New to board, need advice please

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

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New to board, need advice please

Postby alex12 » Wed Feb 27, 2008 2:14 pm

My 6 year old daughter jusr had an MRI done of her lumbar spine. The were looking for a tethard cord but found a syrinx. they are not sure how far up it goes since her LS was the only part imaged. We will be getting the rest f her spine done sometime next week. I am so overwhelmed by this and not sure what to do. The Dr said at this point it looks thin (the syrinx) but we'll know more when we have the rest of the spine done.
In the mean time I dont know if I should limit her activities. I registered her for soccer, should I not bring her? Should I notify the teacher! UGH I'm so confused. She doesnt seem to be having symptoms, at least I dont think so.

ANy advice??

Thank You
alex12
 
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Postby brianfsmom » Wed Feb 27, 2008 9:24 pm

Hi

sorry about your daughter. What did they tell you to do about activities? When my son was first diagnosed with chiari and syrinx, the neurologist said hold off on activities until you see the neurosurgeon. The surgeon said go ahead, just keep him out of contact sports like football and wrestling. He was just about to start a rec basketball season.

He had surgery a couple of months after that, but he's gone back to rec basketball and baseball. He even played on a low-pressure travel team last year, and will be on another this year.

I would not think that, as long as the doctor says it's ok, 6 year old soccer would be such a big deal. But perhaps you want to wait for the rest of the imaging to be done first, just to be on the safe side.

Why did they think she would have a tethered cord?

Also, I don't think it can hurt to drop a note to the school, but be prepared for them to overreact. They might insist on keeping her out of everything until you tell them it's ok for her to do this and that. That's what they did to us. Every school is different.

Good luck!
brianfsmom
 
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Thank you for the response

Postby alex12 » Thu Feb 28, 2008 8:00 am

Well they thought she had a tethered cord because she does not poop on her own. No matter how much laxatives, stool softners etc...only with a suppositor does she finally go. It's been a nightmare. She screams and kicks when we give her the suppository but she will go for over a week plus if we don't intervene. Anyway, the MRI of the LS didnt show the tethered cord but it showed the syrinx.
So now we have to see how far up it goes.
It's just so overwhelming!!!!

Thank you for the advice
alex12
 
Posts: 3
Joined: Wed Feb 27, 2008 1:09 pm

Postby dtyree » Thu Feb 28, 2008 10:24 am

Dear Alex 12, Hi and welcome. I have a 10 year old and will say this, I have always believed that children should not be in any sport until age 12-13. Their bodies are still growing and are fragile. Let them be children, the sports will come.

You can take that or throw it out, up to you.

I am sorry, however, that she has what she has. Yea, it is going to be confusing. A lot of that depends on her doctor. How much is he/she going to share with you. But be persistant. Ask the questions that you have. This is the only way to learn. And remeber, there is no such thing as a stupid question. We all are at different stages in life, some with experiences different from ours giving different knowledge. So, coninue to ask so that you will know what is goint on.

I do pray that God will send His comforting spirit and surround you with His love. The answers will come.

Peace,
David
Been called a "walking medical dictionary".
dtyree
 
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Location: Nashville, TN

Thank you

Postby alex12 » Thu Feb 28, 2008 1:06 pm

Thank you David! I need the support...the Dr's don't seem to know that much about it.
I feel like they are not sure what to tell me.
I need to find a good neuro experienced in this.

ALex
alex12
 
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Joined: Wed Feb 27, 2008 1:09 pm

Postby dtyree » Thu Feb 28, 2008 1:17 pm

I had the CM and overwhelming does not even begin to explain what is happening. When it comes to CM/SM we do not have the knowledge to fall back on. If I had been diagnosed with cancer, at least I knew the word and knew about where to begin. But being diagnosed with something you know absolutely nothing about, plus, can't even pronounce, yeh it is more than overwhelming.

Don't know if you mentioned where you are from. Doing this will bring some folks to let you know about a non-quack in your area or close to you. Go ahead and put that out so you can begin to get started on the right track.

Take care and try to ease up a bit on yourself. Don't let this thing get to you, someone needs you!

Peace,
David
Been called a "walking medical dictionary".
dtyree
 
Posts: 1383
Joined: Sat Nov 03, 2007 8:43 pm
Location: Nashville, TN


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