Timothy Update

First: His counts today-172k! He is at 5mcs per kilo, half what is allowed. Next, his counselor thinks he is bipolar, which he and I both do not think he is. He does not have manic epidodes, so he does not fit the bipolar dx in that way. He also thinks he could be major depressive disorder, which is possible, though I think its more likely he just has episodic depression-the kid has been through alot! So, he has been referred to a psychiatrist. We saw someone today, though it was not a psychiatrist but rather a group that is able to manage meds (not sure how that works). They will discuss his case with their team and let us know what they recommend.

That's our update.

Hi Donna

N-Plate seems to have an awful lot of variability in the counts it produces - I guess it is good that it consistently produces "safe" counts for Tim though, even though some seem a lot more safe than others! I hope for more stability for Tim in the next few weeks and months.

It is also good that you have managed to get someone to see Tim about his other problems and that they are referring him on. My nephew started having significant mental health issues last year and he is still having big problems in getting any treatment - most of this is due to the fact that he won't ask for or accept help. Even when he gets help he refuses to comply with most of his treatment. So I think that it is brilliant that Tim is prepared to ask for this help. I hope that the psychiatrist is prepared for Tim - Tim sounds like a real character and like he might give the psychiatrist a good run for his money!!

Ali

I am chuckling -- I have to agree iwth Ali - I think Tim would give anyone a run for their money.

Danica has been really up and down this week. She was okay on Monday when she took two doses of Decadron, but Tuesday was a total flop. It seems to be repeating in that manner - she is alright the days she takes it, but really in pain and irritable and sweating on the off days. After today, only Sunday left.

We are still waiting to hear from Edmonton.

I am sure glad that the NPlate has given Tim some platelets. Man, I NEVER thought that boy would go above 10. This is so amazing.

How about side effects Donna?

Ali,
I think the main thing Tim needs is to talk. They seem to think he has some major disorder but I think he is just upset with all the changes we've had in the last year and his health problems and trauma. He agrees. And yes, I think he could give them a run for their money...he sure has given me a run. Michelle, you're right on about compliance too. I think if they ask him to take any oral meds it could be a problem. He hates taking medicine on a schedule. That might be an issue. The good news for your nephew is that he could come to a point where he will ask for help. Tim has needed intervention for years but has refused. Now he has come to a point of knowing he needs it and has asked for it himself. Its because he has a close friend that sees a psychologist/psychiatrist, and it has become okay in his eyes. So, there is hope.

Sorry about Danica's problems with the medicine. Its so hard to cope with side affects. Tim complains sometimes of feeling weird, some nausea and sometimes dizziness. I wonder sometimes if his mental issues might be related, but probably not. But overall it seems to be pretty minimal with the Nplate. He is at the halfway point with his allowable dose.

Ali, how is Dougie doing?

Donna - when is Tim finished with the NPlate? Is there a "maintenance dose" that can be given, or do you just stop when it is time? I fear what might come of his count once he is not on it anymore?

What is the mechanism on the NPlate? i.e. how does it work to increase platelets?

Michelle,

Nplate is a man made protein that stimulates platelet production in the bone marrow. Its not intended to be used long term because it can cause changes in the bone marrow-that is, fibrosis. Its not known whether the changes are permanent or not, but its possible that they are and that they could be life threatening if they lead to fibrosis. So the goal is short term therapy that just gets them through a short term crisis. Problem is we all know Tim and many of our kids are not really on a short term ride with their ITP. So we have to monitor their bone marrow to make sure their are no changes that indicate possible fibrosis (like Caitlin had). If so we have to take them off for a while to give them a break from it. In the meantime I hope we find a better answer for them. I talked to Tim's hemonc on Friday about genetic testing for him and his aunt and grandma to look into some possible answers. They need to start looking for the reasons for this familial link. Maybe it will help find the answers. He agreed to contact a geneticist.

Donna - I am little confused now.

Has Tim ever had a bone marrow aspiration? If so, when?

Danica had one last July, and it showed that her body was producing platelets. In fact, increased platelet production was noted, which is typical in ITP as the body is trying to keep the right amount of platlets in her system. Her problem is that she just can't keep them IN her body. Her pediatrician spoke about Eltromobag, but to me, it did not seem like a likely answer as it does the same thing as the NPlate - it increases platelet production. To me, it would be like running the tap water faster - no matter how much water comes out of the tap, it is still going to go down the drain.

I am glad to hear that you are pursuing the familial link. Perhaps they will be an answer there for you.

Good luck

Michelle,

It is like running the tap water faster. The problem is that when the body starts destroying the platelets, the theory is that the bone marrow "poops out" so to speak. That is, it can't keep up and sort of gets tired. So it become both a platelet destruction and a platelet production problem. So Nplate helps the body overcome the destruction by running the water faster than the body can destroy the platelets. That's why the risk of fibrosis exists and why the watch out for it. Thankfully if they watch for it and catch it its reversible.

As far as tim and a BMA, he has never had one. The hemonc says that his very limited response to IVIg is evidence enough that his bone marrow is producing some platelets, so its not necessary.

Michelle-Donna is right on how she described Nplate. It is really a good treatment for those who are bleeders or those who are truly limited due to ITP. It is by far, the easiest treatment. Yes, it is scary...and I have no idea what the long-term effects are, but I have to look at what is happening now and pray that there are no ill-effects later. For Caitlin, it is our "safety net" because she really doesn't care about what her count is and when she needs to be more careful. She feels great so she's going to do whatever she feels like doing, and that is how she has always been. I realized a long time ago that I was the one who would have to be in control of her ITP, not her. I hope VERY soon, she will start taking control, but I don't think the "daredevil" inside her will ever let go unless she begins to feel sick inside.

Donna...looks like Tim is riding the roller coaster, just like Caitlin is! I wish we didn't have to ride this journey, but I'm so glad the symptoms are minimum or next to nothing compared to all the other treatments! I also hope counseling works for him and that the drs will find something that helps him feel better. (Easier said than done, I know...did an internship at a psychiatric hospital in college thinking that I wanted to do this and realized I didn't. Started questioning my own mental sanity there, lol!)

Pauline,
Yeah, its interesting that I'm a psychology major and that after I get my BA in psych (soon) I am considering my PsyD in Psychology as well. Basically that would mean I'd be a clinical psychologist, lol. I started this about four years ago, before all of Tim's big issues (psychological), but it sure has helped in dealing with the system. In fact, today I had to talk to his counselor because I forgot his appointment. We showed up late and he started to say to me, "Well, I don't want to be judgmental, but do we you need to get a planner? This has been two times in a row.." Well, being trained and knowing that psychologists and counselor are told to 'make your expectations known regarding missed appointments and scheduling', I was ready for his lecture, lol. So I was not caught off guard as he thought I might have been. My reply: "actually, the first time I called in and tried to reschedule ahead of time. This time was a fluke because my schedule changed this week because school is out." LOL...he said, "Oh,you're right about that." :ohmy: I'm also more informed about things, so it helps me to be informed and be able to know what's going on when he's not really telling me much (which he isn't).

Its good to be informed.