Knowing what to do when you don't know the count..

I am having a bit of a crisis of confidence......

Dougie hasn't had a blood test since November when his count was 39. Since Christmas he has had more or less constant petechiae and he had a week of big random bruises a few weeks ago which made me think his count was somewhere near 10. At the moment, he has a few random small bruises but nothing I would normally worry about (although he panicked me a bit yesterday when he said that no, he didn't have any blood blisters in his mouth, but he did have ulcers that bled?????). I am guessing that his count is somewhere in the 20s, but as he gets so few symptoms until he hits single digits, in reality it could be anywhere from 12-40.

I am fine with letting him carry on with normal life in the 20s, but I would be a lot less confident if his count was nearer 10. In particular, he is playing a football match tomorrow and he has football in PE next week. Do I stop him or not?

Actually, having written this, the answer is clearly to go and get a blood test isn't it! I've been trying not to go in between his 3 monthly visits to the consultant because it makes me worry about the number.

Question answered! Its amazing what this board can achieve!!!!!!

Ali

Ali - I think you answered your own question. Yes, get a count.

Hi! We too just has a very similiar situation. Our Hemo had just moved us to once a month blood tests. We were so excited that it was becoming more just something we had to do and less completely our life. (if that makes sense)

My daughter went last Monday and was 129,000 no treatment and six months since her last IVIG. Saturday she had a big bruise on her leg and petechaie. UGH!!! I didn't want to go get another blood test because we had just gone. We waited until Tuesday and she was at 5,000!!! How in the world do they drop that quick??? I also noticed that there is not much difference in her body at 129,000 then there is at 25,000 but WOW does she look completely different at 5,000.

Writing it down helped me work it out Thanks for the confirmation though Sandi!

I hope his count doesn't end up being low! I think all of us are in situations like this so many times where we are constantly questioning ourselves and that is such a pain in the butt!!

The one symptom that Caitlin has been lacking for so long now is petechaie. It's been so nice not to see it so often! She gets bruising like anyone else because of her sports so I can't take that in consideration, even if they are in weird spots because most likely she hit that weird spot. She has alot of bruises right now and says she has two bright bruises on her butt, but that is from all her enjoyment on the ice! It's been a worry though because I've been hearing reports of people falling on the ice & hitting their heads. You don't know how many times I texted Caitlin yesterday to make sure she was being safe. At one point, her friend posted on facebook that they were sledding and they hit a tree, so of course...I commented to make sure they were playing it safe. (This happened after her other friend and their dog fell through a pond that they thought was completely frozen.) Kids will be kids and we just have to be the parent constantly doing the worrying for them!

worry gets us seeing blind don't it. But at least you found your own answer.

I hope that you got the blood test and feel happier for him. I know when I see the rash, I ring up because it nearer 10. But I still worry when it comes to bruises... and it be even harder next time since the consultant told me to come through when I see bruising. Previously I have kind of ignored bruising and the times I have finally gone through the count been normal and had just told myself to look out for the rash, when he says that to me. So yes after 16 years of being diagnosed, it still a bit of a roller coaster of when to ring, though they are always 100% okay with me once there. (it only boxing day the one dr gave me a hard time and since my count was 7 he did apologise when he next saw me) But other than him they have always been fine with me going through whether they are up or down.

So when in doubt give them a ring and go through.... Even if you have only just been to see the consultant that dayB) Sometimes my consultant will say to me, "hope not to see you this evening" but I understand his message in that if I see bruising and the rash etc, don't be affraid to ring up. He understands how quick they appear can drop.

So hopefully Dougie been tested and you have the results by now and you will know that next time.... give them a ring:)

Pauline,

I am soooo jealous of the snow. I would be out there on the sledge with Caitlin!!! Just a big kid at heart! One my other sons friends had a lucky escape from falling through the ice on a pond in December - its scared them all which is no bad thing. Having been fished out by firemen and spending a day in hospital afterwards recovering from hypothermia, I don't think the friend will ever go near a pond again!

I've been pretty sure Dougie's count is under 30K for the last month, but I don't think it is under 10, so that is good. Whatever it is, it won't come as a surprise, unless he is in triple digits that is! He has those purpura things on his legs too so I am not expecting great things.

Cjlimes

I am really grateful that we don't have to deal with those sudden drops. Dougie's count has been pretty consistent (although low) for the last 6 months. Before that he would have sudden increases with no treatment, followed by slower drops. And before that it was just permanently under 20K. Dougie is very like your daughter in having few symptoms though. I can't tell the difference between 120K and 40K. Even below that, you have to look carefully. He never gets nosebleeds and I am only just starting to think he might have blood blisters in his mouth. Hey ho, the doctor always tells me that no symptoms is a really good thing in some ways because it means that serious bleeding is unlikely.

Rhiannon,

I am going to take him to the hospital on Monday and get a test. I reckon its been so rainy here today that football will be called off due to a waterlogged pitch tomorrow anyway! They haven't had a game for weeks now, mostly due to the pitch being frozen when they turn up. Dougie doesn't have problems with bleeding so I don't think its urgent. He's been sat in a stadium this afternoon watching Aston Villa v Fulham - thats got to be safe if cold!

Thanks for the replies - even though I knew the answer by the time I had finished writing the post, its nice to have it confirmed!

Ali

Does Dougie play football or watch football? If he plays and has the rash etc, I would check to see if he should be playing because of the internal bleeding issue.

I suppose after hanging on this long another day wouldn't hurt him but I do hope the heamatologist will give you clear advice when to go through next time because it don't sound very good having the rash etc. I know my count is around 10 only through experience. I really hope you ask for clear instruction at least so that you feel comfortable about ringing them up and asking. I personally wouldn't have sat it out for so long but we are all different in this. Good luck with tomorrow

Does Dougie play football with a count of 20,000?
I'm just asking because we limit Kayla's activities under 30,000.

Shhhh, don't tell his consultant!

Immediately after his diagnosis, because we didn't understand what the rules were (not sure if we weren't told clearly or just didn't hear), Dougie continued to play football (soccer) at between 10-20K for a month or so until we got clear instructions. Below 10K we didn't let him. He has carried on doing PE throughout even under 10K - the teacher just used to modify games like cricket to play with a tennis ball and if they were playing soccer she used to make him the referee. This year at school he has done football, hockey and basketball, and out of school he plays a lot of basketball and football.

The two consultants he sees seem to have different views on activity levels which confuses things further - one says no to contact sports under 30K but other sports are fine, while the other says that anything is pretty much ok until you get to 15-20K as long as it is supervised. He says that bruises are just bruises, and if Dougie isn't worried about them, then he should go for it. We've asked about some specific activities and got the OK for them - Dougie has been on a couple of activity holidays since diagnosis involving climbing, sailing etc, and his count was below 20K at the time of one of them.

Our rules now are that we don't let him play contact sport if he has big bruises, because this is a clear indication that he is under 10K. He doesn't get many blood tests these days, so I have to guess the rest of the time, and I tend to guess in his favour, using the advice of the more lenient consultant! It makes me very nervous at times like this where he has a lot of symptoms but no large bruises. I am going to ask for more frequent tests when he goes to the consultant next week for this reason.

I hope this doesn't come across as us being stupid about the risks. Dougie is 12, so we've had lots of discussions with him about the problems he could run into, and we've also looked at the risks and other issues ourselves - one of which is that Dougie loves playing sports, and not doing them makes him very unhappy, to the extent that I was once more worried about his mental health than ITP. Also, with the benefit of time and experience, Dougie isn't a bleeder, even at 1K.

What do you limit Kaylas activities to??? Does she do nothing under 30K or just no contact sport?

Hope this long winded reply helps, Ali

P.S Football wasn't called off today, and he played - he has a big patch of petechiae and some bleeding under the skin on one leg where he got hit with the ball, but nothing worse (thankfully).

You have got me worrying now. My nearly 4 year old was diagnosed in October, but has obviously had ITP for at least 2 years. Since October her count has been between 13K and 18K. She is always covered in lots of bruises (she had 48 the other day, which is not an uncommon amount). She also pretty much always has petechiae somewhere and quite often in several places. A couple of weeks ago she had to had a platelet transfussion as she hit her head (not hard) but her whole forehead and eyes swelled up and now her face is very bruised.

However, we haven't been given very clear guidelines at all on things she should avoid. We were told no rugby (which I doubt she would be doing anyway), one doctor said that soft play places are ok but be very careful at parks. I have decided that she can only go on a trampoline on her own and seeing that bouncy castles always have more then 1 person on then these are not allowed. Do you think I should be stopping her from doing anything else? And, I was thinking of taking her ice skating, is that ok?

Grasshopper

That sounds like the advice we were(n't) given initially too!

Things I've been told he shouldn't do at all or at least until his count is above 80K - rugby, boxing, trampolining (risk of falling off and colliding heads with someone else I think)

Things I've been told he shouldn't do below certain counts (whether its 15 or 30) - contact sports, playground football (because it is on tarmac not grass and it isn't supervised), BMX

Things he has done at very low counts - climbing mountains, ice-skating, cycling with a helmet on, most other sports. The ice skating doesn't seem to make sense if he isn't allowed to do playground football though?

I think you and me need clearer instructions from the consultants!!!! I am not sure that I understand the rules either.......

Ali

P.S. phoned the hospital this morning to get a test, they said that the nurse was off sick and they didn't have anyone in, just to stop him doing PE this week!!!! Maybe the NHS needs reform after all... If he starts getting bruises I will phone the children's ward and get one, otherwise it will just have to wait until next week.

try reading this - it seems a bit cautious to me, but at least it is clear

www.itpkids.org/content/itp_sports.html

Thank you Alison. I agree I wish I was given clearer information from the hospital. I am probably being stupid, but the list says what can be done with counts between 75-30, so I'm guessing that the bit below that is for a count less than 30. So I'm also guessing that counts of less than 20K means none of the things in the list 75-30 are ok? So no horseriding, ice skating, bowling (not sure why bowling?), running or gymnastics.

Hope you get a blood test sorted out soon.

We tend to lean on the side of caution. My thinking is I don't want to okay something and regret it later. (in other words I don't want to end up on Oprah saying "if only I had")
It may be that Kayla's "normal" platelet count hovers in a higher range with the occasional dip into the lower numbers, so when she dips we slow everything down even keeping her home from school under 30k.
Between 30k and 50k she is on "red light" activity level, which she and her friends know means to treat her like a fragile egg as she will bruise very easily. 50k-75k she is "yellow light" Caution she does most everything with no contact sports, and no big toy at recess. 75k and up she gets the "green light" to do just about anything (within reason)
We may be a bit over cautious here not sure how the rest of you work it out with your kiddo's
Krissy

I've also been guilty of being a little to lax at times. I've allowed Caitlin to do a competition with counts of 13K, but I was a nervous wreck watching her! The one thing I am good about, is not allowing her to fly at counts below 50 because they throw her like 10 to 20 feet in the air and then I have to trust her bases to catch her. She was the main flyer on the team before ITP found us and then this season, since she's had great counts, they asked her to fly just one stunt for her Level 4 team. It's still nerve wracking because she was dropped completely on her head after flipping in the air, but I watched her closely and did not see any signs of a head injury. (Her count was over 100 at the time.)

Ali...I'm like you though where I have to worry about her mental status more than her physical status at times. If I restrict her too much, she becomes depressed and defiant and does even more than what she shouldn't do, to try to prove me wrong. She's hard headed in that way! You've been dealing with this long enough now that you know when you will need to step in and tell Dougie that he just can't do something. (I have done it a few times and each time, it resulted in TONS of petechaie around her eyes and bruising from all the crying.)

Grasshopper

I think you are reading it right - betwee 1K and 30K, these things are safe

go for a bike ride (with a helmet of course), go fishing, play frisbee, play golf, go for a hike, practice Tai Chi or Karate, go for a walk, go swimming, go jogging,

Above 30K she could do ice-skating.

It is still a bit confusing because to me at least there is a big difference between 30K and 50K and this guidance seems to treat it as the same count. At 50K, I would have no worries at all about Dougie. I think that this list is a bit over cautious personally, but it all depends on the symptoms an individual gets. Use it as general guidance maybe, but you know things like how hard your daughter plays and how rough her mates are, so I think that you could personalise it a bit. Like if I was going to the ice rink with a kid and holding her hand all the time for example, I can't see where the problem is with that - but a teenager whizzing round at high speed would be different.

Chrissy,

How does Kayla ever get to school? Dougie would have missed 6 months straight when he was first diagnosed, and fairly big chunks since then if I'd have kept him off when he was under 30K. He has only ever missed school because of hospital appointments, and he has only sat out of 2 or 3 PE lessons. Also how do you know??? Do you get a lot of blood tests? My problem over the last month or so has been that I don't really know for sure which side of 30K Dougie is on.

Your RAG system seems like an easy way of letting people know how to treat Kayla. It wouldn't work great for me to be so restrictive though because Dougie would go out and do stupid stuff just to prove he could - once when his count was well under 20K I found a video on his mobile showing him 20 foot up a conker tree! So I try to keep the restrictions for when I think he really really needs them, and because I do it so rarely, he seems to accept it.

I think this has to be an individual decision because there are so many variables in how someone plays sport - how many risks do they take, how rough are their teammates, what safety equipment do they use, etc etc.

Ali x

Well, I am now completely confused about what is safe and what isn't, really cross with the consultant, and a bit upset about Dougie's count.

Dougie's appointment this morning was a bit weird - I thought I was in some parallel universe at one point! For some reason, his consultant is always firmly of the opinion that his count is going slowly upwards, no matter how little his results seem to support that. So this morning, he told me that he thought Dougie's count would be above 50K????? Based on what???? When I said that he'd had a lot of bruising and even showed him some of them, he just told me that could happen at higher counts - well, not with Dougie it doesn't! He said if he wasn't having bleeding then his count couldn't be low, but Dougie has never really had bleeding even at 1K.

So, against this background, I asked whether I should ever be restricting Dougie's activity. The answer comes close to contradicting everything I've been told to date. No boxing, rugby, or trampolining until he is over 70K, but otherwise anything goes, at any count?????? Does this sound reasonable?

To make things worse, I've just got his results, a magnificent 9K........ I've just ranted at the nurse about the consultant, and she said she agreed. Don't know what to do now other than have a little cry.

Ali

Ali -
I'm sorry you've had a tough day with the consultant, etc. One kind've good thing to come out of this is that you definitely know Dougie's body better than the doctor does - back in an earlier post, I think you predicted that his count was around 10, based on symptoms. I know it's not really consolation, but it's good that you can trust your gut instinct. Sometimes I'm not sure I can figure out anything about Brady's counts anymore.

I don't know why the consultant made that prediction. With Brady, it seems almost impossible to say whether he's high or low, except that when he gets really low he starts getting frequent nosebleeds. But you know that Dougie usually gets petechiae when low, so the consultant should listen to the mom!

I get confused with restrictions also. I know that Brady's doctor has said no skiing, amusements parks or contact sports unless he's close to 100k. We're pretty lax with Brady's activities also - like you and Pauline said, it's a matter of not wanting to completely restrict them and have them depressed and rebellious. It's really important to Brady that he stay active and since he's been dealing with ITP for 10 years, I'm pleased that we've been a bit lax with him. Otherwise, he wouldn't have been able to do much without treatment. I think that with time you find a comfort level. Of course, now Brady wants to try tackle football, so if we allow that, we will definitely have to monitor him weekly and get him regular treatments if his count drops below 100k.

Hang in there - I hope Dougie's count goes up on its own soon!

Beth

Some consultants really do listen to patient/mom. Others like to think they know better

My previous consultant trusted me enough that when I phoned in I wasn't just wasting their time. This new consultant is getting to know me likewise.

One of the ward doctors, based on the lack off physical symptoms tried hard to say it isn't ITP and whatever made me think it is stuff.... Consequently I was nicely smug (even if it was boxing day) when the count came back as 7! He did apologise when he next saw me.

But yes I think I be ready for a good cry at what the consultant said to you today. Far form being very clear. I think they think they are being helpful or I hope they are. Sometimes the nurse will ask me what I think the count might be when I have gone in... but that is purely conversational. The consultant/duty doctor appears once the count is confirmed. They never guess to me at least.

Have a cry, and a mug of hot chocolate if you like hot chocolate. And a marshmallow with perhaps. You sound ready for the moment.

Beth, thanks for putting things back into perspective. I said more or less exactly the same thing to my mum on the phone last high - the consultant might well be an expert in ITP, but I am a greater expert in Dougie with ITP. I was a bit shocked his count was in single digits, because I had guessed in the teens, but really its pretty much the same figure. The bad thing is that the hospital have put Dougie back on weekly tests until he improves - I don't envy you having to do that again for Brady. I hope that the football is worth it!!!!

Rhiannon, that is the second or third time I've walked out of an appointment with the same bloke spitting tacks because he hasn't listened to either me or Dougie. Dougie once said he didn't know why he bothered turning up because he might as well not be there! I have no idea why they don't get the kids in the week before to get a test, so at least the doctor can look at those results before he dismisses them! Seeing him is a really pointless exercise when he doesn't know what the count is and he won't listen to anything you say. Never mind.

The hot chocolate would have been a really good idea, but I already demolished a bar of Dairy Milk and a lot of wine yesterday evening! I will bear it in mind for the next time we see the doctor though......

Ali

Ali,

I am so sorry about Douggie's counts and the confusion you're experiencing about what's acceptable and what isn't, depending on numbers. We haven't been in this long (almost 5 months), so we're still struggling with our comfort level and the doctors'. As a rule of thumb, Ashe's doctors won't let him play baseball (he is a catcher) unless he has 100,000 platelets or more. He can go to school with 30k or above, but has to have a buddy with him at all times - even in the bathroom until he is at 60k or above. At 60k or above, he can do just about anything with the exception of contact sports (including baseball since he catches). Ashe gets counts every other week still, which helps me feel better because he hasn't shown symptoms but once when he was already in the hospital at 6,000 and his gums bled a tiny bit when he brushed his teeth.

I hope Douggie's counts come up soon - and I hope you get a better idea from the doctors what his true limits are!

Keep me posted when you get the chance!

Page

I have to jump in on this topic because I am wondering if your kids can do all this activity with counts under 100K why does it seem that my doctor is so worried about treating my ITP when my counts were in the 50K?

If I can explain a little my count hit its lowest back in December at 6K which was when I had the flu. We were trying to taper the Prednisone then too, I got down to 60mg a day. My highest count was 311K on January 15th so we started the taper again and my count came back down. But it was still at 59K!!! She increased my Prednisone back up and then we tried the Rituxin and that didn't work but my last count was 157K!!! Im wondering if this time with the taper if my count stops dropping and levels between 20K-50K maybe I dont need treatment?

Julie79 wrote: I have to jump in on this topic because I am wondering if your kids can do all this activity with counts under 100K why does it seem that my doctor is so worried about treating my ITP when my counts were in the 50K?

If I can explain a little my count hit its lowest back in December at 6K which was when I had the flu. We were trying to taper the Prednisone then too, I got down to 60mg a day. My highest count was 311K on January 15th so we started the taper again and my count came back down. But it was still at 59K!!! She increased my Prednisone back up and then we tried the Rituxin and that didn't work but my last count was 157K!!! Im wondering if this time with the taper if my count stops dropping and levels between 20K-50K maybe I dont need treatment?

We didn't treat for 3 months when we were at zero. Treatment IS an option, but not a requirement.

Just reading this forum you'll see the extreme variety in doctor responses to low counts. Some people are hospitalized even though they have no bleeding symptoms. When my count was down to 8k my doctor was clearly shaken and unsure but she never even suggested the hospital. She told me 'don't fall down and don't hit your head' and prescribed more prednisone. I feel terrible for the folks with the panicking doctors and all the time they are spending in hospitals.

I treated when I dropped below 40 because I felt awful but many others have no symptoms at low counts and feel fine. I also wore a medical alert bracelet when my counts were below 100.
Erica

My doctor put me on home bed rest for a month when i had platelets at 5 and no sign of being sick. They usally only go that low when i am sick, thats the only time he has done that though, any other time they get really low, he will just up the pred or try another treatment.

Julie

It would be sooooooo nice if all doctors had a common set of standards/responses when dealing with ITP! As Erica says, their panic-points seem to vary greatly. Having read this board for a year or so, I would say that, in general, doctors in the UK seem to panic less than ones in the States.

The other thing that might be affecting your doctors response is the severity of your symptoms. As I understand it, if you have low counts and no bleeding issues to speak of, then you only have mild thrombocytopenia, whereas if you have higher counts but have bleeding then you have a moderate to severe case - your doctor might be treating the symptoms not the count, which is good practice.

It is possible to live a very normal life with very low counts, although there are obviously risks. Having got a count of 9K on Monday, my son has continued to go to school, youth club, and football practice. The only thing that he has done differently is that he hasn't actually played football, only practised skills - in PE, the teacher let him referee the match rather than playing.

Maybe you need to have a chat with your doctor about why they seem so concerned and why they are treating you so aggressively. Then maybe reach some agreement about a way forward. Good luck.

Ali

Well, another week, another really depressing visit to the hospital.

Dougie's count was very consistent - 11K. He has NO bruises at all, just some petechiae on his lower legs if you look very closely. He has seemed the same way since Christmas. At least it confirms my original theory that he only gets bruises in single figures.

We saw the paediatrician this time rather than the haematologist. It was just as frustrating though in terms of what Dougie should or shouldn't be doing, because he just wouldn't commit to a list of things that should or shouldn't be done. He just kept saying that everything had danger, some more than others. I "think" we eventually concluded that Dougie would be safe going on his mountain biking day on Thursday as long as he wore a helmet, although this doesn't seem that safe to me! I am going to have a chat with my husband about it and then make a decision.

I was thinking on the drive home that Dougie's ITP so far has fallen into roughly 6 month phases - the first was always under 20K, the second bounced around like a rubber ball, and the third was consistently in the 30s and 40s. I really, really hope that this pattern has just changed and we haven't got another 4 months of sub 20K counts to look forward to!

Ali

Ali,

Darn - I was hoping that Dougie's count would be up this week. I think that Brady's doctor probably would have said no mountain biking at 11k, but then again, Brady has probably done equally risky things at low counts when he hasn't been tested in a while and we don't know his counts. I guess the doctors are afraid to say "go for it" because nothing is certain, but it would be nice to have more absolute guidance. Like you've always done, just trust your gut and you'll come to a good decision. I know how hard it is and I feel for you, and I'm sure Dougie wants to go biking!

I'm keeping my fingers crossed that Dougie has a shorter phase this time and that his counts will bounce back up next week and he can resume all activities.

Im not sure how different ITP is in kids then it is in adults, but just wondering what treatments have your kids had? Are they on daily medication? Im kinda at a point where I want to try and do nothing, like wait and see. Last week we tried Rituxan and I had a reaction to it, however my count came up to 259K. Im now tapering the Prednisone and I am praying that my count didnt go down, but I feel lousy so Im not so positive about that! I will know tomorrow. My doctor wants to try and give me Rituxan again but I really dont. Im just thinking that if my count doesnt go so low maybe we can not treat? I dont know! Im really nervous about all of this and it sees the more time I spend on this page the more confused I get!!! Im sorry im rambling I know this isnt even where I should be on the forum. Thanks for listening and any and all help is appreciated!!