My daughter newly diagnosed at 17

My daughter was diagnosed a month ago and I have a few questions for any parents of teenagers with ITP.
We took my daughter for routine bloodwork and her count was 114,000 and since then, she has had bloodwork every 2-3 weeks and has been dropping about 2000 every time. The hematologists isn't too worried about this and wanted to see her back in 6 weeks this time. I am concerned with the continual drop and am a little worried about not having her tested again for 6 weeks. My question is, is this normal for children that are newly diagnosed so that the doctors can see where she will level out at and at what point should I be pushing the doctor to do something? The treatment they are talking about at this time is putting her on steroids for a short time.
Thank you in advance for your help!!!

Well, you really wouldn't want to do steroids until her counts are way lower than they are now, unless she's having bleeding issues. Steroids are awful drugs. Most of the ITP treatments are very unpleasant and most people don't treat unless their counts are less than 30,000. Your daughter's counts are very safe.

Also, people's counts fluctuate. Even normal people (i.e. without ITP) have fluctuations in their counts. There's not much difference between 114,000 and 110,000. Her count might well be back up next time. Don't panic yet; she may well stabilize at high counts.

Lily

Ok, thank you very much!!! She thankfully isn't having any bleeding issues in about 3 months but at that time, we didn't know what it was.
Thank you again, I am still trying to understand this along with her other medical conditions.
Sue

Hi Sroffman,sorry to hear your daugther has ITP. A count of 114,000 is safe, in fact anything over 30,000 is considered safe and some say anything over 20,000 is safe and needs no treatment other than watch and see what happens.

The good part is, she is now under a Haematologist. The reason they want to try steroids for a short time is to see how she reacts to them and if they raise her platelet count. Steroids work for some people and not others, I'am one of the people they do not work for. My own count dropped at 2,000 per/mth for 3yrs then leveled out at 50,000, been around there for the last 12mths with no treatment. Last test I started to move down again. The Haematologist only wants to see me once every 6 mths.

You will find plenty of information here, in fact there is a section just for teens with ITP. I think you will find the more you learn the more relaxed you will become. Platelets at low numbers are younger and stickier than platelets of people with a normal count, but are still effective in protecting against hemorrhage.

Hope I have been of some help.
Rgds Benny.

Sue you mentioned our daughter's "other medical conditions", is there a chance one of them could bring about ITP?

My count has been decent - I had to smile when our HMO termed my count of 112k [or around there] as "mild thrombocytopenia" on the CBC results printout.

I hope her next CBC will show her count up!

Melinda,
They don't think her other conditions caused this. She has PCOS, Pseudotumor Crebri and gets Migraines. I think it might have something to do with her being a premie and her immune system not being able to develop the right way.

Benny,
Thank you very much!

Everyone's help has helped me calm down a bit about them not wanting to see her for 6 weeks!
Sue

Sroffman, It is hard when you first find out about the platelets being low and it also takes time to relax a bit so worrying at this stage is pretty normal. I also understand what your saying about the bloodwork, sometimes it is comforting just knowing what your counts are. For a long time after I got dx I only could relax when I got my results but with time you learn to not worry quiet so much and just watch for bruising.

I hope her counts stay that high and get higher without steroids because steroids really have a big impact on your life. Hopefully this is just a little hiccup and she just will have to monitor her platelets every now and again, being a teenager is hard enough without this worry.

According to the newest ASH 2011 protocol for ITP, it's not even considered ITP until the platelets are below 100,000.
www.hematology.org/Practice/Guidelines/2934.aspx