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55387 Posts in 5925 Topics by 6238 Members
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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: Peripheral pain  (Read 1522 times)
vampirebaby
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« on: March 09, 2020, 06:44:10 PM »

Hello all,

My 9 year old daughter who has thal major has been having really bad aches in her toes and fingers. The doctors don’t Have an answer for me. She gets the pain every day & it really distresses her. Has anyone here or their children had that problem? What do I do? What tests should we do?

Her pre transfusion HB is usually 10-10.5 & her ferritin is 1300. She’s on daily 800mg of desferal.

Help would be greatly appreciated!!

With Thanks,
Sameet
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Andy Battaglia
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« Reply #1 on: March 22, 2020, 05:22:14 PM »

How does she describe the pain? Is it in the muscle or the bone? Does she also experience numbness in those regions?
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Andy

All we are saying is give thals a chance.
vampirebaby
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« Reply #2 on: March 23, 2020, 06:16:18 AM »

Hi Andy,

she points to the small joints in the toes and fingers. Could it be cramping? The pain temporarily subsides with pain relief.

Thanks
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Andy Battaglia
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« Reply #3 on: March 23, 2020, 09:24:00 AM »

If it is cramping, a magnesium supplement can help.
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Andy

All we are saying is give thals a chance.
vampirebaby
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« Reply #4 on: April 20, 2020, 07:14:48 AM »

Hi Andy,

Is a a 500 IU supplementation of vitamin E okay for a 9 year old weighing 20kg?

I couldn’t find anything lesser than This or specifically for children.

Thanks
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Andy Battaglia
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« Reply #5 on: April 22, 2020, 01:50:55 PM »

For a thal major, that dose would be fine. Adult majors take up to 1000 IU daily, but make sure it is natural E and not synthetic E. Natural E will say D-Alpha tocopherol. Synthetic will say DL-alpha tocopherols. Synthetic E is an industrial by product and is not recommended at all.
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Andy

All we are saying is give thals a chance.
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