Any thoughts?

[mama2kaity]

Hello,
My sweet baby girl was dx with infantile scoliosis back in May of this yr. she was then sent for a spine and brain MRI.
The spinal MRI came back normal, with no tether or congenital problems seen. Her brain MRI did come back with a small Chiari 1 malformation.  She has never had any noticable symptoms related to Chiari. We may not have ever known she had one, if we hadn't have gotten the dx of scoliosis.  She currently wears a Mehta Cast for her scoliosis and is responding well to that form of treatment.  She see's the Cheif NS of Detroit Childrens Hospital, Dr. Hamm.
He read her spine and brain MRI and confirmed that their was no sign of a thether, but did note the Chiari.
He said it is currently small and since she has had no symptoms that surgery right now, would not be needed.
She see's him every 3 months for check-ups. We see him again on the 15th of December.
I was just wondering if there is anything we should be watching her for?  She is only 16 months and cant tell us yet if she has any kind of pain.  My husband and I like her NS and feel we can trust him.
She is on Molina Healthcare of MI and she can only use this insurence in MI.  I am not sure if there's any spelialists for Chiari in MI?  I am not sure we really need to change her NS as of right now either.
Any thoughts?
Rachel - mama to Kaitlyn

[selmaS]

Hi Rachel....I thought this might have been a diff question...I did answer on the other thread....

Here is the link to our drs list...u will still need to research the drs...there is a Mott's Childrens Hospital....on the list....

http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/1293483#post_6291511

We r happy to have u join our little family here, but so sorry for the reasons that brought u.

"selma"

[mama2kaity]

Hi Selma,
They did not say she had a CSF blockage, so we don't have to worry about that.
I have tried the NS at Mott's Childrens and they dont take her insurence. I will try to call the other NS group in Grand Rapids to see if they do.
She doesn't have issues with eating, she's a great eater!  As far as sleeping goes, she does have nights where she'll be up a few times.  But I believe that is bc of her cast, she can't get to comfy in a body type cast. poor thing.  
But I haven't noticed any other changes in her.
Rachel

[selmaS]

Well to be safe, I would have the sleep testing done....too many drs do not associate this issue with chiari and bcuz of her age, she can not tell u if it is the cast or something else.

I am glad she is eating well...and no CSF blockage.

That is a shame that the Childrens hospital doesn't take her insurance, but as long as u have a pediatric chiari dr for when she needs one u should be ok.

"selma"