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Kids' Health Kids' Health

Just found out my son.....

Posted by on Sep. 18, 2012 at 9:18 PM
  • 20 Replies
So my son has been getting headaches on and off for some months now, they were getting worst and recurring more and more often. So about two months ago he had gotten a cat scan of the head and an MRA of his head, thank u god that was normal. Last week he went for his MRI, he was supposed to have it done with sedation he's 9 years old, and I was so so proud of him because he did it without sedation (his choice).

Well I called the Dr today and he said my baby has Chiari Malformation level 1, and that he's going to refer him to a Neurosurgeon for possible surgery :( . I did not tell my son anything but I have done my research and I'm. It just going to let the first Dr do surgery on my son, I will get a few different opinions first. Ahhhhhhh my baby boy, have any of u ever gone thru something like this? Need some comfort.....
by on Sep. 18, 2012 at 9:18 PM
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Replies (1-10):
Mipsy
by Bronze Member on Sep. 18, 2012 at 10:49 PM
*hugs* I'm so sorry. Try the special needs kids board! And what an awesome and brave little boy you have doing that all on his own! Seriously, awesome!!!
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ProudMommy51006
by on Sep. 18, 2012 at 10:57 PM
First of all, BIG ((HUGS)) I haven't heard of this diagnosis. But please keep us updated and my thoughts are with you and your little Guy!
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JaxMomma78
by on Sep. 19, 2012 at 2:20 AM
I had major back surgery when I was 7. It was scary, but my parents always reassured me that the drs knew best, and they would make me feel better. I remember trusting the drs and nurses. That's what got me through it. Plus, everyone was always honest with me about what was going to be happening. They helped develop a routine even for the short time I was in the hosp, so I knew what to expect, if that routine was thrown off, I wd get upset. My dad.bought a leather bound book of Alice in wonderland, and read me a chapter every night. I still have it. I had a doll I brought in the operating room with me and I wrapped rosary beads around him. I still have the doll, too.
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TerriC
by on Sep. 19, 2012 at 7:30 AM

I have not heard of this, but hope everything works out well.  Please do keep us posted on his progress!

batjmom
by Sarah on Sep. 19, 2012 at 8:35 AM

 I have not heard of this.  I sure hope that everything works out.  Hugs

PaxtonsMama2010
by on Sep. 19, 2012 at 8:39 AM
I'm pretty sure my friend had that and she had surgery to fix it. She is doing awesome now, no more headaches (she had lots if other issues and they are better as well)

Keep positive. Hugs my thoughts are with you and your son.
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new_mom808
by Andrea on Sep. 19, 2012 at 7:59 PM

 I'm so sorry. I dont have any experience with this. Do they think surgery will be necessary?

PrincessZ20
by on Sep. 19, 2012 at 9:36 PM

I'm not familiar with it, but I'm glad they have a diagnosis - hopefully he an get the help he needs now!

Good luck!!

MELRN
by on Sep. 19, 2012 at 10:14 PM

I am so sorry for you and all that the 2 of you will go through!


Go to the MAYO clinic! They are THE BEST! I have a family member with Chiari II  which is the congenital type--  we did extensive research before we got a Dr-- since then I have ref SOO many patients to them (mostly type 1)  they do a  GREAT JOB.  

kellynh
by on Sep. 20, 2012 at 9:12 AM
I am so sorry :(
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