Why don't they ever believe me??? Tim 3k

Its a little funny really. Last week they came in and took his cbc, he was at 150k, so with no standing order he did not get any NPlate. He didn't see the hemonc, hasn't seen him since the first time a month ago. We got a call the next day asking what we thought about it and I said, well usually he gets a shot every time but I understood that maybe they had a different philsophy of treatment, but that he will more than likely bottom out in a week. Well, low and behold, today he is 3k. They came in and were like, do you want to go home and have us call you? And I was like, well he's pretty low, he needs treatment and they didn't really believe me. They said they weren't sure they could get the nplate today, but they went and got his nurse who sat down and handed me a paper about Nplate (oh please) and started to tell me about riticulin (oh please again) and why they thought they should not treat him unless he was below 50k. I told her, "he's well below 50k" and her eyes were like O.O and when she checked they were 3k! She went and got the hemonc (who was on the floor at the time (and we were told earlier hew as not here, so they must have paged him) and he came to talk to us about it all. I think he now understands that Tim does not just hold a little count of 50k or even 150k for a week. He is suggesting a second round of rituximab which he feels may help.

Well, the NPlate is here. Interesting day!

Its sooooo annoying when they don't believe you isn't it! When we went to see the haematologist the last time, I said that I thought Dougies count was under 20 (optimistically) and he just wouldn't have it. So when it came back at 9, I felt vindicated. They really need to understand that we understand how ITP produces symptoms for our kids.

I'm sure that this won't be a comfort at all, but Dougie is probably right there in single digits with Tim. He had a brief respite from blue bruises over the weekend, but he came home yesterday with the shape of his school backpack imprinted in petechiae on his back and shoulders (quite funny, but he isn't really seeing the joke at the moment), and has a whole load of new blue bruises today. To be fair, some of them are probably from playing basketball after school.

Roll on the haematologist on Friday - can't come soon enough for me! I hope that the N-plate works quickly for Tim

Ali

If it were the old hemonc, he'd believe us..he's learned. This new guy doesn't really know yet. Its gonna take him some time. Its funny that they didn't take us seriously today, and said that the hemonc was on the floor, then he shows up within a few minutes of getting the count. I told them more than once, Tim's counts will drop from normal over night...no kidding.

Anyway, that nutty kid, while I was at Karate tonight (yes, I do Karate) rode his bike to McDonalds with his platelets at 3k...WITHOUT A HELMET!!!)

Ali, that's interesting and a little funny about the backpack bruise! Thankfully Tim never bruises like that anymore. As low as he was, he only had tiny little light bruises. He does bleed though. Is Dougie getting any treatment yet or are you any closer to a decision? They did mention splenectomy again, but w just aren't going there. What part of no do they not understand?!

No, he's not getting treatment at the moment, and I am probably no more comfortable with the idea either ............ but we are going to see the haematologist in Manchester tomorrow. Dougie's been under 20K again for a long time, and its significantly affecting his life and the things he wants to do, so we've agreed with him that we will have a chat about treatment options with the doctor. Dougie wants to go skiing with his school next year, and I don't know whether to book him onto the trip or not because I don't think he could go at 20K. He's been desperate to go to the BMX track since this all started, and he missed a lot of football at the end of the season because his count was too low to play. Plus he's started to get a bit embarrassed by all the bruises and marks - at that age, you just want to be the same as your mates, and the way you look really matters.

At least we are going to have the discussion, although it might not result in anything.

Ali

Yeah, that's kind of tough. We seem to have alot more choice here in the states about treatment options. I'm always asked what I think and what I want to do, after given a list of choices. I understand the watch and wait to a certain point, but when they are that low for that long (under 20k), and when they want to be active, they really need to consider doing something, at least something temporary to give the kids a boost. In my opinion, no way should a kid go skiing at 20k...wow.

I hope they are reasonable with you guys. I hope you get a break.

Your boys sound just like Caitlin! She did whatever she wanted when I wasn't watching regardless of what her count was! Thank goodness for Nplate! Keeps me sane! We just got back from a cruise in Alaska and she had quite a bit of bruising. We thought we'd come back to lower counts and I was going to contribute it to the lower temps because that seems to be her pattern. But luckily, her count came back at 120, so she's still doing great!

She broke her nose a few weeks ago at the new gym we had moved her to and bled quite a bit. Her study coordinator was surprised that we didn't take her to the ER, but the coach was able to "pop" her nose back into place and she had a real bruised nosed with black eyes for a little over a week and then had several bloody noses throughout that period. I think that would have happened to anyone with a broken nose though. We thought long and hard over our vacation and decided to move Caitlin back to her old gym just because everyone is familiar with her there and the other gym was just too large. Caitlin seems happy to be back so that is a relief!

I hope the Nplate kicks in quickly for Tim and the hematologist will realize that he needs consistent treatment to stay in the safe range. I also hope things start to turn around soon for Dougie. Hopefully the hematologist will agree to some kind of treatment (other than Prednisone...doesn't do good for teens' self-esteem) that will help keep his count up higher so that he isn't bruising as much.