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Don't know what to do!
Fri, 12/29/2006 - 00:35Topic: Parents & Caregivers
Hi
3 years ago my son had his first seizure, walking around staring and then layed down and for 3 hours did not talk but could recognize. #2 while watching a portable dvd player started picking at the top and then went into seizure, started meds (depakote) this made him entirely unable to stay awake in class. #3 had a couple small episodes not to bad but school work really went down, changed meds and added trileptal, still no better then took away the depakote and added zarontin, so now he takes trileptal and zarontin and 5 days ago had a seizure that lasted 20 minutes so the doctor increased the dose. The seizures always causes him to vomit, sleep, sometimes wets himself, but it seems as though that we just can't make sense of any of them. At times we have been told that he has partial complex seizures then were told that he has absence seizures. He has changed so much always kind of out of it, over the last 3 yrs he has changed so much his grades have dropped he is real clingy and just not interested in much of anything. He has had about 4 eegs and the the doctor just keeps switching or increasing his meds. Any information is welcomed. Thank you kristin
Comments
Re: Re: Don't know what to do!
Submitted by klhenry on Sat, 2006-12-30 - 01:14
Hi Laurens Mom
Yes he has had a MRI, Cat scan, @ 5 EEGs, His eegs have always shown left frontal activity and the absence spikes. Sometimes it is so overwelming when you get into the doctors office all the questions and the medical lingo. The Neurologist has decided to be a little more agressive and we are going in monthly to check him. The problem that I have with that is they don't do an EEG monthly so we really can't see the activity. Alot of times I don't see the absence they noticed them on the EEG. Also I have been reading alot of the info on the boards and wondering if maybe he should be going to an Epilepsy Specialist at this time he goes to one of the best Pediatric Neurologist in Houston. But I am thinking maybe he should go to someone who deals strictly with Epilepsy. Just so many unanswered questions. Why is it alot of these children start around 6 or 7? Kyle has had no head trauma or as far as we know none in the families?
It is just so overwelming and trying to maintain a normal life for him. I feel like when he is not with me I am wondering is he okay. That is the hard part. Because he stays with friends and I just think are they going to notice when something is happening to him. The last emergency room visit was real hard on us because we are trying to deal with him at home so that he doesn't get stressed so much. He has always came out of it faster when we are at home and he doesn't fight or kick or get scared. But this last seizure lasted 20 minutes so we had to go to the hospital. Which at the hospital they get no rest (doctors in and out). Always feel like we are hitting a brick wall. Thanks for your response. Sometimes it is nice to vent. Thank you Kristin
Re: Re: Don't know what to do!
Submitted by angel_lts on Sat, 2006-12-30 - 08:57
Laurens Mom,
How long has she had epilepsy? When did the grand mals start?
take care
Lisa
http://health.groups.yahoo.com/group/epilepsyapproach/
Re: Don't know what to do!
Submitted by tchaide05 on Fri, 2006-12-29 - 23:36
Kristin, I also have a daughter who has been diagnosed with E. her seizures started as simple partial, went to grand mal, and now she just has absence seizures. her meds are trileptal and keppra, theough I have seen some side effects, they are note major. have any of his eegs shown anything? have they done an MRI? what all testing has he had done. look forward to hearing from you Mom to Lauren age 9,