My daughter was a very healthy very smart 8 year old until she started having seizures, that was in November 2004. It is still unclear but she was in a kiddies ride at a shopping centre when she fell and bumped her head, not hard, she got up and got on again, half hour later she started to have seizures, Was the fall the first seizure or the trigger? That day she had 9 seizures. Doctors said it could be migraines or epilepsy? The next week we were back in hosp with another cluster of seizures, so they started to treat the epilepsy, but we just couldn't get the right drugs and she started to change. She got more and more ataxic by the day and her speech was slower than normal, but she was still very happy. We swapped, added and changed drugs to try to stop the seizures but nothing was working, more clusters of seizures, 18 in one day, 25 in one day. And always getting more and more wobbly. We went for nearly 4 months without a seizure and then bang 30. So the neurologists decided that they would try a course of steroids to try to kick start her brain apparently it had worked on another little girl before. So we stopped all other drugs, and did started to do some more involved tests. That's when they did a lumbar puncture that gave her a massive migraine that lasted for about 8 weeks. At its highest the staroids gave her better response time where it had been almost a 10 second delay to back to normal but as it started to come down the seizures returned with a vengance I lost count of how many. That's when the docs decided to tell me to my shock and horror that they didn't think it was epilepsy anymore but something much worse. At first they said Battens Disease so we tested for it group 1,2 &3 and also did some more test to rule out other possible diseases, we even sent test overseas. After around two to three months we got back the tests all negative, back to square one. By then she had CT scans-normal, MRI -normal, EEG's that always came back abnormal but that was because of the seizures, and she kept getting worse. by the end of 2005 she couldn't walk unassisted anymore she would just fall, she walked like a drunk. At the beginning of 2006 I noticed that she started to choke on her foods and drinks.
We tested it and yes she was having difficulty swallowing so we started to give her mashed everything and thickened fluids, but that too was getting worse so we had to do a PEG on her belly so that we could bfeed her straight to her stomach.No more foods through the mouth. by then she was wheel chair bound and starting to loose her speech and muscle tone. The docs are at a loss, we've done tests some of them twice just in case things had changed over a year. So now Amy doesn't walk, talk, eat, swim, read or write, can't use her hands, they are closed, muscle tone is horrible we can't bend her, the seizures seemed to have gone completely, she dry reached (gags) all day and night and vomits a lot, doesn't go to the toilet anymore and is very emotionally unstable, is happy one minute crying or angry the next. We just finished doing another MRI and it came back normal AGAIN, despite the fact that there is nothing normal about her, except that she understands everything we are saying, if anyone says anything funny she is the first one to laugh or if something is sad she is the first one to cry. We've done every test possible and everything comes back negative, the docs have just told me that we will never know and that her time is very limited considering that what ever is attacking her is very aggressive and is moving too quickly. If there is anyone who knows someone who might be going through something similar or have any ideas please let me know I am at a big loss.
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