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26 Jan 2010 03:24
  • snowgoose
  • snowgoose
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:
Category: Social Chat
26 Jan 2010 04:47
  • Angel85
  • Angel85
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.
Category: Social Chat
26 Jan 2010 06:58
  • Angeleyes75
  • Angeleyes75
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
26 Jan 2010 07:12
  • dots
  • dots
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.
26 Jan 2010 07:35
  • alisonp
  • 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?
26 Jan 2010 10:17
  • alisonp
  • 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
26 Jan 2010 10:40
  • norita
  • norita
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?
26 Jan 2010 12:45
  • Melinda
  • Melinda's Avatar
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?
26 Jan 2010 13:36
  • sailorsocks67
  • sailorsocks67
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.. :(
Category: Social Chat
26 Jan 2010 13:47
  • sailorsocks67
  • sailorsocks67
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.
26 Jan 2010 14:22
  • tortie
  • tortie
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
26 Jan 2010 14:30
  • tortie
  • tortie
great counts, even for 3 weeks, keep positive.

Michelle
26 Jan 2010 14:49
  • tortie
  • tortie
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
Category: Social Chat
26 Jan 2010 15:42
  • dbishop
  • 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
26 Jan 2010 16:28
  • lucidawn
  • 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.
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