Home         Forums  

Go Back   Marrowforums > Bone Marrow Failure Diseases > MDS
Register FAQ Search Today's Posts Mark Forums Read

MDS Myelodysplastic syndromes

Reply
 
Thread Tools Search this Thread
  #1  
Old Mon Feb 27, 2012, 06:09 PM
juliez juliez is offline
Member
 
Join Date: Feb 2012
Location: island park
Posts: 2
Unhappy My baby is diagnose with MDS... HELP...

my 5 old month son was diagnose with MDS... from what the doctors are telling me is that it is very rare in children, but it still happens...

however his case becomes more rare.. usually in mds the chromosomes that are affected are 5,7,8 but in my son it is chromosome number 18...

i live in new york and i need a second opinion.. however there are not that many specialist in pediatrics mds...

can someone recommend me a specialist????
Reply With Quote
  #2  
Old Mon Feb 27, 2012, 06:48 PM
Chirley Chirley is offline
Member
 
Join Date: Oct 2007
Location: Logan City Australia
Posts: 1,100
I'm so sorry you and your baby are going through this. It's bad enough when it's for an adult to be able to deal with this disease.

I live in Australia so I won't be any use to you but I Googles pediatric MDS and got a site for Boston Children's Hospital where they claim to specialize in pediatric MDS.

I don't know if they are as good as they say, you cant trust self promotion but maybe someone else here has some more information for you.

Best of luck.

Regards
__________________
Copper deficiency bone marrow failure (MDS RAEB 1), neuromyelopathy.
FISH reported normal cytogenetics but gene testing showed
Xq 8.21 mutation
Xq19.36 mutation
Xq21.40. mutation
1p36. Mutation
15q11.2 deletion
Reply With Quote
  #3  
Old Mon Feb 27, 2012, 08:01 PM
juliez juliez is offline
Member
 
Join Date: Feb 2012
Location: island park
Posts: 2
thank you...
Reply With Quote
  #4  
Old Mon Feb 27, 2012, 09:34 PM
Hopeful Hopeful is offline
Member
 
Join Date: Jan 2009
Location: California, USA
Posts: 766
Akiko Shimamura is an excellent pediatric hematologist. She was with Boston but now is at Fred Hutchinson/Seattle Children's. You may be able to contact her through the email on this website:

http://labs.fhcrc.org/shimamura/index.html

She has been responsive to emails in the past, as she is very passionate about her field. I'd recommend contacting her for recommendations on doctors at the Children's Hospital Boston as well as for some direction on your son's presentation.
__________________
55 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. small trisomy 6 clone, low-dose cyclosporine dependent
Reply With Quote
  #5  
Old Tue Feb 28, 2012, 12:15 PM
Sally C Sally C is offline
Member
 
Join Date: Dec 2010
Location: Chesterfield, Va.
Posts: 467
Dear Julie,
I can't even imagine your concern and heartbreak.
If you have read any of my previous posts I am a great advocate of The National Institutes of Health in Bethesda, Md. They have a huge, beautiful stone building just for the kids who are patients and their familes right on the NIH campus. They are on the cutting edge of blood diseases. The man who is considered the #1 hematologist in the world - Dr. Neal Young - is over the hematology dept. although I don't know if his specific dept. handles children with MDS - but I consider them the best in the world. My husband is an MDS patient of theirs and has been since 4/09. I truly believe they saved his ife.
Also, any care you receive there is free as they do clinical trials for the FDA. And you will never find more accessible doctors anywhere.
My best wishes and prayers for your baby and family.
God Bless,
Sally

Last edited by Sally C : Tue Feb 28, 2012 at 12:26 PM.
Reply With Quote
  #6  
Old Tue Mar 6, 2012, 08:08 AM
ToryNick ToryNick is offline
Member
 
Join Date: Mar 2012
Posts: 1
Julie,

I know the pain that you are going through because my 2 year old son was also diagnosed with MDS in January. I live in Florida but our son's hematologist has been in contact with the pediatric hematology department at the Boston Children's Hospital. They have a physician in their department that specializes in children with MDS. While the only cure is a bone marrow transplant there are ways to treat the symptoms and help your baby feel a lot better.

The most important thing to find out is if your baby's MDS is low, intermediate or high-risk MDS as it will give you an idea of your son's prognosis and how best to treat the disease.

If you have any other questions feel free to send me a message or an email. My prayers are with you and I hope for the best for you and your son.
Reply With Quote
Reply


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 03:51 PM
MDS in 5 month old baby sadi123 MDS 4 Tue Mar 26, 2013 04:25 AM
New Tool: MDS Classification Marrowforums Site Announcements 7 Tue Jan 4, 2011 05:12 AM


All times are GMT -4. The time now is 10:12 AM.


Powered by vBulletin® Version 3.6.7
Copyright ©2000 - 2024, 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