Tim at 21k, Nplate started today

We went to his weekly appointment today. We walked in and the hemonc said, "did you see his count last week?! It was 72k!" I said, "yeah" very unexcitedly, lol. Of course, he's always optimistic that Tim will bounce back any time (which he could), but I didn't expect it, and just figured we'd see what we were dealing with today. So, his counts came back at 21k, and so it was decided to start the Nplate. We had to wait for a while for the pharmacy, then after the injection we had to make sure there was no reaction. We go back next week for the second injection. Hopefully he will get some response from this. I know that it might take a while. I know it might not bring up the counts that much or at all, but might keep him from bleeding or keep him stable. Well, as usual, we'll strap ourselves in and ride it out.

Hope everyone is well.

And what a ride you've had!!! I hope he will get a response from the Nplate.

Cathy

I hope Nplate will be a treatment that works for him! I hope he doesn't get any side effects from it. How did Tim handle his first injection since he used to have a phobia of needles? Caitlin was so scared at first then she realized she could barely feel anything. I hope he gets a response at lower doses rather than having to go all the way up to the max.

He has overcome the phobia-interestingly. He went for a walk after his recent very bad experience with IV's last month. He said he thought about it, and that's when he wanted a port. When they said he couldn't get one, he realized that the emla was causing his veins to collapse, and so decided after that no more emla. So, he gets all his IVs and draws cold turkey now. So, the NPlate went well, he said it hurt, but not too much. He doesn't seem to have side effects yet. Did Caitlin have any?

Tim is a lot older than my son, who will be nine in a couple of weeks. How did he get over his needle phobia? My son's is very bad right now -- I guess six and a half years of IVIG and ITP have taken their toll. Did he just get older? More rational?

We're beginning to try guided imagery (relaxation recordings on an iPod), but haven't used them yet. One put him to sleep at bedtime, though, which I suppose is a good sign.

I'll start a thread on this in a couple of days, but since you mentioned it, Donna, I thought I'd ask.

And good luck with the Nplate!

Now that I think about it, I remember Caitlin said that she said it felt like a "sting" because she could feel the meds going through her arm. She did have headaches usually 2 or 3 days after getting her shot, but they were not nearly as bad as the headaches she got from IVIG. The headaches went away quickly once I gave her Tylenol. I had to write down every symptom that she had, plus any meds/dosage that we gave her since we were on the study drug. I don't really remember many of the other symptoms, but I think she had a few occasions where her joints started hurting but that happened maybe only two or three times total in two years. The only thing I really questioned with Nplate that the study coordinator did not really think was related, was that Caitlin seemed to be much more sensitive to the sun. She would get sunburned quickly and they would last for days, which was weird because before...she tanned quickly and if she got a sunburn, it was gone by the time she woke up the next morning. (Always used tons of sunscreen & reapplied it every hour so she "shouldn't" have been getting burned.)

Regarding the needle phobia, its been five years. I guess he just finally learned to deal with it. He decided that he was going to just have to deal with it because every week he was getting draws and infusions, and with the emla it was worse than without it (because the emla made his veins collaps). So, he just one day said he was going to put up with it without a fight. It took five years though. It has been a four month intensive week after week infusion, this time, though, and the fact that he is almost 17 now. I think that helps.

Just wanted to throw in that I think around the third week Mollie had some bone pain in her legs. It only lasted a few days and the doctor said other kids had similar experiences. Though I'd give you a heads up just in case so you don't worry if it happens to you guys!
~Jennifer