Nplate

She will go for her screening and physical on Monday and then we will sign the paperwork to get her back on the study. After we sign the consent, the coordinator will send that in and Caitlin should be approved to begin the shots again on the 19th. I am curious about what dose they are going to start her on since she was on the maximum dose when we stopped last December.

She had a 20 minute nosebleed yesterday. I thought it was going to be a difficult one to stop, but a bag of ice on her nose seemed to do the trick, whew! She has some big bruises on her arm so I told her to take it easy for a few days. She is supposed to do a 2-day competition this weekend and then All-Levels (HUGE competition that you have to win a bid to) on the 18th so I am going to have to talk to the coaches about not letting her do her risky stunts. Then she has try-outs for the new season on May 1st. I wish I could beg her to just sit out one season, but I know it isn't going to happen.

Pauline, every time I read your posts about Caitlins cheerleading, I am filled with awe at your enviable cool. How do you manage not to worry yourself to death every practice and competition????? You must be constantly holding your breath.

I've got to be honest and say that I don't worry too much when Dougie plays football, but he has shinpads on and even he has recognised the need to stop heading the ball. Also we don't let him play proper matches if his count is under 10K. He wants to try judo, but (un)luckily the instructor won't take him until his count is better. I breathed a sigh of relief myself when he said this!

I hope that getting the N-Plate goes as well as it did for Caitlin when she first had it and also that the competitions go well.

Ali

It's not easy to sit and watch her...but I've become a lot more calmer as time goes on. She's been doing this since she was 6 years old so she is a very experienced cheerleader. She knows what she is doing and the proper techniques to stay safe. But it doesn't come without risks because it is a team effort. Any moment that someone isn't paying attention leaves a potential for injury. Caitlin busted her lip just a little bit ago durig practice but I just tracked how long it took to stop bleeding rather than panicking about it because it doesn't help me or her of that happens. It took almost 35 minutes to stop. I do alot of praying still when she competes just hoping that noone else kicks her in the face or she lands everything right, etc. I would pull her out in a heartbeat if it was another team because they all know about her disorder and they take care of her. She is one of the few "babies" on the team since almost all of them are in high school.

I'm glad you'll be able to get her back on Nplate. Tim thinks he's still low-new bruises and some minor bleeding.

I hope that isn't the case for Tim! The one thing Nplate is supposed to be doing is stopping more of the symptoms. Is he better now than he was prior to starting Nplate?

Caitlin cracked her molar a few days ago. Last night it was hurting her real bad. I kept getting mad at her because she kept putting her finger in her mouth and I don't want her getting sick. I contacted the hematologist last night and told her I would be making an appointment for today. She said to make sure the dentist contacts the hematologist on call before doing anything and we will probably have to put her on steroids for a few days to get her count up if she needs any major work done. I think she needs to have her tooth pulled. I can see why it is hurting her so bad because it is basically split in half. She doesn't know how she did it and said it has been really hard to eat. I was able to get her appointment at 4:30 today and gave the dentist the hematologist's number in advance so they will know what they can and cannot do since her count is below 20 right now.

I do have some Amicar on hand from her last appointment. Her count last time was either in the 40s or 50s and her gums bled for hours after the extraction so we did give her Amicar every few hours. She was on Nplate at the time, but I guess there is just so much bleeding even for a non-ITPer that it is worse for our kids. My older daughter had surgery last summer on her teeth and it also took her a really long time to stop bleeding as well, but it wasn't as "heavy" as Caitlin's was.

Pauline, That pretty scary (the bleeding). Tim's dentists wont even see him unless he is at least 100k. He has a terrible cavity that has not been able to be taken care of because of his platelets. He had one filled when he had a temporary rise back in September, but the other one needs a root canal and the wisdom tooth extracted to isolate it. His hemonc said, "NO WAY!" Steroids don't do anything for his counts, IVIg gives a small boost for a few days, and Nplate seems to be helping so far, but not high enough yet.

I think all the steroids have made the teeth bad, maybe that is why Caitlin's tooth cracked. I hope she can have it repaired so she doesn't bleed much. I would be freaked out with all that bleeding.

Dougie's grandma just phoned to say that one of his baby teeth has fallen out, and should she be worrying that his gum is still bleeding 15 minutes later. I am thinking not because it sounds fantastic compared to your stories of hours and hours. She is going to phone again in an hour if it is still a problem but I don't think it will be because he has had teeth fall out before this year and it stopped after about 1/2 hour max.

Caitlin and Tims teeth sound painful!!! Does prednisolone really wreck your teeth? The doctors never warn you about that, and I think it might make a difference to any decisions I made.

Ali :huh:

So relieved to say it was nothing, just her adult tooth trying to push her baby molar up and it was slanted in a position that was putting alot of pressure on her gym, causing her discomfort. She doesn't ave any cavities either which is great because we haven't been in over a year for a cleaning. They did suggest extraction because of the discomfort and asked me to bring her in tomorrow after I gave her medicine for her platelet count. I kindly explained that it is a little more complicated and that the meds don't work that fast and then I asked if we could wait for it to come out on it's own and she said it would be fine and could be out in a week or two if Caitlin works as making her tooth looser. So glad we don't have to go through the mess of getting her on steroids, checking her count to make sure it's high enough and all that stuff!

Glad to hear its just a baby tooth being pushed up. Hope it comes out easily and with little bleeding.

Ali, I've read that the steroids can mess up the teeth if taking often or for long periods of time. Tim's had steroids much of his life, from his asthma and now the ITP. Its just much more frequent now (though he hasn't had any since September cause they just don't work).

We had Caitlin's screening appointment this morning to get her back on the drug. They are not positive yet whether Amgen will approve her due to the reticulin that she had, but they don't think it will be a problem. We will start sometime during the week of the 26th because I was looking at my scheduled vacations this summer and if we started next week, it would interfere with one of the trips. They are very strict about us staying on schedule because we sign the consent knowing when our scheduled visits are. We will be back to monthly visits in just a few weeks and I can't wait!

I was suprised to hear this, but they will start her at the dose she was on when she ended the study in December so she will be on the maximum dose to begin with. They will bring her in the next week to make sure her count isn't too high. After that, we will inject weekly again at home. I was surprised to find out that there are still only 20 children on this study around the world on this specific study so I am guessing there are multiple studies going on because I know of a few others doing the drug and they're also on a "study".

And the best news of all...Caitlin's count was up to 21K!!! All on it's own!!

Forgot to add...they saw her tooth and told us to get her to the dentist to get it pulled today. They wanted us to make sure we had Amicar on hand, but neither pharmacy by our house had it. Her tooth was basically hanging so I knew there wouldn't be too much bleeding to worry about so I didn't want to drive to a pharmacy far away just to get some Amicar. The extraction (they still called it that even though it was a hanging tooth, lol) went very well and she has very little bleeding. Caitlin is so happy to have that tooth out because it was really interfering with her eating and talking too!

The dentist was so worried about doing it without the Amicar and called the dr. They told her to tell us to get the Amicar if we could and if we coulnd't, to use the expired Amicar that we have and if it was excessive...to get her back to the hospital. After they numbed her teeth (they use a spray now instead of shots, did you know that...) and gave her some gas (nitrous oxide?), it took them one twist and it was out! I think I could have saved myself $89 bucks, but the hematologist really didn't want to risk infection by Caitlin trying to get it out herself and then us having to deal with the bleeding. Hmmm...I wonder if Caitlin is still expecting a visit from the tooth fairy, lol!

Definitely right about the best news there - 21K! Thats amazing. Really hope that the N-plate is approved for Caitlin and that it works well. Maybe its the weather?

Ali

Nice to hear that Caitlin improved her count on her own. If only it would continue to go up on its own.

Good luck with the N-Plate