My Grandson just dx

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

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My Grandson just dx

Postby Lindaca » Sat Dec 26, 2009 1:13 pm

My 17 month old grandson was just dx with cm a few weeks ago we got the mri results back and they said something about it being 1cm .. not sure what that means or if he is going to need surgery.. very confused about the whole thing still .. i have read some of the symptoms of cm one of which said that they have weakness in the arms and legs. He just started walking a few weeks ago .. and is still not talking at all not sure if that is a part of it or not . waiting for him to go to the doctor again hopefully soon to see if he is going to need surgery. any advise or has anyone else had this happen to any one has young have been reading posts but haven't either seen or missed if there were any babies with it youngest i think i read on here in posts was 3 years old
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Re: My Grandson just dx

Postby youngwife » Sat Dec 26, 2009 1:51 pm

Hi there, Linda! Welcome to ASAP. I am sorry that your grandson is dealing with Chiari, but I am thankful that they have accurately diagnosed him.

This site is a great resource, but you may also want to check out the Chiari parents groups over at Yahoo groups. You may find more parents with young children there. I know that there are parents here that have had young ones diagnosed, but many of them are sooo busy, they don't get to post here much.

A few more good resources:
http://www.chiarione.org
http://www.conquerchiari.org



My daughter is 15, but I have spoken with several parents of young ones that have been diagnosed with Chiari. If you need help or have questions, please feel free to ask. And I will be anxious to hear what is learned from this next visit with the doctor.

Blessings,

Rebecca
Homeschooling mom to 6 wonderful blessings from the Lord. ~ "Let no corrupt communication proceed out of your mouth, but that which is good to the use of edifying, that it may minister grace unto the hearers." - Ephesians 4:29
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Re: My Grandson just dx

Postby Sara » Sat Dec 26, 2009 8:46 pm

Welcome to ASAP. Please request a new info packet if you have not already. This article specificically deals with the problems in the younger child: http://www.asap.org/articles/102-1.html You need to see a pediatric neurosurgeon, usually you can find one at a Pediatric hospital. They are the best suited to determine if surgery is needed.
Hang in there and let us know if you have any specific questions.
Sara
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Re: My Grandson just dx

Postby razzle » Sun Dec 27, 2009 10:05 am

Once you choose hope, anything's possible.

Roz( Razzle51 or Rosalyn
Iowa
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