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Is there a relationship between symptoms/counts?

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14 years 2 months ago #159 by alisonp
I am not sure that there will be a good answer to this, but I've decided to ask the question anyway.

Dougie has just got out of the shower. He has loads of petichiae on his legs and feet, and fewer over the rest of his body. He only used to get petichiae and bruising at counts under 10 or so, but then in October, he started getting bleeding under his skin (like a graze without the broken skin) from scratching or knocking himself at relatively high counts (20 to 30). I've just looked at his legs now, and although he hasn't got any of the raised bruises, a lot of his legs just look dirty. I thought he was still covered in mud from football and I unsuccessfully sent him back into the shower to try again with the soap, lol! But when I look closely, it is like bruising, but a long way under his skin.

I am losing confidence in my ability to work out what his count is, and therefore to decide what he should or shouldn't be doing at any point in time. This is becoming particularly difficult because his count has been all over the place in the past couple of months (between 33 and 123, but possibly lower at the moment). Today, for example, we let him play footie for his team today. Lots of hard tackles, although we've banned him from heading the ball ever since he got ITP. Now I am wondering whether we should have not let him do so because the consultant said he should'nt be playing competitively with a count under 30 - in my defence I didn't think it was anywhere near that bad until I saw him fresh from the shower!

So what I want to know is

a) whether ITP symptoms are consistent over time with your kids or do they change from month to month, and

b) if their symptoms are not consistent, how on earth do you decide what activities should be restricted or not at any point in time.

He is going for a blood test tomorrow anyway. I don't work Mondays so if he needs to go, I always try to arrange it then. But if his count continues to yo-yo like it has done recently, I need a better way of reading the symptoms because this continual testing just makes me paranoid!

Thanks for reading this stupidly long post,

Ali

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14 years 2 months ago #165 by liam12
hi , my name is Jenny,my son Liam is 4 and a half,he has had itp for at least 10 months ,Liam gets purplish circles under his eyes and gets quite pale and tired along with a couple of extra bruising for good measure! his doctor says these symptoms are not typical of itp but every time he gets like this and even if his bruising has not gotten worst yet i am normally spot on that his levels have gone down. Jenny

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  • Angel85
  • Offline
  • I am 27 years old from Australia and I have T.A.R Syndrome. My email address is not showing on my profile for some reason so it is blossom_242@hotmail.com for anyone who wants to send me an email.
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14 years 2 months ago #167 by Angel85
I used to think so, but now i'm not so sure. My last platelet count was 76 last week and i have about 4 or 5 bruises on my legs and heaps of petichiae, more then what i had when they were at say 20, unless they have suddenly gone down, which i am hoping not cause i am still on 40mg of pred a day. I had another count done today, so i'll guess i will know in a day or two if they have gone up or down again.

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14 years 2 months ago #171 by alisonp
Angel85

Thats just exactly like I think with Dougie - for the first 6 months, I knew what symptoms went with what counts, but now I am "not so sure". Its helpful to know that petichiae can show at higher numbers though, because he has only got them before at quite low numbers.

Dougie had a count of 60 a fortnight ago, and I really hope its still somewhere near there. Just got back from a blood test, so we should know this afternoon anyway.

Thanks for the reply

Ali

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14 years 2 months ago #172 by xray001
Ali - I hope that Dougie has a good count, but unfortunately, I dread that it will not be.

Isn't that just the thing that really sucks about this -- you can never really know from one day to the next.

Danica was 118 on Friday (which is normal for four days after IVIg), but her white cell count was low, meaning that she has a viral infection. She has been super tired all week, and now I know why.

She went water sliding on the weekend (friend's birthday party) and had fun, but was tired. I am wondering if she will bruise from the sliding. She bruised when she went tobogganing a couple of weeks ago. Nothing serious, but did bruise all the same.

Anxious to hear your results today.

Michelle

Michelle - mom to Danica - age 13
Diagnosed 8-6-09
No response with Prednisone, WinRho or Rituximab.
over 60 IVIg infusions (every two weeks)
Three Decadron pulses - count was up while on the Decadron, and then fell as soon as it was stopped. SPLENECTOMY done 7-June-2011 Last count 594

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14 years 2 months ago #175 by alisonp
Hi everyone

Thanks for the posts.

Well it turns out I do have some idea about his count after all - the result was 16.

I am a bit gutted - we seem to be back where we started almost. And it puts him back into the restricted activities area which will upset him too. I am just waiting for the hospital to phone back regarding what to do about his "adventure camp" school trip next week - they said it would be ok to book, so I hope they have some answers at this point in time.

Yours in despair (well a bit anyway)

Ali

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14 years 2 months ago #176 by alisonp
p.s. Michelle,

The exhausted tiredness was what I noticed about Dougie last week, so maybe a good sign before the physical symptoms set in?

Ali

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  • Angel85
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  • I am 27 years old from Australia and I have T.A.R Syndrome. My email address is not showing on my profile for some reason so it is blossom_242@hotmail.com for anyone who wants to send me an email.
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14 years 2 months ago #186 by Angel85
Awww, sorry to hear they are back down again. I agree, it does feel like your back where you started when they go down. I am getting heaps more petichiae right now especially when i scratch if i have an itchy bite, although i want to remain positive, something tells me my platelets have dropped again.

I hope he does get to go on his camp, it would be something fun for him and might take his mind off the ITP, and i know if i missed out on something cause of my illness, it just made me feel more left out, even if he goes and just takes it really easy and not does too much. I found even if i didn't do anything, just being with my friends helped.

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14 years 2 months ago #188 by alisonp
Hi Angel85

He will be absolutely devastated if he can't go. He hates the ITP making him different from his friends already - doesn't like to talk about it, or let it make him behave differently. His friends all know about it, but he would prefer that they forgot.

Talked to the local hospital tonight, but they didn't really have any plans other than retesting him Friday to see if it improved. But we have agreed that the doctor will talk to the haematologist at Manchester Childrens Hospital tomorrow to ask his advice, and in the meantime, I have talked to his teacher to see if she can get exact details of the activities that they are going to do and whether he can swop some of the more risky ones for something safer. Hopefully it will work out. His teacher was great about it - said that she wanted him to go, and what can she do to help.

Go and get a blood test - your synptoms sound so like Dougie, especially the petichiae from scratching!

Sorry if I sound like your mum - having started worrying about ITP for my son, I find it difficult to switch off worrying-mum mode!!!! And lots of luck

Ali

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  • Angel85
  • Offline
  • I am 27 years old from Australia and I have T.A.R Syndrome. My email address is not showing on my profile for some reason so it is blossom_242@hotmail.com for anyone who wants to send me an email.
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14 years 2 months ago #191 by Angel85
I know how he feels about being upset if he can't go. There were a couple of times when i had to almost drop out of things because they were too low and i had to stop dancing too because my platelets got too unstable and i was really upset at that cause i love dancing.

Lets hope it all works out for him and the doctors say he can go, good to hear his teacher is wanting to help out so he can have this experience.

lol, no it's fine, i understand it would be hard to switch off, my mum never really switches off from being worried about me, which i think is only natural. I had a blood test done yesterday as i am still having weekly ones at the moment, but it is a public holiday for Australia day today, so i probally won't get the results till tomorrow, so i will just have to take it easy today and be a bit more careful till i know for sure what they are, but i'll let you know what they are when i get the results back.

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14 years 2 months ago #196 by dbishop
Ali,

Sorry to here that is counts have dropped again....It's always such a great feeling when the counts start to go back up. But when they drop i always have a ton of different emotions. Devyn goes to the specialist on Wed and I am sure that his counts have dropped a huge amount as well, as he has a lot more bruising and small amounts of petechia.

When you talked about how his legs looked dirty, i could instantly relate because Devyn too gets that look to his skin when his counts are very low, and when he is cold. I've asked his Dr. and she says that she doesn't see what i'm seeing.

I hope that he can go on his trip and that his counts go up befor he goes...Keep us posted

Deanna

Mommy to Devyn 3 years old

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14 years 2 months ago #198 by ktonooka
Ali,

Sorry to hear Dougie's count has gone down. I was going to say that the petechiae thing has always stumped me too. Jordan one time got them a few hours after her count had gone up to 74 from 44 the week before. And one time she was down to 10 and didn't have any petechiae at all. But I guess if there was a whole bunch of petechiae I'd bet the count is probably on the low side. And for Jordan the tired thing definitely is a symptom along with dark circles under her eyes. I'm a little worried too because Jordan showed me some petechiae on her legs right before I wrote this. :unsure: Arrggg!!!

Karen
Jordan's mom

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14 years 2 months ago #207 by alisonp
I am just posting here to vent my frustration about the conversation I just had with our local hospital.

They phoned the children's hospital this morning to ask whether it was OK for Dougie to go on his school trip but forgot all the stuff about what sort of trip it was! So the answer that came back was yes, thats OK. Hang on, I said, how is it OK for him to be doing that adventure stuff if he is banned from playing football with those counts?

So now, they have phoned up again with the right question, and apparantly the consultant's secretary took a sharp intake of breath when she heard what he was supposed to be doing!!!I am still waiting for a call back from the consultant or his secretary.

And even worse, we are back on monthly drs appointments!!

GRRRR

Ali

P.S. Karen and Deanna, I hope that Jordan and Devyn are OK. Deanna, I am particularly pleased that you recognise the "dirty legs" syndrome, because I have been thinking its just me too - greyish bruises, but way under the skin so that they don't really look like bruises?

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14 years 2 months ago #208 by alisonp
Consultant says Dougie should be OK to go on his trip if he is reasonably careful and if the teachers are aware of his count. So I will take him back at the weekend to get another count and assuming it is there/thereabouts/higher, then he is going! No doubt I will worry the whole week , but I am pleased he can go.

I can breathe a sigh of relief now, because I am no longer anticipating the very cross kid that I know would have appeared if I said he couldn't go....

Ali

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14 years 2 months ago #216 by dbishop
Hi Ali,

I'm happy to hear that Dougie gets to go to the adventure camp, although as you said it will be a week of worry for you. Best wishes for him having a safe and fun time.

I'm really not looking forward to the visit to McMaster tomorrow, as i know his counts have dropped....i'm hoping that they have at least stayed above the 20,000 mark and we don't have to treat...but with this disorder you never really know. I'm trying to stay positive but when we get the results and they have dropped it's so hard to not get discouraged...but we pray every night for platelets so maybe someone up there will hear us :)

Is it common for ITP to not be treated where your from?

Deanna

Mommy to Devyn 3 years old

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14 years 2 months ago #217 by lucidawn
Ali,
I have not read through everyone's replies yet, but just wanted to let you know how it is with us. At first Tim was very readable, but over time he became more unpredictable. We can never know what his counts are by symptoms. The boy hardly has bruise on his body and he is at 1k most of the time! Sometimes he can have some bruises and be higher. Its not predictable with him. I think its like that with some kids, at least. As time goes on, their bodies change, they adjust to having low platelets. They bruise more easily at times, and less easily at times, and you just don't know what their count is by symptoms. You just have to know if they are low, keep them out of danger. Knowing Tim is unpredictable and can crash one day or week to the next, he is not allowed ever to do contact sports unless he is in a good remission, and even then I am cautious.

Donna Ingold
Mom to Kelly 22, Karen 21, Josiah 19 (Congenital Heart Defect, MS), Timothy 17 (Chronic Refractory ITP-dx 5/03, Asthma), Isaac 15(blind left eye).

Allergic and Refractive to WinRho
Shortlived small response to IVIg(a few days of 30k or less).
0-1k since September 2010
No response to...

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14 years 2 months ago #218 by alisonp
Hi Deanna

Yep, I reckon my hair will be well grey by the end of next week!

I don't really know what is common over here because I have never met any other kids with ITP, and the UK ITP site doesn't have a great discussion site like this. However, I get the impression that watch and wait is used far more frequently over here. I am quite happy with it as an approach because all the treatments have some sort of potential risks. The paediatric haemotologist that Dougie sees in Manchester Childrens' Hospital says he treats symptoms and not counts. Dougie has got down to 1 on a couple of occasions now without symptoms more serious than bruising and petichiae (no serious bleeding), so he doesn't recommend treating him. He did have a couple of courses of prednisolone from the local hospital, but they are very jumpy! The only problem from my point of view is that Dougie is restricted from sports when his count is under about 30, which he finds very annoying. He is a very sporty kid normally.

I hope that Devyn isn't too bad when you get to the hospital. I;m finding the up and down part of ITP quite difficult to deal with, so I don't know how you cope when it comes back after a long break. The consultants secretary today said that the only predictable part of ITP was its unpredictability, which I think I need etching firmly on my brain!

Ali :)

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14 years 2 months ago #226 by tacmom
I'm sorry to see that Dougie's count have dropped. It is good that you have some indicator to tell when you feel like he has dropped. I can't always tell with Caitlin but she doesn't get petechaie unless she is below 30. She bruises at any count so that is never a good indicator for her. I know her count is low right now based on the fact that she has petechaie inside her mouth. Someone once told me that if you can see bruising/petechaie in their mouth, that gives you an idea of what their organs might look like inside their body. Our hematologist always treats when they have wet purpura. We re still waiting on insurance to approve the Rituxan for Caitlin and it doesn't look like we will have an answer this week. Glad that he gets to go on the adventure camp. I've always gone with Caitlin when they have cheer camps or any activity camps so that I can be there to get Caitlin care if necessary.

Pauline-mom of Tiffany (age 14) and Caitlin (Chronic ITP, UCTD -age 13)

Diagnosed: 03/02/07
Current count (Feb 2011): 138
Current dose: 1 mcg/kg

Treatments tried: IVIG (doesnt work), Prednisone (sometimes works with high doses), Nplate (2 years on it-worked, but had to be taken off due to...

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14 years 2 months ago #229 by dots
I'm so sorry he's at 16. My son's symptoms are deceptive. He can bruise and get patches of petechiae and I'll take him to the doc and he's at 35 or 40. It's clear that he'll drop and then jump back up and we miss the lower count, so he doesn't get treated that day. He's also been at 15k without any symptoms at all.

Unfortunately, his lowered count often presents these days as a long nosebleed; at least that's usually a real --but quite scary sometimes -- indication.

The bottom line is that at this point, six and a half years into this adventure (he'll be nine next month), we never know what his count is but always assume it's not much higher than 40. As a result, he plays no contact sports (baseball, soccer [football]), and doesn't even attempt gymnastics (risk of falling off equipment). He ice skates slowly, often wearing his bike helmet. He swims a bit, and I'd like him to learn to play tennis this year.

All this is to say that his activities are mostly restricted, but we let him run around when we think his count is around 40. The problem is that we never really know just what it is. Here again is the wish for the home plateletometer so we could find out without going to the doctor.

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14 years 2 months ago #264 by dbishop
Hi ali,

I have to agree with you...the ups and downs of this disorder are very hard to deal with. When Devyn went up to 101,000 on his own i thought for sure that we were only going to see good numbers from there, but 2 weeks later he went down to 29,000. When he was first diagnoised at age 1, we treated with a dose of IVIG and his counts went up and never dropped any lower then 120,000 for over a year....i'm finding this time around much more stressful because 3 months later we still have low counts. At this point i'm comfortable with the wait and watch approach as long as he does not become symptomatic.
It's nice to be able to talk to someone who is doing the wait and watch approach as well!! I truley hope we never have to treat again and ihope same for you as well.

We actually just got back from the specialist and Devyn's counts were 51,000, i was a bit surprised i really thought it was lower....praying that they continue to go up but happy that they are a bit higher then last time.

I hope Dougies are higher when you take him next!!!

take care
Deanna

Mommy to Devyn 3 years old

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14 years 2 months ago #269 by alisonp
Hi Deanna

Thats really good news about Devyn's count (I love that name!). When Dougie has been at that level in the past, I've always considered it really safe - in fact when he was at 60 a fortnight ago, I was just thinking that if he could just stay there and not go down, I would be really happy to accept not going up either. Clearly, that wasn't to be!!!

I agree that its good to have someone else to talk to who is doing watching and waiting - it seems a really good approach to me in the short term. Our only problem with it is that Dougie is missing playing sports big time. But then, life isn't perfect is it? I feel very grateful at the moment that ITP isn't causing him any problems beyond this.

When do you have to go back for a new count? - I thought I had it sussed a fortnight ago because he was at 60 and they said 3 months. Now we'll have been once this week and once next week - best laid plans and all that heh!

Ali

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14 years 2 months ago #273 by lucidawn
Never despair Ali. You learn to live with this thing. Its a roller coaster only if you hope in the idea of a cure and complete recovery every time Dougie has a hint of high counts. Just try to ride the highs and lows for what they are, realizing that it is what it is. Dougie will learn to cope with it and he will find ways to cope. We always thought Tim would be the athlete because he was the biggest and is such a natural athlete. But he can't do that. And I have not told him he can't be one, but he knows it. And he has found something else. He has found now that he is a natural musician. He picked up the bass and guitar this past year and plays it by ear. He's very good and sits around playing constantly. He does not even care to play sports or go out and be involved in "adventure camps". Dougie will find other interests and talents. In the meantime, he might also recover from ITP. Don't give up hope-but try not to put all your hopes in a good count each time. Ride the rollercoaster and enjoy each moment.

Donna Ingold
Mom to Kelly 22, Karen 21, Josiah 19 (Congenital Heart Defect, MS), Timothy 17 (Chronic Refractory ITP-dx 5/03, Asthma), Isaac 15(blind left eye).

Allergic and Refractive to WinRho
Shortlived small response to IVIg(a few days of 30k or less).
0-1k since September 2010
No response to...
The following user(s) said Thank You: firkins

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14 years 2 months ago #274 by alisonp
Hi Donna,

That is a lovely post. You are so much more sanguine about this than I manage to be most of the time.

I think part of the problem is that we have been told until now that Dougie WILL recover, and I guess I have never asked the questions that would have suggested that he wouldn't. I have been wondering if maybe I only hear the things I want to hear when he sees the consultant? It has been clear to me this week however that this will be long term and we have to find ways to live with that happily rather than worrying about the ups and the downs - exactly as you say. Interestingly I have started Dougie at guitar lessons since he was ill too - I figured it was a nice safe thing with some "cool" factor thrown in. He is doing his first exam next month!

The sports thing is much more of an issue for us at the moment, because Dougie's own sense of identity is currently wrapped up in being this kid who is really good at sports, really active, and a bit of a daredevil. Unfortunately he hasn't yet come to that realisation that he might be better off redefining himself - I am working on that!!!! But the consultant says he can play competitive football over 30, and hopefully he will achieve this again. He is still doing training with his team which makes him feel better. And he desperately wants to be the same as his friends at the moment, which is why the school trip is so important to him. I don't think he has been dealing with ITP long enough and he isn't old enough to have gone through that process of accepting that he just IS different!

This week has been made loads worse by the fact that we are under threat of redundancy at work and we are all getting reinterviewed for a reduced number of jobs. Hopefully it will all be done and dusted on Friday and I can get on with next week anew with a more balanced view of life. Whatever Dougie's count is on monday, I am happy that they will take good care of him on the school trip and that he will be ok.

Talking to other parents on this board really helps me by the way. How is Tim this week anyway?

Ali

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14 years 2 months ago #275 by alisonp

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14 years 2 months ago #281 by lucidawn
Ali,
We are going to see the regular ped tomorrow. Tim really likes him. I'm hoping that he can talk him into complying with meds. Friday we see the hemonc and get a cbc. I expect his counts to be low, but he has no symptoms right now. That doesn't really mean anything, though. He can be zero and have no symptoms. We'll see what the hemonc recommends.

Donna Ingold
Mom to Kelly 22, Karen 21, Josiah 19 (Congenital Heart Defect, MS), Timothy 17 (Chronic Refractory ITP-dx 5/03, Asthma), Isaac 15(blind left eye).

Allergic and Refractive to WinRho
Shortlived small response to IVIg(a few days of 30k or less).
0-1k since September 2010
No response to...

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14 years 2 months ago #292 by alisonp
Hi Donna,

How did your trip to the doctor go - any progress on the tablet taking front??

Ali

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14 years 2 months ago #293 by dbishop
Hey Ali,

Devyn goes back for a CBC in two weeks....sooner if he shows signs that they have dropped super low. She still hasn't classified Devyn as cronic but i think she is holding back for my sake. Who knows anymore....as you said the only predictable thing about ITP is how unpredictable it can be!!

Deanna

Mommy to Devyn 3 years old

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14 years 2 months ago #296 by lucidawn
Ali,
We saw the pediatrician today. He perscribed advair for Tim's asthma control. Tim loves seeing him,too. I think he see's him as a sort of fatherly figure. Tim is missing his father in his life. His father left 11 years ago. He's one of the positive male figures, though of course there is no real relationship there, but there is of course the psychological dependence that happens sometimes with doctors. I think its a pretty healthy one, anyway.

So, the outcome of the appointment was that he agreed that splenectomy was drastic and permanent, and that immune suppression with drugs is reversable. And he also remembered that Tim's grandma's splenectomy did not work and pointed that out.

Tim is still kind of bucking a bit, he says he thinks a splenectomy is inevitable. He's wrong. Splenectomy, in my opinion, is not viable at this point, and is risky with such low counts. Tim's grandma says her splenectomy almost killed her. It took her two weeks to get her counts up hight enough for the surgery, and then it didn't work.

So, I'm not for it. That's what I'll say tomorrow. The other option is to walk around with low counts and treat bleeding symptoms. We might have to do that.

Donna Ingold
Mom to Kelly 22, Karen 21, Josiah 19 (Congenital Heart Defect, MS), Timothy 17 (Chronic Refractory ITP-dx 5/03, Asthma), Isaac 15(blind left eye).

Allergic and Refractive to WinRho
Shortlived small response to IVIg(a few days of 30k or less).
0-1k since September 2010
No response to...

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