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hydroxy urea in transfused patients

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Manal:
Thank you Andy :wink

manal

zahra:
Hi Manal,
This is a link to the research I found on use of L-carnitine and Magnesium with hydroxy urea. I will show it to my doctor at the next appointment.
http://www.ncbi.nlm.nih.gov/pubmed/19799627
I have got the hydroxy urea now and will start it tomorrow,inshallah L-carnitine I still need to get . Is there any brand you would recommend?
Thanks once again for your great guidance.
Zahra

Manal:
Hello Zahra

Personally i use a local brand for L-carnitine (Syrup), but i know that the GNC brand is also very good. But the GNC are capsules, so may be you can disolve them in a juice or water and give them to your son though i prefer you use syrup cause he is still young.

You can check in your pharmacy, may be you find something good. You may also check for the one i am using because i know that they export. The comany that produces the L-carnitine is called MEPACO.

I really wish you Zahra all the best and hope that it will really work for your son, but don't forget that it needs patience,keep updating

manal

maha:
Hi Zahra
GNC also has liquid L-carnitine. Its available in GNC in two forms. One with 500mg pantothenic acid for every 1000mg of L-carnitine (white coloured bottle) and the other 15mg pantothenic acid for every 1000mg of L-carnitine (black coloured bottle). I use the black coloured bottle. You will be able to get it in Abu dhabi as my sister got it for me this time from the same place. (150 DHS).

maha

Syaida Lee:
I'm really keen on hydroxy urea, but the last I checked with Adel's hemotologist in Spore (NUH) she said it doesn't work on Beta-Thal Major. She said they found that it works well with Thal Intermediaries only. I'm going to speak to her again next month on it. Can hydroxy urea taken with XJade?
Adel started XJade 3 weeks ago, at a low dose of 125mg, he is 10.5kg (3 years old), he's tolerating ok. His liver/spleen is noticeably smaller. We are very pleased with his recent progress after given him Vit E, D, Calcium & Magnesium (started about 2 months ago). He's much stronger and his bone density has improved since.  These days he is even walking confidently around without oxygen. Something we haven't done for the last 2 years!
As we have a chelation plan now, we are keeping closer watch on his HB/Liver/kidneys/Ferritin. Today HB is 9 and we transfused him (currently half way through transfusion). Last transfusion was 3 weeks. Before XJade, we were a little reluctant to transfuse him at 3 weeks. Normally wait till 3+ or 4 weeks.
After 1 year old, his spleen & liver were getting progressively bigger, we had to go for embolisation of splenic artery to reduce his spleen when he was 2 years old. He was so sick then he need transfusion every week, even 3 days then. The trend of spleen becoming big and frequent transfusion came back early this year, and we went for a 2nd splenic embolisation.
Adel's case is really tricky since he has congential heart disease + chronic lungs. I guess I had overlooked his nutritional aspects, chelation (I was under the impression that chelation starts when ferritin is over 2000 or something). We were just not informed. The doctors do not say very much and I can't rely on them to be pro-active. I'm really glad I had found a forum where I can express my thoughts and get 1st hand information. Thanks Thapal!

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