moving from a warm room to a cold one) or when he is angry (his brother steals a favourite toy, or when put to bed when he doesn't really want to go) and he can be bought out of them by rubbing his hand or giving him a cuddle. Each seizure presents as a complete stiffening of the body - sort of like a baby's startle reflex, but then he gets completely "stuck" in the startle position - he had his longest episode for about 8 minutes the other day where he was just 'frozen'.

If you haven't guessed, I know really little about epilepsy but don't want to see this gorgeous little boy turned back into a zombie on phenobarb. Do these incidences sound like epileptic seizures, what other medications may be an alternative. He isn't the world's greates eater due to his cerebral palsy so the ketogenic diet is not really an option.

Thanks,
Caroline (mum to Siobhan 3/2000; severe cerebral palsy; g-tube 6/2001; fundoplication 7/2002; puree real food via gastrostomy 7/2004)

iVillage Member
Registered: 03-19-2003
Wed, 01-12-2005 - 8:07am

Hi Carolina and welcome....I'm Jan one of the cl's on the board.

 


 



Avatar for bahama_mama_llama
iVillage Member
Registered: 04-22-2003
Fri, 01-21-2005 - 12:37pm

Hi...I'm a lurker on this board. My daughter Alex has a multitude of issues, one of which is seizures. She has a complete agenesis of the corpus collosum which is something that can cause seizures. She currently takes Tegretol but we don't like that one since she has NO desire to do ANYTHING. She will just lay there...no kind of life. We are trying to get it switched. We spoke to an endocrinologist on Wednesday & he said hypoglycemia can also be a cause for seizures so you may want to get your son tested for that. Just an idea...otherwise I would ask them for something else besides pheno barb...there are so many other options out there & IMO pheno barb is one of the worst.

Stefanie

Stefanie

 

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iVillage Member
Registered: 03-19-2003
Fri, 01-21-2005 - 9:55pm

Hi Stefanie and welcome...it's good to see you again.

 


 



iVillage Member
Registered: 02-19-2004
Sun, 01-23-2005 - 11:46am

Hi Stefanie and welcome. I wish I knew what to tell you but I have absolutely no experience in that area. For a year or so doctors thought my son might be having seizures but it was eventually ruled out. I can tell you that my son was on Reglan for reflux for awhile. It made him sleep all the time. He had a bad reaction to it and we took him off. After he stopped taking it I couldn't believe what a different child he was. Months later a doctor said they might consider putting him on it again. I said absolutely not. Sometimes you may not be the most popular person around but you have to stick with your gut "mom" instinct.

Do some research on drug and treatment options. Maybe there is a national organization website for children with seizures. Try to get all the info you can so when you are ready to make some changes you will make sense in what you are suggesting to your doctor.

Keep us posted.





Sandra


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iVillage Member
Registered: 03-19-2003
Tue, 03-22-2005 - 6:08am
Stephanie, how are things going for you?

 


 



iVillage Member
Registered: 03-19-2003
Tue, 03-22-2005 - 6:11am
Caroline, how are things going?