oldakasha
12-06-2006, 07:59 PM
Ok the last time we discussed Gwyneths current condition with her doctor last week he had stated that it was unlikely that seizures were the cause of Gwyneths problems with weakness because her seizures are focal he said he would expect weakness on one side of the body but she has is weak everywhere. He also said that her speech should not be related to her seizures due to it being on the wrong side of the brain so we are still waiting on the Retts testing and he was going to do quite a bit of other testing. I guess my question is what else could be causing this???? My daughter is progressivley becoming weaker. Since we have gotten home she seems to be crawling more than walking and unsteadly so and she doesnt seem to want to do anything other than lay in her bean bag chair which is just not like her. We have been getting to this point for some time but I normally have a very very active child. She just lays there and when she does decide to get up she falls 9 out of 10 times. She is still talking however she is doing more babbling and these very weird gruffling sounds especially when she is not pleased with something. I have gotten her to play with her puzzles but only while laying in the chair. She is now needing us to get her out of her bed and doesnt seem confident to do many of the things she used to. She used to fight having to get help with anything like walking down stairs of even around the house and now requires it and is very willing to accept the help. I am scared. I don't even know the possibilities. I talked to her therapist about them considering Retts and was told that in thier experiances she just did not look like a child with Retts and we have been told that by a neurologist before however her current doctors seems to think its a possibility and thinks she is showing some of the symptoms. He has sent in genetic work up for similiar conditions as well. Have any of you gone through something similiar? I just keep asking myself if my daughter will even have the capability of walking in a year. Anyhow thanks for listening to my rant.