My Son Rudra

Friends ,

Just thought to update this thread with important updates from the hematologist we have been meeting. Hope these help someone.
The below updates are apart from the common things I have read on this form or internet about thalassemia

1) Dr Suniel Pariekh : (Spoke to him for around an 1 hour)
- Suggested us to start his Ferritin/SGPT/SGOT level test after 2 transfusions itself. We found it was actually good  as his ferritin did come pretty high at about 1000 after 2 transfusions. Suggested us to do this test every three months. These test are to be conducted before blood transfusion process.
- On the amount of blood to be transfused he said he even at times goes as high as 20ml/kg to get some more time between transfusions. All his patients have responded well to the transfusions.
- Referred us to 200+ page handbook for thalassemia patients on http://www.thalassaemia.org.cy/
- Did not talk much about BMT process. Suggested we still have time and should only concentrate on our son as of today as he is too small.

2) Dr Sameer Melinkeri  (Dinanath Mangeshkar hospital , Pune) : (Spoke to him for around 45 min)
Got his reference from someone know who got his thalassemia major  son's BMT done from this doc in this hospital. Concentrated our talks more on BMT process.
- Shared his recommendation on BMT : If there is a sibling match 1st priority , BMT(Stem cell) in Chang Gung Memorial Hosp, Taiwan 2nd priority , BMT with Unmatched donor 3rd priority , BMT with Haploidentical parents 4th priority.
- Will look into starting hydroxy for my son in future.
- On our recommendation gave a go ahead to get my son's , wife's and my high resolution HLA done. The hospital has tie up with Histogentics. Results are still awaited. Cost : 16500 Rs per person.
- Cost of BMT in Dinanath Mangeshkar hospital is around 8 lacs for sibling match.


3) Dr Vijay Raman : (Spoke to him for around 15 min)
- Gave us some info on Novel therapy . Recommended we start my 4 mth old son on wheat grass powder. We have already done that in low amounts and would increase gradually to his recommended dosage.
- Shared a detailed list of test we should perform on monthly , quarterly and yearly basis. Will share the list with the group in a separate thread shortly.

Andy ,

I have read in many of your post you suggest to use L-methylfolate . My son Rudra now 8 months old takes like 2.5 mg folic acid tablet(FOLVITE brand , pfizer company) daily. I have a confusion if L-methylfolate (in some form) is what you are suggesting instead of the folic acid tablet.

If he does well with it, folic acid is fine to take. Many people cannot metabolize that form and need to take L-methylfolate.

Andy Sir.   
               How I can understand that I can metabolize or  can not metalabolize folic acid tablets  ?
I also take 5 mg folic acid tablet daily .

Hallo Mukta
                    Can you tell me the availability of L - methyl folate in India in which brand of manufacturer  ?

So many brands are available of L-Methyfolate in India

Abahaya I had the same question for Andy.

How do you know if the tablet is working ? Andy should I just attempt to give him L-Methyl folate tablet and stop the folic acid tablet as L-Methyl folate is more broken down version of folic acid if I understand correctly ?

What would be the equivalent dosage of 2.5mg of folic acid tablet when compared to tablet of L-Methyl folate .

Abahaya the brands which I have found are Vitalin (0.8 mg) , THF (1000 mcg) , Tetrafol (7.5 mg , Sun pharma)
 

I don't know is L-Methyfolate available in Bangladesh or not?

Dear Andy,

Whats the benefit between Folic acid and L-Methyfolate? Both are help to create new RBC?

Either one is needed to make RBC's. L-methylfolate has been shown to work better and some patients react to folic acid, so they can only take the folate from. You would know if a child reacted to folic acid., because folic acid might cause abdominal cramps, diarrhea, rash, sleep disorders, irritability, confusion, nausea, stomach upset, behavior changes, skin reactions, seizures, gas, excitability, and other side effects.

What will be the dose of L - methyl folate equivalent to 5 mg folic acid tablet  ?

L-Methyfolate not available in Bangladesh..

The dose of folate is the same as for folic acid. For a child, 2 mg is plenty.

So many brands are available of L-Methyfolate in India

Dear Dharmesh Ji
                              Please tell me a good brand of 5 mg L - methyl folate tablets .

FOR KIDS

TETRAFOL PLUS TABLET
Mfg: SUN
(Other Products from SUN) Comp: L-methylfolate 2.8 MG+Mecobalamin 2 MG+Pyridoxal 5-phosphate 25 MG Form: TABLETPack Size: 10 (Units)
MRP (per pack) :
Rs. 140.00

FOR ADULT
L-FOLINK 800mcg

Dear HANUMANT,

Can I get help from you about the medicine? I will pay you by western Union.If possible pls inform.
Bcoz its not available in Bangladesh. 

Hi Lokhi maa,

sending parcel from india to bangladesh is not possible for. I can send it within India.
Regarding use of L-methylfolate, first u need to establish that plain folic acid is not working for ur child. It doesnt make sense to jump on l-methylfolate blindly.
Morover , to transfusing thals , doctors no more suggest even folic acid or l-methylfolate