GRand daughter

[Kayla2007]

She's 10 and and it's been 1 year now and every month sometime twice a month she drops to 1000 and 4000 nothing is working and IVIG isn't holding he count high enough we are lost on answers

[Dahle2424]

Sorry to hear your frustration. I am 58yrs old and have had ITP for over 30yrs.

with a count of 3000 to 5000. This would be Chronic ITP. Children that young

are usually diagnosed as Acute ITP. Research would show they can out grow it.

I have gone thru many IVIG treatments, and has always been a waste of time and money. For some odd reason I am holding my own, and only get checked out once a year for a blood count, only to have the doctor freak out and suggest following up with a Hematologist. I have been thru 4 Hematologist and gave up.

No More. Being prone to Kidney stones I have worked up a plan with my Urologist to order up Platelets before any operation.

Good Luck

[Kayla2007 in reply to Dahle2424]

thank you for your story its just so hard on all of us seeing her go thru all the blood draws and IVs

[Suntied in reply to Kayla2007]

Rituxan helps 60 percent of people with ITP I am getting that treatment now. If it works can send her into remission then she would only have to go once or twicea year.

[NickyD]

Hi My lowest count was zero and i got through that. I tried 7 different treatments and it was the last one that worked. At its worst i was attending hospital four to five times a week and have a scar where the blood was taken each time. IVIG did nothing for me. There are many other treatments to try. You just have to find the one that works. Good Luck. Nicky

[sharroN42]

I have found dietary approaches (check the food list on this web site) and taking amla, an ayurvedic supplement helped. Good luck. My thoughts are with you.

[bruiser2017]

Sorry to hear about your granddaughter. A bright spot is that according to research most children do grow out of this particular strange affliction.

Re IVIG, this is not designed to be a lasting treatment, it is a short term 'fix' normally applied as an emergency stop gap, or before having an operation or tooth extraction, usually only raising counts for between 2 - 4 weeks.

The MD, better yet your granddaughters haematologist should be looking at treatments that have a longer term efficacy. There are a list of ITP treatments on the ITP Support Association web site.

Best of luck and let us know how she gets on.

Ray

[Kayla2007 in reply to bruiser2017]

thanks for your reply and I will keep you posted....