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

Thanks Ali

The most awesome thing about Versed is that it causes them to forget everything. Your son won't remember anything about the precedure. He'll remember right before he got the drug, and then he'll remember waking up. That's all! My son has had it many times for his heart surgeries and caths, and I've had it a few times too. Its like a nice relaxing sleep:). You kind of wake up wondering when its all gonna start.

Thanx its so great to know that I am not being over protective. It is Zacs consultant who works closely with his hemo. I have sent Zac to a school with small class sizes and so I have a very close relationship with his teachers. The headmistress is wonderful and he will stay in the same school until he is 16 (5 now). I have decided to make it quite clear that heading a ball is going to be out of the question. He will not start tag rugby until year 2. His lowest count was 37 but is 75 at the moment but as mentioned so many times that it could drop quickly and you can't count on bruising, pin pricks etc.

Take care to all.

Woohoo! Hold on tight!

He will double the dose of Nplate today. Hopefully he will at least hold counts and maybe he will come up. Well, I'm not gonna hold my breath. You know the best thing to do when you are at the top of a roller coaster is hold on for your life and SCREAM!!!! :ohmy:

I also have a very active daughter who is 11, almost 12 and she doesn't listen whatsoever no matter what her counts are. This is why we try to treat whenever we can, but we're finding that not much is working to keep her counts above 30. (That is also our threshhold for allowing her to do whatever she wants.) Caitlin desperately wants me to sign her up at a gymnastics center so that she can get some of the few things she doesn't know how to do when it comes to tumbling. She does competitive cheer and they do everything from being tossed high up in the air to catching other people to front and back flips and it is done with 20 people at the same time. It really can be dangerous, but Caitlin was already "hooked" before she was even diagnosed and it was very difficult to try to convince her to try another sport that would be less dangerous. We are actually in the process of considering a splenectomy because she has a goal of being a high school cheerleader and being able to cheer for a college as well.

Hi

I also have a sports mad ITP son, although he is a bit older at 11. We've also had a lot of problems with getting him to accept that there are limitations in sport and activity generally.

I think a lot of the guidance would depend on how liable your child was to bleeding. However, for what it is worth, we have been told the following by the consultant

a) absolutely no heading the ball in football unless his count is high - never been told exactly what this is but I reckon 70-80 at least

b) No contact sports unless his count is over 30

c) no playground footie unless his count is over 30 - because it is on tarmac and unsupervised

d) no competitive football unless his count is over 30 - this might not matter so much for a 5 year old!

e) no "off-the-ground" activity unless his count is over 30 - climbing frames etc

He has however continued to play football in the playground against instructions and not come to much harm. He has also continued to go to football practice with his team, and he absolutely loves tag rugby which is classified as non-contact. Your son is just the right age for this because they don't do real rugby until they get older.

Its hard to stop someone doing something they love, but I think you have to when their counts are really low. If my son's count is over 30 though, I let him get on with things - the doctor says its important not to stop him doing things if he is ok, and the worrying is my problem not his! I have found it helps to provide something special to do instead if his activity is restricted. When he hasn't been able to play footie for example, I've made a special effort to book the leisure centre and some of his friends for table tennis or badminton or something

Hope this helps, Ali

We woke up to more snow than we've ever seen before! The temps are now above freezing so it is already starting to melt. I wouldn't be surprised if it is all gone by the end of the day. Alot of our trees were hanging over due to the weight of the snow and several of the neighbors have broken limbs on their trees. I took TONS of pictures because I know this is not something we will see again in a long time, if ever! The girls have only been inside to eat and get a drink every now and then since it really isn't too cold to stay outside. I'm sure they will be soaking wet by the time they are ready to come in though!

Caitlin has had about 5 bloody noses since yesterday, but only 2 were more than 15 minutes long and I used Afrin to help stop them. I think the snow seems to be bringing them on and the fact that she is staying out so much isn't helping.

Great article, thank you.

I like your theory Kim, sounds very feasible. It is strange to have cell division without a nucleus. I only remember the basic teachings at school in relation to the amoeba.

If anyone comes across any more info on this I'd love to be informed please.

Just wanted to throw in that I think around the third week Mollie had some bone pain in her legs. It only lasted a few days and the doctor said other kids had similar experiences. Though I'd give you a heads up just in case so you don't worry if it happens to you guys!
~Jennifer

Neat that you are moving to Merritt Island, Florida. I had an aunt who lived there and visited her years ago. Nice place to live. Hope you can find a good doctor down there. I think fresh vegetables is the way to go also. Dark green veggies help with clotting which is good when the platelets are low. It's great to do research and try what may be helpful to your child. Have you looked at celiac disease? Some people are helped with that diet.
Platelets carry seratonin so when platelets are low people do feel down and tired. The good ITP doctors know this. A lot of the doctors used to say this isn't part of ITP but the doctors in the know do say this is a symptom.
Best of luck with your move. Hopefully your daughter will see her platelets rise very soon. Take care, Debbie

Our son's docs are adamant about the cautery because of the two significant bleeds he had. The ENT will be doing it in hospital so that H can be sedated. They'll give him a little oral Versed (generic -- midazolam), then place the IV and do what's called "conscious sedation" so that he's asleep during the procedure. Most kids have it done in the doc's office, but not if there's sedation involved.

Cautery works for a lot of people; it doesn't work for everyone. I figure if we get at least a year without nosebleeds we're ahead of the game. Angel85, your perspective is quite important because you've had it done, and it wasn't entirely successful.

Jenny, make sure to ask the ENT and the hematologist about everything you can think of, including what happens if it doesn't work, and exactly how the procedure will be done. Angel's not kidding when she says it's unpleasant -- that's why we're sedating my kid.

I dunno, it would be hard to gauage if air travel can lower platelets, i would think the only way to know would be to have a blood test done while your in the air, but that still wouldn't prove it was the air travel that made them low. I think it would possibly be just the jet lag and that travelling does tire you out

Well, I flew back to the UK and had a test which showed my count had gone down to 18 (it had previously gone from 11 to 43 in one week on 20mg of pred), so it looks like that initial rise was just a brief surge in response to the steroids. After flying back to Spain yesterday I have a couple more bruises too, but I expect those now (there's nothing like air travel with its cramped seats and heavy luggage to give you a few knocks).

I was wondering, is there any evidence that air travel can lower platelets? I'd been thinking that the extra bruising is due to the knocking around, and also to the changes in air pressure - i.e. that the platelets stay the same but they're faced with a greater challenge. But is it possible they actually fall too? I travel a lot, and it seems each time I do I get a lower count. It could just be that travelling is tiring, and it generally takes it out on your body.

Anyway, the plan now is to try Rituximab when I'm back in the UK in April. What a complete pain all of this is!

thanks for your honesty,its given me something to think about

Sorry to hear that, hope they go back up soon and the symptoms go away

Wow, 32 is not too bad, thats good.

I have seen an ENT and I just thought I'd give you an honest opinion from someone who has had their nose cauterized more times then i can count when i was younger. I hated having it done and I was older then Liam when i started having it done, it is honestly worse then having blood taken or an IV put it. It is the worst feeling in the world and at his age, you will probally find it is hard to hold him down to have it done cause he will most likely try to fight it.

A two hour nose bleed and 4 in one day is a lot and probally does need to be looked at by an ENT, but i just thought i'd make you aware that it isn't a pleasent thing to be put through. I agree they did work for me for a while, but like the pred it too stopped working after a while, so i needed it done more times for the nose bleeds to stop.

my little one gets real tierd when herplatelets drop and yes she can become moody to i think where ya body is so run down trying to do what it has to do it can be exhusting for the child as well as ur self i find it worse when she gets sick with colds flu sickness i cant sleep to good always up waiting for something lol only time i get to relax when she is at her dads which anit offten another good thing moving to florida il have the support i need from family uuggg i cant wait

i have been looking on the net research realy willing to try and natural way to help my little girl i saw that raw veg and strewberrys and aloe vera was on the top list of things that could help raise the platelets i have also been mixing it in water u can hardle taste it i have been given her just the 10 ml to srat with and build upon it as says to take 25ml twice a day with or with out the water im willing to try anything right now just to help her she loves her raw veg so thats another pluse aloe vera is good for internal and out ternal .... we are moving to florida merritt island , her count at mo is 3 we did have a patch whereshe looked great for ages then bang it came back worse than ever she had blood blisters in mouth rash all over she was tierd as well another sign i noticed when her counts drop

thankyou so much for that info,the doctor didnt explain much about the ENT,and i must have been a bit tired because i just nodded and said ok,<long night.>liam is seeing his heamo on tuesday and i will definately be asking kim about it. thanks, jenny

Neither splenectomy (January 2004) nor Rituxan (August 2004) worked for me, but I don't think the splenectomy made the Rituxan dose any more difficult. Prednisone (usually doses around 10 mg) worked for me both before and after the splenectomy--that is, prednisone keeps my platelets at a low, but safe (usually 25-40) level.

I don't let my son play football (soccer) or any contact sport at all, since his count can drop precipitously without any symptoms at any time so he could get seriously injured. Luckily, he's never been interested. (I hope he wants to play tennis!) If you have a sense of your son's count, and therefore his level of safety, when he plays, then your consultant's probably right. A jet black bruise doesn't sound like he should be heading the ball, though. I'd tell Zac that he can get very hurt heading the ball and you don't want him to hurt himself. (Here in Brooklyn, kids aren't even supposed to attempt heading the ball until they're ten anyway.) I would think that rugby would be too dangerous under any circumstances, frankly, but I tend to be more conservative when it comes to rough play. At some point he has to know that he can't do everything he wants, or everything his friends can.

Is the consultant your pediatrician or your hematologist? If he's a pediatrician, does he have experience with ITP? I ask only because you say he's so opinionated about Zac playing.

Here's a link to a list from itpkids.org, which is a project of the Boston Children's Hospital, which may help you. The rest of the website is quite useful as well.

itpkids.org/content/itp_sports.html

Good luck.