Discussion Forums > Thalassemia Major
Hardik
Andy Battaglia:
1) There's no point in frequent ferritin testing right now. The child is still getting used to the chelator, and it's too early to be worrying about the iron load.
2) Yes, you can mix them with juice. Desirox can also cause loose movements. This is more likely than being caused by IP6.
3) Zinc drops are good at this age.
4) Natural vitamin E capsules from Puritan. 100 IU at this age. These can be opened and the gooey liquid mixed into any food. I wouldn't suggest much else at this age.
5) As I understand it, Dr Ramanan is using thalidomide along with hydroxyurea and wheatgrass and having good success. I don't know much about the use of thalidomide.
hardik:
Hello Andy
Plz solve this QUERY
When my baby was 3 months old....he got his first transfusion....at that time his electrophoresis/hplc reports says that :---
hbf==96%(very high)
hba==4%(very low)
hb a2==2.2%(within range)
1) --> As DR RAMANNAN therapy increases fetal hameoglobin only .....then why did the transfusion happened ....as hbf was pretty nice at that time ?
2)--> Is there any need or demand of doing electrophoresis/hplc again ?
3)--> what is the actual base of DR's therapy ?
4)--> how to know gene mutation of child....?what is its use in bmt??
I am really confused as on talking to person taking therapy.....results in positive attitude ....but moving against nature(as god made our body system to turn hbf to hba) made me confused everytime..
Lokkhi maa:
Hello Andy,
After 9 transfusions on last April my babies ferrittin was 459. Is it necessary to test now or we take some more time? She is now completed 2 yrs old.What do you think about hydroxurea application?
My baby is not interested to take any food.After or before transfusion never she get interest.She just swallow her food with water and maximum time after completing she vomit the all...We are really tired and this is too hard to give her food.She taking daily 5 ml Zinc Syrup but why her appetite is so bad can't understand.She likes just only water and any kind of juice.What to do ??? Please advice..
Andy Battaglia:
Hardik,
Percentages are no indication of total Hb level. Thal majors will always show nearly 100% HbF, but it's the total Hb that matters. If your HbF is 95% but your Hb is only 5, then it is insufficient.
1) If the total amount of HbF is increased, then the Hb will rise. The body of a thal major makes more HbF than normal, but not enough to survive. By adding substances that stimulate HbF production, it is possible in many cases to produce enough HbF to live with either reduced transfusions or eliminated transfusions.
2) Electrophoresis is affected by transfused blood, so unless a break from transfusions is taken, you won't get a true reading by electrophoresis.
3) From what I understand, Dr Ramanan is using a formula he devised that includes hydroxyurea, thalidomide and wheatgrass. The specifics have not been shared by the doctor as of yet.
4) The gene mutation can be determined by DNA analysis
This therapy increases HbF production. It will not produce HbA.
Andy Battaglia:
Lokkhi,
I would suggest stopping all supplements to see if the child's appetite is better. If she does start to eat again, introduce supplements in low doses one at a time and see if something she is taking is disagreeing with her. Keeping her Hb high, >9 will also help the appetite.
The ferritin level should be checked again.
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