Daughter, age 12 just diagnoised 10/10, HELP

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Daughter, age 12 just diagnoised 10/10, HELP

Postby hagiefamily » Wed Feb 09, 2011 1:59 pm

Just wanting some tips, suggestions, advice etc

Mom from Iowa
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Re: Daughter, age 12 just diagnoised 10/10, HELP

Postby razzle » Thu Feb 10, 2011 6:47 am

hi Mom from Iowa , I am in Iowa too. The most important thing is get her to a chiari specialist and Dr. Menenz in Iowa city is your man. If you havent get your family dr to refer you to him and to him only , if not they will set you up with another dr. Roz

http://www.uihealthcare.com/depts/med/n ... nezes.html

http://www.asap.org/index.php/about-us/ ... ory-board/
Once you choose hope, anything's possible.

Roz( Razzle51 or Rosalyn
Iowa
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Re: Daughter, age 12 just diagnoised 10/10, HELP

Postby hagiefamily » Thu Feb 10, 2011 9:26 am

Thanks for the reply, but we did see Dr Menezes and he left us hanging and not answering our questions about her siezures, are they related to the CM1 or are they something else. Dr. M doesn't seem too concerned and he pretty much just told us he would see us in a year. No one can tell us if her siezures are related or not. We are now going to the Mayo to be checked out.
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Re: Daughter, age 12 just diagnoised 10/10, HELP

Postby razzle » Thu Feb 10, 2011 11:01 am

hate to say this but I dont think you will get any satifaction with Mayo either . You can type Mayo in the search box and it will tell you alot . I also recommend my NS if you are interested . R
Once you choose hope, anything's possible.

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Iowa
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Re: Daughter, age 12 just diagnoised 10/10, HELP

Postby razzle » Thu Feb 10, 2011 11:08 am

I left you a mesage on FB but contact Racheal she lives in Cedar Rapids with a child that has chiari . maybe she can help . tell her I sent ya

http://www.facebook.com/home.php?#!/pro ... 1643328609
Once you choose hope, anything's possible.

Roz( Razzle51 or Rosalyn
Iowa
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Re: Daughter, age 12 just diagnoised 10/10, HELP

Postby hagiefamily » Thu Feb 10, 2011 11:37 am

I too live in Cedar Rapids, thanks
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Re: Daughter, age 12 just diagnoised 10/10, HELP

Postby hagiefamily » Thu Feb 10, 2011 1:50 pm

I rarely check FB, but I can be reached at my e-mail address hagiefamily@yahoo.com and put chiari message in the subject line so I don't think it's junk. I would really like to talk to the lady in Cedar Rapids

Thanks, Mom in Iowa
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Re: Daughter, age 12 just diagnoised 10/10, HELP

Postby lttutrow » Thu Feb 10, 2011 10:00 pm

Another Mom was asking this same question on my facebook wall, and a few other Moms chimed in about it. I don't know that any of them have been given firm answers about whether or not seizures are related, but it does seem that a lot of adults and children with a Chiari also have seizures. In my 'just a Mom' opinion, it would make sense in a way that if the icp is raised, that pressure could cause the seizure...but I'm no expert by any stretch.
My daughter is 13 and my son is 12, both had decompression surgeries in 2008. I'm really sorry to hear your daughter has been diagnosed, and hope you can find a nsg that you're comfortable with!
Lori
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Re: Daughter, age 12 just diagnoised 10/10, HELP

Postby hagiefamily » Fri Feb 11, 2011 12:34 pm

Thanks for the response.
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