Personal info Child

name: Isak
sex: Male
5/23/1998 - 3/28/1999
city: Tacoma
country: WA USA

Epilepsy info

primary diagnosis: Unknown
additional: Hydrocephlus, extreme prematurity
cause: Brain dammage due to brain bleeds, worsened after menegitis
date diagnosed: Not sure was in hospital
type(s) of seizures: I am not sure what type of seizures he has. I mean, I don't know the name of them. I can discribe them though. When Isak has seizures he bicycles his legs, swings his arms, sucks and blinks his eyes.
frequency of seizures: Isak had very few seizures until he had menegitis.(9/11/98)Pheno controlled any activity. Since then they have had to increase his pheno several times. Eachtime he gets low, he seizes. I am not sure of frequency. He just came home from the NICU October 18th. So far it has been about a week since his last episode.
additional health issues: Isak has severe hydrocephlus and has a shunt to drain fluid from his head. He was born very preemie and had severe brain bleeds after birth.

Medications used (in chronological order)

Phenobarbital
- still being used: Yes
- effectiveness: Unknown
- max. dose: 6ml every 12 hours
- positive effect: Controlled seizures until recently(2/99)
- side effects: Sleepy, interfeared with development
Carbamazepine (Tegretol, Carbatrol)
- still being used: Yes
- effectiveness: Positive
- max. dose: 3ml 3 times a day
- positive effect: I think is positive... just started a week ago. Now having some very mild break through seizures
- side effects: VERY SLEEPY... Isak sleeps almost all day with this medicine

Alternative Treatments (in chronological order)

PT
- details:
- still being used:
- effectiveness: Unknown
- comments: We will be starting soon.
Ot
- details:
- still being used:
- effectiveness: Positive
- positive effect: Help Isak gain minor head control

Personal Notes

Isak is a twin born at 26 weeks gestation. Because of how small he was he had severe brain bleeds leading to hydrocephalus and seizures. Later he had surgery for a brain shunt to drain the fluid and pressure from his brain. We were doing well with not having seizures until Sept 11th, when he contracted meningitis. Two weeks later he would have his worst fit, requiring three different meds that day to stop him from seizing. He had a EEG and CAT scan. Both revealed no explanation as to why he started seizing. He was able to go back down to only one med by the end of that week(Phenobarbital) and has done fine. We have battled the therapeutic dose and I think we have finally reached it. No seizure activity for the last week! Yay! I hope it stays that way. Isak finally came home from the NICU October 18th, 1998. We are happy he is with us!

Contact info

For additional information, please send e-mail to Angie (Isakswngs@wmconnect.com)