I need some advice...

Have a child with SM/Chiari? Share issues unique to children and their caregivers.

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I need some advice...

Postby EHF » Tue Aug 10, 2010 10:48 am

I wrote about my 6 year old son a couple of weeks ago (see coughing and symptoms return thread). There is nothing emergent about his situation - he's still doing well, for the most part. However, he continues to choke on liquids and is having upper back/neck pain, along with intermittent complaints that include weakness in extremities, pain, etc (its all a bit vague). I spoke with his neurologist yesterday who suggested touching base with the neurosurgeon. It was his opinion that the NS will want to order imaging, flow studies, etc. I'll be honest...I'm hesitant to start this process all over again. I called and left a message for the NS's nurse this morning and am waiting to hear back from her.

Does anyone have any advice? How long are you comfortable watching and waiting in this sort of situation - a situation in which some of the symptoms are reappearing? At what point is it absolutely necessary to obtain imaging, etc.?

Thanks.
EHF
 
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Re: I need some advice...

Postby lcolangelo » Tue Aug 10, 2010 4:14 pm

I think if I were you I would get imaging done. Choking although it may not seem it, can be a serious symptom-- it may indicate compression of the brain stem-- with my kids it often led to aspriation pneumonias-- which can be serious. I think you'll feel better after getting an MRI-- you'll know either way and may find out he's fine. Anything I can do let me know-- I've been where you are! I'll keep you in my prayers.
lIsa
lcolangelo
 
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Re: I need some advice...

Postby EHF » Tue Aug 10, 2010 7:49 pm

Thanks for your reply - I spoke with NS's nurse this afternoon. She asked many questions and, as I was answering, I realized there's quite a bit going on. She was going to talk to the NS first but mentioned obtaining more imaging of the brain and spinal cord - however, that is dependent on what the doctor says. She also mentioned the possibility of buildup of fluid on the spinal cord - I assume she was talking about a syrinx (which I really don't know anything about). My son had aspiration pre-surgery (that showed up on xray) but nothing that turned into a true aspiration pneumonia, thankfully. However, I realize it is a defiinte possibility with the choking. Hopefully we're on the right track now. I just wish we weren't track at all.

Thanks again.
EHF
 
Posts: 13
Joined: Fri Feb 19, 2010 9:44 pm


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