Hi from singapore... any others?

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Offline Zaini

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Re: Hi from singapore... any others?
« Reply #15 on: October 15, 2008, 12:46:39 PM »
Sahil,

Once a doctor also advised us,but frankly i am scared to try anything new,plus we haven't seen any big difference in users of hydro oxy urea,and i want to maintain my daughter's hb on 10,while with hydrea people got as much high hb as 8,as far as i remember.

Zaini.
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Offline sahil

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Re: Hi from singapore... any others?
« Reply #16 on: October 15, 2008, 12:51:12 PM »
Zaini,

I'll tell you something.

Where I take my blood transfusions, there are 5 thal Intermedia patients, and all of them are off blood transfusions since 2 years. All are 20+ years old and their hemoglobin is maintained between 10-11.

Two of them are females out of which one got married this year or last year not sure.

You can surely give it a try.

PS- Before getting on hydroxyurea, all of them transfused every 15-20 days. Two of them even got their splenectomy done.


\peace/
My formula for living is quite simple. I get up in the morning and I go to bed at night. In between, I occupy myself as best I can.

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Offline Ayesha

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Re: Hi from singapore... any others?
« Reply #17 on: October 15, 2008, 02:58:04 PM »
what is hydroxyurea???
-Ayesha

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Offline Zaini

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Re: Hi from singapore... any others?
« Reply #18 on: October 15, 2008, 03:51:28 PM »
Hydro Oxy Urea is hb F inducer,it increases hb sometimes and keeps it stable so one can be transfusion free,but mostly it is used by thal intermedias,i don't know if any thal major has tried it.

Zaini.
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Offline Sharmin

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Re: Hi from singapore... any others?
« Reply #19 on: October 15, 2008, 04:18:56 PM »
Hi Zaini,

I thought of Zainab immediately when I read this post, because she did not present as a major right away and did not need regular tx until she was 3 (am I right?).  But she is looking and developing so well right now that I think it is best for her to continue to tx until she is full grown.  At that time, she will probably be one of the ones who doesn't need to transfuse anymore - I'll pray for that  :pray

What do you guys think?

Sharmin
Sharmin

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Offline Ayesha

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Re: Hi from singapore... any others?
« Reply #20 on: October 15, 2008, 05:04:45 PM »
my brother didn't needed blood transfusion untill he was 2 years old, then something happened and parents were advice to transfused him

a doctor few years ago said that we brother and sister had intermedia and someone misdiagnosed us...

how can one know what he/she was? major or intermedia after having transfusion for 20 years?

we had an elder brother too, elder than me and Salman and he was Thalassemia Major, so the doctor thought each of us will be Thal. Major? if we have been misdiagnosed then whom should we blame?
-Ayesha

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Offline Andy Battaglia

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Re: Hi from singapore... any others?
« Reply #21 on: October 15, 2008, 05:09:58 PM »
Don't blame anyone. Having intermedia type hemoglobin levels does not mean a child can thrive without transfusions. It has to be judged by the condition of each child. If normal development is significantly stunted, then transfusions are recommended. Once fully grown, it may be possible to re-examine this and see if a patient can get by with none or minimal transfusions.
Andy

All we are saying is give thals a chance.

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Offline Manal

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Re: Hi from singapore... any others?
« Reply #22 on: October 15, 2008, 11:37:52 PM »
Andy

Can the bone marrow start producing the small quantity of good blood (in case of intermedias ) after 20 years of transfusion?? I thought that if the bone marrow shuts down the body becomes dependent on transfusion for ever. Please advice

manal

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Offline Andy Battaglia

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Re: Hi from singapore... any others?
« Reply #23 on: October 16, 2008, 12:03:26 AM »
The bone marrow activity actually never even drops to normal unless the hemoglobin level is kept at around 11 or higher and never allowed to fall below. At the normal level of 9-10, bone marrow is 2-3 times more active than normal. Lowering the Hb more will increase the bone marrow activity. It may take a few months but the bone marrow will resume its previous level of activity, but it will resume.

One reason it has been hard to find majors to test hydroxyurea on, is because transfusions have to be ceased for several months in order to stimulate enough bone marrow activity so that hydroxyurea can work. Majors generally have little interest in intentionally dropping their Hb low enough to take part in the trials. This is one reason the main study using hydroxyurea in majors was conducted in Algeria. It is much easier to find under-transfused majors in countries without good blood facilities. The conclusion of the trial was that hydroxyurea might be a good, cheap treatment option for majors who have trouble finding adequate blood supplies, especially in poorer countries.

There is also an irony with hydroxyurea. It is used in higher doses as a chemotherapy because it has an ability to suppress bone marrow activity. Obviously, this is counter to what patients need if at the same time it is supposed to help produce HbF, but the balance is in favor of HbF, so it is used as a therapy for thals. But its affect is also somewhat limited and this is why there is more promise with coming drugs that are based on fatty acids.
Andy

All we are saying is give thals a chance.

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Offline Zaini

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Re: Hi from singapore... any others?
« Reply #24 on: October 16, 2008, 02:20:31 AM »
Zaini,

I'll tell you something.

Where I take my blood transfusions, there are 5 thal Intermedia patients, and all of them are off blood transfusions since 2 years. All are 20+ years old and their hemoglobin is maintained between 10-11.

Two of them are females out of which one got married this year or last year not sure.

You can surely give it a try.

PS- Before getting on hydroxyurea, all of them transfused every 15-20 days. Two of them even got their splenectomy done.


\peace/

Sahil,
They must be the lucky ones,maintaining hb of 10-11 with hydrea,really we haven't seen it here,i met a girl here in my city who was on hydrea,and wasn't transfusing,but unfortunately her facial bones were so deformed that just seeing her face brought tears to my eyes,and her mom told me that she was 13 yeras old,well she didn't look much old then my own daughter,so these are the things i am worried about,i don't wanna disturb my daughter's growth cycle and i want her to have normal facial features,so it might not add to her problems,if you have seen her pics in the gallery ,you'll see she doesn't much look like a thal major,may be because she was diagnosed at the right time and her hemo started transfusions immediately.I am happy with the way things are going Alhumdulillah,only i'd love if her transfusion intervals can be increased a little bit somehow,but i don't want her bone marrow to over work and expand or weaken the bones.

Sharmin,

Yes you are absolutely right she was diagnosed at age of three and didn't need any transfusions till then,and she was growing very normally,there was no stunted growth,she just looked pale and we did her hb which came back 6,then doctor tried a little bit iron,it did increase her hb from 6 to 7.7,then he asked us to get electrophoresis,i've repeated the story so many times,but it still horrifies me,what we went through at that time,my husband didn't even know what thal major was,and what i remember was that one of my cousins died at age of 20 due to thal major in 1986.

May be when se grows up,she'll decide if she want to drop transfusions and try any hb inducer,right now i just don't wannt put her in any kind of stress,as i've seen her miserable with low hb.Or may be we'll see a cure even before she grows up,INSHALLAH.

Zaini.
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