ITP partial recovery

Hi friends

Its been quite a while I did not visit the forum. My daughter was dx ITP at age 3 yrs, we tried high doses of prednisone, then WinRho but nothing would work ...

Then my uncle (whos a surgeon in US) recommended to try tibetan meds which he has seen worked for many including him. funny he himself is in allopathy but believes in Herbal meds which he feels some placebo there...We had emailed the place (northern India) and they had sent some pills and was asked to give it with honey everyday for 4 months...We wanted to donate some $$ since it was an University there but they did not accept (they are not into money)...

We did the meds and 1-2 months after finishing the course we decided to check her counts as we had not seen bruising for a while..After 3 and half yrs my daughter had normal platelet counts...

She's 6 yrs and we usually do blood work only when we see bruising (usually when she has cough & cold) and then also its usually on the higher lows...I donno if it was the tibetan meds or just time...

Just wanted share this with you parents.

Hello, Md Ys . My daughter was diagnosed about 4 months ago. The first time her platelets dropped and went up on their own. The second time they dropped to 2,000 so we had to do ivig. After the ivig wore off her platelets continues to rise and reached normal levels. Her hematologist dc her file last month. This week she caught a cold and had a low grade fever. I noticed brusing and petichea so I took her to the hematologist and her counts were 4,000. He decided to put her on prednisone and we will check her counts again on Friday. All 3 times her platelets have dropped she has been sick. I noticed you wrote something about your daughters platelets dropping when she was sick. Is this something that has happen more than once? I'm worried that her platelets might drop every time she gets sick. Is this something anyone had heard of or experienced. Anyone's input is welcomed.. Also did you tell your doctor about those pills and if so was he in agreement?

Thank you

Usually in any auto immune ds, when the body fights (be it cold or anything) it mistakes the platelets and eliminates them which is the basic of auto immune ds (body immunity so strong that it goes against it)...My son has auto imm ds related to kidney and every cough cold fever he used to leak protein from urine..Prednisone never helped long term for both of my kids...My daughter wth ITP gets bruising so then i do blood test that too if its a lot...Wth my son he's on different medication and doing fine(I wish him to be meds free like my daughter but donno when)....

We had tried IvIG, prednisone, winrho but nothing helped long term. I did ask her heamotologist if i could use alternative meds and she asked us to do what we feel ok with. since she was on no meds then we tried the tibetan meds for 4 months.

We take our son to Lucile packard (standford) and he's seen by a fellow nephro(doing research) along with senior nephro. He was also saying sometimes herbs help & wanted to know the contents of the pills we used. we did not try the tibetan meds (they were very honest to tell us they cannot cure:( but decrease the relapse) for my son since he's on meds now.

sigh!!! I really donno if its the tibetan pills or time but I guess with time this gets better...hang in there