do all DS patients end up anemic ?

Roxana1961
on 1/21/12 11:24 am - NY
 I am doing all my research on all the different options for me and was wondering if everyone that has the DS end up needing the infusions for life afterwards ? 

(deactivated member)
on 1/21/12 11:27 am, edited 1/20/12 11:30 pm
Nope.

I think the people that don't have the problem don't post about not having it so all you see are the one who do.

I am 6+ years out and holding steady on oral iron.

If I did need infusions, I would consider it a small trade-off for the DS though. :)
Amy Farrah Fowler
on 1/21/12 11:35 am
 No, but since we don't need to talk about infusions, we just don't mention it, uless something gets out of whack.
(deactivated member)
on 1/21/12 12:24 pm
gak
on 1/21/12 1:19 pm
Revision on 06/21/13
Anemia can be an issue for some. I have never had to have an infusion, but I have had to tweak the amount of iron I am taking. Will have labs in a couple weeks, then we can see where I am with the latest adjustment.

Others have no issues..  you mainly will read about the problems and not the better easy peasy stuff.

Ginger<><  
 Revision #2 Dr John Rabkin June 21, 2013; First Revision DS - Dr Maguire
  5-18-09; First DS 7-15-2003 Dr Clark Warden = Third time is the charm   


 



 

walter A.
on 1/21/12 1:45 pm - lafayette, NJ
NO PROBLEM WITH IRON HERE,  TAKE A EXTRA TAB A DAY IN ADITTION TO THE MULTIVITAMIN THAT HAS IT ALSO. AND WHATS INCLUDED IN THE PROTIEN MIX .
J G.
on 1/21/12 2:28 pm
Roxana, I find infusions to be no big thing at all.  Before I went the first time, I admit it sounded a little scary.  Now it's a piece of cake.  I love 'em.  I am about 3 1/2 yrs out and have had 4 so far.  Last time I went in everything was dandy and I didn't need one.  Plus I love my hemo doc.  He watches my other labs, too, not just the iron.  He's got another patient whom he calls "my twin."  She had RNY.

HTH
Jenny
k9ophile
on 1/21/12 4:25 pm
No.

"Our ultimate freedom is the right and power to decide how anybody or anything outside ourselves will affect us."  Stephen Covey

Don't litter!  Spay or neuter your pet

MajorMom
on 1/21/12 6:25 pm - VA
My iron markers are actually a little high and I've been able to reduce how much I take. It took 4 years of high oral doses but I'm a little too good now. Happy camper here.

--gina

5'1" -- HW 195/SW 187/GW 115 July 08/CW 121 Dec 2012
                                 ******GOAL*******

Starting BMI between 35 and 40ish? 
Join us on the
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DS on Aug 9, 2007 with Dr. Hazem Elariny

fullhousemom
on 1/21/12 10:33 pm, edited 1/21/12 10:35 pm
My dad had the DS 5 years ago and has never needed a transfusion. Nor does he follow any particular vitamin plan. He is not computer literate and has never followed any of these boards. He is diligent about his annual bloodwork and makes adjustments based on his labs.

A friend of his, a gentleman about 65, had the DS and just found out his iron was low. My dad alao found out that he hadnt been getting his labs done. So, there is some cause and effect going on here!

I have read on this site of people needing transfusions both pre AND post DS.

I have read of others who need transfusions only post DS, and the frequency varies.

Bottom line, any conclusion drawn that DS patients all need transfusions is just wrong! Its amazing how all our needs are different. Its possible to predict if you will need them or not. But, from the posts above and other posts on the topic, I dont know of anyone who has regretted their DS decision.

I hope everyone's responses have put your mind at ease!
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