Although he has some symptoms of hirschsprung's (severe consitipation that is only relieved with a daily dose of Miralax and megacolon revealed on MRI) his gastroenterologist doesn't think he has it because he is 10 years old and is having regular bowel movements again. His neuro insists that its still a possibility and doesn't want to rule it out until he is absolutely sure.

I will be scheduling an appointment with a pediatric neurologist tomorrow. I feel a little guilty about it, since his regular neuro has tried his best, but because he specializes in MS and Parkinson's and is not a pediatric neuro, I still feel as if he is missing something and perhaps a pediatric neurologist will be able to figure it out.

I'm also afraid that the episodes of muscle weakness that are affecting his arms and legs will eventually affect his ability to breathe during one of these episodes. They happen out of nowhere, they're unpredictable and for the life of me, I can't figure out what is setting them off. They also seem to happen between the hours of 7-11pm, when we're lying in bed and settling down for the night. I'm wondering if lying flat could have something to do with these attacks, which is probably why the neuro has scheduled him for a tilt table test, but I know that the child won't be able to stand for the 45 minutes necessary to complete the test and since he is not having fainting episodes and his ANSAR test was normal, I really don't understand why he ordered the test in the first place.

He is fine 90% of the time, you would never know that the child is suffering with any type of illness, but when the episodes come on, he is bedridden for anywhere between several hours to a day or two. These episodes of weakness/burning in his body and head/visual disturbances started on May 1st and have happened at least 7 times since then. When I brought him to the neurologist back in March, he was only having back pain and mild weakness in his legs, thats when the neuro gave him a diagnosis of "unspecified disorder of autonomic nervous system" so whatever it is, it seems to be progressing rapidly and I am afraid that he will die during one of these attacks.

So far, his neurologist doesn't think it's necessary to have him admitted to a hospital. I understand why he feels that way, because he is only seeing him in between episodes, when he appears to be healthy and happy, but I totally disagree, because if he were to have some of these tests and his vitals were being monitored while in the midst of an attack in a hospital, I'm pretty sure the test results would show SOMETHING.

I'm trying to reassure my son (and myself) that he will be ok and that the doctors will figure out what is going on with him and start treating him, but I'm beginning to think it's going to have to get worse before it gets better.
That's what is scaring the hell out of me. I don't want to lose my son and I don't want his diagnosis to be made during an autopsy.

I am petrified. I hope and pray that a pediatric neurologist will be able to get to the bottom of this. I don't know how much more of this I can take with no answers one way or the other. I am exhausted.