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hydroxy urea in transfused patients

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zahra:
Hi Andy and Manal,
I will get the electrophoresis done as soon as the weekend is over. I had some success getting him to drink extra water by pretended it was petrol for his tricycle so he kept coming back for refills. I hope it continues to work. I have tothink of how to convince the doctor to let us continue with hydroxy urea. Perhaps if the urea decreased by hydrating I wont need to. Wish me luck.
Zahra

zahra:
Hi Andy
My son has been on hydroxy urea for almost four months now and the doctors are saying it is time to decide if it is working or not. They think it isnt. He has had quite low Hb durng this time despite being transfused more frequently. Even after 2 or 3 weeks his Hb would be around 8. Last time they increased the amount of blood transfused from 250 to 280 ml (weight 13.9 kg). This seems to have helped as his Hb after 3 weeks was 10.2. The plan that they have outlined now is to let his Hb drop to even 7 before transfusing. They will have him come in weekly to keep tabs on where his Hb is during this time. The doctor said that if his Hb does drop below 8 it means hydroxy urea isnt really helping him and should be discontinued. He said hydroxy urea has potential side effects even if they arent visible at the moment and the child should not be exposed to those risks if it is not helping him to increase transfusion intervals. I dont know how to convince him to try for longer as I have read on the forum that it can take upto a year for hydroxy urea to take effect.
I was really hoping hydroxy urea would help and am feeling depressed that it isnt. What do I look forward to now?
On the flip side he gained in both height and weight (0.4 kg in 3 weeks) once they got the Hb up. He hadn't really been gaining weight for a long time now. Is it ok to let him be on such a low Hb that he cant grow properly?
I am so confused about what to do .
I had the Hb electrophoresis done a little late . His fetal Hb in it was 2.1 % (not very hopeful is it?) and Hb 10.7 on 29 November. Would it be useful to do a repeat test with less than 2 months gap?
How can i convince the doctor to allow us to try hydroxy urea for a longer time? Also should I try to convince him of this?????
Looking to you for help again.
Zahra

Andy Battaglia:
I think another electrophoresis should be done before stopping hydroxyurea, just to double check that there is no real movement in the HbF. The percentage is so low that I am not optimistic, but you don't want it lingering in your mind about whether or not there was any sign of improvement. If the HbF remains low, I would have to agree that the hydroxyurea is having little if any effect.

zahra:
thank you Andy Your advice is invaluable as usual. I will try to get them to give me some time at tomorrows appointment while I get the Hb electrophoresis done elsewhere.
Zahra

zahra:
Hi Andy,
I have got the Hb electrophoresis report. On 29/11/2010 Hb was 10.7 HbF was 2.1%. This comes to 0.2247g/100ml of HbF(2.1% of 10.7).
On 31/01/2011 Hb was 12.7 and HbF was 3.7%. This comes to 0.4669 g/100ml of Hb F (3.7% of 12.7).
This is  almost double but its still a very small amount. Do you think it warrants a request for trying hydroxyurea for longer?
This would mean restarting it as it had been discontinued on 26th Jan. which is about 3 weeks now.

The doctor at that appointment told us we should get serious about a bone marrow transplant when he turns 3. My other two children, my husband and I all are only 50% matches but he said sometimes you can get matches from extended family. Is there anyway to decide who to test? He has 14 first cousins  and 7 aunts and uncles. Someone suggested to first try those with the same blood group but I am doubtful b/c they tested me and my bloodgroup is different. The doctor also mentioned a bone marrow registry in the US. Is it likely to find matches in strangers?

Tomorrow is his next appointment. I have so many questions and am so confused.

Zahra

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