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  • alisonp
25 Jan 2010 18:19
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

  • Angel85
25 Jan 2010 18:27
Happy Australia Day was created by Angel85
Hey to all the Australian members

Just thought I'd wish all the Australians on this board a very Happy Australia Day, Hope you all have a wonderful day celebrating, I'm very grateful to be living in this beautiful country, I remind myself everyday how lucky I am to be living in god's country. (okay, so i am a little biased, who isn't about their home country lol)
  • Sandi
25 Jan 2010 18:46
Replied by Sandi on topic Treatments & Insurance
I can't remember how long it took, Pauline. Sorry - it was a few years ago.
  • Angel85
25 Jan 2010 18:49
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.
  • Sandi
25 Jan 2010 18:58
Replied by Sandi on topic Rhema Appt

I have been on low dose Prednisone for nearly 6 years. It started out as 5 mg's but I'm up to 10 now. My Rheumatologist is on board with that. She give me a script for 100 5 mg. pills per month. On bad days, I take 15 or 20 mg's. Seems to be the best way for me to manage symptoms and function.

I tried CellCept but couldn't tolerate it.
  • Sandi
25 Jan 2010 20:05
Replied by Sandi on topic Steve a/k/a Gort (moved from old Forum)
Best news yet!

E-mail from Steve's brother (update from Steve's wife)

Steve made good progress over the weekend. The MRI shows that most of the blood that had pooled in his brain has dissipated, and the surgical repair to the blood vessel seems to be working. There is a little blood still there, but the doctors think that it will dissipate on its own over time and does not require more surgery. Steve is awake and responsive to requests. He has spoken a few words, very slurred, but that is good news. He can move his left side, but it appears that his right leg, right arm, and right hand are paralyzed (which is consistent with having a brain bleed in the part of the brain where this one occurred). This could be temporary. In 2007, the last time we went through this, it took Steve many months of hard work in neuro rehab to regain the use of his right hand. Steve is a fighter, and I know he will do everything possible to get back to "normal." whatever that means for him now. Steve's platelet counts continue in the single digits, and we just have to find a way to treat this. Right now, he is getting a treatment called igG every other day. This is the only treatment that has ever worked for Steve (and, trust me, he has tried everything -- EVERYTHING -- over the years, even the weird stuff no one ever tries). Unfortunately, a treatment will keep Steve's counts up for only about 48 hours, so we have to keep giving him treatments. igG is not a long-term solution, because of its side effects, especially lung and kidney problems. I'm not sure how much longer his doctors and I will agree to stay with this treatment. There is apparently a brand new treatment that hasn't even been through a single FDA test yet. One of Steve's specialists in Cleveland is looking into whether we can get him on that treatment.

That's all for today. Keep your spirits up and keep praying for Steve.
  • tamar
25 Jan 2010 22:16
Replied by tamar on topic Steve a/k/a Gort (moved from old Forum)
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!!
  • snowgoose
25 Jan 2010 22:36
Replied by snowgoose on topic Happy Australia Day
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:

  • dbishop
25 Jan 2010 22:47

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

  • liam12
25 Jan 2010 22:53
Replied by liam12 on topic liam is starting school
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
  • ktonooka
25 Jan 2010 23:24

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!!!

Jordan's mom
  • Angel85
26 Jan 2010 00:50
Replied by Angel85 on topic Happy Australia Day
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.
  • Angel85
26 Jan 2010 01:04
Replied by Angel85 on topic Steve a/k/a Gort (moved from old Forum)
Good to hear he is awake, and my thoughts and prayers and best wishes continue to be with him and his family.
  • snowgoose
26 Jan 2010 02:43
Replied by snowgoose on topic Happy Australia Day
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:
  • snowgoose
26 Jan 2010 02:50

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 :)
  • snowgoose
26 Jan 2010 03:24
Replied by snowgoose on topic Happy Australia Day
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:
  • Angel85
26 Jan 2010 04:47
Replied by Angel85 on topic Happy Australia Day
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.
  • Angeleyes75
26 Jan 2010 06:58
Replied by Angeleyes75 on topic liam is starting school
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.
  • dots
26 Jan 2010 07:12
Replied by dots on topic liam is starting school
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.
  • alisonp
26 Jan 2010 07:35
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!!



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?
  • alisonp
26 Jan 2010 10:17
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....

  • norita
26 Jan 2010 10:40
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
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?
  • sailorsocks67
26 Jan 2010 13:36
Replied by sailorsocks67 on topic Steve a/k/a Gort (moved from old Forum)
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.. :(
  • sailorsocks67
26 Jan 2010 13:47
Replied by sailorsocks67 on topic colonoscopy
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.
  • tortie
26 Jan 2010 14:22
Replied by tortie on topic differing thresholds for being alarmed
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.

  • tortie
26 Jan 2010 14:30
Replied by tortie on topic Best count in long time
great counts, even for 3 weeks, keep positive.

  • tortie
26 Jan 2010 14:49
Replied by tortie on topic Steve a/k/a Gort (moved from old Forum)
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!

  • dbishop
26 Jan 2010 15:42
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?

  • lucidawn
26 Jan 2010 16:28
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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