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55318 Posts in 5912 Topics by 6215 Members
Latest Member: conradj

A message for all  parents who are thals. Keeping your iron load under control is an absolute obligation to your children.
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Author Topic: situation changes for me...  (Read 32924 times)
kabir_love
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« Reply #45 on: March 24, 2008, 12:29:00 AM »

now its 1 week after 1st blood transfusion. well i had never seen my kid so enerjectic and happy playing around the house im happy but the fever of bt always hinders as in time the iron level will be next problem.
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« Reply #46 on: March 24, 2008, 03:22:16 AM »

Hi Micky,

See, this is the reason we were insisting on transfusion.

With better Hb levels his quality of life will improve and you will see improved growth as well.

Just comply to the proper treatment and you will have a healthy, happy strong child.

Best wishes for the future.
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Zaini
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« Reply #47 on: March 24, 2008, 06:09:06 AM »

I am very happy for your son Micky,blood transfusions will help him grow normally and strongly,and he'll lead a fairly normal life.I ron over load is definitely a problem but fortunately we are in age og advanced chelators,main point is being compliant.

ZAIN I.
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poo gill
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« Reply #48 on: March 25, 2008, 07:46:31 AM »

Hello Kabir
Please talk to your Doctor about hydro oxy urea It is a drug many of us are using with positive results. Also do give him fresh wheat grass juice. AS he is 3  dont worry . Just monitor his hb. Please keep it ABOVE 7.

For my son we hv given first tran when he was 3. After that wheever his hb fell to 6 we had to give him trans. He has 4 transfusion so far,  he is 8 years  now. We are continuing  on hydro oxy urea and giving recormon.

Thanks

Puja
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"We are like angels with just one wing. We can only fly by embracing each other." 
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« Reply #49 on: March 25, 2008, 09:19:05 AM »

Hi Mickey,
This is a bit of a sensitive topic for me. Normally my HB levels are maintained above 10 prior to my transfsuions which was okay as my energy levels remained stable. I have seen though as soon as it drops under that now, i feel tired and cranky....I even drop off to sleep in places I would not normally. I know that you are trying to do the best for your son and he may not understand much now but he would have  a much happier time once his levels are higher. Of course he would cry for the transfusions part...I did too...actually he is much luckier than me as i started at 5 months of age and am told that I really gave the adults a hrad time-pulling at the line etc...but I am MUCH happier for it now, being able to live with fewer complications....please consider everything everyone is telling you....WE LIVE IT!
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Zaini
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« Reply #50 on: March 25, 2008, 01:26:09 PM »

Well said B Thal Girl 

ZAINI.
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kabir_love
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« Reply #51 on: March 26, 2008, 03:00:06 AM »

thanx all
my son is being test for hydroxuera.. result will come to us in 1 week. i hope if its goods for my son then we will start that immedeatly as i have very less knowledge for hydroxurea till now, im waiting for the test then i ll do research on thi

also i have start my son phytic acid 500 mg  daily.. in the morining after this 1st blood trafusion only. i hope its ok for me to start at this time or do i have to wait.Huh?

regs
micky
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« Reply #52 on: March 26, 2008, 12:58:30 PM »

Hi Micky,
I guess that I must say that I dont envy you at all for I am reminded from time to time that the parents have more heartache than the kids especially when the children are young. I know that I might be sounding heartless as well but you will get used to it....we all had to. I think that you will also be amazed to see how easy your child adjust to it once he senses that you are also okay.
My parents spoilt me badly when i was small and always took a new toy along for each transfusion...was expensive but it made me forget what I was actually going through.

I know that there are other inducers which would also support us and help us to have to be transfused less and less but i am sure that you want to see your son exceling in school and sports etc. Look at how happy Zaini was when Zainab did well!!!You have to do what is right first. Even if the inducers work, the cbc's will show his levels and determine exactly how much blood he needs.

Please understand, I know how it feels to have a lower than normal hb and its not something I enjoy at ALL! Give him a fair chance, remember we understand ...we all live it. I know for sure that my mother and father kept praying for a miracle and also wanted to try everything on the market just to get me better. They also went to Italy three times just to beg Dr Lucarelli to consider transplanting with an unrelated donor...I am happy to say that they are much better now...

So please he needs to be healthy now or his bone structure will also change  .....
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