Newly dx'd and trying to sort it all out

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

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Newly dx'd and trying to sort it all out

Postby northstar » Wed Nov 07, 2007 3:41 pm

Hello all! My daughter is almost 10 yrs old. When she was 15 months old, she started having having seizures. She is still is on medication to this day for her left temporal lobe epilepsy.

At about 4 years old, she was diagnosed with autism.

And a couple weeks ago, the pediatric neuro found she had a 2mm chiari. She had an MRI when she was 5 and I guess they missed it. I only recent got internet service again and am trying to understand chiari more.

My difficulty (besides being handed yet another low blow) is trying to sort out which issue is which or all they all related? Does she have seizures because of chiari? Does she have fine motor skill difficulties because of seizures, autism or chiari?

Oh, the doc told me in the office that chiari is congenital and is seperate from her seizure disorder, but I've learned not to take everything for gospel from docs so I know he could be mistaken.

The interesting thing is that my daughter used to get very frequent headaches which now appear to be classic chiari symptoms. Everytime she laughed too much, cried too much, slept too long, woke up too early from a nap...it seemed she'd suffer a headache. This went on for years. My husband bought himself an inversion table because he'd get back pain and he could use his own weight/gravity to stretch his back. One day, my daughter woke up with one of her typical headaches so I decided to put her on the inversion table. She was on for a minute or less and I didn't fully invert her. Also, she was in full control and could come back up anytime she wanted or not even have to get on the table at all if she chose not to. At the time, I figured it would help blood flow to the brain to reduce the headache. When I'd slowly bring her back up again....her headache was completely gone! So, our new routine became the inversion table every time she got a headache. In very short time, the headaches became further apart. She no longer has these headaches. I didn't know about the chiari at the time or I probably would have never done that. What I do know is that she no longer has headaches.

Of course, she still has chiari, but I'm not sure why this would have helped her get rid of her headaches completely.

Like I mentioned, she has difficulty with fine motor skills. In particular, her right hand is far weaker than her left hand. I assumed it was because she has left temporal lobe epilepsy. The good news is that I started making her take piano lessons about 4 weeks ago. She had to use her left hand to hold her right hand when playing the keys. In about 3 weeks of practicing daily, she was able to use her right hand independently.

Still, there is that difficulty sorting out the various diagnoses. I know numbness or tingling in the hands is a symptom. However, my dd can't articulate that well enough. I know she has hyper sensitive fingers. She is super sensitive to wet or textures. She does not seem to be able to tell hot/cold very well. Is this something that would be chiari or autism?

Also, for years, she'd get a stabbing pain(so it seemed, she couldn't articulate it as such) in the top of her feet. I'm not sure what to attribute that symptom to as well.

Other than that, she does not seem to have other issues that look like chiari symptoms that I'm aware of. Unless, the seizures or autistic behavior is also chiari. I am profoundly confused!

I guess I'm also curious if anyone has ever heard of chiari resolving itself? Heheh. I hope that's not too magical thinking, but I had to take a shot and ask if there was such a thing as the brain being able to fix itself like that.

I'm not really sure what the next step is or what questions I even should be asking. The doc is going to give her another MRI in 6 months to make sure the "lesion is not progressing".

I'm mostly glad there is support. If it weren't for such support groups, I don't know where I'd be! Thanks!




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Last edited by northstar on Wed Nov 07, 2007 4:12 pm, edited 1 time in total.
northstar
 

Postby willsmom » Wed Nov 07, 2007 3:59 pm

Hi Northstar and welcome. Boy, it sure sounds like you have been given more than your share of issues with your daughter. But I must applaud you. It sounds like you are a wonderful advocate for her and doing so much to help her. The piano lesson story is awesome.

I certainly can't address all of your questions. As our neurosurgeon told us last week, "There is still so much the medical community doesn't understand about Chiari or Syringomyelia. "

I do not believe Chiari can "fix itself". It is a matter of the hole that connects the skull to the spine (the foramen magnum) being too small. Thus the brain pushes down or herniates.

My son (14) will undergo surgery this coming Monday to decompress his Chiari malformation. The doctor will make the foramen magnum larger and will remove part of the C1 vertebra to make more room for his brain.

This is all very overwhelming in the beginning but you will come to understand it and will get tremendous support from this board.

Good luck to you.
Yvette
This too shall pass.
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Postby gue29291 » Wed Nov 07, 2007 7:41 pm

Hi and welcome,

I am fairly new to this dx too but have been doing alot of research. When you mentioned autism and chiari together I thought I had read something about a connection. There is a Dr. Feldstein from NYC who seem to think there is a connection. Try to "google" Dr. Neil Feldstein and autism and you will come across some things, including an interview on Channel 7. Why don't you try sending him an e-mail too. My daughter is 6 and and just diagnosed so I was looking for doctors in NY, saw his name mentioned here and found his e-mail address. I e-mailed him about the appropriateness of tests another doctor had ordered and he got right back to me, which really impressed me. His e-mail is naf6@columbia.edu
Good Luck!!

Ginny ( Mom to Nicole w/ goldenhar syndrome and newly dx Chiari and syrinx-- It's always something new!!)
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