I don't know what to think!

Caitlin went back on Nplate two weeks ago, starting at the maximum dose. Last week, her count was 402 so she was not able to get her shot last week. So, we assumed for sure that her count would drop this week. We were wrong!! Her count this morning is at 674!!! Now they go from in 3 weeks worth: 10, 402, 674! They went ahead and ordered a cbc and they're going to check her blood smear just to make sure nothing looks funny. We go back again next week and I have no idea what to expect now! Weird feeling!!

Wow! I hope she is making a recovery!

Very strange, but I hope that she is enjoying every minute! Keeping my fingers crossed for you,

Ali

You know what I think? She's responded to the Rituxan. Its not been that long since she had it. I've read that it can take up to nine months to work. Hope that's the case for Caitlin. Could you imagine her being able to compete without restrictions this year?!

I was thinking the same thing. Could it be the Rituxan??? What does her doctor think??

Karen
mom to Jordan

Pauline,

That's amazing!!! I hope this is a turning point for Caitlin.

Cathy (Mom to Wesley 10 - diagnosed 4/2002)

The doctor's response last week when it was 402 was that maybe it was a late response to the Rituximab. We will see if her numbers drop or start to settle down. Apparently, having high platelets isn't very good. We've been told to watch for "stroke-like" symptoms which include numbness & tingling (she's had this for two weeks now), severe headache, difficulty talking, difficulty walking, etc. Because all of her platelets are brand new and larger than normal platelets, having a high count can cause clotting. It is rare in children though. I just don't like it when Caitlin tells me she's having tingling in both arms and every once in a while feels like she is going to black out. The doctor said that it would be constant tingling and she would continue to feel worse rather than a "come and go" thing. Her study coordinator seems to think that she still has Nplate in her body because she was given the maximum dose and maybe it was just too much at once.

Personally...my theory...she did have Rituximab in Feb/March. That depletes her B-cells which are responsible for tagging the platelets and then the spleen destroys them. Without the B-cells present and more platelets being made due to Nplate, her spleen is just overwhelmed and can't kill off that many at once. Almost makes me wonder if her spleen is just too tired and may not be working like it usually is. May be a dumb theory, but it would make sense to me as to why her counts were so high these last two weeks. Or...(praying) it COULD be the beginning of remission for her. That would be so awesome!!

If she has Rituxin in Feb/March, it certainly is reasonable that it is working now. It was a good 2 months after the last dose of Rituxan before we saw a sustained increase in counts.

WHOA! :woohoo: Think REMISSION, Pauline!!! Looks like you're on a rocket ride, Ms. Caitlin! This is the first time anyone has taken the 'to infinity and beyond' thing quite so LITERALLY! Here's hoping for major quantities of STAYING power for about half of those platelets--now, settle down! Ann, Caitlin's (23) Mom

You know what? I looked at the calendar and Monday was exactly 2 months to the last day of her Rituximab infusion so maybe it is the Rituximab. Did Isaac not have any kind of response for 2 months?

Ann...I am truly hoping for remission! And your reply made me smile so thanks for that!

He bounced around for a good long while... They went up at first, then came back down. Occasionally there are still drops, but not to treatment levels. I haven't had him tested since last May (holy cow!). I may call and get a count done soon, just as a 1 year count, but also because I am seeing a bunch of bruises on his legs that could be normal bruises, but they kind of freak me out. Below are his counts. I commented when anything was out of the ordinary as he seemed to get an increase in platelet count any time he was sick. I sure hope this is Caitlin's remission!

9/25/2006 48 Rituxan
10/2/2006 148 Rituxan
10/9/2006 130 Rituxan
10/16/2006 91 Rituxan
10/30/2006 57
11/13/2006 112 Just ended amox for 10 days
11/27/2006 27
12/13/2006 226
1/2/2007 385
1/26/2007 59
2/13/2007 235
3/20/2007 186
4/20/2007 48
5/10/2007 110
5/20/2007 123 strep throat, amox
6/20/2007 113
7/25/2007 95
9/5/2007 68
10/3/2007 75
10/25/2007 119
12/12/2007 238 cold
2/14/2008 140
5/1/2008 171
8/21/2008 125
2/26/2009 247
5/27/2009 256

Caitlin is back down again, which is really a good thing. They said if her count remained high this week, they would put her on a daily dose of low dose aspirin. Her count dropped to 65 so they are giving her an injection at a reduced dose. We have to go back again next week and if it isn't too high, I will start giving her the shot at home. Looking forward to that with summer coming up. We just have 13 days of school left. Can't wait!

I'm glad Caitlin's count is back down to a more reasonable level - I know those high counts were worrisome for you!

That's amazing that you only have 13 days of school left. Our kids are counting down the days, but they go until June 24 this year (thanks to the historic blizzard this year). I feel like they've already checked out, though - AP exams are over, warm weather is here and it just feels like school should be over. We go back after Labor Day - how about where you are?

Continued good luck to Caitlin with the NPlate!

Beth - mom to Brady (age 13, diagnosed 1/18/02)

Right now, we go back about 2 weeks before Labor Day, but they are talking about changing our calendar to where we start after Labor Day.

We are definitely relieved about being back with where she "should" be with Nplate, but it took two weeks of no injections to get back down. My worry now is that her count will shoot right back up since they only went down one dose from the last time. If it does happen like this again, I hope they will realize they need to go back to the starting dose of Nplate and let her work her way up, or at least let her get back down to the halfway mark and slowly go back up if she needs to increase her dose.

We are truly looking forward to this summer. We've got a cruise to go on in about 4 weeks with my parents and all my brothers and sisters & their spouses & kids. (I'm nervous because I've never gone on one and I'm worried about getting sick since I get motion sickness VERY easily.) Then we have another week long trip planned to Florida with friends and we will do that as long as the oil spill doesn't go up that way.

Pauline,

Did you ever think the day would come that you would wish her platelets would go DOWN?! Wow...I hope they level off to a safe number...say 150k?

Pauline, ask your doctor about the Transderm Scop (scopoline) patches. I'm the person who stands at the bottom of all the amusement park rides and holds the purses :silly: and the school bus driver always saved me a front row seat because he said no one could get as green as me :blink: My first cruise I didn't start using it until I had symptoms. Now I just put it on as I'm boarding and wear it until I get off. I take along some adhesive bandages also, just in case I sweat a little and it come loose.

My sister gets the Acupressure Anti-Nausea Wrist Banda (brand names include Seaband, bioband, etc) and wears them even to fly. You can find them in marine stores and the larger drug stores. If you look around you can find some that are adjustable with velcro since extended use of the elastic type bands can cause swelling.

Wow - this is such great news for Caitlin. I truly hope that she does enter into remission. With how busy she is, and how horrible she has felt through all of this, she certainly is well overdue for a break.

I am so excited to see that she has such great numbers.

Who would have imagined, Tim and Caitlin -- both with good reports. But now, it seems that poor Dougie is the one struggling with bruising and low counts. Hopefully things will go back up for him as well.

Hey Michelle, less of the "poor Dougie"!!!!!

He's fine - covered in petechiae and bruises but otherwise fine! It will probably bounce upwards again soon, and although his bounces don't seem to be as high as they were, they take him back to safe levels for most of the time. To be honest his knees are bothering him more from this arthritis thing at the moment than ITP is. He is really stiff sometimes. He walks down the stairs in the morning like a little old man. I phoned his teacher this morning, and she has talked to him about it and agreed some things to make it easier for him - sitting on a chair in assembly rather than on the floor for example. He also said this evening that he wants to take some painkillers into the school office so that he can have some at lunchtime - it must be hurting for him to say that!

I am very nervous about this diagnosis of post viral arthritis. I think it is because it sounds very like ITP - comes after a virus, lasts less than 6 months generally, 9 out of 10 people recover etc, etc. I've heard it before and it didn't turn out quite like that!!!!! Got to keep thinking positive things about this now too - I am going to be worn out thinking optimistic things!

Hows Danica looking anyway?

Ali

Ali,
That darned roller coaster never stops, does it?! :side: