ACM and Children--Venting/NCC?

[Guest guest]

Just sitting here wondering about a couple of things. Chiari is " normally "

diagnosed in adults (as we are told), unless there are other things like

spina bifida, hydrocephalus, etc.--at or around birth. But if your child

is symptomatic and diagnosed at 12 Months old, minus the other medical

problems, what does this mean for the future? We were told that about 10%

of the population has ACM and they don't even know it. If this is true, I

am glad they don't know it because it means that they are free of symptoms.

My husband and I just worry that our 3 year old Mason, that has had 9

surgical procedures due to his chiari, will continue to have problems as he

grows. If the adult patients regress slowly....imagine a 3 year old that

has a TREMENDOUS amount of growing and living to do. What is his future?

My concern stems from Mason's recent bladder problems. His stomach shut

down right at the time of his second decompression, so NEW bladder problems

has us VERY worried that it may quit as well. Are we ever going to get to

a point that NO NEW medical problems arise, or are we on a ride that never

ends? Have there ever been a study that follows a pediatric case? Do we

know if babies that have required decompressing are ever near normal LATER

in life?

I appologize for the long winded post, but Mason (age 3 after 9 procedures)

has to deal with problems that require medications (Propulsid, Prilosec,

Carafate, Periactin, and now Ditropan for his bladder), a G-tube for

feeding and medicine, and leg braces. ALL requirements that came on

slowly. What next?

Mason is having a bad day....Can you tell????

Thanks for listening,

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