counts down

Count were 147 2 weeks ago. Went and had cbc done today and down to 19. The doctors say fine to go to school but no gym activities. should i be sending her to school

Some people do seem to keep their kids off school when their counts are low. Speaking personally however, my son has only missed school due to doctors appointments - he's gone even in the weeks where his count was 1. His counts are generally between 5-15, so if I kept him off school for low counts, he would be very uneducated! He does most PE too.

As long as the school knows about her ITP and when to call you, she should be fine

so i have sent her to school, spoke to the teachers and all the rest of the staff that has anything to do with her. Today she comes home and tells me that the gym teacher mad her do gym class after i brought in a doctors note saying that she could not do gym class. how much more do they need to know

That is really BAD!

I had some initial difficulties with my son's PE teacher, but I have a good arrangement now whereby he emails me to let me know what the PE choices are for that 1/2 term and I choose what Dougie does. Dougie swaps between groups according to what he can do - so if the A group are doing rugby and the B group are doing table tennis, Dougie temporarily switches to the B group. Its not perfect, but he gets to join in all the lessons somehow.

Hope you work something out for her

Ali

I could understand if i didn't bring in the doctors note, all i get out of the gym teacher is she is fine look at her she has nothing wrong with her its all in my head. Even when she has the doctors note in hand.

went for a cbc yesterday so we are up to 24000 so hopefully they keep riseing

back to 19000

When you look at the number just by itself, that looks disappointing, but in real terms, it probably means that Brianna is stable at the moment. Any sample is going to be subject to a bit of testing error and normal people have those ups and downs too. It might be helpful to look at the trend rather than movement from one test to the next? Unless Brianna bleeds a lot, 19 is quite a reasonable count too.

I hope that the next one is better again though!

Ali

I'm hoping now this is where she levels off. its just the worry i find every week that she is going to bottom out again. I don't think she would be able to handle the ivig again after the last time

Dawn, what happened when Brianna bottomed out? Did she have any worrying bleeding? My son has lived with counts mostly under 15, sometimes under 5 for the last 18 months. Nothing extraordinarily bad happens when his count goes down other than getting a few more bruises, lots of spots, and the occasional nosebleed that eventually stops. The point that I am trying to make (probably badly) is that its not very productive to worry about something that a) might not happen, and b) is unlikely to be awful if it does happen. If Brianna bottoms out again, you will manage and so will she - its a nuisance and a pain, but you can cope with it. Don't waste time and effort on worrying in the meantime.

Sorry if this sounds like a lecture!

Alison

when she bottoms out she bleeds out through the pours in her skin. she will end up with a bruise and if you touch it it will bleed.

But it nice to hear that she can be normal with a low count. she is always thinking that if she falls we will be back to the janeway.

I finnally let her out of the bubble and just told her to go play she has been out for the last three hours and i'm just leaving her alone if she needs me she will let me know

hi dawn,
sorry about brianna's low numbers and how she bleeds out (not sure how to describe it) when her numbers are low. there are some many experienced and wise people on this site, i know they'll have insight on that.

i just wanted to say something about the gym class. my frustration with gym actually runs the other way -- the teacher doesn't let Mia participate even when her numbers are, say, above 30 and we want her too. (Her dad and I really want life to be as normal as possible and her not to be afraid of being active when she doesn't have to be....esp as she is physically a little reticent to begin with..)

Anyway: our school does the best job they can. ITP is new to them, they have a lot of kids with different needs to look out for, and their goal is to keep them all as engaged as possible but safe. I get it's hard for them to follow her numbers as I do. So i am okay when they err on side of being conservative but I would NOT be okay with them making her do gym activities when numbers are low. Can you talk to gym teacher? Principal? That's just not okay. (I say this as a former teacher, school administrator, and now town School Committee member). Hope you can get some quick resolution to that.

Back to the hemo today now her counts are at 5000 and not even a sign besides a few bruies

Dawn, glad there aren't any signs despite the low numbers. Are you treating or just going to watch and see? keep usposted. Good luck!

no treatment she has two hematologists they do two wks on two wks off in there clinic where we see them. The one we saw this week doesn't treat unless she is bleeding she like to wait and see. They other treats when she has been under 5 for more then 2 wks

the wait and see, seems to be working this time with Bri her counts are up to 52000 today and they were only 9000 last wednessday

great news on her numbers! glad for you and Brianna.

Wondering, Dawn, how long she has had ITP and if you've done any treatments at all? We are also not treating (with traditional medical treatments right now so just curious)

may they stay high!

dawn -- oops, just read your profile so I have the overview -- has she been treated at all? (just wondering if you don't mind...)

BTW, our oldest went to St. John this winter on a basketball exchange between our school and one there -- we live in Massachusetts. She had a blast! Great kids and families...

We are back under 15000 but not a sign. Not a bruise, being tried, complaining about her stomach paining nothing. So maybe she is at her happy medium. She hasn't stopped all weekend. she fell off her bike cut her leg and it only bleed for a couple of mins. So happy day all she cares is that she can go to sports day at school :lol:

dawn, I'm glad she is feeling good and full of energy. Also really glad to hear that when she took a spill she didn't bleed for long. That must feel very reassuring. Mia is also hovering around 16-20K for now. I'm gettingmuch more used to it. Ali has been such an enormous help -- as have so many others on this website. Hang in there and keep us updated.

Best, firkins

So we started on prednisone last week counts were up to 116000 on Friday . But she is some moody cann't wait to go back on Wednesday . But have to say today is the first day in the last 2 weeks she has slept. I don't know if that's a good thing or not.