Thalassemia Patients and Friends

Discussion Forums => Thalassemia Major => Topic started by: vampirebaby on March 09, 2020, 11:44:10 PM

Title: Peripheral pain
Post by: vampirebaby on March 09, 2020, 11:44:10 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

Title: Re: Peripheral pain
Post by: Andy Battaglia on March 22, 2020, 10:22:14 PM

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

Title: Re: Peripheral pain
Post by: vampirebaby on March 23, 2020, 11:16:18 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

Title: Re: Peripheral pain
Post by: Andy Battaglia on March 23, 2020, 02:24:00 PM

If it is cramping, a magnesium supplement can help.

Title: Re: Peripheral pain
Post by: vampirebaby on April 20, 2020, 12:14:48 PM

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

Title: Re: Peripheral pain
Post by: Andy Battaglia on April 22, 2020, 06:50:55 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.