Crappy count today

How can this be? Danica lost 152K in the past three days.

I was bugging her yesterday because she was cleaning like there was no tomorrow!! I don't know why, but when her counts are low, she likes to clean - and I mean clean.

I thought that the house looked fine yesterday, but she ended up tearing it apart. She moved all the chairs and washed the floor, and took stuff off of most of the shelves to dust.

Jokingly, I said "your platelets must be low, because you are cleaning so much". Who would have thought that they REALLY were low.

Her count today was only 16. I almost fell over when my co-worker showed me her results. I contacted Pediatric Outpatients, and they contacted Dr. Devaraj. He ordered IVIg for tomorrow.

Man, that whole week of feeling like crap to get her count up, and this is what we get as soon as she stops the Decadron.

Dr. D. did say that it could take three weeks to to work, but it sure seemed like it worked right away. However, obviously, as soon as she stopped taking the Decadron, her spleen started taking the platelets out again.

Ali - I am interested to see how Dougie makes out.


Donna - how is Tim doing?

Pauline - how is Caitlin making out?

ddunn - how are things going with you?

Michelle

Thanks for asking, Michelle!

I got all the records faxed to Gainesville today for a second opinion......I should hear tomorrow if he is going to see me.

I go to my regular hemo, dr. anju vasudevan tomorrow to discuss more options....and understand the rituxan a little better, because i didnt ask questions i was so dumbfounded. but i cancelled the treatment for tomorrow..
I am getting ready to go to bed soon, i have been up for two nights with no sleep!!! I just took a sleeping pill.

How are you doing, Michelle?

How is everyone else doing? Check in!!!!
Denise

Could I swap Danica for Dougie please? I really wish that Dougie started cleaning when he has low counts!!!! Someone needs to do the housework in our family!

Seriously, I am sorry but not completely surprised about DAnica's count - that seems to replicate some of the other experiences I have read. It must be very disappointing for both of you. Well, I suppose that you at least know that you have tried it and it doesn't really work for her. Its good to try the less permanent stuff first before you get into anything serious.

Dougs is still covered in bruises and petechiae. I think his count must be down, but am resisting the urge to take him for a new count till the symptoms disappear - all it would prove is that his count is low right? I am hoping the symptoms disappear quick becuase now he has the idea of going to Alton Towers he is obsessed with it, and will be disappointed if he can't get there. Easter hols next week - yippee!!!

Chin up, Ali

Michelle,

Sorry about Danica. That's so discouraging, but its interesting how they each have their indicators. I wish Tim would clean. They boy won't budge on anything. I asked him to do some dishes the other day and he said, "I don't wash dishes". I about fell over in exasperation. I said, "Then you don't cook, either." He loves to cook his own food and make a huge mess doing it. His counts are good, and he is doing school work, which is amazing. He is pretty grumpy though, not sure why. Maybe he feels he's not getting enough attention. His asthma is acting up too (that's one of his indicators), but the Nplate seems to be holding him for now. We're hoping to get him stable enough for dental work soon (fingers, toes, and heart crossed).

Ali, sorry about Dougie. I can see that if you aren't going to treat anyway, there is no use getting a count unless he has a scheduled activity or if its a regular appointment/checkup. Why stick him, right? My son's grandma says that stress makes her ITP worse, so why stress him?

Michelle I hope that the IVIg gives you a break and that maybe Danica can get some more stable counts soon.

Denise, how is the Rituxan going for Caitlin? Is she responding at all? I know she's having side effects. Are they getting any better? Its supposed to get better with each infusion.

How disappointing! I was hoping the Decadron would continue to keep her count up! Will you use this again if the dr suggests it based on her symptoms and this drop?

Caitlin is doing ok. She's had an ongoing headache for 3 days now, but I really don't think it's ITP related. She's always had headaches but they get severe sometimes and sometimes they turn into migraines and she starts throwing up. That happened two days ago so I just have to keep her in a dark room and make sure noone bothers her until she feels better. She has no bruising or petechaie so I really do think she may be going into remission...at least I hope so!! She has a full schedule from now until the end of April with school and cheer stuff so I hope she has the energy to do everything.

I hope Dougie's symptoms go away soon! When I was doing the "wait and see" approach with Caitlin, we had many instances where we would see LOTS of symptoms and just wait it out because we knew the dr wasn't going to treat her based on his philosophy. Sometimes, she'd have a whole mouthful of wet purpura (looks like petechaie the size of an eraser at the end of a pencil) one day, but then they'd be gone two or three days later. Caitlin hated it though because we were checking her so much more often when she wasn't being treated then when she is being treated.

Michelle,

So sorry to hear about Danica's big drop. I was hoping she'd be able to hold onto the majority of those platelets when she stopped taking the meds. Zach started his Pred this week so that he will be able to get his wisdom teeth out on Friday. His count was actually really good last week -- they were at 115. I wasn't really surprised though, because he has been sick on and off for the past month or so, and his count always goes up when he's sick!! Hope things turn around soon for Danica; so hard to watch your kids go through all this.

Take care,
Shelly

Pauline,

Its taken me months to realise that Dougie has wet purpura sometimes. He kept saying that he had blisters in his mouth, but I figured that he just had a normal ulcer. It wasn't until about a month or so ago when his gums were bleeding a lot brushing his teeth that I looked - just as you describe them!

I am not "inspecting" him every day but I agree, its difficult not to and just like Caitlin, Dougs really hates it when I do. To be honest though, the bruising is so obvious at the moment that he just has to come down in the morning with a t shirt or a a pair of pyjama shorts on and I don't actually need to annoy him. And he is feeling very tired at the moment which has been a pretty good indicator of his count for the last few months. He is especially happy at the moment though because the weather has been good, so the kids at school are allowed to play on the field rather than the tarmac, which in turn means that he can join in football :silly:. Its nice for him not to feel excluded from what the other lads in his class are doing I think. We've also started letting him go round his friends house (about a mile and a half away) on his bike as long as he promises to wear his helmet all the time, which he loves.

Hope Caitlin's headache is better and that her count really is improving, especially after the horrible experience she had with the rituxan. When does she next get tested? I feel so lucky that we don't need to treat Dougie currently, especially after reading about Caitlin and Danica, partly because I don't think that he would react at all well if treatment made him feel even slightly ill - I think the girls must be so mature to deal with this.

All the best for her next test anyway, Ali

Hey Ladies - nice to hear from all of you.

I do wish that everyone had good news.

Danica had IVIg today, and we are kind of at a loss as to how to arrange IVIg before the next Decadron. I do know that Dr. D. does not want her count low when she starts her next round. I know that he originally wanted her to be between 20 and 30 when she started, but that was hard to do, so he was okay with her being at 77 the day we started.

The nurses as Ped OP and I will send him an email with a bunch of questions about when we should give her next IVIg (it is difficult to schedule due to Easter coming up, and trying to work around days that are not as busy for them). We have tentatively booked the 1st of April (but we don't think that her count will be low enough). The next day would be April 8, which is a little long AND it is only 4 days before she starts the next round of Decadron, meaning that she will have a count of over 100 when she starts.

Perhaps he will decide to give her IVIg on the 1st, and then maybe start the Decadron a few days earlier, so that her count is not too low.

There is also the possibility that the last round of Decadron could still kick in, and her count will improve over the next few weeks. We will just have to take it one day at a time, and see what happens.

I hope that Caitlin starts to feel better soon. Do you think that the headaches are from the Rituxan? If not, maybe she has migraines (that is all you need, isn't it?)

Keep me posted, all you guys, you are in my thoughts often, and in my prayers.

Michelle