The results are in, Cameran now has Generalized Epilepsy, the Infantile Spasms are gone. No more Hypsarrythmia and she hasnt had anymore head drops in over a week. This is great news that she finally outgrew it but not before these others took over. These new spells only happen maybe 2 or 3 times a day, last night they where even worse with her arms coming up and eyes rolling but her ARMS where doing a jerk motion.
The seizures are coming from her Frontal Lobes. He says these kind are much easier to control he is giving the diet till Monday per our request and if these seizures dont stop by then they will start her on a new med either Depakote or Lamictal. All other meds will remain the same until the new med gets settled in then he said he would remove the Keppra but not the Klonopin since it seems to be working. The diet I'm not sure where it lays???
I've pulled up some info on the Generalized Epilepsy so I will be putting a direct link to it on the sidebar if you are interested in reading more on it. A little of what I read is that it can fall into diffrent catagories like Infantile Spasms does. Idiopathic( in Camerans case) meaning their is no cause found and Symptomatic meaning their is a found reason for the seizures.
Under the generalized epilepsy their is different characteristics of seizures such as starring spells, tonics(stiffing-which Cameran does with her arms and sometimes her legs), atonic (weakness, she has had this with her IS) and grandmal seizures. It does say on one site that it is possible for them to outgrow them around teenage years, again I think it just depends on the individual. He says she probably has something microscopic in her frontal lobes causing her seizures its just not visible to a MRI. But said there is nothing they could do as far as surgery goes in that part of the brain.
We just hope and pray that she can maybe start developing a little faster now. I know seziures in general can hold you back but maybe now that the I.S. is out the door maybe we can finally gain some ground.
1 comment:
Answers are always good, even if they lead to more questions.
I'll throw a bunch of thoughts out here. Have they thought about a PET scan to rule out any other abnormalities? Since Lamictal has to be titrated VERY slowly and can take months to get to therapeutic levels have you asked about removing Keppra first? Diet, it worked for a while, are her ketones staying in check? I know food options have been an issue, do you have an expanded menu yet to try out? There is a mom on the IS group whose son has been on the diet for a few years, perhaps she can give some new recipes. Her name is kasey and her son is Denis. I will send you her email addy. I hate to see you give up if it could work. Ummm, I am sure I will think of others. Just glad to hear the hypps is GONE!
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