seizures - epilepsy?
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|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.
Caroline (mum to Siobhan 3/2000; severe cerebral palsy; g-tube 6/2001; fundoplication 7/2002; puree real food via gastrostomy 7/2004)