Michelle,

Good luck with the Decadron with Danica, hope it works for her. It would give you another option if it does work. Is it a short pulse that you will try?

Ali,
Wow, maybe you can read the signs Dougie has (or doesn't have) better than you thought! A great start to his fun week.

Karen
mom to Jordan

I do look at the times something is posted. This site saying posted "1 week 3 days ago" or "5 hours 53 minutes ago" is confusing. I'm in the west, my day starts later than everyone elses - I know it is probably knit-picking but to me it is nice to know when a post was made, now it is just guessing.

Time on other site

top right of page
Server Time: 07:05:03 AM Your Local Time: 08:05:06

How it is above a post in a thread
Posted - 31 Jan 2010 : 11:54:28 AM

On Social Chat page with all the threads
11 Aug 2009 4:04:21 PM
by: Sandi

On the main page with all the sections on it
01 Feb 2010
05:00:55 AM
by: Ann

Hi Michelle,

Really, really hope that the new medicine works for Danica. It must get very tiresome getting all those IVIg transfusions, for you and for her.

We are clearly having a breather this week - last monday's count 16, today's count 104! Hope it lasts until he comes back from his school trip on Friday!

Ali

Dougies count last week - 16
Dougie's count this week - 104

Can breathe a sigh of relief for now and enjoy a bit of worry free time!

Ali

Yes it would be nice if it was wider - there is a lot of wasted gray space to the left.


Edited to add:

This is what is taking up the left side of the screen - really those 4 things are duplicates and can be found elsewhere.

Web Site Member Menu
Your Profile
Discussion Groups
List of Web Site Members
Logout

Oh, why does my profile NOT show up on the bottom of my posts!!!!

I find that this new site is not really an improvement over the last one.

Michelle

So - we have decided that we are going to try Decadron with Danica. I am really leaning towards the Rituxan, just because I think the side effects will be less, but others seem to think the opposite, so we will try the Decadron.

She has had 25 IVIg infusions, and although it works, it only works for about 10 days, and it is getting very monotonous.

One of the main reasons for us deciding this is that fact that Danica has been getting nosebleeds. At first, it would just be a little bit of blood on the kleenex when she blew her nose, but now it has become worse - full-blown nose bleeds. I will contact her hematologist this afternoon to get the ball rolling.

I hope the side effects are not too bad for her.

I do have my reservations about how well it will work. She never responded to Prednisone at all, so I am not really sure how well she will respond to the Decadron.

Darn - I don't think that I really like this site as much as the old one.

The comment above was from me, Michelle (Danica's mom)

Wow - I don't think I have ever read Tim having a count like 72. You must be ecstatic!!!!

I hope things get better for Tim - he has been on a really rough ride, and really needs some great news for a long time.

Good luck to you

When it was on tv i imediatley thought of i think it was MP who was going to need a new liver. Hopefully it can be brought across to help her too.
Julia

Hi

Hope tomorrow goes well for you - whatever the result is!

Ali

Hi

I had the same issue with my 11 year old. The first 6 months when his count was always under 20 were a doddle, but since then it has been all over the place (124,33,60,16).

I am not sure if this is right, but I work on the basis that he gets on with life as normal if his last count was over 30 or so. If he gets symptoms, I make an appointment for a count. If his count is under 30, I restrict for a week and take him back for another blood test. His consultant says there are no restrictions with a count of 60. I am a lot more insistent that my children ALL take normal sensible safety precautions now - helmets when they are on their bikes for example.

I should add that Dougie has never had any serious bleeding issues, even with a count of 1. I've also found that that his symptoms are a pretty good guide - before last weeks 16 count for example, he had petichiae, some bruising and most of all he was very very tired. He only seems to get symptoms with a count of 20 or under.

Hope this helps, Ali

I wish it were all a bit wider on the page too. If it was then each reply wouldn't take up so much space and you'd be able to get more to the page.

Well, my platelets didn't stay up too high for long, last week they went back down to 46, i am having another blood test and see the haeomtologist tomorrow and we will be discussing other treatments like the rituximab and i think he has some info on the Nplate as well, i'll update u all when i have seen him tomorrow.

The old forum could have taken it into account and displayed local time for everyone on each post but it wasn't turned on so it showed server time and it's true it made no sense. I have looked at Kunena's own forums.. this is a Kunena forum .. and from what they say, you can't show the time anyway.

I go to work and do normal everyday things with counts around 20-30. It is hard when your unsure what the count is if they are not being done weekly, but i can usually tell when they have dropped, usually i get heaps of brusies and petechiae and even when i don't, i usually get really tired and just generally feel unwell, call it women's intutition maybe, i'm not sure.

I think you just need to be careful, but not be too overprotective i suppose is the word. If his counts are around 50-65, then he should be right riding on the motorbikes, 50-65 is quite a good count and most times at that count, they wouldn't even treat it, they would just watch it.

Wow, 72 is an awsome count, I'm so happy for the both of you, Hope they stay up that high a little longer for him!!

I'm a newbie here, so I can share in the "best count" excitement!

I had splenectomy Jan 21, and just had my first blood draw post-op on Wednesday. WOW!! I couldn't believe my eyes... after years of platelet counts in the 50's and 60's, my hematologist walks in the exam room and announces:

437

I look forward to meeting you here on the forums.

Deb Thurston
Indy

norita,
i would say i have easy bruising, but thats all. however, i have diabetes and do not keep tight control. its known high glucose levels thicken the blood so i dont know if thats why i have no symptoms. the problem with that method however (not treating), is that if you ever need any medical procedures like an operation, you'll need to treat.

Glad to hear Tim's counts are up to a good number, finally! Hope they stay up for a couple of weeks! Nplate sounds like a good next plan for him. I certainly wish Caitlin was still on the drug just because it was just the best thing having her counts go up without her feeling the nasty side effects like she does with Prednisone and IVIG. Good luck there! Just remember they may not come up right away. Sometimes it takes a while then there are the fluctuating counts that are sometimes hard to deal with bec when their counts are up, we havr high hopes then we still have to deal with the lows every once in a while. However, despite how low they go, they don't usually get as much bruising or petechaie so that alone is a plus!

Glad to hear about the higher count for Tim! And glad he was able to have some fun in the snow like he planned.

Oh, and Donna, I just wanted to tell you how nice your words were the other day regarding riding the roller coaster of ITP. I think that its true that whenever Jordan's counts are good, I expect instant remission and am so disappointed when her counts drop again. I have a friend in remission from stage 4 breast cancer and she is always very good at counseling me. She reminds me to enjoy the good days for what they are and don't worry about what will come. Deal with that when it does come. Jordan's counts bounced around for a month without treating (good for her) but she started back on pred last Wednesday cause she has a couple of performances coming up. Oh well, it was good while it lasted.

Ali,
Good luck with Dougie's counts tomorrow. Sounds like they might be higher so maybe you can relax somewhat while he is there.

Karen
mom to Jordan

My son who is nearly 3 was dx oct 08 with a count of 5. The next 6 months were as series of ups downs and in out of hospital. Since then we have been sitting between 50-65 with the occasional lower drop but nothing below 20.
Doctors have told me when his counts are low limited his activties and when there higher he can pretty much be normal.
But what about inbetween.How much should I limit him with counts of 50-65? We live in a country area and spend alot of time outdoors. His older siblings ride around on motorbikes all the time we have ourselves taken him on the bikes only when i feel he 's having a good week. How do you do it? How do you know what they can and can't do each week without getting a count done every day. Especial when syptoms can't always be relied on.

Freckles, do you have any symptoms at all? Easy bruising? Purpura?

About the time: He wants to skip posting the time because everyone is in different time zones. Didn't the old Forum account for that?

I agree. Wish there could be more replies on a single page.

Oh, and North Carolina is in the South.

Ali,
Glad to hear he is symptom free. Maybe he has come up. Tim bounced around alot when he was in his partial remission. Charlotte is in North Carolina, in the region of North Carolina called The Central Peidmont. It is in the far western part of the state. We might get a little snow once a year, and usually we get freezing rain once or twice a year. Otherwise we stay fairly warmish in the winter. This has been a cold, dry winter so far. Very cold for us.

Tim went out with his sister and brother and built a snow man. He is enjoying his double digits:)

I already replied to this once and saw it here - lets see what happens this time.

My email inbox thanks you - the green check is no longer automatically in the subscribe box!

Time: on the old group up at the top right was the Server Time [normal time] and the Local Time [which for some unknown reason is in military time].

P.S. Where is Charlotte - it sounds like it should be in the South, but I am clueless about US geography. I work with a bloke who comes from NY state, so I want to impress him with my knowledge!

Wow, 72 sounds so high for Tim - I hope he is out and about having fun with that count! It snowed here today as well, but it melted within a couple of hours - I want ours to freeze too!!

Dougie is completely symptom free again, and for the first time in over a fortnight, he hasn't complained about being tired. He's even gone to bed to read tonight rather than going straignt to sleep. So, I am working on the principle that his count has bounced back up, at least a bit. I hope so, cos it will make me worry less about him on his school trip! I am taking him for a blood test tomorrow before he goes, more so that the teacher knows what his count is. Fingers crossed eh.....

Ali