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  • 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.
  • Angeleyes75
26 Jan 2010 06:58
Replied by Angeleyes75 on topic liam is starting school
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
  • 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.
  • 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:
  • snowgoose
26 Jan 2010 02:50
Does this new forum have a Chat Room option? was created by 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 :)
  • 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:
  • 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.
  • 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.
  • ktonooka
25 Jan 2010 23:24
Replied by ktonooka on topic Is there a relationship between symptoms/counts?
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
  • 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
:)
  • dbishop
25 Jan 2010 22:47
Replied by dbishop on topic Is there a relationship between symptoms/counts?
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
  • 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:

Vanessa
  • 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!!
  • 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.
  • Sandi
25 Jan 2010 18:58
Replied by Sandi on topic Rhema Appt
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.
  • Angel85
25 Jan 2010 18:49
Replied by Angel85 on topic Is there a relationship between symptoms/counts?
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 18:46
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 18:27
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)
  • alisonp
25 Jan 2010 18:19
Replied by alisonp on topic Is there a relationship between symptoms/counts?
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
  • tacmom
25 Jan 2010 17:45
Replied by tacmom on topic Treatments & Insurance
I know the nurse already sent the info down to the preauthorization secretary. I don't know how long it will take to hear back from them. I was hoping to take care of this myself to get the ball rolling, but they won't move forward until they hear from the hospital. The nurse said she is aiming for Wednesday or Thursday to do the infusion so I hope it works out.
  • Angel85
25 Jan 2010 17:42
Replied by Angel85 on topic Is there a relationship between symptoms/counts?
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.
  • julia
25 Jan 2010 16:51
Replied by julia on topic Steve a/k/a Gort (moved from old Forum)
:woohoo: Come on there big Steve!!!! Great news! Still a long way to go but im sure he will fight the good fight. We use a very small portion of our brains and even though some of it cant repair itself we can train other parts of our brains. Prayers to Steve & his family for the work still to do but they must have been extatic to walk into that room & see him sitting in the chair. Go gettem Tiger!
Julia
  • Stangie11
25 Jan 2010 13:57
Replied by Stangie11 on topic Rhema Appt
Well I am trying to figure out what all these treatments are and how to play the game. I am a very go with the flow girl too. I have always assumed that the doc knows best, but now it seems that we have to pay attention to our own bodies because there is too much going on with these autoimmune disorders and each person responds differently. I appreciate your advice. Currently steroids still keep my count up good, but I am trying to decide if they are worse than Rituxan. I had a splenectomy 8 years ago that sent the ITP into remission until now. So I wondered if Rituxan following a splectomy is safe. The steroids also help a little with the fatigue and the confusion and thinking troubles I have from fatigue. Thank you for your help. Stangie or Angie
  • Stangie11
25 Jan 2010 13:35
Replied by Stangie11 on topic Rhema Appt
Kim,
You sound like you could write a book about autoimmune diseases and treatments. I got a headache reading through the list of stuff you've tried. Thank you for the input. I currently treat my ITP with steroids and am considering Rituxan. I am confused about how a low dose steroid could be worse than all those toxic choices, but that is what everyone says. I am just beginning to play the game. I have Myasthenia Gravis too, but I feel overwhelmed with other symptoms that go beyond both of my autoimmune disorders and wish that one doctor could tell what was wrong with me. That seems really far-fetched though. I realize how new and complicated all this stuff must be. For now, I thank God everyday that I am here and capable of raising the 3 girls God has given me :)
  • Stangie11
25 Jan 2010 13:09
Replied by Stangie11 on topic Timothy's count 22k
Thank you. I am new at this, so I am not even sure what refractory means. Last April I was a 5 and used steroids for till Sept when my count stayed above 100 all by itself. In December it was 20 when I caught it and started on steroids again. It sounds like a game that I am going to have to learn how to play, so I appreciate your help. One doc wants danazol and the other wants Rituxan. So, I am trying to ask as many questions of this group before I decide. I realize that I am blessed to be sitting at my counts compared to some others. I prayed for Timothy all weekend, and for your peace. I thank God that you are one tough cookie. I guess I was worried about the effect that Rituxan would have on my immune system without the spleen, but I feel better after hearing about your mom. What is IVIg?
  • tigereyes
25 Jan 2010 13:05
Replied by tigereyes on topic Steve a/k/a Gort (moved from old Forum)
Thats great news that he has woken up. Any news on an address for him?
  • tigereyes
25 Jan 2010 12:58
Replied by tigereyes on topic Best count in long time
Cindy,
Im so happy for you. Thats a great count. Just keep doing whatever it is that your doing.
  • Stangie11
25 Jan 2010 12:55
Replied by Stangie11 on topic Best count in long time
Do you mind me asking what kinds of treatments you have tried and what the result was? What is your current treatment?
  • tigereyes
25 Jan 2010 11:21
Replied by tigereyes on topic Treatments & Insurance
I used to do auths for these treatments at my old job. If you call as a patient they will give you a determination in 24-48hrs. where as the dr office it takes a few days. The dr can request that the auth be made stat. And you will get a decision in 24 hrs. As for the IVIG, that is something they can retro to the dos. It wasnt something you could wait on. The key to getting the approval fast is to send all the info needed for the auth, like current platelet counts, failed treatments, even a letter of medical necessity would help. But if you call you get much farther and better help from the insurance company the the dr office alot of time you get an automated system or just a fax # to do the authorization where as the members get a live person. If there are any other questions let me know. Ive been doing authoizations for 5 yrs.
  • tacmom
25 Jan 2010 10:27
Replied by tacmom on topic Treatments & Insurance
Sandi...thanks! My new insurance is BC/BS, but under a different division called TRS Activecare. I just talked to them on the phone and they said the dr has to fill out a predermination form and fax it and they will need to take time to review it. I have a feeling it won't be done this week. They said it took them two days to approve the IVIG last time and we had it done on the same day that they ordered it so that means it wasn't approved until two days later! We can't really use Nplate as a record of treatment since it was a study drug. So all we have to show for is the IVIG and Prednisone so hopefully they won't deny it. Can I ask how long it took between the time you submitted the request for this treatment until the time you appealed to get this done? I am sure Caitlin will be fine for a few more weeks, but I will just have to really keep a firm eye (and both hands) on her for the time being to keep her feet on the ground.
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