Discussion Forums > Thalassemia Major
Hardik
hardik:
Hello thalpals
Thanks for reply.....
Kk if I stop desirox right now for 10 days ......then is it possible that giving him only IP6 ...and Wheatgrass.... Can help to reduce ferritin and lowering his lft values as I have to go on 30 of this month to hospital..... So then I can talk to doc about his health factors..
And plz also mention better alternative to desirox.
Thanks
Neha
Andy Battaglia:
Yes, you should take a break from the chelation to get the liver scores back to normal. After the break, introduce the drug back slowly, taking the dose every other day for two weeks and check the liver scores. Make sure the test is done early in the day when the liver score is lower and that the child is well hydrated for the test. If it's back to normal, resume daily chelation. Continue the IP6 and wheatgrass throughout.
Dharmesh:
Tab Defrijet (Sun pharma) and Tab Asunra (Novartis) are another brands.
hardik:
Hello Andy
It's so frustrating when you know the fault and can't repair it......The same is happening to me..
Hardik's serum ferritin always shows near about 2000 value...as he is on desirox 250 mg(2.8 year,13 kg) and moreover desirox doesn't suit him anyway....and always increases his Lft (latest sgot/sgpt are 70/122) when this time I tried to increase the dose by half ...(on my risk).
I tried split dose(1/2 morning but not empty stomach. ,IP6 and Wheatgrass in afternoon after 6 hours gap and 1 tab of desirox in night again after 6 hours gap) ....but that doesn't work also. The only hope is Wheatgrass (3 grms)and IP6(1cap-510 mg). It's almost about 1 yr that doc had started his desirox but no sign of iron removal till now..(no black stool) and moreover now the baby screams for stomach ache daily(may be effect of iron)..though I gave him plenty of water...but the doc ....ohh their attitude...and .... thoughts that she knows everything is so unbearable........and the best part ...single hametologist....with not listening attitude makes it worst.What to do...?where to go??? Don't know ??? :mad :wah
Guide about....
1)which milk thistle to buy ,when to give and how much quantity for baby .
2) which chelation to adopt and how to start without doc advice.
3)what to do for stomach ache.
4)can lack of folic acid cause stomach ache? As I gave 5 mg on alternate days.....can dis be the reason?
Parin:
Hey Hardik,
Cool down everything will be all right.Where are you from?
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