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Epilepsy/epilepsy in babies, coming off meds

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Hi. My daughter had her first seizure at 4months old (maybe before but not seen) it was the day after her last lot of immunisations. She was sucking her thumb going to sleep when she dropped out her thumb went blue lipped & limp. Luckily my mum was with me who knew CPR. We went to hospital & was told it was temperature related & happens alot in babies (she didn't have a temperature that I knew of. 2months later she got a cold & did it again. Long story short she was having fits every time she was poorly with colds or bugs, temp or no temp, I eventually was given a says machine so I could sleep better, during her seizures it showed that her heartrate went up, oxygen down, then both went to zero, so we would do CPR. On some occasions she would start breathing on her own. Our consultants have said she is a rare case as her says drop dramatically. I would think as it is fits only a cutting when poorly it would be easy to diagnose. She has had an MRI that was normal, a 5day EEG (luckily she had 3seizures) but they showed different starting points in the brain for each seizure so they said it didn't help diagnose. She was put on epilum at 10mnths. Her development was severely delayed but then she went a yr without seizures and learnt alot in that time. When 18mnths she had 6 colds over 3mnths with no fits. So we asked for the meds to be reduced. Everytime it was she learnt abit more. Then she got a bug & had a temp so had 4 little fits that lasted 10secs. But im still wanting her off the meds, she is almost 3yrs old but can't walk without holding on to me, she has just started babbling and last week cried for the first time. Does coming off medication cause headaches or pain or might this be normal brain response? She has had genetic tests & loads of blood tests but everything comes back clear, which is great but I wish I had an answer for her epilepsy & her development delay, I feel helpless to my daughter. She is the most loving, happy child I have ever known but I feel I should know more to help her, my doctors give me no support. Is she such a rare case? I could say so much more but it would take up loads of space! Any feedback would be greatfully received. Thanks

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Rachel,
First let me say that I understand your helplessness and frustration.
It appears that you are not getting your questions answered from your child's physician.
Being here and not seeing your daughter's tests I cannot improve on the diagnosis.
If you are not satisfied with her medical care, you should take her to a pediatric neurologist or epileptologist,  preferably one who is associated with a large university medical center.
Also, when her medication is being tapered off, it should be while she is being monitored with video/EEG so it can be determined what effect this tapering is having on her brain waves.  If her brain waves are unchanged during the tapering, then she can probably do with less medication.
I hope that this helped a bit.
Good luck Rachel and thanks for being such a good Mom.
Sophia

Epilepsy

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Sophia, R.N., M.S.

Expertise

Almost any questions pertaining to epilepsy, seizures, pseudo-seizures, testing for epilepsy, medications, surgery. Self-care, appropriate emergency measures, medication side-effects, drug interactions etc.

Experience

Working as an epilepsy nurse clinican in a large comprehensive epilepsy center for 15 years. Previous employment with a major pharmaceutical company working in pharmaceutical research. Before that - varied experience in nursing.

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