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New and thought we'd explain our situation

Posted by on Jul. 31, 2007 at 11:18 PM
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My son is 8 1/2 months old.  He has had seizures since he was 4 months old.  The neuro says that he has a metabolic disorder.  Currently he is on Keppra, Phenobarbitol, and carnitine.  She is planning on weaning him from the phenobarb.  I'm only 21, and so seeing my poor little one suffer is so hard.  I just wondered if any one else has a problem similar to his.
by on Jul. 31, 2007 at 11:18 PM
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msclark1964
by Member on Aug. 1, 2007 at 12:26 AM
Although my situation is not like yours and unfortunately (for me :-)) I am about twice your age, there are people in this group who have young babies with multiple seizures.

Here's my situation - my son is now 22 years old (I was 21 when I had him!!!) and was diagnosed with Temporal Lobe Epilepsy when he was 19 years old, after having 4 grand mal seizures (I can't ever remember the new names for each type) in 4 weeks.  I was sure he had epilepsy from the first time he had a seizure at age 1 (I was only 22 then & that was hard enough).  However, over the years the docs kept telling me he had Vasovagal Syncope (fainting spells) since they never saw the seizures nor could they find anything on the EEGs.  When he was finally diagnosed, the docs wanted to know why he hadn't been diagnosed and put on meds sooner.  Since I'm not the professional, just the parent who kept trying to convince the docs that something more was wrong, I got the blame!  LOL!  That's the way it goes.  Anyway, you can talk to me anytime.  My son is also on Keppra and is still getting the meds adjusted to control the seizures.  I know how hard it is to see him have them and I can't imagine having to see my baby go through this numberous times a day.




Melinda


Mother of:
 
Teresa - 23, ADHD
                  Jason - 22, Epilepsy, Tic disorder,  asthma
                  Matthew - 20, Tourette Syndrome, OCD

Grandmother of:  Gabrial - 3, ADHD
                           Saundra - 1

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