back again

hi everyone, liam and i are glad that everyone is ok, liam has been through a bit of a rough time<like everyone else.>
i got a little bit frustrated with his itp and tried to shut it out and not think about it too much,needless to say it hasnt worked,As soon as his heamo realized we hadnt been in to see him we got a very nice but firm phone call!! Iknow we all go through similar feelings,it feels good to be back chatting and seeing what everyone is up to,.Liam sees his haemo on tuesday,im sure his levels are low as he has alot of petichea whith is uncommpn for him.even when his count was at 7 a few weeks ago he didnt have much,,,thankyou and happy easter to all.

You might be surprised yet. Dougie has definitely changed his count/symptom point recently. At first, he didn't get anything at all until he was under 10K. The last month he has had both bruising and petechiae as well as graze like bleeding under the skin. And all with a count that doesn't seem to have gone below 20. I also do the denial thing sometimes - my colleagues at work say that I've got my head in the sand about ITP. And I've had that "polite but firm" call from the hospital - although I've now managed to get them down to diaried 3 month checkups + counts when we think they are necessary.

I hope that you are surprised anyway!!!!! Ali

Well - good that you remembered that you can come here for support.

I know the feeling - sometimes I just want to say 'to heck with it, we will not treat Danica and see where that takes us. Maybe her body will fix itself on it's own'. then I look at what we have been through the past 10 months. 30 separate ivig infusions, 3 tried with winrho and countless months on prednisone -- and we are still in the same place. Yes the ivig is a miracle, i just wish that it would keep her count up longer.

The first round of decadron did wonders while she was on it, but as soon as she stopped taking it, her count plunged.

I have also realized that just when I think that I can predict Danica's counts etc, she will seem to do a 180 and do something different. She would ususally only get the dark circles under her eyes when her count was low, but she just have ivig on thursday, and eyes looked good, and yesterday she looked like crap. However, I just seem to be thinking "it must be the decadron".

Anyway, BOTH OF YOU - when do you get your kids checked?

I know, this sucks, and it is a pain in the rear, but look around you, we have got it pretty good compared to some kids!!!

Happy Easter

Michelle

Oh, Liam 12 - Ijust found out that you are the exact parent that I have been searching for.

Danica just started the Decadron a couple of weeks ago, and I am unsure about it. Please read my threads under 'this is so frustrating'.

Thanks

Michelle - mom to Danica

thankyou for you support,it is very much appreciated,we wnt to see heamo today with no expectations and therefor there was no dissapointment!! thanks again Jenny,