What does actively bleeding really mean?

Hi there

My son has had ITP now for over 13 years. He is 14 1/2. He has had many different treatments in the past but has not had any for 3 years. He has been doing well but now is at 24,000. He had a nose bleed yesterday and has alot of petichae now. We have been doing this a long time, but what I dont understand is why do they keep changing their policy on treating. Adam used to get a treatment when he got to 20,000 or under. He wasnt always having a nose bleed and they would treat. Now I am told that they dont treat even under 10,000. So my question is, how active is active? If he had a nose bleed and it stopped is that considered not active? How do we know when the next bleed is going to happen? In other words, do we not treat and then have a nose bleed? Fortunately, his bleeding does stop. However, one never knows how heavy a bleed will be. Are we being paranoid to want to have a treatment to protect future bleeds? This disease sucks! My son is tired, has headaches and I know is concerned. But the dr wont do anything. Any suggestions? Thanks all! Carla

Carla:


I just answered a similar question the other day, so I'll just copy and paste that:

The problem with trying to prevent crashes is that you cannot predict when that may happen, and you could end up over-treating the child. All treatments come with risks and side effects, so it really does become a benefit vs. risk type of thing.

Most ITP patients do not treat to prevent drops, they deal with them as they occur. I know this sounds like a "too late then" type of thing, but really, ITP can last years and the long-term side effects can really add up, especially for one so young.

Treating children with ITP is already controversial. In the UK, they don't treat children much at all, and some of that thinking is filtering over here to the U.S.

People without ITP get nosebleeds too. When my niece was younger, she had horrible nose bleeds and the amount of blood that came out was enough to scare anyone. Just a light touch to her nose would cause gushing. She ended up having it cauterized. The point is, as long as it can be stopped without medical intervention, it's okay.

Yes, they do seem to keep lowering the count for treatment levels. As they find out more about ITP and patients state that treatments are worse than the disorder itself, things are changing. They tend to look at symptoms now more than counts which is actually a positive thing at times.

I keep pointing people to this video. It's very helpful:

fhs.mcmaster.ca/medicine/hematology/ITP-2010/player.html

We were at the hematologist today. We love our doctor and the hospital (MGH in Boston). When we started this ITP journey about a year ago, they wanted to treat our daughter at anything below 20K and made us all very scared. Highly dramatic and medicalized. Today she came in at a whopping 10K -- up from 5K last week, after yucky yucky prednisone -- and we were all smiles and cheers. 10K feels high. She ALSO had a big nosebleed this morning, and I know it can feel scary. I personally think my duaghter got hers because it's winter and the house is really dry with the heat on. I've noticed she always bleeds out of just one nostril which, for some reason, makes me less nervous.

Now, where I DO get nervous is when I see any blood blisters (even tiny ones) or pettichae in her mouth. That's our go to treatment button. For us, treatment has become over this one year more or a response to symptoms than to numbers. I've learned this from many of the good people on this site.

I guess my real point is that each person/parent/family has to find their own comfort zone and know what you do and do not feel safe with for your child. The "not knowingness" of this disease can really suck but... I'm sure you will find your way and get your equilibrium.