Update-Caitlin

We got a full month's break from going to the dr! It was so nice! Got a count today and it dropped a little to 42 so they upped her dose and she goes back next week. Caitlin is doing great though and really loving school and all of her teachers and this is the first year I've heard her say how much she loves school! (She's always liked it, but it was just something she had to do...not something she looked forward to everyday!) At first, I got a little suspicious and thought maybe there was some boy that liked her and then she said she wasn't quite there yet and isn't interested in going on her first date anytime soon...whew! Cheerleading is going good, but it is getting harder for her to juggle being on two teams so I'm trying to convince her to just do one team. My older daughter decided to go back to cheer so she is on the other team that Caitlin decided to do so it really isn't more "time" from me as far as driving, but I worry about Caitlin taking on too much sometimes! (She also wants to audition for different school plays this year.)

Anyways, hope all is going great with your kids!

So nice that Caitlin's off to a roaring start! Isn't it wonderful when they love school??! And isn't it even MORE wonderful when they postpone the 'boy' thing a few years... months...ok, at least til the week before the first dance!

What--You're the only one with wheels in the family? Divide and conquer those long hours of driving...and cooling your heels! And congratulate your daughter on gaining enough platelets to 'skip a month'! Enjoy! Ann, the other Caitlin's Mom

Pauline,

Glad to hear Caitlin got a little break from Dr visits and that all is going well. I am curious to know if you started Caitlin on the Plaquinel yet? My daughter Jordan has some antibody issues, along with her ITP and low WBC's and was diagnosed with Sjogrens syndrome. After trying Imuran, her rheumatologist wants to put her on Plaquinel, along with Dapsone, which she already tried by the way and it did nothing for her. Just wondering how Caitlin was doing on it if you started it yet?

Karen
mom to Jordan

A whole month is brilliant! And 42 isn't bad, so hopefully the next dose up should work - just hope she doesn't get those huge bounces in the other direction again eh!

Ali

Karen-Caitlin hasn't been put on the plaquenil. I think the reason for that is because we haven't seen the dr since we saw the opthomologist to do a baseline test. We won't see the hematologist the first week of October. (Many times we just go to the clinic for labs and then see the study coordinator who is also a nurse and she gives the injections.) We also see the rheumatologist in mid Oct. so I have a feeling that the hema will wait for the rheumy to fill the prescription.

I am sorry to hear that Jordan was diagnosed with Sjogrens. Does she feel bad at all? Caitlin has started complaining about some aches and pains a little lately but I "try" to chalk it off as strain from cheer. She mostly complains about her wrists, heels, and ankles hurting and they hurt more when she's tired. And headaches (not migraines lately)...if only those could disappear completely, I would be a happy mom!

Ali...will find out tomorrow if she's headed in the other direction, but I really don't think she will be. I think it will be in the 70s to 90s, but not over 100.

Ann...lol, you always make me laugh with your comments! No, I'm not the only one with wheels, but my husband has a job that requires him to drive all day long so I "volunteer" to be the cab driver of the evenings! In return, he helps me with the laundry and other things around the house.

Anyways, good news...I was wrong with my prediction of her count. It went up to 126 so we have two weeks to do at home before we go back in October! It is amazing to see the changes in her count responding to Nplate this time around (post Rituxan). I added that in because I truly feel like Rituxan is part of the reason for her success on such a small dose. The dr was going to do a repeat bone marrow test at the end of the summer, but I think they are going to hold off since she is doing so well. We will get a full work-up next time so hopefully we will see her wbc increase as well.

Pauline,
Thanks for the info about Caitlin and the Plaquinel. And glad to hear she is doing so well. Jordan just saw the rheumatologist and now he is recommending Cellcept. I just want to hold off until the 2nd opinion next week. She doesn't have any real problems from the Sjogrens yet, the blocked salivary gland is cleared up too. She is having alot of fun in tennis at the moment too.

Karen
mom to Jordan