Home         Forums  

Go Back   Marrowforums > Treatments > Pediatrics
Register FAQ Search Today's Posts Mark Forums Read

Pediatrics Treatment for juvenile patients

Thread Tools Search this Thread
Old Mon Nov 17, 2008, 03:45 PM
mom2c2008 mom2c2008 is offline
Join Date: Jun 2008
Location: crown point indiana
Posts: 2
Question Is there anyone who has a child with MDS?

This disease is so rare in children. I have a 7 year old daughter who was diagnosed in January 2008. She had a BMT is April and relapsed in July 2008. She was then infused again in July with Tcells and started GVHD in August. Overall this was a terrilble year for us but I am happy to say her engrafment is up to 99% and the GVHD is getting better. The runx1 gene that cause all this is gone also. I just want to know if anyone has a child who has beat this terrible diease? All the stats on long term survival in children are not good.
Reply With Quote
Old Tue Dec 2, 2008, 03:39 PM
Neil Cuadra Neil Cuadra is offline
Join Date: Jul 2006
Location: Los Angeles, California
Posts: 2,514
I'm glad to hear that things have gotten better for your daughter since your post in June.

We don't often hear about pediatric MDS, so you might try connecting with other families that have had pediatric transplants or are dealing with GvHD, even for other diseases.

Have you asked the National Bone Marrow Transplant Link whether there's anyone in their Peer Support Group who has dealt with pediatric MDS?
Reply With Quote
Old Wed Feb 25, 2009, 10:08 AM
cola1988 cola1988 is offline
Join Date: Feb 2007
Location: St. Ignace, MI
Posts: 5

I just found your message and was wondering how your daughter is doing. I only check up on here every couple of months. My daughter was diagnosed with Aplastic Anemia but was showing MDS traits so she was technically borderline and they did the transplant as soon as possible because her brother was a 10/10 match. She had some changes in her cells but I'm not sure whether or not her chromosomes were affected before the transplant. She was transplanted 2 years ago, with no major problems. She has a large lymph node they are watching in her neck and some dry skin, which they are attributing to GVHD but other than that she is a normal healthy 8 year old. I had a hard time finding children with this disease also. If you would like to talk, my email is cola_1988@yahoo.com. I check that much more frequently than I do this. THanks, Nicole
Nicole, mother of Alicia age 7; diagnosed ITP 4/06, AA 7/06, MDS 11/06, BMT 1/13/07, no treatments prior to transplant
Reply With Quote
Old Wed Oct 7, 2009, 01:22 PM
Neil Cuadra Neil Cuadra is offline
Join Date: Jul 2006
Location: Los Angeles, California
Posts: 2,514
Forum member Stephanie posted today about her son's pediatric MDS.
Reply With Quote
Old Sun Dec 6, 2009, 04:06 PM
kirsty kirsty is offline
Join Date: Dec 2009
Location: united kingdom
Posts: 4

hi there just joined the site i have 2 little boys with mds one is 6 and had a sucessful transplant 6 years ago just had a little boy he now has mds would love a chat kirsty
Reply With Quote

Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

vB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump

Similar Threads
Thread Thread Starter Forum Replies Last Post
MDS - VA assigns diagnostic code 7725 Tommy Daniels MDS 4 Sun Jan 22, 2017 04:51 PM
New Tool: MDS Classification Marrowforums Site Announcements 7 Tue Jan 4, 2011 06:12 AM
any one with a child who has mds kirsty Transplants 0 Sun Dec 6, 2009 03:58 PM

All times are GMT -4. The time now is 04:22 PM.

Powered by vBulletin® Version 3.6.7
Copyright ©2000 - 2021, Jelsoft Enterprises Ltd.
Forum sites may contain non-authoritative and unverified information.
Medical decisions should be made in consultation with qualified medical professionals.
Site contents exclusive of member posts Copyright 2006-2020 Marrowforums.org