Platelet Disorder Support Association

[22-patience]

Has anyone looked up the PDSA. Lots of up-to-date info on ITP.

[Hidden]

Should always be your go to place for ITP info and well worth a memebrship too

[22-patience in reply to Hidden]

I agree. I am a member.

[tgk62]

I'm a member

[scaryteacher]

I use it along with the ITP Support Association site, which is the UK one. There's a difference between how the Europeans, the Brits and the Americans handle ITP, so it's good for a compare and contrast exercise.

[Hidden in reply to scaryteacher]

Most definately scary..I am in oz so it can take a little time to sort through the "american" of it all. We seem to be a lot more laid back about it out here and not treat as much it seems.

[scaryteacher in reply to Hidden]

Try Belgium......they don't treat until your count is 10 or less, you are bruised all over, and haemorrhaging all over A&E.

[22-patience in reply to scaryteacher]

That's terrible! It's hard to have any semblance of normalcy in your life when you are continually handling a bleeding problem. It can make you fearful to do anything! Drive, exercise, eat, take trips. I have even been told at 20 platelets not to use scissors or knives, not to shave my legs, not to ride in the front seat of our car, to go right to the ER if I bump my head or take a fall. The doctors here in America and in Mexico (where I go frequently) take it quite seriously. I try NOT to live in fear. I do try to be careful but I must admit sometimes I live in total denial! 😎

[scaryteacher in reply to 22-patience]

I'm asymptomatic, so I bruise, but don't often bleed. I have blood tests every six months, so don't get too hung up on what my count is. I travel, drive, cook, shave my legs....but I've had this 20 years, so can judge what I can get away with, and only remember I've got it when I get really tired.

I think the docs in the U.S. are more cautious than those in Europe and the UK.

[22-patience in reply to scaryteacher]

Yes, you sound like me except I have only had ITP eight years and I have had a splenectomy. Have you ever had a count of one or three or 4? Well, my platelets fluxuate so much and so quickly that my doctor has me keep a close check on my platelets (every one to two weeks depending on symptoms) and try to keep them in check before they fall to a level where I have to check in for another seven hour infusion. I would rather do it her way. My platelets were 77 last Monday and I just returned from the lab with results of eight. I am extremely tired and lightheaded today with blood blisters in my mouth so knew I was on my way down. I don't like to get "hung up" on my platelet count either but I'd rather be safe than sorry.

[scaryteacher in reply to 22-patience]

My count started at between 60-80 and over the years has steadily dropped to between 30-50, sometimes dipping to 15.

I have no treatment, and just get tested every six months in hospital, and if I feel grotty, then I go to the GP, and get a blood test done.

I have been sent to A&E with a count of 19 only to find in the intervening hours it has rocked up by 10, so I get sent home again.

I get a blood staining rash up my legs, so when that gets dark and starts to spread towards my knees from my ankles, I know to get tested.

I don't think that one size fits all with this, as everyone is different. Sailor who posts on here has a count of 10, and does everything he wants, including travel. He can function normally at that count level. His advice is to focus on how you feel, rather than the count, and that works for me.

[sahasujit in reply to scaryteacher]

My son is 3 years old baby. Last 10th October’15 he got admission for brushing under his skin specially his lower part. Doctor diagnosis his blood report (platelet count was only 4 all other report is perfect)and Doctor said my lovely baby have ITP.

Then doctor started IVIG 6 dos, after using this, after one day my son’s count raise 156 and after one next the count raise 270. Doctor release my son after 3 days and ask to come after one week.

After one week my son’s platelet came down 86 and doctor advice to take steroid.

But I don’t give steroid to my son. In the mean time I made an appointment with a hematologist and child pediatric with the last CBC report. He also suggest me don’t take Steroid and come with CBC after one month.

Last 18th November 2015 my son’s CBC count was 50 platelet and doctor give Steroid for 7 days (if platelet come down more) and also suggest that don’t required to come before 2 month.

During this whole time period my baby have only brushing in his lower part. Brushing are coming and going.

But last night suddenly 4/5 drop of blood came from his nose. All of family member scared and I give one dos of steroid.

Will you please explain why it will happen to my little boy.

It will be so kind of you if you please shade some light on this issue.

[22-patience]

Good for you!