Strange Seizures

User - posted on 02/27/2012 ( 5 moms have responded )

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Background: Christmas Day, my 4 year old Alex, suffered an unprovoked first seizure (tonic/clonic). A few hours later he suffered a complex partial seizure. Since then he has been seizure free although he is being set up for a sleep study and a 24 hour EEG, since his 1 hour EEG showed a propensity for seizures. Not medicated at this time, we just carry his Diastat everywhere we go. No family history of seizures at all.



Fast-forward to now: On Sunday, my 7 year old daughter Morgan, suffered an unprovoked first seizure. The seizure was unwitnessed by us but we found her immediately after unconscious in a clear postdictal state.



Our doctors seem to be dumbfounded but of the same thinking of us, "there has to be something we are all missing". Our pediatrician is calling in some favors to some friends as infectious disease to get there impression while we get in with the neurologist for a baseline EEG for Morgan.



Has anyone ever encountered a situation like this? It's very hard for us to comprehend that two of our children 2 months apart all of a sudden start exhibiting seizures.

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Elaine - posted on 03/26/2012

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I would want to consider all the environmental possibilities like chemicals (schools often use spray for weed control) also low fat diets can cause seizures in young children. Doctors will usually not try to educate you on other possible causes, so educate your self by searching for the type of seizure your child is experiencing. It is what I had to do. My son started suddenly at 16 I have been researching for about 2 years. My son is on keppra, see a chiropractic neurologist and I would like him to try taking coconut oil daily. All of these things has helped. Also all patients that are on anti seizure meds needs to take more calcium, the meds deplete calcium.Lecithin, and vit e also are known to help with seizures. I encourage you to check these out on the internet first so you know what they can do for your chil.

Alyson - posted on 03/09/2012

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I didn't have much luck with keppra...it made my sweet little girl very nasty. Also, it didn't work. I actually think it made the seizures worse. The clusters didn't start until after she began keppra...could be coincidence. I have heard it being very successful with other kids. I am beginning to lose hope on the medication. It seems even when you find one that works...it eventually stops working. I don't know what to do. The neurologist is reccommending we see if she is a candidate for the epilepsy surgery. We are not ready to even think about that. Just yesterday she had 3 seizures in school. I was there for the third one and she lost bladder control. It is heartbreaking and so frightning. I am hoping to find someone in my area to connect with, but nobody has replied to my post. I spend my days...as I'm sure you do..just waiting for the next one. Good luck with the Keppra.

User - posted on 03/08/2012

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Thank you. Since this posting, my daughter had a second tonic-clonic seizure this morning and was sent for an urgent EEG which has confirmed definite seizure disorder. She starts Keppra tonight.

Alyson - posted on 03/02/2012

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From what I've read it is not uncommon for epilepsy to be hereditary, however it seems unusual they would present with first time seizures so close together. How awful for you and your family. Hopefully it is something environmental that caused it and will be easily corrected. I wish you the best of luck. Epilepsy is horrible. My daughter was diagnosed a year and a half ago. She was immediately put on trileptal, which kept her seizure free for almost a year. It stopped working 6 months ago and since then she has tried 3 other medications. They are not working and she has several seizures a week. It is so scary and horrible to see her going through this. She also has been prescribed disastat. We had to give it to her twice for clusters. It was very traumatic for her when administered. Her neurologist prescribed klonopin wafers to use instead. They melt almost instantly in mouth. I highly reccommend this for complex partial seizure clusters. She has a clusyer almost at least once a week. It has happenned at school several times and I can't even imagine the nurse giving the diastat. It was bad enough when we gave it. Good luck. I hope they determine the cause of your daughters' seizures and it can be easily remedied.

Ashlyn - posted on 03/01/2012

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I'm sorry, I don't have an answer..that's so scary! :( Have you ever heard of a group on FB called "Parents of Any-Cephaly?" There are SO many different kinds of dieases, disorders, syndromes on there, I'm sure someone would have an answer. Good luck and I hope you get it detected soon!

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