Nutrition Suggestions for Child with Low Muscle Tone

[Peg Allen]

Has she tried contacting the international support group for Arnold-Chiari?
In the Online version of the American Self-Help Clearinghouse at
http://www.cmhc.com/selfhelp/, I found this listing using their search form:

Arnold-Chiari Family Network 

     International network. Founded 1985. Informal network of families
affected by
     symptomatic Arnold-Chiari and Chiari Malformation. Also network for adults.
     Provides information, phone support, and networking of families. Write:
     Arnold-Chiari Family Network, c/o Maureen and Kevin Walsh, 67 Spring St.,
     Weymouth, MA 02188. Call (617)337-2368. 

There is also a link on this page to information about online support
groups.  However, you'd have to check this out yourself to see if any
applied, as none seemed this specific.  There are online groups for
developmental disorders and for spina bifida.

I've replied to the list, as others might want to check this web site for
other support groups.  It's one of my favorite sites, based on a small
reference book (a bargain at $10).  Ed Maderas from the Self-Help
Clearinghouse has spoken at various consumer health informatics conferences
- I got to meet him when he presented at the National Wellness conference
back in 1993.

Peg

At 03:18 PM 3/15/97 -0800, Carolyn Gleason wrote:

>Dear Colleagues:

>

>I am corresponding with a parent of a three year old boy with Arnold

>Chiari Syndrome - it is caused by malformation in the brain, causing

>pressure on the .  She has had many problems with health care providers

>so I think she hesitates to ask this question to his doctor(s).  Can

>anyone offer some advice?  I gave her my experiences and suggestions,

>but my son's Arnold Chiari was much more severe and he had spina bifida

>and hydrocephalus, which her son does not.  I think her son has Type I

>(see below).   I'd like to hear from others with more clinical

>experience, and pass them on to her.  She gave me permission to share

>her question with you all.  I have inserted an explanation of the

>syndrome from the web site of Columbia-Presbyterian Medical Center.  

>

>"...(I am) wandering if  your son had any problems keeping on

>  enough weight.  I am having a very hard time getting enough 

>nutritional information on the failure to thrive issue with (my son). He

>is far below even the 5%  mark.  I don't know what to do anymore.  I

>know he eats alot but it all seems to leave as soon as it goes in. He

>has so much energy that , if he eats a

>bannana  he has energy for an hour or so then he  is so tierd I  have to

>almost force feed him so he will stay awake, then it starts all over

>again. I have tried  Low sugar  high fat  foods but nothing seems to do

>the trick. ... If you have any information on the dietary needs of a low

>tone A.C. child please let me know." 

********************************************
Margaret (Peg) Allen, MLS-AHIP
Library/Information Consultant 
Resource Librarian Consultant for Cinahl Information Systems
Library Consultant for Northern Wisconsin AHEC, Inc.
PO Box 2, 308 Kann,  Stratford, WI 54484-0002   
(715)687-4976 or (715)687-2287  Fax:(715)687-4976
pallen at tcccom.net