Could this be Chiari?

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

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Could this be Chiari?

Postby mommyjamieof2 » Wed May 05, 2010 1:07 am

I have a 7 year old with uncorrected metopic craniosynostosis. He has a continuous cough that started last summer lasted 6 months and then settled a bit and would not respond to allergy or asthma or acid reflux treatments was also diagnosed as possible tic. He also had blood work to see if they could find a cause but it was all normal. We were sent for a CT scan to seek out a cause for the coughing but nothing came back very abnormal and I don't think they would have seen chiari it was just his skull? The coughing has settled down alot but he still does coughs every day a few times an hour. And I should add it is not mucous kind of cough it is a dry more like a clearing throat cough. He says his brain hurts when he coughs. He also seems to have troubles breathing when sick or when he runs. They say this is reactive breathing but I don't think the inhaler helps.
We also were sent to a nuerologist to see if it was something to worry about with it being a tic but he did a few tests like watch the finger up and down and talked to him a few minutes and said he was fine.
He has a hard time with balance as far as like riding a bike, skate shoes, or anything of the sorts.

Thanks in advance for the adivce
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Re: Could this be Chiari?

Postby Sara » Wed May 05, 2010 5:35 pm

Chiari is diagnosed with a cervial MRI. It is not well visualized with CT scan. At this years ASAP conference we will have a special session on cranial abnormalities and Chiari.
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Re: Could this be Chiari?

Postby lcolangelo » Fri May 07, 2010 11:32 am

A "chiari headache" is usually brought on or made worse by some sort of straining-- coughing, laughing, crying, yelling, pooping, etc. It is a pain my kids get in the back of the head, upper neck area-- immediately following such activities. With my younger son-- it doesn't last long--- just a few minutes. My daughter recently started with much worse headaches-- all the time-- still in the back of the head-- but agian made worse by straining. When my daughter was first diagnosesd- a continual cough/respiratory infection was her first symptom. They also thought it was reflux. (actually went as far as doing a fundoplication). It wasn't until she began verbalizng her head pain (she was only 2) that they finally did an MRI. Plain x-rays will not show a chiari-- they would need to do an MRI for diagnosis. Hope this helps== good luck to you.
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Re: Could this be Chiari?

Postby twinsmommy » Sun May 09, 2010 6:09 pm

Hi Jamie,

I just emailed you. :) Things are a bit hectic here. On the cranio board one of the mom's posted a link to a study re: untreated metopic craniosynostosis and the prevalence of chiari malformations in these children. I cannot find the link but I am still searching for it. I would continue to pursue getting information from TX. I would even explain to him your concerns re: the cranio and possibly a CM. He might be able to guide you on what to do next.

Hang in there!!!

Hugs
Michelle
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