Think I might give in re not going for a test

Dougie has just come back from Youth Club. He was complaining that one of his fingers suddenly started to hurt, and when I look it is like the blood vessel has burst or something - he has a big blue bump under the joint. So then I looked further. He has loads of bruises I hadn't seen before, plus he has lots of purple and red lines on his skin made up of bruising and petechiae and bleeding under the skin. You can clearly see where he has scratched himself - its like a visual record of every itch he's had today!!!!!

Might give up and take him to the hospital tomorrow for a test. Its been down for at least two weeks now - why can't his count just bounce back up again NOW!

Ali

I hope Dougie's symptoms are not indicative of his count and he will fool you with something high! It's a good idea to just have him checked - that way you'll know where he is and you can adjust his activity accordingly. Especially since you mentioned an amusement park outing. I took Brady in yesterday for the same reason - he has Spring Break next week and really wants to go to Busch Gardens (a really fun amusement park near us). Unfortunately, his count had dropped down to 39k, which isn't terrible, but isn't high enough to go on huge roller coasters. We're thinking he'll have to get a treatment to go - it has been 15 months since his last treatment, so we can't complain too much, but we were hoping this was OVER!!!

Good luck with the blood test tomorrow!

Beth - mom to Brady (age 13, diagnosed 1/18/02 - last WinRho treatment was Dec. '08)

Hi Beth

I am sorry that Brady's count is back down. It must be disappointing for you especially since the high count is the first one he's had. I've seen the park you mention on TV ads and it looks great.

What I wanted to ask, is what sort of count do you think you need for theme park rides. Have you had any advice? I seem to remember the doctor last year mentioning 70K, but I can't quite recall it definitely. Dougie might bounce up again to something high, so if he loses his symptoms I am going to get him in for a count quick and then go the next day if it is ok! He's been waiting for nearly a year to go, but unfortunately when his count was good, it was winter and Alton Towers was closed.

Thanks, Ali

I would say ask the doctor for that safety info. I think near 80k would be my safety check for Tim to go on rides, but if I remember correctly, they were going to allow him on rides at 60k.

Hey, Ali -
Thanks for your concern about Brady. It does stink - for some reason I allowed myself to think that we may be on our way out of this when Brady had that good count in December!

We're in the same boat as you - in December, when Brady's count was 90k, Busch Gardens was closed. We haven't been to an amusement park in a couple years because of low counts over the summers, so thought this may be our chance. I think the doctor told us 75k as the count they'd like to see before we let Brady go on big amusement park rides. Brady likes all the really crazy, scary rides - maybe it's different if you're talking about something more mild. The last time we went to Busch Gardens, we went on this roller coaster that dropped 100 feet at some ridiculous angle. Before it started, I actually started crying because I thought we were all going to die. I don't think my boys knew what to do - we laugh about it now, but I'll definitely be sitting on the bench when they ride that one this year!

I called the hemo. and scheduled a WinRho treatment for Monday. I checked with Brady first, and he really wants to be able to go next week so he decided it's worth treatment. He hates getting an i.v., so I didn't know what he'd want to do. Hopefully that will get Brady to the amusement park and get us through a summer of wakeboarding, tubing and probably a return trip to some roller coaster place!

Good luck with Dougie - I hope his count bounces up.

Beth - mom to Brady (age 13, diagnosed 1/18/02)

Beth

My kids don't even ask me go on the rides now because they say they are embarassed by my screaming! And now my youngest kid is 9 nearly 10, I've lost my excuse for sticking to the tamer stuff.

I am virtually sure that Dougie's doctor said 70 last year, and certainly when he had a count of 60 in January, he said there were no activity restrictions at all. Not sure that Dougie has a great chance of getting to Alton Towers in the school holiday, but I am going to try my best to get him there if his count is ok - there is more chance than last year when even with steroids he only got to 35k or so.

Hope that Brady has a great time, and that your experience isn't too bad!

Ali

Hi Ali,

That's funny about the rides. My boys always tell me not to scream at the beginning of the ride, but it's simply not possible - screaming is the only way I can go on the crazy roller coasters! They think that my screaming is embarrassing also; oh well, I figure that my mere existence often embarrasses them these days. Teenagers...

I think I'll take Brady for another blood test friday afternoon and hope for a miraculous jump back up to 90k. You never know.

Good luck with Dougie and we'll keep our fingers crossed for higher counts.

Beth - mom to Brady (age 13, diagnosed 1/18/02)