DOUGIE

Can't decide what to make of today's trip to Manchester.

Count was good (48K) - I expected it to be OK because all the petechiae suddenly stopped appearing on Saturday. First time in weeks, whoopee!. But we saw a different doctor than normal and, as well as contradicting a lot of the advice of the other doctor, I really felt like he didn't listen to me at all, and Dougie might as well have stayed in the waiting room for all the notice he took of him!!!!

The real thing that I think he was ignoring was the variability of Dougie's count. He saw the 48 result and said that it was ok to do most activities and he would see him in another 6 months! He upset Dougie in the first couple of sentences by saying that he didn't know when itp would disappear, it could be 6 months or 10 years - which I thought was tactless! I said that Dougie had had a lot of counts in the teens, twenties and thirties since his last visit and he seemed to criticise me for getting the tests done which was weird. So I brought up his colleagues advice about Dougie absolutely not doing playground footie and some other games below 30 which he then said he agreed with. So I said that I didn't know any other way of telling which side of 30 Dougie's count was. He also absolutely rubbished the idea that Dougie's exhausted phases had anything to do with ITP, and although he might be right, I just I left feeling like he thought I was some neurotic mum worrying about nothing. And I really don't think I am!!!!!!! I think I am quite chilled most of the time (PLEASE don't tell me I'm not!!!!)

I've thought about it on the train home, and I've just phoned the hospital to ask them if we can stick to seeing the original doctor in July. GRRRRR

Going to go and calm down out in the garden. Ali :S

Oh crap - don't you hate that when doctors act so glib about it?

Hope you had a great afternoon in the garden. You must have nice weather.

It was so gorgeous here last week - one day it got up to 19. THEN, on Friday, the wind came - sometimes gusting up to 100 kilometers per hour. Luckily, we did not have the snow that the northern part of the province got. They had to shut down the highways because you could not see five feet in front of you.

Michelle

I am very lucky that we only have two or three drs that we see and most of the time we just see one dr, who is an ITP specialist. All of them seem to respond in the same manner, where they are very relaxed and down to earth. Even if things aren't going so great, they just say "Let's see if we can do this, or let's try..." so that I know they are always looking into some kind of options. If we go more than two or three weeks between appointments, they ask us to feel free to make an appointment to come in anytime in between if we feel like something isn't right.

All of our hematologist have a rule of thumb of "30" when it comes to activities. Below 30, they prefer that we do not allow them to do any kind of contact sport or engage in anything where there is a possibility of them hitting their head. Caitlin's activities for tumbling or jumping on the trampoline require a count of 50. (However if they actually watched her, they'd probably bump it up to 100, lol!) We're going to an International Championship (Finals) of the season and we will get to see some Level 6 teams, which we've never seen before! (Caitlin's mouth will drop open and she will just have something more that she wants to do!)

I am sorry that the hematologist upset Dougie. I hope that the hematologist also explained to him that having a count of 48 was a good thing and that he still has a good chance for remission. Caitlin's hematologist always tell her that someday she will have a remission, but they just don't know when it will happen. That gives her hope.

Thanks for the replies. Now I've calmed down about his manner, I think I am fine with what he said. I think what he said was don't worry too much about the dips and Dougie is fine to get on with things. He was really tactless to put it mildly, but I think his reasoning was ok underneath that.

So I am going to take him at his word and I've made the following "resolutions"

1) I've talked to Dougie and he has promised to let me know if he gets petechiae again. If he gets them for more than a couple of days, I will take him for a count, but not otherwise. The only exception is going to Alton Towers, where the doctor said it would be sensible to get a count first.

2) Unless the original doctor wants to see Dougie again, I am going to go for this 6 month review appointment. After all, I HATE hospitals and also I am not really up for treating ITP so what is the point of taking Dougie to see doctors all the time.

Yeahah!!!!! I am going to enjoy the moment and be positive about the future. I am NOT going to worry about "what ifs".

Ali : :silly: :woohoo: )

Ali, sorry-gosh! We've had this experience so many times with my other son. Thankfully Timothy's hemonc doesn't let anyone make decisions on his care. Tim might see the nurse practitioner week to week (if the hemonc is not in office), but they only maintain what the other hemonoc has decided regarding care. I never liked the rotating doctors-they just don't know your kid, especially if you only see them every three months. Seems almost like you wasted your trip. Can you get another one?

LOL Donna - the NHS doesn't work quite like that!!!!!

When I calmed down, I think that what he said is probably sensible, it really was just his manner. So I'm going with the flow - no more hospitals, whooppee! Of course, if Dougie seems to get worse, I will take him, but otherwise, the prospect of staying away from doctors is very enticing. The issue of my other son and his over-cautious ENT doctor is still bothering me - I am going to give him to the middle of next week to get back to us and then phone the hospital myself. Poor Roger is continuing to have nose bleeds almost daily at the moment, so he is worrying me more than Dougie for once.

Hope Tim is ok this week with his count and that his school work is going better.

Ali

P.S Forgot to mention something good to come out of ITP

In the summer when Dougie had really low counts, I started him going to guitar lessons as it was something he could do safely. He'd done it before at school but then stopped. Anyway, he just passed his grade 2 exam with a distinction (88 marks out of 100).

Oh this can all get so frustrating, can't it?

I did not get a count on Danica today. I was getting the stuff out last night to take her blood and she pleaded with me NOT to take her blood today. I agreed because we HAVE to do it Friday and Monday.

She is not controlling her temper so well this time around. She just came home from a trip to the city with friends, and she is in a horrible mood, and has those brilliant red cheeks again.

Congrats to Dougie on his guitar exam. Good for him.

I hope you are doing better, also.

I Think it can be so frustrating not having complete control over the situation, or at least that is what i'm finding. When Devyn was in the care of his Ped i found that he wanted to be as cautious as i wanted to be but his hemo is the complete oppisate. She wants us to do the wait and watch approach which i'm fine with but i'm not happy with not doing tests more often. I probably would not mind so much if he was a bit older.

The new plan sounds like it will work out for all of you....staying positive is always the best medicine!!!

Deanna