Disabled Children

Have they checked for Arnold-Chiari type 2? How is her speech? Babies are wired to eat orally and if she cannot it wouldn't be a conscious decision on her part. It can only be either mechanical or neurological. I know how frustrating this can be. Did her neurological work-up include an MRI or CT scan?

When she was in the NICU they ran every test they could think of, 4 different swallow studies have come back completely normal, they did a few ultrasounds on her brain, the first one should slight pre-term bluish tint and after that they were normal. They can find no abnormalities in her jawline. She was born almost 6 weeks early but at a normal weight. She had blood sugars under 20 that took over a week to stablize. After all the research I have done I personally think she has brain damage in the hypothalamus. She would only wake up for about a total of an hour until she was almost 3 months old, she has never felt hungry, had a very weak suck. The doctors don't think there was damage so they don't do any more testing. We already see doctors at Children's hopital so this is the best we can get. I am just hoping one day she will eat, right now we see a speech therpist twice a week.

What you are going through is normal for those of us with special needs children. The doctors sometimes dismiss us. The hypothalamus could very well be the problem and or neurological. There was something else I was thinking of but will have to get back to you as I don't remember.

Hello Joanne. Thanks for writing back to me. It is the lowest part of Leo's back that has a problem. He may have a lack of toilet control when he is older. I have to use a catheter on him every four hours. He gets dirty nappies all the time. He gets very sore as a result of this. His legs look weak and don't move very much. One of them sticks out sideways.

What did you name your son? Where is his lesion-my son's is L3-L4 so he doesn't walk but when he was younger he did use reciprocation orthotics (braces and a walker). Eventually he decided his wheelchair is much faster! He has had many surgeries-more then normal for most SB kids. He plays wheelchair sports. Had surgery so he catherizes himself out of his belly button. There is much to learn. Do you live near a Shriner's hospital? Income doesn't matter if it's high or low. It is free and they know about our kids. Also, keep a journal of ALL doctor visits. Ask for records and if you don't like a doctor, get another one. Feel free to private message me. Good luck and keep me posted!