Hello! Newly diagnosed 5 year old

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

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Hello! Newly diagnosed 5 year old

Postby Skyrose » Mon Oct 17, 2011 11:13 pm

Hello all,

I've been lurking for a few weeks, but haven't gotten a chance to introduce myself. My name is Janet and I live in Pittsburgh, PA. I have two boys on the Autistic spectrum (both mild) with a few other things thrown in to keep me busy. ;) My oldest is 8 and my youngest is 5.

This past winter, my youngest was diagnosed with motor tics and was sent to a Tourette's Syndrome specalist at Children's Hospital of Pittsburgh. That was confirmed and the doctor was concerned about his weird copper levels which another doctor was monitoring. They were looking to rule out Wilson's Syndrome and so he decided to go ahead and do a MRI (they had checked eyes, blood, and urine levels and they were all really low). They did the MRI in August and I got a call in September that the MRI was told pretty much "The MRI was unremarkable. He did have a Chiari, but it's nothing to be concerned with." I didn't really like that, so I looked into it a bit more and talked with another doctor who actually explained what Chiari is. I asked the doctor who ordered the MRI to send me a copy of records, but they never got around it. So I requested a copy from medical records.

From there, I looked on here and talked to a friend of mine who is an OR nurse. He suggested I go to Dr. Tyler-Kabara at Children's Hospital of Pittsburgh to talk to her. He knows from working in the OR that she's a very good doctor for surgery and knows she will talk to patients. (I love having people on the inside!!) I called her office and told them we had the MRI and I was concerned since my son doesn't feel pain normally that I don't know what to watch for. Most of the websites say to look for certain pain issues. He either has a very high threshold for pain or doesn't feel pain sometimes -- we can't figure it out. (He slammed his fingers in the car door this summer and only cried until my husband said he wasn't going to give him a band-aid (he wanted to watch it for swelling and there were no cuts) and then he stopped crying about 2 mins after it happened. He also has had two eardrums burst. Last year he had surgery for ear tubes, removal of adenoids, repair of a hernia, repair of a spermatic cord hydrocele, and repair of a hydrocele. The urologist was amazed he could still walk with how severe they were, yet within 5 hours of the surgery, he was up and running -- literally.)
Anyways, so I tell the nurse at Dr. Tyler-Kabara's office that and she was immediately concerned since we wouldn't know if he was having any symptoms. He's also a daredevil and LOVES jumping off of high things and diving head-first off of things. The poor nurse was about hyperventilating on the phone! *lol* She should spend an afternoon here with us! ;) She made an appt for us for the 25th.

We went to our pediatrician today for a sinus infection for one kid and a stomach bug for the other!) and I mentioned to our doctor we were going to a neurosurgeon to talk and right away our ped said "Oh, make sure to go to Dr. Tyler-Kabara! She's awesome and listens to her patients!"

So what I'm wondering from you guys... any advice on what to ask the doctor?
Any advice on what I should watch for myself?

Thanks :)

Janet
Skyrose
 
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Joined: Mon Sep 26, 2011 1:01 pm

Re: Hello! Newly diagnosed 5 year old

Postby cari » Tue Oct 18, 2011 4:11 pm

Janet,

It sounds like you are already on top of this thing, but just a few things I can think of from my experience. My daughter has a 13 mm Chiari and has never experiened any symptoms. Her Chiari was diagnosed from a CT done when she fell from my husband's shoulders and fractured her skull. Based on the CT, the NS felt it prudent to get an MRI of her head and entire spine. The MRI revealed extensive syringomyelia, which can be caused by Chiari. According to her NS, even though she wasn't really experiencing symptoms or problems, the presence of the syringomyelia necessitated surgery. So my advice would be to ask the NS for an MRI of the spine, if one wasn't already done, so that you can get a more complete picture.
There are many things to watch out for besides headaches. Some patients report pain in the neck and shoulder area, difficulty maintaining balance, and even frequent hiccups. If syringomyelia is present there is another list of possible symptoms.
Good luck to you.
cari
 
Posts: 13
Joined: Thu Nov 04, 2010 8:43 am


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