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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 autumn18 on Sat, 2007-04-14 - 00:36
Hey
This situation you are going through sounds just like me. I was a 19 month old girl when I started having them. I would turn bright blue and after a few moments come back to a pale (sick like) color. I hate having them. While being coded with seizures, bitten by mistakes, and even waxed with family love, support, and hatred, is really what makes life be the inexpensive price for me to live. My family, what can I say more? I guess I picked the right one to come to live with! This has helped me get to where I am at now. I'm currently a SR at Panguitch HS in Panguitch,Ut. I have great friends that don't think any less of me because of my seizures. I guess what Im trying to say is that LIFE with SEIZURE is WHAT you help him make of it. I have had a totally of 3 meds because they left when I turned 3 but came back at 11 because of the puberty stage. Now I currently live with them but havent had 1 for almost 2 yrs. So make his life count for every moment that he lives but guide amd somewhat protect him from the holes that seizures can have an effect on you to dig. Let him be an active person the more active he becomes the more less likely he will have them. That is what I did. One other thing do let everyone that you run into unless they ask you if there is something wrong with him. Some people in my community still dont know I have seizures because I act normal and dont dig my self "holes" from seizures of depression.
"Normal is just a setting on the washing machine, and those that have Epilepsy are far from normal!!!!!"
(; Autumn ;)
Re: 19 months old and onto a 5th medicine
Submitted by Abbygirl on Thu, 2007-04-12 - 20:15
My daughter has had seizures from birth, Meds work for awhile then stops-generally after 3 mo. Keto diet worked well. She was diagnosed with a seizure disorder called LGS. They can diagnose it by EEG patterns. I would deffinately ask about it. He sounds alot like my daughter. We also have no explanation why. We are waiting for the VNS surgery. She has tried 8 different seizure meds, some twice. Depakote kept her seizure free for 80 days. But she was having 40 daily. Everything wears off eventually so I'm praying the surgery will work.