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55464 Posts in 5940 Topics by 6278 Members
Latest Member: PuntaLanza

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: Will every Thalassemic Kid eventually look grey and dark after few years  (Read 867 times)
kaleem
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« on: December 07, 2020, 01:28:30 PM »

My 4 years old kid who received an unsuccessful BMT is dependent on regular blood tranfusion, most of the time we tried to keep HB above 9 or 9.5, however during earlier years it was kept above 8. He has not been a very good complaint with Asunra. However on and off he has been on asunra since he was 2 years old. Since last few months I see his skin around fingers, arms and legs are getting darker and greyer. I am just curious to know whether those child who remained extremely comliance with Iron chelation also got darker and greyer with passage of time.. is there any other medicine like vitamins etc which are given to kids apart from aunra to remain more healthier and shiner..  thanks..
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maha
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« Reply #1 on: December 09, 2020, 02:49:39 PM »

Compliance is necessary- chelation shouldn’t be something off and on - one has to be compliant. My son had to stop chelation when his ferritin reached 200. But I have always given him IP6 in addition to Asunra. Last 4 + years he has been off transfusion but I continue to give him IP6. You could search and read the relevant posts on IP6 shared in this forum. Andy has always encouraged taking IP6. I suppose I began giving him IP6 when he was 5 or 6 years old. And his skin doesn’t have the olive green tinge and neither is it dark around the finger nails.
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kaleem
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« Reply #2 on: December 09, 2020, 04:28:26 PM »

Thank you so much for your kind response. I will try to find IP6 in Karachi Pakistan. Your son during transfusion years was only on Asunra or other chelation as well? thanks
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maha
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« Reply #3 on: December 10, 2020, 05:43:44 AM »

Only on Asunra, from the age of 2yrs. Initially he was put on 20mg/kg for a couple of years.. But it wasn’t helping, the numbers kept rising . So the dose was increased to 32/mg- and gave it in split doses. This really helped in getting the numbers down. And we never missed a dose. I used to mix it with a little orange juice about 30ml,  give him a glass of water in his hand. Initially used a medicine dispenser spoon- he would gulp it down and quickly drink water over it. Once he got used to it, he would drink it straight from the glass without any fuss.
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kaleem
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« Reply #4 on: December 12, 2020, 02:42:46 PM »

We dilute Asunra in a bottle of water and then add milk powder and he drinks it during sleep in the morning. So it's not like taking all the glass of milk once but sometimes may be over a period of 30 to 40 minutes until kid finish consuming all the bottle. May be this is the reason that Asunra was not so effective so far.
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Andy Battaglia
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« Reply #5 on: December 19, 2020, 06:59:13 PM »

Dark skin in the knuckles and around the nails shows iron is too high.
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Andy

All we are saying is give thals a chance.
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