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petealicat

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Hello all,
I'm looking for a support group. We live in Turkey and my 4-year-old started having tonic clonic and myoclonic seizures May 2010. We were seeing a doctor in Vienna, tried Keppra and failed, now on valproic acid and rufinamide. The military sent my daughter and me back to the US (my husband and other two kids are still in Turkey). We are waiting until this summer to all be together again. Seeing a good doctor here. My daughter was diagnosed with Doose syndrome (myoclonic astatic), but has normal development. But she's still having breakthrough seizures. I guess I'm only just now getting my head around the fact that this isn't going away any time soon. Kind of a hard adjustment. I keep waiting for the magic pill.
Thanks for...I don't know what yet...but I'm glad I'm not alone.
Allison
 
Welcome petealicat

Well, you've definitely found a support group and a good & supportive one in my humble opinion.

I have epilepsy myself & am not a parent. I do feel that one thing I've learned is that for most people there really is no magic pill. Epilepsy seems to be either a constant search for better control and lesser side-effects or constant awareness of diet, supplements & various treatments to maintain an absence of seizures.

I have to admit there are times when I wish it was like the flu & once it's cured it's gone.

Meanwhile, take a look around & make yourself at home. I hope you're find this place comfortable.
 
Hi Allison, Welcome!

I have only been here for a week or two and so far everyone has been very nice, informative and supportive. Sometimes just knowing that you are not alone helps tremendously. The general population has no idea what you are going through and it helps to have the company of like-minded (no pun intended) folks and people who understand what you are dealing with.

My daughter and I both have epilepsy (idiopathic generalized seizures). She does well with Keppra and I take Dilantin with Lamictal added just last week due to a recent breakthrough.
 
Allison,

Welcome to the forum!

You are definitely not alone. We are all here with you, and we share the seizure journey with you and your son.

As eric said, most people have a lifelong journey with epilepsy. But some find the right meds and are seizure-free for life. All of the meds have side effects. We just try to find the med that has side effects that we can handle and impact our lives the least.

Your son sounds like he is in good hands. Have his seizures decreased on his new meds?
 
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