Somedays I don't know which way to go......

My daughter was diagnosed on the 20th of June with ITP. The diagnosis came after some fairly significant nosebleed and bruising on her extremeties. Her count at the time of diagnosis was 31,000. She had counts that followed that were:44,000, 61,000, 48,000, 36,000 and the last one two weeks ago was 79,000.
After the diagnosis she had an abdominal ultrasound that did show her spleen was slightly enlarged. We have seen an internist but not a hematolgist yet.
My concern being that one of the things that I continue to see from Tailor is complaints of headaches and stomach pain in the area of the spleen. As of today, I do see some bruising that is new. She had a fall one week ago and cut her knee-this was not a deep cut at all, it was a typical fall on your knee cut but the thing bled like know tomorrow. Not hard bleeding but just was ongoing.
I am at a loss of if I should be pushing for the marrow test or not. I also don't know if when a cut does happen like that if I should be seeking medical attention or just deal with it(btw, I think the latter).
Thanks in advance for any thoughts
Shelley

Shelley,

Firstly you are right - you would treat an external cut exactly the same way as normal - pressure, elevate, etc. Unless she were to be bleeding an awful lot, I don't think I would worry about it for a good few hours.

Secondly, given that your daughter has spleen pain, I think I might be tempted to ask for a referral to a haematologist, if only so that you can stop worrying about it. Bone marrow testing isn't really necessary to diagnose ITP, and its not a great experience for the patient, but some doctors like to do them to rule out anything else, especially before treatment.

ITP is a stupid pointless condition that worries the heck out of most of us parents. Most of the time it is no more than a nuisance illness though. The thing I've learnt that I wish I had known at the beginning two years ago, is not to get too fixated on numbers. My son seems to do ok with any double digit number (even 11!). I've learnt to read the symptoms rather than the blood tests, and I worry less as a result. Since Christmas he's not had a count over 20, but I can't see symptoms at counts higher than 15, and those periods of time are a lot more relaxed. If your daughter has a lot of new bruising and she doesn't know where its come from, then her count is probably lower and it might be worth getting a count done to check this - if only so that you can adjust the activities she is doing accordingly.

Good luck with the next count

Ali

Ali,
you hit the nail on the head-it is a major pain the arse illness-lol. I am feeling extremely frustrated right now by this illness as somedays I feel our life is on hold because of it:unsure: Tailor plays the highest level of girls hockey in Ontario, she has been selected as a first year player for the Midget AA team and this involves serious hockey. She was told at the time of diagnosis that she was out for at least 6 weeks. The reason I tell you this is because I feel like that is on hold for her-I know she is having trouble getting motivated to do her training to be ready for the upcoming season because she doesn't really know if she will be able to play.
We also played the waiting game on our family vacation that we just returned home from(we went to Europe). We were not deemed safe to travel until the Friday before we left(on the Sunday)because prior to her last count of 76,000 she had fallen to 36,000 and her wbc count was low. At that point I sought the help of a naturopath who gave her phosporus 6(I believe), she started it the Monday when her level was 36 and it was up to 76 by the Friday.
I know I am rambling and for that I apologize but I wonder-do your children play sports and if so, when does the doctor deem them safe to play? I too, do not want to live our life around numbers but I also don't want people to think I am being careless with my child's life.

Shelley

Oh dear!

Yes, my son is a pretty keen sportsman, particularly football (soccer). His consultant says that he shouldn't play competitive football unless his count is over 30K. Being 100% honest though, we've often let him play with a count of over 20K, and occasionally under 10K. I recently went to the UK ITP conference, and all bar one of the medics there said that they had never seen an ICH due to a sports injury - the one that they had seen was due to powerlifting where they put it down to the sudden changes in blood pressure.

As his count has been under 20K for the last 7 months, Dougie is also finding it difficult to motivate himself to go to football training. But he does continue to go although he doesn't play in matches. He also plays tennis (a new and very safe sport for him) and he plays basketball for his school. In addition, he rides his pushbike, swims, belongs to the scouts............in other words, he has a normal life.

30K is generally accepted to be the magic number for sports (other than boxing and rugby where you need something higher). 30K is also good for theme parks if you ever come across that issue!

Good luck, Ali

P.s Incidentally, we are flying to Greece later this week and Dougie's count on Monday was 17K. I take a letter from his consultant with us and make sure we have decent travel insurance. No-one has ever suggested that its a problem.

Interesting re the sports and anything being OK (excpet boxing and rugby) at over 30K. I met with my 12 year old son's haemotologist this morning at Sick Kids Hosppital in Toronto, who said that Europe and the UK especially are much less conservative with respect to platelet counts. Here in North America they want atleast 50K or more for any contact sports. Are we that paranoid here in NA or are the doctors afraid of lawsuits??

Hi Shelley,

where in ontario are you, I am in ottawa and recently diagnosed and I play hockey and ringette... should I be...

I'm in Toronto too, but I'm an adult with ITP. Have you seen this:

www.itpkids.org/content/itp_sports.html

It's made me feel a lot more comfortable about doing things with ITP. Unfortunately, hockey may be up there with American football and rugby.

Lily

Bev,

We are in Southwestern Ontario, Tailor plays hockey out of Kitchener. As of today, Tailor has been pulled from her hockey again. She had been cleared to play the week before September when her counts were up to 123,000 but had fallen to 95,000 as of last week. Yesterday Tailor had 3 nosebleeds and more bruising, so we went for bloodwork this morning and have been referred to a hematologist in London. So here we start the numbers game again.

Shelley

Hi Shelley,

My daughter plays for Brock U on a hockey scholarship. I feel for Taylor as I am going through the same things except right now my counts are 27000!! I had to say no to hockey this fall and my season opener in ringette is sat night and now I have to go in for an IVIG treatment... no season opener for me.

It is a scary condition but with Taylor's age she should outgrow it.

Let me know how you make out

Tell her she will be back on the ice soon

Bev

That is great that your daughter is on a scholarship-good for her. That is Tailor's hope-she is actually looking into attending a prep school in the States to attend for her senior years.
I am sorry you can't play your home opener-that sucks! Tai got to play last weekend with her team in their first tournament and got lots of ice time so she was happy! She is handling this very maturely and understands very well why she can not play when he numbers are low. Her counts from yesterdays bloodwork were 80,000-so they are still falling which I figured. She will sit out her field hockey games too until we know what her "safe" number is.

Thanks for your concern and good luck to you with your treatments! I will keep you posted as to how we make out.

Shelley

I am so excited-we saw our naturopath last week after Tailor's blood work came back at 80,000. He decided after looking at her numbers that her folic acid and B vitamins always run low, so he gave her a shot of both and her platelets this week were at 149,000! Hockey, here she comes!