Discussion Forums > Thalassemia Major
Hardik
Andy Battaglia:
Have you tried the desirox right after a meal? Any milk thistle supplement that is just milk thistle will suffice. There is also a supplement called Liv 52 which many find helpful for keeping down liver scores. The stomach ache is most likely due to the desirox, as that is a common side effect, and many patients deal with it by taking the drug right after a meal.
The scores are not high enough to consider stopping the drug, but I think with some trial and error, they will come down.
Bostonian_04:
Hardik,
It takes time for S. ferritin to come down. It took more than two years to see a significant downward shifton our child when she first started chelation. The best way to know if the chelator is working or not is liver MRI.
for the stomach ache, try giving Zantac (Ranitidine) to your child. My daughter has significant stomach issues from using Exjade (even after taking Exjade with food, right after food, split dose and so on). so now she is on Zantac 75mg (twice a day - morning & evening) and the stomach issue is under control. Also we have seen that if she is eating every few hours (and drinking enough liquid) without a long gap between meals, the stomach issues are under control.
Your child is only 2.8 yrs age? if that is the case, In my opinion, don't feed him/her too many supplements. Just healthy meal at regular interval, lots of fluid, dose of ranitidine (to keep stomach ache under control), one multi-vitamin (iron free) and the chelation med. That will be enough.
I will suggest not to do any other chelation without doctor's advice. Just keep up the chelation with the right dose and get the side effects on Desirox under control. it will take time but it will work.
BabyRiya:
I am giving multivitamin polyvsol without iron 1 ml per day and folic acid with 5 ml of super shot wheatgrass. I am exploring ugu leaves as it comes in dry and raw format. Looking for a genuine source and retail company that sells authentic product.
Also giving boiled organic egg
hardik:
Thanks Parin , Bostonian_04, BabyRiya ,Andy and everyone here for ur kind help.....
yes Andy , your advice works .....desirox after meal...and it works...no complaint from last one week..
but I had reduce the dose to 250mg again(half morning and half night) and the swelling under eyes gone(symptom of increased Lft in his case)...
I want to order milk thistle...so plz advice about mg /kg required for a 2.8 year baby weighing 13 kg .
On PuritanPride 250mg /100 cap are available and on amazon link given below...varieties are there....so which to prefer
Plz also guide about the dose of IP6 according to mg/kg as of now I m giving I cap of 510 mg daily
http://www.amazon.in/s/?ie=UTF8&keywords=milkthistle&tag=googinhydr1-21&index=aps&hvadid=123337664411&hvpos=1o2&hvnetw=g&hvrand=1696327924218720613&hvpone=&hvptwo=&hvqmt=b&hvdev=c&hvdvcmdl=&hvlocint=&hvlocphy=1007751&hvtargid=kwd-27400525268&ref=pd_sl_297z169zvo_b
Andy Battaglia:
Splitting the dose works better anyway, so it should be done.
250 mg milk thistle daily or every other day is sufficient at this age. The IP6 dose is also as high as it should be. If either IP6 or milk thistle causes any digestive issues, take every other day.
The brand shown in this link is excellent. Any brand like that which is simply milk thistle is best. Open one cap and mix with food or liquid. If you use this brand, take one every other day. http://www.amazon.in/Zenith-Nutrition-Silymarin-Thistle-Standardized/dp/B008L99WL0/ref=sr_1_3/256-0255141-7926214?ie=UTF8&qid=1471732956&sr=8-3&keywords=milkthistle
Navigation
[0] Message Index
[#] Next page
[*] Previous page
Go to full version