Timothy

He's at 54k today. He also requested a counselor, which is quite a change for him, since his whole life he's told me he would NOT see one. This is one area in our health care system that does need improvement. Psychologists are extremely expensive and most do not accept insurance up front. You usually have to pay them out of pocket and they reimburse (yeah right). So, this might be quite difficult. I'm going to see if there are any services through his hemonc's office.

Wow, thats a big decision he has made, it is good though that he has recognised that he needs someone to talk to, 54 is not too bad, 50 is where they want them to be on nplate isn't it?? I am only at 19 as of last weeks blood count, hopefully tomorrow they will have gone up. Hope u find a good and not too expensive pyschologist for him to see, good luck with it all.

Yeah, my understanding is 50k. Interestingly they upped the Nplate today from 200mcg to 300 mcg. I guess they must have felt he was on a trend since he had come down from 68k, 62k and now 54k. IDK, I was surprised that they increased the dose, but I do trust his hemonc.

It is a big decision for Tim. They set him up with a counselor, but I was reading the brochure and she uses psychotherapy and family counseling techniques, which really aren't the most "empirically validated therapies", meaning they aren't proven to be the most effective. I'm looking into finding someone who does cognitive behavioral therapy instead.

I think Tim is close to what Caitlin's maximum dose is since they go by weight and I believe 350 mcg was her max. I will find out tomorrow since she starts back up again then. What is the liquid measure on the stringe for Tim? Sounds like he is either at .4 mcg or .5 mcg now.

I am surprised that they upped his dose. In my opinion, they could have waited another week for him to drop below 50. Caitlin never got her dose upped even if she was exactly at 50 and she also did that trend where she'd be on for a few weeks at a dose and then dropped. We were only going on a monthly basis though so we never saw if she had drops in between. Personally, I think the fewer the blood draws, the less traumatic it is for the kids. Caitlin hated it when she had to go on a weekly basis, but she tolerated it.

I saw on another post that Tim was having some emotional problems. Have you tried to figure out if they are related to constantly having to go to the dr? The last year has probably been hard on him, especially when he was having all those bleeding symptoms. If all the drs visits are somewhat impacting his emotional issues, would it be possible just to go in for the injections only and do the blood draws less frequently? (Since you mentioned at one time that he isn't good about taking his meds.)

Do you have Tim involved in any social activities since he is homeschooled? One of the things that our district does for our homebound kids is makes sure that they find a way to get out at least once a week. They meet to go to the movies at least once a month, sometimes they go to the nearby park and play golf or frisbee, etc. It keeps them from being isolated and gives them a chance to meet friends who are homebound like them. Many times the homebound kids make friends and will go to each others' houses for certain lessons. This is mostly for the kids who are physically capable and who do not have too low of an immune system. They have separate activities for kids battle cancer. We also have a huge homeschool association where we live and I know they meet at the recreation center once a week to take extra classes that they wouldn't be able to learn at home. Another idea would be to check out the community college close to home and see if they have any programs that they offer for high schoolers to take and get college credit at the same time.

Pauline,
Tim has always had some emotional-behavioral problems, and I've learned how to avoid his triggers for the most part. But he has a very low stress threshold, and I know that since he flared again with the ITP, he has gotten worse.
The school district here stinks (Charlotte-Mecklenburg) and even to get him a homebound tutor was nearly impossible. They say they don't have the budget for it. I had to threaten them to get it started. It took over a month before they finally got him a teacher (after classes started). Then a week later his teacher quit and it was another three weeks before I was able to get another one. They claimed they might not be able to, and I told them they had better because he had a right to a free public education and that he was being denied his rights under the american's with disabilities act. The next day we had a teacher (she's very good too). They provide no services for homebound students nor do they care. In fact my other son has an IEP, and I had to fight tooth and nail to get accomidations for him. Then two months later I wrote one of his teachers that was not accomidating him and he said he didn't even know he had an IEP! The EC department is not doing their job.

I am looking for a counselor for Tim because he actually asked for one (go figure). He's always said he would NEVER see one though its been needed for years. Now to find one that accepts medicaid...oh boy.

As far as the weekly blood draws, they will not give him the injection without the draw. Tim doesn't seem to mind it so much anymore. He's come a long way.

Oh donna - I am so sorry to read all of this. I have not checked this site for over a week, so forgive me.

Does it NEVER end for you?

my thoughts are certainly with you. I hope Tim feels better.

Michelle, I'm sure you've got quite a lot on your plate right now. Thanks for even caring. I'm doing this by myself, that is, raising my kids, two of them disabled, so not many people really understand or even care. At least I'm healthy enough to take care of them. My oldest son, Josiah is now in a major MS flare and I can't get an appointment with his neurologist. They said the earliest was May 7 with the nurse practitioner, and to see the neuro would be AUGUST! That's not acceptable. If they don't call tomorrow morning, I will be taking my son to the office and making a surprise visit. That is what I did last time, and they saw him. I'll do it again.

You go girl! I am sure that you have had many experiences with doctors and hospitals, and have decided that "the squeaky wheel gets the grease". Good for you.

They called this morning and we have an appointment for Friday. Its a good thing (for them)lol.