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Old 01-08-2013, 11:45 AM   #1
TeamKameron0703
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New here! I have a Chiarian!

I'm new to DS(loving it!) And I wanted to introduce myself. I have 3 children. But the one I'd like to talk about for now is my middle child....Kameron is 2 years old. At 4 months old, he was diagnosed with Cerebral Palsy, Kyphosis, Protien Intolerance, Severe AR, Malrotation, and Failure to Thrive(soon after birth) He is developmentally delayed as well. At 11 months old, he was diagnosed with a rare brain disorder called Chiari Malformation. At 21 months he underwent his first decompression surgery, and on Dec 3rd, at 28 months, he had his second deompression surgery along with a craniectomy, duraplasty, and laminectomy. We spent almost 3 weeks in PICU and 1 week on the regular floor, even Christmas was "celebrated" in the hospital. If there is a complication after decompression, Kameron had it. He's our special child and we wouldn't trade him for the world.
We participate in Conquer Chiari walk's in September and do everything in our power to raise awareness for Chiari because it truely does matter! And someday, I hope to save another family from going thru what we've had to go through!

Anyways, I'd love to meet other Chiari mother's and hear your stories! Feel free to ask any questions!

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Old 01-09-2013, 05:20 AM   #2
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Re: New here! I have a Chiarian!

Glad to have you here! My youngest is profoundly autistic and has delays but we have been very fortunate that he is physically healthy.
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Old 01-09-2013, 06:01 AM   #3
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Re: New here! I have a Chiarian!

Welcome. I am familiar with Chiari but don't know a whole lot about it. Do you have any links where I could read more.

Our 3rd child has CP, he was a micro preemie born in Sept 2011 at 26 weeks so we are just starting our journey but can relate to spending so much time in the ICU.
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Old 01-09-2013, 10:09 AM   #4
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Re: New here! I have a Chiarian!

Welcome. My oldest son has Chiari also, in addition to other health issues. Though not CP. He had a decompression when he was 5 due to a syrinx but thankfully hasn't needed another one so far.
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Old 03-16-2013, 04:58 PM   #5
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Re: New here! I have a Chiarian!

Hi! My 9 mo. old son was recently diagnosed with Chiari. I'm still learning and have a lot to navigate. He started having seizures @ 6 mo old. He is on keppra for that, and it seems to control them. He also has shorter "episodes" that we're not really sure what to call or what they are, but they are not epileptic in nature, according to his eeg. his eyes go blank, his body goes limp for 1-2 minutes.
They found the Chiari on his MRI. It wasn't for another 3 weeks that I was told. His neurologist called me the day of his MRI with results and told me "his MRI is clear." @ his 9 mo well check up, his pediatrician told me about the Chiari. he came into the appointment assuming I knew. He was just as baffled and frustrated as I am @ why teh neurologist didn't tell me. I'm trying to decide on the next step- finding a new neurologist or finding a neurosurgeon, etc.
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Old 03-17-2013, 08:25 PM   #6
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Re: New here! I have a Chiarian!

Well we don't see a neurologist but my son has also never had seizures. I'd definitely suggest getting into a neurosurgeon whether or not you decide to swap neurologists though, they're the ones that would handle any chiari issues. I'd try to find one with some experience with Chiari malformations. Conquer Chiari is a good site for information, http://www.conquerchiari.org/pediatr...ric-index.html
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Old 03-19-2013, 05:28 PM   #7
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This is new to me but I have syringomyelia (a syrinx in my spinal cord, can be common in those with Chiari) and a cavernous malformation of the cerebellum. I only found out about this 6 months ago but it explains the years of chronic pain I've dealt with that doctors couldn't understand why everything seemed to hurt me so much more. I'm in the early stages of seeing doctors. I'm sorry I can't offer more info.

Stephanie, mom to 3 big girls (10, 13 & 19) & 1 sweet little guy (3)
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