Short term I LOVE Promacta. Absolutely no side effects to speak of. NONE! Which is a big switch from the dex pulse I used to do. Long term I'm not sure it will work for me...my counts are up and down a bit. 82.000 two weeks ago and 40,000 now. But I'm cautiously optimistic.

You mean how I'm feeling isn't normal?!

We moved up here from Texas in springtime - the boys got their taste of a "real" snow on Christmas Eve, when we had a blizzard [had to cook Christmas dinner in the fireplace, hot dogs] and we couldn't get out of our neighborhood for at least 7 days, can't remember how long it took us to shovel so we could just get out the door.

My family knows when you come in the door shoes/boots come off - no walking around with wet shoes

Enjoy it - I'm sure the girls have put away some good memories!

Good for you to keep looking for what can help your daughter. There is a list somewhere here of ITP doctors. Also a warning list of foods and drugs to avoid. A few people have been helped by the celiac diet. Have you read people's stories here? I am sure there is a local support group in Florida just not up to date on where. That might be a good support group for you. Also PDSA has booklets about different subjects that you might ask for. You are doing a good job in getting educated about this frustrating disorder. I teach preschool and one of my students got ITP before she started her three year old year and sill has it in Kindergarten now. It's hard to deal with in kids so young. She was doing pretty well but all these winter illnesses have caused her to go low again. Hopefully with the spring she will do better and your daughter too. Take care and good luck on your move. Have you thought about flying with low counts? People have some ideas about that and it probably would be good to ask your doctor too. Debbie

40 inches! I can't even imagine!! We still have snow on the ground, surprisingly! Someone just drove by to take a picture of our snowman, lol! It will be a puddle by the end of the day, I'm sure. We're supposed to get up to 54 degrees today. But they're predicting maybe more snow tomorrow or later in the week! So bizarre! I do think I would get sick of "too much snow" though. It's no fun trying to keep our hardwood floors dry when the kids keep going in and out all day!

Glad to hear his count went up just a little bit from his first injection! Hope his 2nd injection brings him up even more! I know our dr kept going up until Caitlin was at 50 and then kept her at that dose until she dropped. It took her a full year and a half to get to get to the maximum dose. Timothy's max dose will probably be at the adult level of .10 mcg where Caitlin's was only .07 mcg. Even happier to hear that he isn't experiencing any side effects

Counts done every two weeks. Pre treatment with Promacta 20,000
then 98,000
then 72,000
then 68,000
then 82,000
now 40,000

So I'm not sure what to think. I am feeling absolutely fabulous. No side effects at all and great energy and sleeping fine and good attitude. Just anxious to see where this drug goes...up and down....settling...failing... will see I guess.

hi ya debbie my mom has been looking into dr,sover they but if we have to travle we dont mind .i have been giving ali her raw veg and fresh veg when cooking .i never knew about dark green veggies so will be given that a try iwill also lookinto the celiac disase x

i have just been giving her the strawberrys as they are i have not noticed much diffrence my self not yet asonly just started todo this also been trying her with aloe vera juice in water norm dose would be 25ml twice daily but cause she is younge i have chosen togive her 10 ml once a day and build up on it also been giving her raw veg to

True Ali, I think we are still climbing the roller coaster. Hopefully we will get to stay on the high side for a long time. Angel, I hope you get to use Nplate and that it works for you. Tim has not had any side effects so far. Nadia...it must be hard to walk with your toes crossed, lol...I'll join you though :lol:

Thanks everyone for the encouragement.

I'm so glad to hear that Steve's making progress! I can't wait until he's back online. I miss him, even miss hearing how much warmer it is in AZ than in MN.

I was wondering if anyone else had one (or multiples) or if they had any information about them because I've been having a hard time finding information.

I had a laproscopic splenectomy in July 2008 and the surgeon found an accessory spleen and took it out at the same time. I didn't have much of a response to the splenecomy by itself. Yet, with Rituxin after my platelet had never been better (400k)

Now that my platelet count is back down the toilet my hematologist made me do a CT scan and it looks like I have 2 more accessory spleens.

Is it normal to have so many? Since I didn't have a scan before my surgery, I don't know if I always had three extra spleens and the surgeon didn't see all of them or if they developed after the surgery (is that even possible?)

solentgal, with the strawberries, do you just have them by themselves or do u have to do something specific with them, because i love strawberries so i take them to work with me all the time and it doesn't seem to help raise my platelets at all, so i was just wondering if something has to be done to them before u eat them??

I had a good indication my platelets were back down last week as i was realy tired and feeling run down, they came back at 18 and i have a feeling they haven't gone up much higher this week as i am still feeling really tired and just like i want to sleep all the time. I have another blood count on tuesday, so i'll find out soon enough.

I know this is a bit different to sports, but i used to always dance when i was younger and i didn't have very many issues with that. I only had to stop because i have a problem with my knees dislocating all the time and i'd fall over when that happened, i didn't stop because of the ITP, but i was never really into the contact sports (my mum was probally relieved at that lol) the only other sport i used to do was swimming, but i agree the contact sports such as football etc, you do have to make sure the count is high enough especially if they are heading the ball, so no i don't think your being over-protective at all.

It is the opposite over her in Oz, it was so hot yesterday, not as bad today, but i can't wait till we get some cooler weather, the heat is starting to drive me insane!!

We saw an ENT for our 3 yr old son's nosebleeds. They offered to cauterize but also suggested vaseline swabbing in the nose, humidifier and daily saline rinse. It has been very effective. Before this regiment he became anemic from his nosebleeds but now we have occasional bleeds, no longer that 15 minutes. His counts are usually around 60k but he's had nosebleeds even with higher counts. Good luck!

Good to hear that he is continuing to make good progress, my best wishes to him and his family

Send it all over the atlantic to us please....

How much snow? 40 inches, I am sooooo jealous!

Ali :laugh:

Thats good to hear, hopefully he will get a positive result from the Nplate, thats what my doctor whats me to try, we just have to wait to find out if it has been approved for me to use.

Wow, that is really good. Bet you can't really believe it. Anyway, you aren't at the top of the rollercoaster really - I reckon you are on the bit where it is still going up and you are wondering just how high it is going to be and what its going to look like on the other side! Hopefully not too scary eh?

Good luck, Ali

Its great to hear something positive and my fingers and toes are also crossed and don't forget you are supposed to enjoy the ride!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Best wishes for next count,
Nadia.

Enjoy! We are in Northern Virginia, outside of Washington, DC, and have almost 40 inches of snow on the ground from two major storms in the last week! This is incredibly unusual for us too and the kids are having a blast. Guess we should credit global warming?! Brady built an igloo/snow house in our front yard - I think it will still be there in April! We're ready for the kids to go back to school, though - they've only been to school two days in the last two weeks. We're all a little stir crazy, but going skiing this weekend, so that will help.

Hope yours doesn't melt too quickly!
Beth - mom to Brady (age 13, diagnosed 1/18/02), last treatment WinRho Dec. '08

I have my fingers crossed for you, and I am praying that Tim gets some resolvment.

Michelle