Hi Donna,

I thought that your post about Tim not taking the promacta was really funny - only because I can so imagine my 16 year old doing that too! Its quite reassuring to know that he isn't alone. Teenagers are a law unto themselves aren't they? It will have been a relief to your doctor to know why it was having so little effect.

Your dream was really interesting too. I always think that when you are in that dreaming phase you can process information better so you get better answers. Unfortunately I dream about totally random things so it doesn't work for me!

I hope Tim is continuing to be ok with his count. We are going back to the hospital on Monday to get Dougie another count, so I am keeping my fingers crossed

Ali

P.S. I am not liking this new format for the discussion board - it seems much slower to go through posts. The photo uploading is interesting though - you look so young!

Ali,
Thanks for the encouragement. I always think my kids are some kind of wild freaks from the Amazon or Jupiter or something. Being a single mom, I think I tend to double up my guilt and think everything is my fault and "what lovely monsters I've raised, lol." So, he's not being a freak, that's nice to hear. I know it, but its nice to hear others says, "he's a normal teenager". The hemonc was definitely relieved, I think, but irritated that Tim would not give the promacta a chance to work. He did keep it low key, which is essential with Tim, who bulks and will completely rebel if directly confronted in a negative manner. He handled it well (the hemonc). I figured they have dealt with this before, so I kept it low key and called them the night before to give them a heads up.

As far as the forum, it does take more time to sort through posts, that was one of the first negative things I saw. But I think some of it is that we are used to being able to see all the topics at once and them loading quickly. Hopefully as we get used to it it won't be so difficult to deal with. I do like that the posts come to my email, so if I dno't want to log in, I can just read the thread replies on my email. Kind of a nice feature.

Good luck with Dougie and his cbc. I hope he continues to be on the rise. Even short dips don't mean he isn't on the rise. It happens.

Very sad and scary news. Prayers.

KARMA is gone.

How do I get back to the old forum? I want to take my profile info that I had on there and switch it to this one. I had alot saved on there that I don't have written down at home. YIKES!!

Did you figure it out?

If you change your username, please add the old one to your signature so we all know who you are.

I saw that we'd be able to have signatures with the new boards. Can you advise as to where to set that up or can we not do that yet?

Stangie,
I have only been dx with ITP and connective tissue disease--which in itself is a catch all for what seems to me when they cannot come up with a definite dx. I deal with joint pain, this rash, stomach issues, swelling in my feet/ankles, fatigue...these dont all happen at the same time or even for a long time. But it seems that I have somethng else going on other then just my low platlets. I cant seem to stablize like I have in the past which is what is sending me off to other mds. Im usually a kinda go with the flow girl and well Ive come to the realization that I NEED to take charge of my medical care. I cant keep going on with well maybe...or its ok today.

I think the most important thing is to be get all the information that you can and present it to your doctors. You cannot make an informed decision on your treatments until you know what treatments are available to you--along with the treatments you have to understand the side effects and if the benefits outweigh the risks.

Go to Profile, Edit, Contact info. You can put it at the bottom where it says "About Me".

Hello MaryEllen....I been dealing with ITP for almost a year and my hemo have placed me on IVG, Pred, Rituxan, NPlate and now I am on Promacta. It has been working for me fine. However I am very fearful of its side effecs but I pray each time I take it. I have noticed my vision has changed and that is a side effect. But my count has remained over 160,000 and they also went up over 200,000. I been on Promacta for about three months.

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.

Yea! I didn't like it either.

Yea! I didn't like it either.

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

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!!!!!

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

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.

Yes, thank you.

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!

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.

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.

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

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.

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.

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!

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!

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