BLOOD TEST

OK, I just took Dougie for a blood test. His guess is a very exact 14, mine is a lot wider being somewhere between 16 and 25. Will either of us be right?
I am going to phone the hospital this afternoon and find out. Personally I hope both of us have completely underestimated it!

Ali

Okay Ali - since we are taking wagers, my guess is 4.

I will take Danica's blood this morning also. I am guessing that she will be about 40, as it has only been a week since the IVIg. I know that Dr. Devaraj wants her between 20 and 30, so I am not sure if he will be okay with a count a little higher. By tomorrow, she will be 20, as she loses an average of 20K per day.

Also, she had such a bad cold last week, so it was good that she did not get the Decadron. However, she was feeling horrible again last night, so I am not sure if he will go ahead with the Decadron if she is not well.

I guess I will know in a few hours. (maybe she will be feeling better this am).

Danica also had "too good" of a time at her friend's birthday party. Girls are crazy - she never went to sleep until 6 am, and got up at 9 am.

I will try and check this site before I leave work at 12:30 today, to see what Dougies count was, and I will let you know what is going on here.

Do you think that he will have IVIg? Is that what he got before? If so, how long does it last for you? It almost seems like things are getting worse for Dougie, instead of better. Your hematologist is probably a little suprised.

Michelle - mom to Danica

Hi Michelle

I forgot that today was the day for Danica. It must be nearly impossible to hit an exact range of counts like that when she drops so fast. I hope that she is at the right figure today so that you can start, or at least so they agree to start tomorrow.

Dougie has been getting progressively more petechiae all last week, as well as some bruising and his gums have been bleeding when he brushes his teeth. So 'i am not expecting great things of this mornings test, but I really hope it isn't 4!!!!!

The good thing about the last few months is that when he has had a really low count in the 20s or 10s, it has been followed by a big bounce upwards into the 100s. I amhopin g that this continues to happen this time. He won't get treatment I don't think. Reading all about Caitlin's problems with Rituxan makes me think this might not be a bad thing entirely, although he won't be happy to have his activities restricted until his count goes back up.

Dougie is exactly like that when he goes to sleepovers - stays up all night on the playstation or something and thing conks out at lunch time the next day. Bet she had a great time though!

Ali

Today is also a blood test for Jordan. This coming Thursday would make it four weeks since IVIG. She was at 37 last Monday but I'm not even sure where she is today. Had a good week and doesn't have petechiae but that is not necessarily a good sign for Jordan's counts anyway. She has an extremely busy next two weeks, sure would be nice to not have to treat. Maybe just wishful thinking. Guess I'll just wait and see...

Ali,
Hope Dougie's counts are okay since you already suspect he is low by his signs.
Also, didn't know about the mother's day being different, was interesting to know those little facts.

Michelle,
Good luck with Danica today if the decadron happens. Sounds like she had a really fun weekend too.

Karen
mom to Jordan

Wrong, wrong, wrong, wrong wrong. I lose the bet. Dougie's count was 31, not great but not bad either. He has had a lot of symptoms last week, so maybe it has been low and is on the up again? I hope so.

Karen and Michelle, hope that Danica and Jordan had an ok result

Ali :laugh:

higher than u thought! that is good. Mine was down from a 127,000 to 108,000 and that is with 70 mg of prednisone a day.........grrr!

This is only my 4th week after diagnosis, so i am new to this, but already tired of the roller coaster ride! I know i have a loooong way to go.
It is great to come and be among others with the same problem.....
Glad dougie's are up from what they were.

Well Ali - I am glad that I was wrong about Dougies count. 31 is much better than 4.

Danica was at 77 (I figured around 40). I called one of the nurses and she spoke briefly to Dr. Devaraj. She never even got to tell him Danica's count, but he did say that he wanted to see us today, and that the Decadron would be oral. I guess we will see when we get there - he sometimes has a habit of saying one thing, and then doing the other. This is because he never has a chart on his patients - it is all from memory. He is TOO SMART. Man, I can't even remember what is on my grocery list.

I will let you know what happens today.

Michelle

Glad to hear Dougie's and Danica's counts were not too low! I hope Dougie will bounce right back up and that Danica's counts will soar on the Decadron, minus the side effects! You will have to let us know how that goes just in case Caitlin's hematologist suggests this next.

Caitlin had a super great time at her friend's bday party too! She is bad about staying up all night with sleepovers too and I hate it because I get a cranky girl and then she usually doesn't feel good for a few days. I tell her to "try" to go to bed when she is at a friend's house, but that doesn't always work. Because of this...I try to limit sleepovers to Friday nights so that she can rest up before school on Mondays. She is not allowed to do more than one sleepover in a weekend. When we're on break from school, I do allow it more often.

AHHHH Maaannnn!!! I missed all the guessing fun! Shoot! Well, I'm glad everyone was in a safe range today :silly: Go out and jump on a trampoline and slide down a giant slippy slide! Ali, Tim used to do that alot. He would have so many symptoms and then get a count and be COMPLETELY normal. One New Years Eve he had bruises and petechiea all over his body for no reason. He was in a good remission. I thought he was done for (out of remission. I took him in, but by then the bruises were gone and he had a normal count. I am convinced, as is his pediatrician, that this boy slips and slides around with his counts when he is in "remission". Is really only a partial remission.

As for me guys-I've been the sick one this week, which is why I've not been on quite as much. I had an upper respiratory infection at the beginning of the week, and it faded, and then a stomach virus that is just now fading. And NOW I have a full blown urinary tract infection!!! I haven't eaten for five days because of gastrointeritis and now this! This is how I've spent my spring break (I'm a student). Oh Boy!

Great to hear that Dougie is higher then you both suspected!!! I know it must be so tough for him to limit his activity when he is low!! Are you guys still thinking about asking to do treatments?

Deanna

Hi Deanna,

I am still not at all sure about treating ITP, although I am pretty much decided that we will talk to the consultant about the possibility when we go again next month. Dougie thinks ITP restricts him, but to be honest, we still let him do pretty much everything he did before he got it. He hasn't missed a footie game since October despite his counts being low on occasion (ssshhhh - don't tell his consultant!). And despite reading everything I can find on ITP, I still haven't found a treatment that I could say I was 100% happy with, and my husband is also very dubious about treating it at all. I am very concerned about him starting high school in September with ITP though because he is really adverse to telling anyone he has any sort of problem, so if he still has a low count at that stage, my opinion might change. We are probably just being naive about it, but we are still working on the assumption that it will go away by itself at some stage, so if we put of the decision long enough, maybe we won't have to make it at all!!!!! In the meantime I count us lucky that he has an option not to treat at the moment.

How is Devyn doing at the moment and are you still happy with not treating? I often think of the other kids on this board and wonder how they are doing. Its very strange how you get to think you know someone by chatting like this!

Ali

Well, Jordan was at 27 yesterday. It wasn't totally unexpected, but I always wish for higher. Anyways, its been almost 4 weeks since IVIG, not great but better than when she was first diagnosed. I had a discussion with her new doctor and he's wanting to treat by symptoms more and not counts. But since she has a full week of dance every night starting this weekend, we are going to take another count at the end of the week and she where she is at, then maybe IVIG again. This is her last big event of the year for her school dance team, then she gets a break for a while. Rituxan is still out there for us to think about also...

Karen
mom to Jordan
diagnosed Apr 2009

Hi Ali,

Sorry it`s taken me so long to reply i`ve been without a computer for a bit. Devyn is doing good, he has had the usual brusing and a little bit of petecia that popped up this morning....he goes for a blood test the first week of April, one month from the last one. I have my moments where i feel likr treating my be a good option because at times i`m a little nervous with the watch and wait approach. But for now we have agreed that this is the approach that we will continue with unless he becomes more symptomatic. As every day is different for his platelets....everyday seems to be different for my emotions....

I find myself too wondering how all the kids are from this forum....even though none of us have meet i feel that ITP has connected many of us.....i am so thankful for this site.

I hope Dougie is symptom free these days