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kim lund
jeudi 20 décembre 2007 00:58
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Moms, I may be speaking for just myself, but I expect many "New AGS moms" feel the same. There is not enough practical info available..As a clinician I would be happy to compile data for parents..stuff like who got immunizations? was there an adverse effect? What bottles worked? What calming techniques worked? who has communication? What kind? when started? who sits? At what age? What activities/therapies were provided? Who wears glasses? How was that need determined? So many practical questions with no easily found answers...If anyone is interested in participating in a questionaire..so I can then compile, and share with old and new and not yet arrived parents. Please email me bonitalunds@aol.com
Thanks for helping us maximize our children's potentials
Kim
Thanks for helping us maximize our children's potentials
Kim
Hamida Rafiq
mardi 18 décembre 2007 09:48
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hi stephanie adam suffers from alot of colds and alot of congestion his sinus"s get quite bad i have tried everything from aromotherapy oils to vicks in the end we put boiled water with vicks and steamed adam with a towel over his head that seemed to work more than anything else
HamidaRafiq
mardi 18 décembre 2007 09:42
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hi kim tried to email regarding your question on ummar but i had problems trying to deliver the email to your email address it kept failing ummar seems to have better control over his body whereas adam had always been floppy since birth ummar seems to enjoy his food alot more where as i still struggle to feed adam
Veronica Wallace
dimanche 16 décembre 2007 17:42
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We still have not gone through with testing Gabe for AGS. Our doctors aren't positive that that is what he might have (and what may have killed his brother) The doctors are also looking into a disease call Vanishing White Matter disease. Any one know of a support group that might have more information about this disease. Gabe will be 18 months on 12-23-2007. Please feel free to email. My email address has changed.
Stephanie
samedi 15 décembre 2007 14:13
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We just discovered our 5 yr old daughter has AGS. I am wondering if any other child have cold like symptoms that last for weeks/months. We hope to see and ENT soon. Any input would be appreciated.
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