Bloody ITP

Oh my, what a week we have had. Danica finished the Decadron on Sunday night, and since we were booked for IVIg today, we decided to wait until yesterday to do a cbc.

Her count yesterday was 2. I let Ped OP know, and they said that they could not take her because they did not have enough staff today (when we had tentatively booked it, I got the impression that they thought I was crazy thinking she would need IVIg so soon after finishing the Decadron). I thought that was really weird because she clearly showed with the first two doses that as soon as she finishes the meds, her count drops radidly.

I think that they thought that since she was taking it every 2nd day, that it would last longer. I on the other hand thought that her count would not go up very high, as I knew that it would fall on the days that she did not take it.

Anyway, I had to wait for the hospital to call this morning with a bed. We had to go to the Pediatric Ward.

I woke Danica up at 8:10 and still had a few things to finish outside. When I came in at 8:30 she was on the couch dressed and ready to go, but with a box of kleenex and a wad of them under her nose. She was soaking them pretty quick.

She bled a lot on the way to the city, and really bled when we were waiting our turn in admitting. I kept telling her to put her head up, but she wouldn't. I did not want to make her more upset. She passed a really big clot in admitting -- gross!!!

When we got to the ward, Dr. Datta was there. He told her to sit down, and the nurse quickly grabbed her nose and put pressure on it. That helped, and then we got her into a bed with some ice. It slowed down and finally stopped about 1/2 hour later.

Poor kid, her count must have been under 10 for a few days. I guess I know what happens with the "watch and wait" approach.

Michelle,

How awful! It makes you wonder sometimes why bother with the meds at all. But I know it buys them some platelets and helps them very, very slightly...but it does help. Its hard to think its worth it until you see what happened to Danica with her bleed. Just those few thousand platelets per dl do really make a difference.

Hang in there! Has she tried Nplate yet and is she eligible for it yet? We had to wait a long time before Tim's hemonc would consider it-well, five months can seem like a long time anyway.

Really, hang in there! I know a breakthrough is coming for you. It has to.

Michelle,

I can't imagine the frustration you must feel right now. Danica has been through so much in such a short period of time. My thoughts are with you and Danica and I to agree with Donna that a break will come for her, she deserves it!!!

Deanna

Michelle,

So sorry to hear that Danica is having so many problems I have been thinking of you guys lately and wondering how she was doing. Like the other ladies have said, I hope she catches a break soon. Also noticed you guys have Dr. Datta as your ped -- he is ours too. Don't know what we would do without him - he's been our ped ever since our kids were born!! On a side note, Zach was able to go to Europe for 9 days on a trip with the school/community. He is now in Rome. Wish I was there.

Keep your chin up. If you need to talk, feel free to e-mail me.

Take care,
Shelly

How awful - Roger has only ever had two nosebleeds that sound like that, and I found both very scary. The one thing that I've learnt with him is that pinching his nose in the right place, with the right amount of pressure and for the right amount of time are really important - that and an icepack seems to help him. I am sure that Danica knows what to do, but it might be worth getting the hospital to show her again if there is any doubt. Are you any nearer to getting your third opinion yet - it sounds like you could do with it.

We've had a lovely but exhausting weekend. Dougie is on a "bounce" at the moment, and for once his platelets being ok coincided with the weather being good - so we hit the theme park and tried out REAL rollercoasters as oppposed to ITP ones! It was soooooo hot. I've done nothing but drink since I got home yesterday evening, but I still don't think I've managed to rehydrate myself. The kids loved it though, Dougie especially. They went on all the rides - my youngest had a few wobbles where his courage temporarily deserted him but he got on them all eventually! Dougie's knees are really hurting today, but he seems to think it was worth it.

Hope Danica has a good week without anymore drama anyhow.

Ali

Ugh, I'm sorry to hear that! I know what kind of bloody nose you are talking about though...Caitlin used to have them quite frequently and it was gross! So glad it doesn't happen anymore! (Knock on wood!)

I hope she doesn't have to keep on doing IVIG every few weeks! I always wonder if there are any long term effects from IVIG but there are many people with other illnesses that have to do them weekly or monthly so I guess it is ok! Are you still thinking about a splenectomy for Danica? We are going to discuss this with Caitlin's rheumatologist next month and if she approves, then we will schedule it sometime in July or August.

I hope things get better for Danica, especially with summer around the corner. Caitlin usually does very well in the summers with her ITP.

Pauline - I thought that we were ready for splenectomy, but again, it is knawing at us that "once it is out, we cannot put it back in". Also, it is healthy - I figured that it would be huge due to all the platelets that it takes out of her system, but it isn't. I am waiting to hear from a Ped Hemo in Edmonton. I think we will feel much better once we get another point of view.