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AA Aplastic anemia

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  #1  
Old Thu Jan 31, 2013, 04:24 PM
Sfdcoach Sfdcoach is offline
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Location: NY
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Searching for a similar case as my son

Hi I'm the parent of a 3 y/o boy who has been diagnosed with AA in march of 2012 unfortunately this isn't his only diagnosis. He is also diagnosed PDD-NOS which lies on the Autism spectrum. He has 2 possibly 3 other medical issues as well I am in search of another similar case. I have been looking for another family like ours to compare notes and find help in suggestions on how and where to proceed on our way to a now suggested BMT. Please if anyone has any information contact me I'm starting to think my son is the only case with a child on the spectrum with AA.
Thank you. -T
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  #2  
Old Fri Feb 1, 2013, 12:47 AM
Heather8773 Heather8773 is offline
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Location: Houston, TX
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Hi
there is a woman in a support group I attend who's very young son had a bone marrow transplant a couple of years ago due to a dx of AA. I can see if I can put her in touch with you if you like. Her son is doing amazingly well now!
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Heather, wife of Ronald 36; dx PNH 2012; Dx VSAA 2013; eculizumab(Solaris) hATG 2/20/13 cyclosporine 400 mg daily. 37 units RBC and 15 units of platelets. Post BMT -pentam,vorconizole,valtrex, valcyte, actigall, Pepcid , prograf, magnesium.
10/10 MUD 10/10/13
Now no PNH or AA. Mixed Chimerisim
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  #3  
Old Mon Mar 25, 2013, 02:56 PM
sasba sasba is offline
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hiya my son is 11 and was diagnosied with AA in July, he also has ASD and learning difficulties. im new to all this but if you want to message me feel free xx
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  #4  
Old Mon Mar 25, 2013, 05:06 PM
Neil Cuadra Neil Cuadra is offline
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Sfdcoach and sasba,

As another source of contacts I suggest that you take advantage of the Peer Support Network of the Aplastic Anemia & MDS International Foundation.
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  #5  
Old Tue Jun 4, 2013, 12:56 PM
Robi1Knobi Robi1Knobi is offline
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Join Date: Mar 2007
Location: Austin, Texas USA
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gluten-free diet in Autism

Dear T, in case you haven't already researched, check out what a gluten-free diet before the age of 5 can do. Hope your baby gets better soon!!
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Linda, 47 yo, married, mother of a teen, moderate AA w/ TERC mutation (2007 NIH), Pulmonary Fibrosis 2010, was on Danazol study (Aug 2011-2013 & restarted 9/14/15), last transfusion May 2011. On Promacta now. Needing a double lung and stem cell transplant.
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  #6  
Old Wed Jun 5, 2013, 11:49 AM
Lbrown Lbrown is offline
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I just started a gluten-free diet to get rid of a rash I have had for 5 years or so. It is now gone. I have since read a bunch of things about anemia & celiac. It'll be interesting to see what happens to my counts, so far I have less fatigue.

Good luck,
Deb
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