I ushually dont post on here but try to help other with what I have learned from the past 6 and half years of my daughter having ep.
My 6 and half year old daughter has had ep since the age of 2 weeks. We live in Texas we have been to Lubbock, san Antonio, San Angelo, Dallas and Fort Worth and Austin to see nuerologist. Till we finally got to go to Houston to Texas Children's Hospital to see an epitologist. We finally got a diagnoses last August that yes its ep and that its because of her metabolism. My daughter has been on Keppra 8 ml am and pm and Vitamin B-6 (for the emotional side effects of keppra)since August and shes been on keppra in general for two years. We just went and saw her epitologist and we decided that if Keppra was going to be her drug of choice to stop the seizures it would have already done it. So we added zonisamide (geniric of zonagram) 100 mg at night with a smaller dose of 7mls of keppra. Since we added the new medicine the side effects of the keppra like her very bad and tramatic axiety, emotionalness, moody swings etc have been less and shes doing so good. I mean she is totally a differant child. I talked to her epitologist via phone last Wednesday and we had the pediatricians report that Karon is doing much better on the medicine and we all were in agreement to start wheaning her off of the keppra at this time 1ml less at a time per weekly. As in last Wednesday we went from 8mls twice daily to mls twice daily and then tomorrow will be 6 mls twice daily and continues for 6 more weeks till shes totally off. Since we added the zonisamide four weeks ago tomorrow she has been seizure free except we speculate that she did have a bad seizure we didn't catch at some point in time but other then that seizure free and a totally differant child.
My question is:
she came to me last night and her arms and hands were jerking. Not really fast or hard liek her grandmal but jerking forcefully. I made sure she had her meds on time and everything. She was standing right in front of me talking and able to walk and function like normal except her arms and hands were jerking. Then when she got in my bed her feet and legs were doing the same thing. Shes been checked by her peditrician and my daughter is pretty much on what she calls lock down. We aren't leaving the house etc and shes limited to where in the house she can go without her seizure alert/service dog or her brother, me or her Pawpaw (my dad). We have been told to watch and observe which is fine with us we dont want to medicate more then what we have. And we are waiting on a call from her epitologist.
Just wondering if anyone has been throught his or not?
Sorry its so long to explain!
Thanks!
ELizabeth
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