| Home Forums |
|
#1
Thu Jan 31, 2013, 05:24 PM
|
|||
|
|||
|
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 
|
|
#2
Fri Feb 1, 2013, 01:47 AM
|
|||
|
|||
|
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!
__________________
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
|
|
#4
Mon Mar 25, 2013, 06:06 PM
|
|||
|
|||
|
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.
|
|
#5
Tue Jun 4, 2013, 01:56 PM
|
|||
|
|||
|
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!!
__________________
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.
|
|
#6
Wed Jun 5, 2013, 12:49 PM
|
|||
|
|||
|
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
|
 |
| Thread Tools | Search this Thread |
|
|
Similar Threads
|
||||
| Thread | Thread Starter | Forum | Replies | Last Post |
| New Member Welcome | Marrowforums | Tell Your Story | 185 | Mon Apr 4, 2022 11:53 AM |
| Newly Diagnosed 8 yr old son. ANC and platelets all over the place. | curlygirl | Pediatrics | 46 | Thu Mar 17, 2016 08:44 PM |
| Mum to son with AA | sasba | AA | 5 | Wed Apr 24, 2013 08:42 PM |
| Searching for a similiar case as our son | Sfdcoach | Pediatrics | 5 | Sun Mar 24, 2013 09:19 AM |
