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25 Jan 2010 18:19
  • alisonp
  • 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
25 Jan 2010 18:27
  • Angel85
  • 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)
Category: Social Chat
25 Jan 2010 18:46
  • Sandi
  • Sandi
I can't remember how long it took, Pauline. Sorry - it was a few years ago.
25 Jan 2010 18:49
  • Angel85
  • 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.
25 Jan 2010 18:58
  • Sandi
  • Sandi
Angie:

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.
Category: Lupus
25 Jan 2010 20:05
  • Sandi
  • Sandi
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.
Category: Social Chat
25 Jan 2010 22:16
  • tamar
  • tamar
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!!
Category: Social Chat
25 Jan 2010 22:36
  • snowgoose
  • snowgoose
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
Category: Social Chat
25 Jan 2010 22:47
  • dbishop
  • 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
25 Jan 2010 22:53
  • liam12
  • liam12
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
:)
25 Jan 2010 23:24
  • ktonooka
  • 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
26 Jan 2010 00:50
  • Angel85
  • Angel85
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.
Category: Social Chat
26 Jan 2010 01:04
  • Angel85
  • Angel85
Good to hear he is awake, and my thoughts and prayers and best wishes continue to be with him and his family.
Category: Social Chat
26 Jan 2010 02:43
  • snowgoose
  • snowgoose
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:
Category: Social Chat
26 Jan 2010 02:50
  • snowgoose
  • snowgoose
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 :)
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