going to smoothly?

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Offline avasmom

  • mom of a beutiful baby girl with thal major
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going to smoothly?
« on: January 10, 2010, 05:12:33 AM »
my daughter is 16 months old and has recieved 10 transfusions , she has never had a reaction to the blood and so far her monthly transfusion has been the only treatment for her thal.    her ferritan is 800 when will she need to start xjade and i read some of the regimans that some of u guys ar on will she have to start taking all of these things to? its just been so smooth and im worried that we have something coming to us please help
                                                   sarah

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Offline Zaini

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Re: going to smoothly?
« Reply #1 on: January 10, 2010, 05:05:47 PM »
Sarah,

I am really happy for your little sweetie  :hugfriend ,about cheleation,if you want to start with exjade i think it will be better that you wait for her to turn two years old,usually doctors suggest to start chelation at two years of age with any chelator,but our moderator Sharmin started her son on desferal when he was 18 months old,so its up to you,you can either start her on desferal when she turn 18 months and then start exjade when she turns two,or you can directly start her on exjade when she turns two.This all is my opinion and you'll have to ask your hemo what he/she has to say about that.

In the next question i think you are talking about supplements,supplements will help your daughter grow normally and healthily,are you giving her anything at all? She should be taking folic acid at least and any multivitamin for toddlers with out iron .

Hope this helps .

Zaini.
^*^Xaini^*^

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Offline Andy Battaglia

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Re: going to smoothly?
« Reply #2 on: January 10, 2010, 07:58:04 PM »
Sarah,

The managed care that is standard at the Centers of Excellence, like the one in Chicago are doing a wonderful job and one thing you will often hear from the doctors who work at these centers, is that children in well managed programs will have fairly normal and healthy lives, and they say this with great confidence. Your daughter is in good hands and as she grows you can expect even more advancements in the management of thalassemia.

It is normally recommended that chelation start once a patient's ferritin is over 1000, but Exjade is approved only for those at least two years of age, so there may be a period before two years when her ferritin does cross above 1000. Exjade may be prescribed before two years of age if the previous experience of the doctor is that it has shown no ill effects in children under two.

The prospects for those with thalassemia have improved tremendously over the past few decades, but the progress in this past decade has been incredible. Children born now who are in position to take advantage of quality managed care can expect long lifespans with a good quality of life, that includes education, careers, marriage and children. There is no longer any reason for parents to expect the worst and much reason for them to expect a fairly normal life for their compliant children.
Andy

All we are saying is give thals a chance.

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Offline avasmom

  • mom of a beutiful baby girl with thal major
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Re: going to smoothly?
« Reply #3 on: January 13, 2010, 01:43:06 AM »
what does folic acid assisit in?

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Offline Andy Battaglia

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Re: going to smoothly?
« Reply #4 on: January 13, 2010, 02:24:17 AM »
Folic acid is a B vitamin that is essential for building red blood cells. It is well known that it is absolutely essential for non-transfusing intermedias, but many doctors have adopted a belief that transfusing patients don't need it because they are not building good red blood cells. However, a study from Iran, that was released in 2006 completely refuted this thinking and showed that most majors do need folic acid supplements. I also think that many thal minors can benefit from folic acid and it is without doubt that pregnant minors need folic acid. I have previously posted the results of the Iranian study at
http://www.thalassemiapatientsandfriends.com/index.php?topic=2836.msg27623#msg27623

I wish that this study would be taken into account when they design the Comprehensive Care Guidelines for Thalassemia.

    
Andy

All we are saying is give thals a chance.

 

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