Managing Thals in INDIA

Hi All,

I am a Father of a 2 year 8 months old little angel diagnosed with Thalassemia Major(Beta). When I was browsing, I came across this Forum. I was going through the some of discussions in the forum and found to be very helpful and felt really great full for having so much of valuble information at one Place. I should be really thankful to you  all for the great work you people are doing by sharing the info and advising people like me .

I am from INDIA, Who dreams day and night to give best of care and love to my little daughter .

I Transfuse her every 4 weeks and maintains an Hb of 9 to 10.

I have Couple of Questions


I am giving Asunra 400Mg( as Per the local doctor advise- Hyderabad-INDIA) for my daughter as she weights around 13Kg. I have been regularly monitoring her ferritin levels which is increasing month by month. Her latest Ferritin level is  now 2500 and 2200,3 months back. I give her the Asunra(400mg) dissolved in a glass of water  in empty stomach once daily. Is this too high(Ferritin Level) for her age? Am I missing anything here for Iron Chelation ?

As supplements I give her Calcium B12(OSTO Calcium) and Folic Acid. Am I missing any supplements which needs to be added to her daily routine.

As stated by Sharmin in one of her post to Add " antioxidants on board at all times protects the body.  IP6 is very effective at binding free iron.  L-carnitine, vitamin B, (small doses of vitamin C), vitamin E and many others listed in the vitamins and supplements section of this board are very helpful".

What are the equivalent medicines for IP6, L-carnitine, vitamin B, (small doses of vitamin C), vitamin E in INIDA.

If Possible,can you breif me or share Information or Advise me on Do's and Dont's for managing the Thal Patient. I dont have Specialised doctor who can share such information.


Thank you very much for the HELP!!!


Thanks ,
A Loving Father
Srini

Hi Srini,

The rule is to give 40mg of tablet per kg of body weight. You may want to increase the dose to 520 mg per day. Please also try to split the dose to twice a day - 260 mg in the morning and 260 mg in the evening. Ferritin of 2600 is not too high and will come down with regular chelation. How long have you been giving Asunra to your daughter coz it may take a while before the chelator actually starts removing the free iron from the blood. Be patient, you will see ferritin coming with regular chelation especially with split dose.

Regards,
HImanshu

Hello Srini,
Welcome to Thalpal. You are right about this website. 9 years ago, we were lost, confused and scared with the Thal major diagnosis for our daughter and this site and Andy's words helped us a lot. so I am not surprised that you found similar help.

Regarding different vitamins, I think a good multi-vitamin that has all the trace minerals and regular vitamin D is good for your little one. I do not think you have to give individual vitamins tabs or syrup. In my opinion, she is too young to take lot of pills. Just make sure to help her develop healthy eating habits.

Regarding Asurna, I think the dosage is pretty good for a child (~ 30mg/kg). so, give it some time to work. When we started chelation for our daughter, it took almost an year to see real drop in ferritin. Do not use any metal spoon or glass when you mix the tab with juice or water. It is not needed to be taken in empty stomach. Just make sure she takes it daily . The only time it should be stopped is when she has fever. and most importantly make sure she drinks lots of fluid and get regular exercise. other than that, bring her up as a regular child . do not overprotect her or tell her she cannot do something. She can and will do everything she wants to. Now thal is a totally manageable disease. Best of luck!

Hello Srini,
Welcome to Thalpal. You are right about this website. 9 years ago, we were lost, confused and scared with the Thal major diagnosis for our daughter and this site and Andy's words helped us a lot. so I am not surprised that you found similar help.

Regarding different vitamins, I think a good multi-vitamin that has all the trace minerals and regular vitamin D is good for your little one. I do not think you have to give individual vitamins tabs or syrup. In my opinion, she is too young to take lot of pills. Just make sure to help her develop healthy eating habits.

Regarding Asurna, I think the dosage is pretty good for a child (~ 30mg/kg). so, give it some time to work. When we started chelation for our daughter, it took almost an year to see real drop in ferritin. Do not use any metal spoon or glass when you mix the tab with juice or water. It is not needed to be taken in empty stomach. Just make sure she takes it daily . The only time it should be stopped is when she has fever. and most importantly make sure she drinks lots of fluid and get regular exercise. other than that, bring her up as a regular child . do not overprotect her or tell her she cannot do something. She can and will do everything she wants to. Now thal is a totally manageable disease. Best of luck!

To the point and good answer. One thing I like to add is do not adjust the dosage of Asunra without consulting the doctor. The dosage seems fine.

Thank you Canadian_Family

Agree with Canadian_Family that you should not change dosage without consulting your doctor.

Dear all,

My babies current ferrittin is 926 and want to start with chelaton.Her weight is 13 kg and 27 months old.

Andy advised to start 1/3 of normal dose.In my city 100 mg and 400 mg are available.What will be the dose?