Leila is now 16m. old and weighs 14lb. the doctors think she has Very Long Chain Acyl-CoA Dehydrogenase Deficiency (VLCAD) which they think is the cause of her small size I understand that but what I don't get is what they found out about her nerves.They are not firing motor or sensory and the doctors don't know what the cause is. She still responds to the touch of things and she can move in very controled manner. She is very intelegent can say about 50 words, can say up to 3 word sentences,and her cognitive skills are very high as well. She is in a brace now her curve was at a 61 before, now its at 41.she can't crawl she can't walk.but she scoots around on her butt to get around.Does anyone have any info about nerves not firing sencory and motor because the doctor is having to research and I 'm not to sure he will think of all the posablities?
JoAnna