new diagnosis

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

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new diagnosis

Postby rdela » Fri Mar 07, 2008 8:56 pm

HI,

I'm a mom of a sweet 8 yr old girl. She has a disease called mitochondrial disease. This involves the inability to make energy effectively at the cell level. She has many problems and symptoms due to her mito. In the process of investigating one symptom her NL ordered a spinal MRI. It came back with a CM. So a 2nd MRI was ordered. It showed a mild CM and no CSF flow problems. My big dilemma is that she has been having symptoms of CM for 2 yrs. We were contributing them to her mito. Mito can cause autonomic system problems. Even knowing this her mito specialist couldn't explain the symptoms and had not seen them in other mito kids. Now that I've been investigating CM I'm seeing her symptoms here. Her NL didn't want to send her to the surgeon and didn't think she needed treatment. He agreed to refer us because I insisted. I want to see what a surgeon has to say.

To complicate all of this, if her symptoms aren't CM then her mito is progessing more quickly than in the past. This would not be good. Mito has a high mortality rate in kids like my daughter. If it is the CM and can be helped we want to try. If it's the mito nothing can be done and she is getting much worse. Also she has MRIs on a regular basis since mito affects the brain. She has never had a CM before.

So after all of that here are my questions. Does anyone have kids with other diseases? Does anyone have kids with normal MRIs then show up with CM? Knowing her symptoms can be caused by CM how should I proceed with the sugeon? I would like to try and fix it but surgery is even more dangerous for mito kids. Once on a vent for anesthesia she may not come off of it because of the mito. I'm just lost right now. Can anyone help?
rdela
 
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Postby youngwife » Sun Mar 09, 2008 6:43 pm

Hi!
I am so sorry that you daughter has Chiari. My daughter has this as well.

I would highly recommend that you find a chiari expert, not just a NS.

If I can help in any way, please let me know.

Rebecca
Homeschooling mom to 6 wonderful blessings from the Lord. ~ "Let no corrupt communication proceed out of your mouth, but that which is good to the use of edifying, that it may minister grace unto the hearers." - Ephesians 4:29
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youngwife
 
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