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MMA skin biopsy
- By malachismom · New reply September 12, 2009
- Discussion in Pre-natal and newborn screening and diagnosis · 1 reply
- My son was flagged at his newborn screening for high MMA levels. He also has low B12 which corrected after starting injections, so it appears he may have B12 responsive MMA. We just did a skin biopsy ...
newborn just diagnosed with mut 0
- By gus2009 · New reply September 10, 2009
- Discussion in Raising a child with an organic acid disorder · 3 replies
- Hello, I am new to this. My 3 month old daughter was diagnosed with MMA a 5 days old and we finaly recieved the results of her skin biopsy and she is mut 0. I am having a hard time finding encouraging ...
Where Does Time Go?
- By psjaquith · New reply September 5, 2009
- Journal · 2 replies
- I didn't know how long it had been since I've been on here. I don't know how time gets away the way it does when it is such a precious commodity. I suppose part of it is just the busy part of life. I ...
no place like home
- By Jesana · New reply August 16, 2009
- Journal · 5 replies
- so I went on Monday and had the baclofen pump replaced. they had a difficult time placeing the iv at least they put numbing medicine . finally the surgeon came he was able to put one in my foot. I liked ...
Guestbooks are now live!
- By TeamInspire · New reply August 15, 2009
- Journal · 6 replies
- Hello everyone, Last week we mentioned that we'd be adding guestbooks to Inspire in the near future, and they are now live! We're very excited about this feature and hope you enjoy it. To check out your ...
Scheduled maintenance this evening
- By TeamInspire · New reply August 12, 2009
- Journal · 13 replies
- All, Inspire will be performing database updates this evening starting at 8:00 Eastern. We expect the updates to take no more than 2 hours and the site will be unavailable at this time. We thank you for ...
The first and only known patient alive who suffers from congenital glutamin
- By ammarajool · Posted August 12, 2009
- Journal · 0 replies
- The first and only known patient alive who suffers from congenital glutamine synthetase (GS) deficiency: a journey for finding a diagnosis. This patient is of low glutamine and elevated ammonia as in ...
measure the enzyme (glutamine synthetase) in the blood of your children
- By ammarajool · Posted August 12, 2009
- Discussion in Symptoms and treatment · 0 replies
- Hallow My son is the only one alive patient who is diagnosed with (glutamine synthetase deficiency) . but he shared, with the propionic acidemia and methylmalonic academia , the biochemical abnormalities ...
Here I Go Again!
- By psjaquith · New reply July 26, 2009
- Journal · 1 reply
- I get a needle biopsy in right side thyroid (isthmus and left side already removed) in the two tumors there. The small and large look like they are trying to merge. I would so much rather it removed anyways ...
New to this!
- By kate63 · New reply July 14, 2009
- Journal · 4 replies
- What a great idea this is. I hope to find answers regarding insurance and doctors, and also for pain management; and in return to provide inspiration with my own experiences. The best medicine, in my ...
Share your story via video!
- By TeamInspire · New reply June 23, 2009
- Journal · 28 replies
- Sometimes the most powerful message each of us can share is our personal story -- our own experience. With upcoming healthcare legislation pending, one way we can be advocates is to share these stories ...
Follow Inspire on Twitter and Facebook!
- By TeamInspire · New reply June 12, 2009
- Journal · 32 replies
- We're happy to announce that you can now stay in touch with what's happening at Inspire by following us on both Twitter and Facebook. While Inspire communities are still the best places to connect with ...
Guestbooks - An exciting addition to Inspire
- By TeamInspire · New reply June 9, 2009
- Journal · 36 replies
- Hello everyone, We're writing to let you know about a great new feature we'll be adding to Inspire in the very near future: guestbooks. This is a feature that many of you have requested, and we're very ...
blind from not processing it correctly in the brain?
- By keerasmom · New reply June 2, 2009
- Discussion in Raising a child with an organic acid disorder · 2 replies
- Keera hasn't ever stopped moving her eyes or acted like she could see since she was born, they used to go side to side quickly and then plung deeply down to where you could just barely see any of her ...
Moms, you rock!
- By TeamInspire · Posted May 1, 2009
- Journal · 0 replies
- Looking for a unique and extraordinary way to say "thank you" to your mom? In honor of Mother's Day, good friend of Inspire Dr. Gwenn (of http://www.PediatricsNow.com and http://www.DrGwennIsIn.com) will ...
Keep on Moving
- By psjaquith · Posted March 5, 2009
- Journal · 0 replies
- On Tuesday, I had an orthoscope on both shoulders, on Weds. we were in ER with my daughter Sherry (d-2-hydroxyglutaric aciduria w/mixed disabilities), today I am working on getting those arms and shoulders ...
Bone Marrow Transplant for Organic Acidemia?
- By Kristinna · New reply February 5, 2009
- Discussion in News and research · 3 replies
- Has anyone had any experiece with this? My infant has Beta-KetoThiolase Disorder and I asked her Doc about this and he said it may be an option. I am looking to see if anyone out there has ever done this ...
I Suppose I should start
- By psjaquith · Posted January 12, 2009
- Journal · 0 replies
- My last post read more like a journal entry. My frustration with physical limitations, my frustration with lack of understanding, some bouts of depression some neuro related from brain injury. I feel ...
Oral Fixation
- By boulder50 · New reply December 18, 2008
- Discussion in Raising a child with an organic acid disorder · 1 reply
- Is the oral fixation my grandson has: 1. always having something in the mouth 2. tasting the floor,walls, toys, everything in sight more with him because of the acidemia or is it just the normal growing ...
Cambrooke Foods - Product Recall Notice!
- By oaanews · Posted December 15, 2008
- Discussion in Nutrition and recipes · 0 replies
- Product Recall Information URGENT: FOOD RECALL NOTICE Dear Valued Cambrooke Customer, Cambrooke Foods® is announcing a voluntary recall on its Imitation Cream Cheese and a market withdrawal of its Peanot ...
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The Organic Acidemia Association Support Community connects patients, families, friends and caregivers for support and inspiration. The Organic Acidemia Association Support Community is sponsored by the Organic Acidemia Association in partnership with Inspire.