Discussion Forums > Diet, Nutrition and Supplements
Beta Minor - Endurance - Supplements
zahra:
Hi Andy,
I hope you and your family are doing well.
This question intrigues me. My older son has a Hb of 12.9 & donated bone marrow to my youngest. Doctors say the recipients Hb should be close to the donors but the youngest one has a Hb of 8.9 consistently. Any ideas why this is so?
Also have you seen other cases with this much of a difference between donor and recipient Hb?
Andy Battaglia:
Hi Melontan,
It does seem that many of the problems associated with thal can worsen as thals get older. Many intermedia patients will be normal when young, but will eventually end up needing transfusions, as their Hb level often drops as they get older. I would suggest continuing the supplements and also making sure her diet is fully nutritious. Avoiding junk food and empty calories is very important and should be a lifelong goal. It is also important to avoid the substances that can cause hemolysis, the destruction of RBCs in thals, especially in those who carry alpha. Patients may be very sensitive to things like artificial scents. A list of things to avoid can be seen at http://www.thalassemiapatientsandfriends.com/index.php/topic,3410.msg34830.html#msg34830 Any of these substances and others can cause the Hb to drop in alpha thals.
Andy Battaglia:
Zahra,
I don't think I've seen such a wide gap between donor and recipient before. Is the donor son a minor?
Melissa A Tan:
Hi Andy,
My daughter is 16 now and stands at 5ft 7 inches, she is on 2-3mg of methylcobalamin, 8.4mg methylfolate, I am giving her one Life Extension B-Complex capsule (Vitamin B1 50mg, Vitamin B2 37.5mg, Niacin 50mg, Vitamin B6 60mg, Biotin 1000-2000mcg, D-Calcium Pantothenate 250mg, Calcium as D-calcium panthothenate and dicalcium phosphate 45mg, inositol 50mg, para-aminobenzoic acid), 5000 iu Vitamin D, 500mg vitamin C, 2.5mg of Wild Alaskan fish oil, Artic cod liver oil 30mcg RAE. The oil based supplements are taken seperately.
She is currently on two medications for her depressive moods, but we are removing aripiprazole and keeping sertraline for a bit longer. I am intend on increasIng the dosage of methylfolate.
I learnt from the psychiatrist that they do have quite a few thals with mood disorders, even the paediatricians told me that it is common. However, antidepressants don’t seem to work on thalassemics but they still have to start with SSRIs for treatment. Having conversed with other thals on the FB group, they also report the lack of effect of SSRIs.
This morning, my daughter said that she is starting to feel the despair again, I think that artificial scented candle that she was using instead if essential oils might be a contributing factor.
At The National Thalassemia Registry, the nurse told us that they had one intermedia patient that only requires transfusions at 21 years old.
Andy Battaglia:
You might try a once weekly dose of 50,000 IU vitamin D, instead of the daily doses. It does work better with a high dose once weekly and vitamin D can help with depression. I would also recommend 500 mg magnesium daily, as it also helps with depression, and is also one of the more important nutrients for thals.
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