I am just curious if anyone else has had this problem. My daughter who is 16 now had her first seizure at the age of 8. Had EEGs that were never normal for 2 years then stopped having seizures until her 15th birthday which gave her a 5 yr gab seizure free then had another severe gran-mal. This seizure lasted right at 9 minutes and took her 4 days to regain any type of memory. She still has long term memory that was lost, friends that she doesn't remember at all and now it has affected her short term memory. 3 wks ago she had another seizure thank God it was not as bad but it took 45 mins to regain any motor function in her arms,legs and speech. All the EEGs that have been done are coming back normal. My once highly intelligent daughter that has been taking 11th grade honors classes in the 10th grade is failing the 10th grade now. She is extremely stressed out. Meds are NO HELP at all. The Keppra was causing horrible "Kepp-Rage". She was crying one minute, laughing hysterically the next then so angry she would be throwing things across the room then back to crying again so they have her on as low a dose of it as they can right now to just hopefully control any onset breakthrough seizure until they can find out what is going on. The new dr is sending her for an IQ test and a neuropsychological evaluation. Has anyone ever heard of this. Has anyone ever seen this type of seizure activity? I don't know what else to do anymore. I feel like my daughters teen years are being stolen from her and there is nothing that I can do. How does a parent deal with the fact that their child needs help and be completely helpless in doing anything?
I am a pediatric physical therapist and with 31yrs experience I have seen a lot of children with a lot of different types of seizure activity. What you describe is unusual. Have the drs ruled out a lot of diagnoses? I ask because my daughter has/had conversion disorder, and there are some similarities in their stories. CD is finally getting the research done to explain what is going on in the brain, even if we don't know why, other than the m thinking that emotions can precipitate the condition and that working to resolve the emotions leads to recovery. If, after all the testing is done, if they cannot figure out an explanation for what she is going through, or if they bring up conversion disorder,I would be happy to correspond with you. At the vary least, I can commiserate as a parent of a teen, my girl is17and was supposed to graduate this year. Now we hope all will go well and she will be able to attend school next year. We have seen migraines with memory loss, but don't know if theCD caused the migraine; seizure activity, loss of physical ability to care for herself for months due to "movement disorder" and other fun stuff that we weathered, mostly from fall 2008-2009. The memory loss occurred late 2010. Now she is back to doing online coursework because she can't return to school (another problem from the migraine - an inability to handle noise...w which is improving slowly, but not enough to return to school this year. Doing well on one class at a time after memory returned. So, I just wa nt you to know that there is hope until you get a confirmation on a diagnosis. Sometimes no diagnosis is a good thing. I have also known on rare occasion for someone to have two different things wrong and because someone got one diagnosis, it didn't stop the person from developing something else, like your daughters initial brain abnormalities that gave her what might have been typical looking seizures as young child doesn't rule out her ability to develop CD, which she could recover from. Also, if you hear only horrible things happening to you can give you CD, you need to know that it is not necessarily true, as I found out at u of Michigan hospital when case studies were presented to me. It turns a lot of people away from considering CD as a possibility when they are given old information.
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