Needing a bit of a whinge.....

I am well and truly fed up of ITP. Its been a lovely warm weekend here, but instead of enjoying it, I've spent a lot of time trying to persuade Dougie to put a jumper on because all the bruises on his arms look so bad. It shouldn't matter what other people think, but it does. He went out with a friend to play in the fields this afternoon, and has come home with even more.

The other thing that is annoying me is that we seem to have got sucked back into visits to the hospital. Three monthly was just about right, but more frequently makes me concentrate too much on numbers, and then I over-worry about Dougie's safety. I am already really really not looking forward to tomorrow's trip to see the paediatrician. I'm tempted to just opt out and stop taking him. Its not as if anyone is doing anything other than monitoring him, so I can't see its achieving much.

GRRRR, damn ITP. Sorry, I just needed to get it off my chest!

Ali -
Glad you had a warm weekend - I'm sure it made you feel better, even with the worry of bruises. Brady never seems to get cold, so he wears shorts and a short-sleeved t-shirt to school every day, even throughout the winter. I'm sure his teachers think I'm crazy, but if anyone mentions bruises I think he just tells them he has a blood disorder, tells them the full name, they don't understand what he's saying and that's the end of it!

I know how you feel about not wanting to have regular hospital visits. I agree with you that it puts so much of a focus on counts, etc. Let us know what you decide to do about tomorrow - since he got bruises after a weekend of playing it seems like you may just want to have him checked for peace of mind. Are you going weekly now? At what platelet threshhold do you start going weekly? We haven't gotten a platelet check in several months, but I'm going to try to take Brady tomorrow. Brady is really resisting getting a count because he worries that he may need a treatment. He isn't bleeding or bruising at all, so I'm guessing he's around 50k but he doesn't trust me. I told him we have to go tomorrow, so I'll be thinking about Dougie at the same time. Maybe they'll both be over 50k - I'll pray for that tonight!!

Hang in there.
Beth

Hi Beth

Yes, we seem to be back on weekly or fortnightly counts. I am not sure why or what the trigger point is. I am going to ask to go back to monthly max. Its mostly me that minds the bruises, Dougie just ignores them. When he has the below 10K kind, they just look so bad and I get paranoid that people are looking at him and thinking that we must be beating him up on a daily basis!!!!

I will keep my fingers crossed for 50+ for Brady! Let me know how it goes. Actually, I am hoping for great things for Dougie despite the bruises. He had a virus last week which gave him a temperature for a few days and I've always believed that this is what triggered his last lot of good counts.

Ali

Beginning to see the light at the end of the tunnel....... Dougie's count yesterday was 29!!!!!! The doctor completely rubbished my theory that illnesses involving temperatures improve Dougie's count dramatically, but yesterday was the first day he has been without the rash in months - even if the doctor doesn't believe it, I am convinced. Even if it just triggers months of his count bouncing around like it did last time, I would be happy.

The doctor also completely rubbished the idea of lactose intolerance being anything to do with it, although he did accept that protein intolerances could have an impact???? Not sure I understood this part of the argument. He was very dismissive about the whole thing until I pointed out that the ITP Support Association were funding research into this, when he got a little more interested.

Ali :silly:

P.S. Beth, did you manage to get Brady anywhere near the doctors??????

Hey Ali,

29 is good!!! I know you probably thought it was lower due to his bruises. I know higher would be better but he has had great numbers in the past and i know that he will see those high numbers again

As for the fever and counts i beleive that Devyns last count was so good because a few days prior he had a high fever. I knew his numbers were good because he had no signs of low counts in a couple weeks but i never expected it to be over 200,000. Were are doing tests every 4-6 weeks, sooner if i have concerns. When we were doing them every 2 weeks i was a nervous wreck all the time so i can understand how you feel about doing the tests more often.

Dougie will jump back up to high numbers i just know it

Keep us posted
Deanna

Hi Deanna,

Don't get me wrong, I am delighted with 29 - he's had nearly 3 months of sub 20K, so its about time!!!!

What surprises me a bit is how quickly his count changed. I know that it was under 10K at the end of last week, because he was getting a very specific type of bruise that he never gets unless it is under 10K. Saturday, he had a load of new rash on his legs, so again it must have been under 15K. Sunday he got new bruises, which he doesn't really get above 20K, but not the very specific type of under 10K bruises. So for it to be 29K on Monday is just fantastic.

I am pleased you've said about Devyn being higher after a fever too - I keep thinking its just my imagination, and the Dr was very dismissive about the theory. I am 90% convinced that this is what set off Dougie's last round of good counts. Hopefully Dougie can match Devyns's 200K levels the next time we go. Although, Dougie's next appointment is May, so who knows what things will be like by then! (I told the nurse on the appointments desk that his next appointment had to be at 9.00 on a Monday morning, and there weren't any free till then!).

Hoping Devyn's next count is holding up in the 100s, Alison

Hey, Ali -

Glad that Dougie is on the upswing! Is Dougie lactose-intolerant? Brady was diagnosed with that several years back. For a while, we gave him Lactaid pills whenever he was going to consume dairy, but now he seems able to tolerate dairy in small amounts.

Yes - I dragged Brady to the hospital lab yesterday afternoon. The doctor's office just called with results and Brady's count is 63k! For some reason, Brady was convinced he was in the 20s. Before we went I told Brady I thought he'd be at 85k or 63k. Of course, it was a lucky guess on my part but maybe he'll start thinking that I know a little something! Brady had a sinus infection last week and has been on antibiotics, so that may be part of the reason that his count is up. Brady's last treatment of WinRho was one year ago, when we were going on Spring Break, so we're happy to be above 50k. Maybe puberty is helping him also. I told Brady that we'll wait three months to get another count (unless he has bleeding symptoms) and I marked the calendar, so I think he's relieved.

Good luck and I hope that Dougie continues to show signs of increasing counts!