More saga-Anyone with spina bifida??
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|Fri, 04-14-2006 - 1:05pm|
As some of you know, I've posted her for about a year about my 6 year old. He's had health prob's since birth and is still battling reflux and some other stomach issues along with asthma. Well about 18 months ago he started having his feet and legs go numb. He was falling down some and we were getting no where with the docs. Well after taking him out of network to a different neuro they did a spine MRI. It was negative, but they didn't do it with contrast. I've gotten conflicting reports on how important that is. He has clonus in both legs that every doc except our neuro seems to see. The new neuro we saw noticed it, but she was out of network so we couldn't afford it. They've basically shrugged this off as restless leg syndrome and we've tried numerous different anti seizure meds with no help. Now I had him to the ER on Wed because of this terrible stomach pain he's been having. They did an ab xray that showed the last vertabrea in his back to have spina bifida occulta. I asked the docs about it and they said that this "could" be the cause of all his problems, but they couldn't really deal with it in the ER. He was suppose to have some GI tests today, but is running a fever so we have to wait until next week. They want our GI to look at the xray and then consult with the neurologist. From what I've seen this is a fairly "non severe" type, but it can cause all the problems he's been having. I can't seem to find any treatment options if this is what we're dealing with if there even are any. Anyone have any thoughts? In all this mess no one has even done a simple spinal xray on him. I'm at a lose!!