Confused mom new to epilepsy

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Hi everyone! I have a 5 month old who began having seizures when he was 2 months old and it's been a long road without many answers. At 2 months he began having clusters of spastic movements so he was admitted for testing. EEG was abnormal but infantile spasms was ruled out. MRI, blood tests, lumbar puncture all came back normal. They have tried phenobarbital, keppra, topamax and Ativan which all failed. His seizures have since changed to arm stiffening, eyes flickering and jerking now. He was admitted again after reaching 40-50 of these seizures per day. He is now taking onfi, vimpat and klonopin which has reduced his seizures to less than 10 per day. After 5 doctors, not one can give me any answers! They told me normally with cases this severe the baby does not progress, but he is happy and reaching his milestones so far with no developmental problems yet. One doctor says he could grow out of it and another says its not possible. Any info would be greatly appreciated. Experiences? Opinions? Referrals to specialist anywhere in the US? I am desperate for help at this point!

Thanks
 
I'm sorry you've had to joined epilepsy parent club. A normal MRI increases the odds that the cause of your baby's epilepsy is a genetic mutation. Have you done any genetic tests? For example Dravet syndrome is caused by a mutation in the SCN1a gene.

Since you don't have great seizure control yet, you may also want to consider the Ketogenic Diet. It has a decent success rate in cases of refractory epilepsy (without the major neurological side effects many AEDs have). I believe you can get a special Keto formula. http://www.charliefoundation.org/ has more details.

There are good epileptologists throughout the US. If you want to share what region you live in I'm sure you'll get some suggestions of good docs to see.
 
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Thanks for the response! I believe she did do some genetics testing but I am not sure exactly what she was looking for. At my last visit, she told she didnt believe that it was any kind of encephalopathies including Dravets. One neurologist told me that the MRI could possibly come back normal for the first year so they are repeating another MRI in March. If they do find something on the MRI, he still wont be a candidate for surgery because his seizures are multifocal. I am definitely going to look into the ketogenic diet. I live in Louisiana, but I am willing to travel anywhere at this point.
 
So sorry to hear that your sweet baby is suffering with seizures. Although our Jonathan didn't have the same type of seizures, his (tonic-clonic) seizures began when he was 1 year old. He's now 10 years old. During that time, we've had 5 1/2 years of complete seizure freedom, interspersed with years that weren't so good (two years were horrible).

I wholeheartedly agree with jimj about giving the Ketogenic Diet a try. Jon's on it now, and it bought him two years of complete seizure freedom. I wish, oh how I wish, we'd tried it earlier, but we deferred to his neurologist, who wanted to try several drugs first. None of those drugs really helped, and 3 of them (along with the seizures they weren't really controlling) caused irreversable damage to his speech, liver, and behavior (autistic like traits emerged).

I hope you check out the Charlie Foundation website. Johns Hopkins is currently using the Ketogenic Diet as first-line treatment (in stead of or along with meds) for infants with seizures -- with remarkable results.

Another good site is Matthew's Friends -- from more of a British perspective on the diet.
 
Thank you for all the responses! I think we are going to give the ketogenic diet a try in the next couple of weeks if this medication fails. The neurologist helped find a company that is going to do a full genetic test for free since my insurance refused to cover it. The testing kit was shipped yesterday so hopefully we will have it done next week!
 
Great to hear you're going to have the genetic testing done -- that may give some important answers.
 
It's possible for your child to grow out of epilepsy I had a cousin grew out of it.I didn't and his mother didn't. There are two children's hospitals in Atlanta Egleston and scottish rite
 
I'm sorry you are going through this. :(. Is genetic testing normal for an epilepsy diagnosis? We weren't offered any testing? KarenB your info on the ketone diet is interesting. Is he only on that and no meds?
 
A genetic test is usually only done if there's reason to believe the epilepsy has a genetic cause. With the discovery of more genetic causes of epilepsy and the falling costs of genetic tests, the genetic tests are being done more frequently.
 
Jonathan is currently on the diet and a very low dose of Zonegran. Some children are able to be completely med free on the diet, esp. if the seizures are stopped before too much damage has been done to the brain. In our case, we probably waited too long to start the diet, as he had some significant brain damage between the ages of 5 to 7 (when he started the diet). We were med free for about 8 months, but weren't able to maintain seizure freedom on the diet alone at that point, but only need a low dose of med at this time. He's currently having a 24 hr EEG done, and based on that, we may either wean the med, or reduce the diet a bit, since he's now been seizure free for some time. Most kids stay on the diet for about 2 years, and then wean off gradually.
 
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