Hi Jenny,

Sorry you have had to find this forum, but it is a great resource for ITP and has wonderful helpful members. I am also from Australia, I live in Newcastle in NSW and I am 24 and have been dealing with low platelets all my life, so i can understand what Liam would be going through and that at his age he wouldn't be able to understand much of what his happening to him.

I am currently on prednisone at the moment and i hate it too, so i feel sorry for him having to have that at such a young age. I wouldn't let him stay on it for a long period of time, I had it for quite a long time when i was younger and i hated what it did to me and my mum also hated to see what it was doing to me too.

It is scary thinking about what could happen, but platelets at 20 and over, you can function normally and do most every day activities, so try not to worry too much and just let him enjoy being at school with the other kids and i'm sure his teachers will watch over him as well if you explain to them what he has. I have to admit even now at my age, my mother still worries about me when my platelets are really low and always says before i leave be careful, i think it is just a mother's job to worry about her kids.

I feel dissapointed every time my counts come back low, it feels like you have to start all over again.

I used to think so, but now i'm not so sure. My last platelet count was 76 last week and i have about 4 or 5 bruises on my legs and heaps of petichiae, more then what i had when they were at say 20, unless they have suddenly gone down, which i am hoping not cause i am still on 40mg of pred a day. I had another count done today, so i'll guess i will know in a day or two if they have gone up or down again.

Thats Great Cindy, hopefully they stay around the same level, i'm still having weekly counts at the moment

hi , my name is Jenny,my son Liam is 4 and a half,he has had itp for at least 10 months ,Liam gets purplish circles under his eyes and gets quite pale and tired along with a couple of extra bruising for good measure! his doctor says these symptoms are not typical of itp but every time he gets like this and even if his bruising has not gotten worst yet i am normally spot on that his levels have gone down. Jenny

hi,my mane is Jenny,my son Liam is 4 years old and was diagnosed with itp in April last year
his platelet levels were 7 .He has had all the other tests to rule out any other nasties,in the last 10 months he has had steroids ,wich are fine if you dont take into account the side effects or that the last time he was on them for one week his levels only went up to 40. Without the steroids his levels are consistently at around 20-25 give or take.Liam is due to start school this weekand i am more worried than ever about wether he will be ok,mid you he can hold his own as he has 2 older btothers.Liam is beig seen//treated at The Royal Childrens Hospital in Melbourne,Australia,his heamatologist reasures us he will be fine,I am absolutely petrified as i wont be with him to constantly remind him to slow down,stop climbing etc.. We have tried naturapaths and other herbs ,all to no avail.For some unknown reason i expected his levels to go up just before he started school,and when they didnt the dissapointment was nearly as bad as hearing it for the first time.Its been great to let off some steam and emotion.Thankyou,it would be great to hear from anyone,Jenny

Steve will be again in my prayers tonight & everyday. Until he can respond and tell us he's praying for us. <giggle>
Hang in there Steve.

Pauline:

It all depends on the insurance company and the type of policy you have. I had Health Assurance and was denied...they wouldn't change their minds. Then I got switched to BC/BS and they denied at first, but approved after appeal.

I would think that you could appeal and win based on the fact that Caitlin has gone through most treatments with little result.

That is the first step in the battle won! Thank you God for answered prayers. Praying that you will continue making steps towards a full recovery Steve.

Love and prayers to you and your family

Vanessa

Thank you so much for passing on this good news Sandi.

Hi Pauline

Your posts about insurance make me feel grateful for the NHS - thank you!

Having said that , there are also a lot of drugs that we would find it difficult to get on the NHS, either because they haven't been approved by NICE (national drugs approval body) or because the local health authority hasn't got sufficient funds. So for example, my dad has a form of bone marrow cancer called myeloma. He gets treatment with a new and very expensive drug that seems to work really effectively for him, but a friend of his who lives about 100 miles away from him can't get that drug because his local health authority won't pay for it! So this is probably just as much of a lottery in the UK.

Hope it isn't too difficult for you to get Caitlin's treatment approved anyway and that she has some improvement from it.

Ali

I am not sure that there will be a good answer to this, but I've decided to ask the question anyway.

Dougie has just got out of the shower. He has loads of petichiae on his legs and feet, and fewer over the rest of his body. He only used to get petichiae and bruising at counts under 10 or so, but then in October, he started getting bleeding under his skin (like a graze without the broken skin) from scratching or knocking himself at relatively high counts (20 to 30). I've just looked at his legs now, and although he hasn't got any of the raised bruises, a lot of his legs just look dirty. I thought he was still covered in mud from football and I unsuccessfully sent him back into the shower to try again with the soap, lol! But when I look closely, it is like bruising, but a long way under his skin.

I am losing confidence in my ability to work out what his count is, and therefore to decide what he should or shouldn't be doing at any point in time. This is becoming particularly difficult because his count has been all over the place in the past couple of months (between 33 and 123, but possibly lower at the moment). Today, for example, we let him play footie for his team today. Lots of hard tackles, although we've banned him from heading the ball ever since he got ITP. Now I am wondering whether we should have not let him do so because the consultant said he should'nt be playing competitively with a count under 30 - in my defence I didn't think it was anywhere near that bad until I saw him fresh from the shower!

So what I want to know is

a) whether ITP symptoms are consistent over time with your kids or do they change from month to month, and

b) if their symptoms are not consistent, how on earth do you decide what activities should be restricted or not at any point in time.

He is going for a blood test tomorrow anyway. I don't work Mondays so if he needs to go, I always try to arrange it then. But if his count continues to yo-yo like it has done recently, I need a better way of reading the symptoms because this continual testing just makes me paranoid!

Thanks for reading this stupidly long post,

Ali

My work went under a new insurance plan this month. Do you know if most insurance companies would consider Rituxan a "medically necessary" treatment? I was trying to look through my insurance book and prescription book and I don't see any of the conventional therapies for ITP listed except for Prednisone and Imuran. Does your dr usually make the call to get Rituxan preauthorized or do you have to do it? I am trying to get the process started so we can get this infusion started for Caitlin.

That's great, Cindy. You get counts done on Sundays? It would be nice if we could do that here in the States.

I had my latest counts done today, and they are at 54! The only down side to this count is that the last treatment I had was just 3 weeks ago. My next count is at the end of Feb. Hopefully there won't be much change!

I had my latest counts done today, and they are at 54! The only down side to this count is that the last treatment I had was just 3 weeks ago. My next count is at the end of Feb. Hopefully there won't be much change!

I'm so glad to hear that Steve is awake and at least somewhat alert! I'll keep sending good thoughts and prayers to his family.

Thanks, Sandi!

Congratulations to Caitlin! I'm glad they were able to change the routine for her so she could compete. She would have really been bummed to not be part of this victory. Let us know how the Rituxan goes. It was easy for Tim, though time consuming.

My son was on it for a little while, but took himself off without telling us recently. He said it makes him feel terrible, tired, like he's on cold medicine. He has also been complaining about his vision...didn't realize that was a side effect.

He's 16.5, btw.

Thank you for posting this Sandi. I am so thankful Steve is awake and I will continue to pray all is well!!

Update! I received an e-mail from Steve's brother this morning. He forwarded an e-mail that Steve's wife sent to family and friends. Here it is:


Hello everyone. After a long wait, I have some good news to share. Steve woke up this morning. I was sitting in the chair next to his bed reading, and I looked over and he was staring at me. It was a shock, obviously -- no bells, no alarms, just open eyes for the first time in a long time. That's the good news (and it's great good news). The not so good news is that he can't speak. He responds to commands by blinking his eyes, so we know, as the doctor said "that he's in there." But he can't (or at least he hasn't) speak, and he can't move his hands, arms or legs when we ask him to do that. We don't know what damage has happened -- they will now start to do a lot of tests to try to determine that. They will do an MRI very soon to see how the brain surgery has healed and to see if there is any blood remaining. His platelet count continues to be poor, and we are talking to his ITP specialists about other options. Please pray that he won't have more bleeding in his brain. I am so frustrated with his ITP. I know what Steve would say -- "hey, ITP is easy, try cancer if you want to feel sorry for yourself." For now, I guess, he's awake, it appears that he survived the surgery, he's breathing on his own, and for all of that I am very happy. Now we hope and pray that he hasn't lost his memories.

I don't think I can move them. If I did, your replies would just be a copy and paste and it would look like I posted it.

You are right "What if" it had been Caitlin that had gotten the concussion! I would have freaked out, definitely!! One thing that is much safer about our gym is that we always, always have a soft bouncy floor (not mats)...like the ones the gymnasts use to do their floor routine. It is actually a law now in Texas that all high schools must have a mat out when doing tumbling or stunts at all times, but the school that the other girl got her concussion at, was at a private school so I'm not sure the same laws apply. Caitlin's team mostly has high schoolers so if they are basing her, she is so easy for them to lift.

They WON first place yesterday at the competition AND they were the Grand Champions! We were so shocked and so excited!! It was our first time ever for the gym (we've been there since it opened because our friends own it) in 6 years that they got this title! Not only were we short a girl due to her concussion, but another one of our guys (we have two high school boys) was hurt with a dislocated shoulder so he only did the dance part and had help with some of the other girls when he had to lift up anyone. He sat down low in the back or off to the side when there was any tumbling done.

I am glad to hear that most people don't have a bad reaction to Rituxan. I truly hope that will be the case for Caitlin. I am sure we will find out tomorrow or Tuesday when Caitlin's first infusion will be. I talked to my mom, and she doesn't understand why they are doing so many treatments in such a short period of time. She thinks the hospital is just trying to make money off of me! It is so hard to explain ITP to other people when they keep saying "but she looks just fine, I don't see anything wrong with her"! I had my team leader call the dr Friday to find out what Caitlin's count was, and for the first time...she keeps telling me how bad she feels because she got to hear the nurse herself say "the count doesn't look good" "I just don't know what to say and I'm so sorry because I know how badly she wants to compete". (They have no idea that she did last week's and this week's competition and I'm too scared to tell them because then they'd think I'm a bad mom.) And maybe I am...but at least I know Caitlin is sooo happy right now!

She did have ALOT of joint pain last night with her knee and her shoulder. I asked her if she did something during the competition and she said no. I think I remember reading that coming off Prednisone can cause joint pain so I told her it was just from the medicine. She had a 10 minute nose bleed yesterday morning but it wasn't as bad as some of them have been, whew! It is still so hard to tell what is an ITP nosebleed and what is a normal nosebleed!

Yes, thank you.

Thanks. I'll try that later. I'm going to have to go copy and paste the info. from the old side of the message board.

How did I manage to get 2 posts of my replies?

That's exactly what Joan said in her PM! Thanks, Sandi.

Hey, Sandi, like Tortie said, What's going on with my replies? I noticed yesterday when I made that post that it posted 2x's. Now I see 3 replies!!!!!

That's exactly what Joan said in her PM! Thanks, Sandi.

Hey, Sandi, like Tortie said, What's going on with my replies? I noticed yesterday when I made that post that it posted 2x's. Now I see 3 replies!!!!!

I am really glad that the " karma " option has been removed. It was not appropriate. Thanks Sandi

Yea! I didn't like it either.

Yea! I didn't like it either.

Sandi, are you able to move all the replies that are on the old forum to here, or should we re-post on this new site? Just curious.