Yeah, was not a fan of the Karma.

Thank you for the update - I've been hoping to hear something positive, and this at least is positive.

I'll continue to pray for Steve and his family.

- Leslie

Hi

Thanks to both for very useful comments and support. Yes, I am in email contact with my docs in the UK, and actually they are in contact with the docs here. Just writing to them this evening (the ones in the UK), they are not desperately worried about my count in the short term because a) I've had this count for a while with no bleeding except a few bruises and it is symptoms they look for; b) they know I have access to very good and immediate attention at the hospital 3 metro stops away should I need it; c) I am getting regular blood tests. But to ease my concerns they have suggested 20mg pred with the aim of getting a small rise in platelets while I am out here, and then review when I get back.
Interesting what you say about suddenly dropping 10. I hadn't thought about that.
I'm not particularly comfortable with a count of 10, especially not in the longer term. I was trying to see if the count would inch up by itself, even if just a little. If I could get a default count of 25+, I'd be a very happy girl...

Hi Norita

Based on my short 8 months experience of my son's ITP, I would say that UK doctors seem a lot more reluctant to treat low counts. My son's consultant says that he treats symptoms and not counts. If the symptoms are insignificant (just bruising and petichiae) then he wouldn't treat. My son has been down to 1 on a couple of occasions without treatment.

The experiences I read about on this board seem to be based more on treatment being based on a number - say under 20 or some other figure. That would be quite different to the way my son's doctor approaches it, and sounds different to the way your normal doctor operates. I hope that you reach some kind of a compromise with your spanish doctor anyway which doesn't panic either of you too much!

Ali

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

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.

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

That recent news has given me some relief. I feel more positive that he'll be back soon. Wow, what a tough situation.
I hope this next treatment will do it.

I'll keep thinking positive for you Steve, stay tough!

Michelle

great counts, even for 3 weeks, keep positive.

Michelle

Hi Norita, well I've been trying to get use to counts around the 10k range and I struggle with this question. If I was travelling I think I would want the option of prednisone available if needed if there are no other reasonable options such as anti-D etc. I know pred would help and work quickly, for me, if needed. Are you getting your blood work followed up there? If you have access to treatment there or medical intervention, then that minimizes the worries. I've had 4 hema's now. Most of them didn't get too concerned unless I was having bleeding symptoms. 1 hema wanted to treat with counts below 15k, 1 hema below 10k. Now I have another new hema that would prefer to get my counts at 30k with treatment. How he explained it to me is that he's aware that our counts can drop by 10k spontaniously. If you only have 10k there is more risk. Sure lots of ITPers live with these counts and do their best to be comfortable with it.

I think this is a tough question for many of us. It's almost as bad as the question of splenectomy. You should have a plan B or option B if something happens.

Michelle

Mine was done with counts at 60,000.Removed a couple of polyps. Doc had no worries. But that was 10 years ago.Hope it helps.

This is sooo happy/sad. I can't imagine the horror he must be feeling at not being able to move, or speak. Yet he has awaken. So sad right now..

Norita someone will respond who knows more than I do.

I just wanted to say we moved to Tokyo very shortly after my diagnosis and I was on prednsione - what a great hematologist I had there!! Then we moved to Hong Kong, still on prednisone - I liked my hematologist as a person but she would scare the heck out of me because she would panic with any little drop in my count so I really didn't trust her much as a hematologist. Almost every week or two I could count on her going into a panic and then me going into a panic because she did.

I remember a few times writing my hematologist in the States - no email at that time.

However I did not have a count as low as yours - I myself wouldn't be comfortable with an 11k, but that's me.

How much longer are you in Spain. Do you trust your hematologist there? If not do you think your hematologist there would get in touch with your UK hematologist via email?

Can you email your hematologist in the UK?

hi
my doctors in the uk have been ok with me doing the watch and wait, even though my counts have been bouncing just above 10 (and no higher than 25) since last Sept (despite two more attempts at anti-D). I bruise easily but generally not spontaneously, and I got one small blood blister in the mouth last week (but right by my back teeth, which I know cause ulcers from rubbing against the skin). But nothing else. So I have been happy to wait and see if my count can get a bit higher.
The trouble is that I am in Spain for work for 3 months, and being followed by a haematologist here who panicked at my count of 11 this morning, and is insisting I go back on steroids (or start something else, e.g. rituximab), saying that I am endangering myself by walking around with a count that low.
I'm not sure what to do. I hate steroids and wanted to avoid them at all costs. Equally, I did not want to try new treatments away from home.
I am wondering if the Spanish doctor is being alarmist. My doctors in the UK say they are happy to treat the symptoms rather than the count (though they're not happy with a count below 10 for very long). But I got a bit scared by this doctor here...
Is the lack of wet symptoms at a low count really significant, or am I taking risks?

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

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?

It's okay to seem like a freaked-out protective mother, particularly if you're freaking out.

My son seems to stabilize at about 35k, with drops low enough to cause big bruises and petechiae. We get him to the doc, and he's not low enough for IVIG because his count's come back up by the time we get him there. This is our current cycle. At 35k I still don't feel he should participate in gym, but since we don't know his count from minute to minute, I've had to get used to the idea that I can't keep him wrapped up in bubblewrap.

And so far, he's been okay.

Hi
My son was dx in oct 08 we had quite low counts for the first six months also having ivig at least once a month in that time. He was on steriods for a period of time but was stop due to not altering his levels only his mood. At the moment we have been hovering around the 50-60 although we have had a few lower drops in between but nothing that has required treatment. We just recently moved to country area so had to start a new child care centre, printing the booklets off this site has helped them understand more. He is a very active 3 yr that has no fear and would do anything to ride his brothers dirt bike. There are days when I get really worried especially if I see an increase in his bruising, but we just make sure on those days we do a less physical activity normally go for a swim. His child care also plans around him on days when we suspect he might be low they make sure when they have outside playtime they give him quite activities that he enjoys. Helps to distract him from the climbing equipment but doesn't make him feel left out.

As someone else said it's a mothers instinct to worry about her children.
Your only a phone call away if needed.
Michelle

Cool, I'll see if i can make it there tonight, if not tonight, i'll be there next week, and yeah it is the right link. I've registered with the same name Angel85.

Hi Lauren,

Just got an email from a couple of the regulars, who wont be able to chat tonight, so not sure how many will be there, but I will pop in and look for you in case you are able to make it. It should be back to normal next week, I would think.

Vnaessa :silly:

Hi,

Does the new forum have the option of a chat room? It would be great if it did, as we Aussies have been using the UK ITP chat room, it would be great to come"home"! If we could use the PDSA site, it would be easier for new chatters to find us and join in.

Vanessa

Hi Lauren, I had an email from a fellow aussie, who mentioned that chat time for today/tonight may have changed. But I haven't been able to confirm this yet.
If I hear anymore I will post here. Is the link for the chat you have to the UK ITP site? If so that is the correct one.

Hope to "meet" you soon.

Vanessa :laugh:

Good to hear he is awake, and my thoughts and prayers and best wishes continue to be with him and his family.

Yeah, I can read the yellow, very clever idea.

I'll try to stop by, is it the same chat room because I have just found the link to register on the old discussion board.

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. Arrggg!!!

Karen
Jordan's mom

Thankou for you feed back and advice,it is much appreciated.
I am amazed at how much information i have found after reading some of the discussions.
Its amazing how children with itp in different places are being treated with different treatments,ITS GIVEN ME ALOT TO THINK ABOUT,THANKYOU FOR THE COPY OF THE LETTER TO THE SCHOOL,ive been racking my brain trying to come up with one without seeming like a freaked out ,overprotective mother!! THANKYOU

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

Happy Australia Day to you too Angel, and all the other Australians, whether they be in Australia today, or like me, in another part of the world.
I hope you can read my first paragraph, I chose green and gold as they are the national colours!

Angel, why don't you join in the Aussie chat tonight in honour of Australia Day, we'd love to see you there :laugh:

Vanessa

So glad to hear about the progress. Steve, we are all pulling for you, and I hope you're able to update us yourself soon!!