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19 months old and onto a 5th medicine
Sat, 02/18/2006 - 04:57Topic: Living With Epilepsy - Youth
My 19th month old son was diagnosed with epilepsy at two weeks of age. We have no family history, there is no known source for the seizures (idiopathic) and we now are on a 4th medicine that doesn't work. All of the medicines have worked for a period of time, the longest being Depakote (10 months). His seizures are coming from the right front part of his brain and he can have up to 100 a day at their worst. He has undergone 2 visits to the hospital for long term monitoring, as well as 2 MRI's.
Complete frustration and fear is setting in as it has each time we go through weaning him off a medicine that has stopped working to move on to the next.
I am looking for advice from someone who may have a similar story, or thoughts from someone who has more knowledge than I.
Comments
Re: 19 months old and onto a 5th medicine
Submitted by rkinney on Fri, 2007-02-09 - 15:19
Hi,
I have a 2.5 year old that was diagnosed almost 2 months ago and is on her 3rd medicine. So far, no known reason and she is undergoing more tests including potentially a lumbar puncture. Really not happy with that. I'm hoping the new meds will work. She usually goes through a pattern of having around 4 or less for 8 days on the new meds then goes down from there. Last night she had 13 seizures and 6 in less than an hour where I had to give her ativan. She had some weird reaction to it and ended up staying up from 7 pm till 7 am. Waking up once & awhile screaching and saying she was scared. I'm so worried and wish they would find something wrong so we could fix it. I'm worried about it effecting her development and just want her to be back to her old self. I've read that Celiac can cause seizures - but I think its a worse case scenario for Celiac.. Thought maybe she had that.. anyone ever heard of that before?? She has drop seizures but mostly myoclonic seizures. Would love to talk.
rhonda
Re: Re: 19 months old and onto a 5th medicine
Submitted by jnjgoss on Fri, 2007-02-09 - 15:36
Vitamins to strengthen the immune system are a good start to help with seizure disorders.In children this young the kiogetic diet seems to do wonders for children. You can find it on this website. John Hopkins offer treatment and there may be other treatment centers. But from what I have heard it works great for children and brings them to being seizure free.
Re: 19 months old and onto a 5th medicine
Submitted by selliott on Sat, 2010-01-02 - 15:12
The Ketogenic Diet! It's hard and time consuming...but well worth it! Stick with it and make sure your dietician is expeienced! We started levocarnitine as a supplement with the diet. It works great to help the bosy metabolize fat and increased muscle tone. Good luck!