3rd treatment in 3 weeks - wow

Hi All,
Will try for short story: 12 yr old daughter, Mia, diagnosed in late May with counts at 11. Since then, they've been between 3 (this morning) and 130 (briefly). She's had 2 treatments already. 1st time: IV AntiD 50mg with 60 mg prednizone. Lasted 10 days. She had a cold around day 7. 2nd time: IV AntiD 75 mg with same dose of prednisone. She flew to and from CA, returned last night. This morning she's at 3K with blood and clots in nose (always sign, we are learning of levels in her below 10).

Doctors say come in and they will do Ivig with prednisone. They are lettng her go first to an afternoon movie with her best friend,which feels so so important. I'm not freaking out. I guess I know we need to treat but I also am juggling that with not turning her life into an endless series of hospital visits.

QUESTIONS:
1. Does this protocol synch with what others have done?
2. Is 3 treatments in 3+ weeks normal/too much or just what has to happen sometimes? She's been treated at 11, 6, and now 3.
3. Is NOT treating an option at 3K with some bleeding?

I like our newest doctor very much -- seem to get whomever is on call. We are at the pediatric hematology clinic at MGH in Boston.

I am very grateful for any help here -- and so grateful for this online community.
THANK YOU.
Firkins

Hi

Poor Mia and you. Not good.

Treatments do sometimes seem to lose their efficacy very quickly

For the occasional rescue, it might be worth asking about transexamic acid tablets. Dougie had several nosebleeds over last weekend, ending in one which lasted over an hour on Wednesday and he's just finished a three day course of them. They seem to have done the trick, but you can't take them for long. Its unusual for him to bleed though.

Its good that you've got a doctor you like, and IVIg seems like a sensible next step. It could be that the Winrho wasn't working at all and the rise was all from the steroid - the only thing I wonder about is whether they should try one thing at a time so that they know which one works, rather than two or more?

Ali

Hi Ali,
thanks for your response. Ugh, I am so sorry about Dougie. That is icky. Im glad you got it under control. and I am praying his platelets just start going UP!

The whinro clearly wasn't working -- well, small bumps and then it would plummet. they said the prednisone was not for the platelets but rather a short blast to guard against reactions to the whinro and, last night, the Ivig. She did very well on the ivig -- all vitals stayed very constant all night -- so we are hopeful this might be a better fit for her. She does one blast of the prednisone but does not take it on an ongoing basis. My dad had an autoimmune disease (pehmphigus vulgaris) and the Ivig was the thing that in the end helped him the most. The doctor here at MGH -- Dr. Ebb -- is fabulous and we also see Dr. Alison Friedman who specializes in platelet disorders. We are feeling happy with MGH and always always see an attending and/or get calls back from them. Different than what I hear happens at other hospitals with larger pediatric hematology/oncology departments.

I'm newly intrigued by the link of celiac and autoimmune diseases. Almost all of my relatives have one or another autoimmune disease, and I've long thought Mia might be celiac. Seems to be a connection.

Hope everyone has high platelets!

Be well, Ali -- and I'll be sending prayers for Dougie to stop bleeding and for his platelets to stay up.
best,
Firkins