Does anyone else have a pattern to their count?

A while back, my mum suggested that we keep a diary of Dougie's symptoms. I've been looking through it this morning, and it definitely seems to confirm that there is a pattern to Dougie's symptoms. Although he doesn't get his count done very often, I am quite good at guessing the numbers by looking at the state of his legs.

I think that immediately after he bottoms out, his count bounces back up to about 40-50 (I don't think it is higher because his legs still look a bit bruised). Then he has about two weeks without petechiae. The next two weeks, he gets increasing amounts of petechiae and bruising until he bottoms out at about 15-20 and bounces back again. There is definitely a bottoming out every 4-5 weeks.

Does anyone else experience a pattern like this? It seems really peculiar to me. If ITP is caused by antibodies, how come they work so much more effectively against his platelets at some times than others?

Yours in curiosity Ali

Hey, Ali -
I was actually thinking about this very topic a couple weeks ago, after reading one of your posts on Dougie's "bouncing." I may be wrong, but after all these years of reading about ITP, etc., it seems to me that Dougie's ITP is unusual. And that's not a bad thing - he gets bounces up without any treatment, which would be fantastic! In eight years of ITP, Brady has only bounced up two times that we know of without being treated. Of course, during the last 3 or 4 years we haven't checked him as often as we did in the first 4 years, so maybe there have been fluctuations that we haven't caught. But what happens with Brady is: he gets a treatment, then slowly (sometimes VERY slowly) drops until he is below 15k, starts bleeding, and needs a treatment. He has never gotten petechiae, bruises, bleeding and then bounced back up. The two bounces I referred to happened when he was down to about 30k (no bruising, etc), then one time he was up to 45k the next check and the second time he had a bounce he had been down to about 30k and bounced all the way up to 90k the next month. Then he slowly dropped back down for a few months, when we treated him for a vacation this past March.

Which brings us to current day. At this point with Brady, the good news is that he doesn't have those dips, but the bad news is he doesn't have the bounces either. At the moment, I'd guess he's hanging out around 45k or so. We haven't checked him in a couple of months and probably will soon.

So - I guess that's a long way of saying that Brady's "pattern" is 300k after a treatment, then a slow and steady drop. Lately, that slow and steady drop can take 6 months or more.

It's great that you're able to estimate Dougie's counts now - I'm sure that helps when you're trying to figure out restrictions. Hopefully we'll get to the day without restrictions!!

Have a great weekend!

Beth - mom to Brady (age 13, diagnosed 1/18/02) and Matthew (age 16)

Ali,

For us it seems like it is getting harder to predict his numbers. For the past three weeks Devyn has had some petechiae, not too much just spots here and there. But to our suprise the last 2 counts have been 76,000 and the lastest 82,000. I use to rely on the petechiae to let me know that he was really low but now i'm confused. My second indication that he is really low is the color of his bruises....when they are a redish-purple i know that his counts can't be good.

I think it's a great idea to keep a journal of his symptoms....i've always kept a book with his counts but i think what you are doing is such a great idea.

Devyn's hemo always tells me that his pattern with ITP is very different then what she is use to seeing....she too said that it's not a bad thing. What she meanst by it is that he does major jumps without treatment and then bottoms out just as fast..who knows, everyone seems to be so different. Dougie and devyn seem to be very similar with there pattern of counts.

Hope everything is well!!

Deanna

Hey, I'm not thinking it is a bad thing - just very strange given the explanation I've had for how ITP works. As for the restricting activities, well, I think I am failing there. With the exception of things like theme parks where he needs me to take him, most of the time I think he ignores me - in a nice way, but he ignores me nonetheless! The only thing I've definitively won on is the bike helmet. His knees have slowed him down a fair bit recently, but not ITP. Dougie goes to secondary school in September when he is 12, and I am just starting to think about how I am going to work that one - I'd put money on him trying out for rugby, knowing full well that it is one of the things that the consultant said definitely NOT to do! Its so easy at the moment because his primary school only has about 250 kids and everyone knows about him and would stop him doing things that were TOO stupid. I guess I wouldn't have him any other way though......

Deanna, I'm really pleased to see that Devyn is getting higher numbers again - maybe the low bit was just a blip, or maybe he just responds really well to IVIG. Either way it is a good result. The diary was my mum's idea, and it definitely seems to be a good one for us anyway. I agree about the colour of bruises being a good indicator - the ones you describe mean about 15 for Dougie, smallish blue ones mean in the 20s, huge spreading ones mean under 10, "dirty" looking legs but no specific bruises mean 40ish, etc. LOL, I know every hair on that boy's legs, how sad am I! He goes to the local hospital on Monday for a count and to see about his knees, so I will see how accurate my guess is then.

Ali

I agree with you that it seems strange.

It's definitely more difficult to enforce restrictions as they get older. And I always feel badly also - of course we all want our kids to be active and do whatever they want to do. Not many people play rugby over here (I don't know of any high school teams or anything like that) - but the sport that's really popular in our area and off-limits for Brady is lacrosse. He keeps talking about playing and it's a bummer to have to remind him that he needs a higher count.

Oh well - I definitely think things have gotten better for Brady ITP-wise since he started puberty, so hopefully Dougie will benefit from that as well!

I hope his count is higher next week when you check!

Beth - mom to Brady (age 13, diagnosed 1/18/02) and Matthew (age 16)

Ha!!!!! there is a good and a bad side to that one Beth. Good side is that ITP might get better, bad is that I'll have three teenage boys. Not sure I am looking forward to that one! In fact, there is going to be a bad fortnight in 2013 when we have 4 teenage boys - then fortunately out eldest son will turn 20.

The teenage years (with just two teenage boys) are definitely challenging at times! One minute I'm thinking how fun and wonderful they are and the next minute I want to strangle one of them (not really, but you know..) Sweet and surly - definitely describes our teenagers!

But what will we do when they're out of the house for good? After being so consumed with sports, friends, school, etc., it will definitely seem quiet. I'm one of 5, though, and it seems that someone was bouncing back home for a while - even after being finished with school. So I have to be careful what I'm wistful about!...

Beth

It's definitly not a bad thing at all.....when i read what somee of the kids on here have to do through i am very greatful that Devyn is still able to do those big jumps without treatment. Same goes for Dougie!! It just shows how unpreditable this disorder can be!! Many of the symptoms that Dougie has sound so familiar....especially those dirty looking legs. Hopefully this unusual pattern will lead to something great for Devyn and Dougie...We can only hope.

I think that Devyn is responding okay to this round of IVIG, definitly not as good as last time but at least he is responding
Because he dropped so low his hemo is now watching it more closley which make me feel better. We go for tests every 2 weeks for a bit but she allows us to do it locally instead of going to the childrens hospital.

I hope all goes well at the next appointment for Dougie....we'll be wishing for many platelets for him!!! He's jumped high befor and i'm sure he will again soon!!

Deanna

I am sitting here in the middle of the night trying (and clearly failing) to concentrate on marking accountancy exam papers. Chatting on this forum is sooooo much more interesting! Need to keep remembering I get paid for the marking!!!!

Beth - I don't think I really know what lacrosse is. Is it played with nets on sticks - if so, I think it is only played by posh public schools in the UK, not by state schools. Primary schools play tag rugby, which is a considerably less rough game than the real thing. Dougie has continued playing this throughout, even when he had a count of 10K. Unfortunately for Dougie, proper rugby is a normal part of PE lessons at secondary schools - I need to find some way of ensuring he doesn't play, because the consultant has banned him from that and boxing.

Deanna, tests every fortnight! I know you find that reassuring, but it would drive me mad! Makes me worry too much about numbers, instead of looking at how things are in reality. But, Dougie can tell me how things are going and Devyn (I imagine) isn't quite so capable of saying if something is wrong, so I think I might think differently if I was in that situation. I am sure that bouncing counts are a good thing in terms of outlook, because at least it proves that their counts CAN go up; my mum keeps saying that if they could just find out what caused the bounce, they could find a cure.....

Enough, back to prudential borrowing calculations (yawn) Ali

Hey Deanna, How's Devyn's count this week?

Hey Ali,

Thanks for asking...we decided to do a test next week instead of this week,that way it will be 3 weeks between tests. It's hard for me to not know what his numbers are at but it's easier on him not having to do a test weekly. His bruising is coming and going so hopefully his counts are trying to do something good!!

How is your crew doing? Does Dougie still have alot of bruising?

Deanna

Hi Deanna,

Well, I hope Devyn is in the OK zone when you do get his blood done and doesn't need any treatment. Dougie is really blase about blood tests so I forget how traumatic it can be for some kids.

After a nearly a month of petechiae, and a week of big, raised "mega-bruises" (its what Dougie calls them) including one so big that it extended over the whole of his right shin, Dougie seems to have picked up again. I didn't get him tested, but I think he must have dipped below 10K because of the type of bruises. However, no new petechiae since Monday, no new bruising..... I am just hoping it stays that way, not least because I was getting a bit paranoid about being accused of child abuse given the way he looked!

His class is celebrating their last week at primary school by going to play paintball next week. Can't totally decide whether he should be going or not, but I reckon it should be safe enough, so I've said yes - he will LOVE it!

Ali

I've never noticed a short-term cycle to my counts, but I do believe there is a longer-term cycle. My counts will be fine for 6-7 years (above 20), but then drop into and bounce around single digits for 2-3 years. Then, they will cycle back out of single digits and back up into the 20s/30s, on their own.

I have a log with most of my counts, going back 40 years, and the cycle is unmistakable. I have discussed this with the specialists from time to time, and no one really has any idea why this is.

There is a thing called "cyclic ITP" where a person drops low and a few weeks later, gets high again. Not much is known about it and the treatment is much different than typical ITP. There are one or two adults who have this and it was missed for a few years until they caught on to the pattern.

www.gundluth.org/upload/docs/Archived/Thrombocytopenia.pdf

Gort, I am really, really hoping that, in 39 years time, I don't have a record of Dougie's counts going back several decades!!! How long have you had ITP and how far into the 2-3 year dip are you at the moment? People keep telling me that boys tend to grow out of ITP in puberty, and I am holding onto that thought as hard as I can.

Sandi, Thats really interesting. Dougie had consistently low counts for the first 6 months (always under 20) and since then has had this pattern. Its not exact, but it does seem to be a pattern that fits into the timescales that article suggests. The only thing that doesn't seem to fit though is that Dougie doesn't ever have normal counts - he ranges between about 10-50. Does the cyclic version of ITP always mean normal to abnormal and back again, or could it mean low to lower and back again? I guess it doesn't make any difference because he doesn't have symptoms other than bruising and doesn't get treated. I might mention it to the consultant when we next go to see him though.

Ali :huh:

Ali - I don't know enough about it to answer that, sorry. There is very little available information.