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Author Topic: hydroxyurea  (Read 21485 times)
surendra
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« Reply #15 on: June 15, 2012, 10:03:36 AM »

At this time she is fine, active and eating properly so we have postponed her transfusion next week. But I am little afraid that if Hb level will drop to low level. Anyways hope for the best. On what low Hb level we should worry?Huh??
Thanks for reply
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Andy Battaglia
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« Reply #16 on: June 15, 2012, 03:28:28 PM »

Testing below 7 on two consecutive tests is the threshold for transfusion.
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Andy

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surendra
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« Reply #17 on: June 22, 2012, 12:42:30 AM »

sorry Andy I have seen your post right now. So should we wait that her Hb will come to level 7. Actually We have checked her Hb yesterday and it was 8.1. we have decided to go for transfusion today.
I want to tell u that she is as active as a week before but only problem is that her diet became low not very low. what should we do???
seeking for advice.
 
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Andy Battaglia
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« Reply #18 on: June 22, 2012, 10:38:41 AM »

Transfusion should improve the appetite. Observation of the child is the most important factor when deciding if transfusions should begin. If growth is slow, energy is low or appetite drops with Hb (which will result in slower growth), then transfusion is recommended. I would suggest getting her transfused and seeing how long her Hb maintains post-transfusion.
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Andy

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surendra
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« Reply #19 on: June 22, 2012, 11:19:53 PM »

Thanks Andy.
Actually due to some reasons(donor was not available) her transfusion has been postponed. She is playing good, fine and energetic but only problem is her apetite which became little low. one thing I want to tell that small tiny swelling on her body still appearing and also disappears without doing anything.  Should we concern about it Huh???
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POAR
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« Reply #20 on: July 28, 2012, 12:59:05 PM »

Andy,
My son is having E-Beta Thal, got detected in 6months of age. He is now 2.5 years, under regular transfusion of around every 4 weeks. We have checked with our Dr in Bangalore about starting HU on him. Dr is not very eager to start it as his experience of HU on E-Beta thal is not great.  I want to check your thought about this drug on E-Beta.
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surendra
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« Reply #21 on: September 07, 2012, 01:22:31 AM »

Hi Andy
my daughter is taking hydroxyurea (500mg alternate day) since last 3 months. Last week on 30th august her Hb was 9.2 and today on 7th september it was 7.1.  How can it be possible???   And this is not the one time, The same thing happened in the last two months also.
In the last month her Hb was 10.1 at the time and after two weeks it was 6.9.  We couldn't understand. In these days she has no fever and no any kind of infection. She is active  and eating properly. The main problem is fast decrease of Hb level without any reason.
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Andy Battaglia
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« Reply #22 on: September 08, 2012, 03:27:11 PM »

Surendra,

Has she had any transfusions during this period?
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Andy

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surendra
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« Reply #23 on: September 08, 2012, 11:53:50 PM »

Yes Andy
when her Hb level was below 7 she had transfusions. She is getting transfusion every month after using hydroxyurea.
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surendra
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« Reply #24 on: September 10, 2012, 10:07:39 PM »

Hb decreases fast in last few days(2 points in a week). Is this normal when using hydroxyurea?Huh?
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Andy Battaglia
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« Reply #25 on: September 12, 2012, 08:54:28 AM »

I would think the drop in Hb is related to antibody reactions and has nothing to do with hydroxyurea.
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Andy

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surendra
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« Reply #26 on: September 12, 2012, 10:21:22 PM »

Thanks Andy
why this antibody reaction happened every month(specially in last week) ?? and we are using leukocyte filter during transfusion every month. Could u please tell me the reason of this reaction???
What I observed that first three weeks after transfusion her hb drops only 1-2 points and after this it drops very quickly (almost 2 points in a week). 
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Andy Battaglia
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« Reply #27 on: September 13, 2012, 09:24:28 AM »

If it only happens at the end of the transfusion cycle, it is simply the transfused blood breaking down. This is normal. The only thing that may make it last a bit longer is using fresh blood, which in most cases means arranging a group of regular donors, so that the blood is always newly drawn from the donor. Electrophoresis should be done to see if the HbF level is increasing, as it is the method to determine if the hydroxyurea is having any impact.
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Andy

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surendra
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« Reply #28 on: September 13, 2012, 11:21:40 AM »

Yes Andy We have arranged some donors who donate blood a day before transfusion which means it is always fresh blood to give her. It is continue since a year.  So that antibody reactions should minimize.
Definitely we will do Hb electrophoresis test in next month before transfusion.
I want to share one thing that her Hb goes down but her activities become normal. We can't recognize  that her Hb is so low.
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catchR
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« Reply #29 on: May 30, 2013, 12:54:12 PM »

Hi Surendra,
Hope you are still continuing with HU for your little one. Just wanted to know your experience with HU and if there is any positive indications (raise in Hb-F in total Hb) and increase in transfusion intervals.

Wanted to check this as my little one is just over 2.5 yrs and was looking into the possibility of starting HU for her. Also, wanted to know other's experience as well with HU.

Kindly advice, thanks!!
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