More saga-Anyone with spina bifida??

iVillage Member
Registered: 03-27-2003
More saga-Anyone with spina bifida??
5
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!!

Gretchen

iVillage Member
Registered: 03-19-2003
Fri, 04-14-2006 - 3:08pm
Gretchen, email me, please through my profile.

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iVillage Member
Registered: 08-27-2005
Fri, 04-14-2006 - 3:32pm

One of my daughters has quite severe spina bifida.


Spina bifida occulta is a mild form of SB, occuring in 10 to 20% of the cases, but it still has various ramifications.

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iVillage Member
Registered: 03-27-2003
Fri, 04-14-2006 - 5:45pm

They did a UA on Wed when we were in and it was negative. My oldest one had step on Mon., but Jarrett's culture was negative. We just can't catch a break. The ER doc we saw Wed mentioned his spine felt like he might have some scholiosis, but that's the first time it's ever been brought up. Other docs have mentioned they thought his gait was off. He's always been a little more clumbsy than my other 2. I hate waiting!!!

Gretchen

iVillage Member
Registered: 08-27-2005
Fri, 04-14-2006 - 5:51pm

The waiting must be horrible xoxox.

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iVillage Member
Registered: 03-19-2003
Sat, 04-15-2006 - 4:38pm
Gretchen, hope the weekend is an enjoyable one and both of the kiddos start perking up soon!