Isn't that amazing!!!!

I just recently found out that this can be done and that the liver regenerates. I learned it on the Grey's Anatomy series.

Amazing!!!!!!

Michelle

Don't ever feel bad about being a freaked out mom.....it just shows how much you love your child. I can't say that it ever gets easier ....you just find ways to cope with it.

Good luck,
Deanna

Hi there,

For my son's consultant, there is no magic number. His rule is to treat symptoms not counts. If there is no serious bleeding (i.e. not just bad bruising or petichiae) then he wouldn't treat. Says the treatments are all risky in themselves. He is one of the top UK childhood ITP experts so we trust him a lot. My son has been down to 1 on a couple of occasions now and not been treated. We've been going 8 months now with no real problems from this approach.

Having said that, it makes the local hospital and both his grandmas very nervous!!!

Hope your daughter improves soon - she is in the right age range for it to be a temporary problem, so I will keep my fingers crossed for you!

Ali

Hi ali,

I have to agree with you...the ups and downs of this disorder are very hard to deal with. When Devyn went up to 101,000 on his own i thought for sure that we were only going to see good numbers from there, but 2 weeks later he went down to 29,000. When he was first diagnoised at age 1, we treated with a dose of IVIG and his counts went up and never dropped any lower then 120,000 for over a year....i'm finding this time around much more stressful because 3 months later we still have low counts. At this point i'm comfortable with the wait and watch approach as long as he does not become symptomatic.
It's nice to be able to talk to someone who is doing the wait and watch approach as well!! I truley hope we never have to treat again and ihope same for you as well.

We actually just got back from the specialist and Devyn's counts were 51,000, i was a bit surprised i really thought it was lower....praying that they continue to go up but happy that they are a bit higher then last time.

I hope Dougies are higher when you take him next!!!

take care
Deanna

One of the hospitals in Newcastle near me is starting to do Liver transplants from Live donors. Because the healthy Liver regenerates and grows to the nessesary size it needs to be they are having an evening tonight and encouraging donors to come forward.
Julia

Hi there,

I'd have to say that 20,000 seems to be the magic number for treatment but every specialist seems to be a bit different. We too are doing the watch and wait approach with our son Devyn who is 2 but if he drops below 20,000 or becomes symptomatic then we will then talk about treatment. This is our second bout with ITP but still praying everyday that it too will go away.

I hope that your journey with ITP is not a long one but if by chance it is then this is a great place to get info, ask questions and even vent if you have too!!

Good Luck with everything

Deanna

Thanks! We took her in today and she was at 9K. They were thinking about maybe starting rituxan but as she is so young and its only been 3 months we opted instead for some CellCept. Hopefully this will do the trick.

Is there any way we can limit the signature length? I'm finding that people who have 10-40 lines with all their history are causing the discussion to go to multiple pages much sooner than the old forum and it can be annoying, especially if the same person with 20 lines posts multiple times. The time to wait on a new page refresh makes it slower.

Perhaps we can encourage them to share the history in their profile with an option on what they allow others to veiw?

My son was just tested by the public school district for learning issues. They feel that he has a processing issue and I should speak with my pediatrician about possibly using meds to help him focus. I have been assured he does not have the "hyper active" ADHD, but possibly the inattentive ADD. Does anyone know if there are meds that are contraindicated w/platelet issues? Thanks in advance for any insights/information! ~LaMonica
Mom to Camden-9yrs diagnosed 6/09

Thanks, Lauren.

Thank you Sandi. Are you experiencing any adverse side effects to the prednisone? I feel that I prednisone might be the best case scenario for me too.

thanks. Your posts are very helpful. I will be curious to see if 20 mg raises my count, and also to see if I get any bad sad effects. If the answer is yes to the first and no to the second, then short-term lower doses might be a way for me managing the ITP when I am away from home, need dental treatment or whatever. Otherwise I am quite comfortable with watching for symptoms and not treating - tho I am aware that symptoms can evolve with time. I don´t even bruise over 15 or 20, and that wasn´t true at the beginning. It would be good if more research were done on the correlation between count and symptoms, and what the factors that influence this are. It can´t be entirely random, even if it is complex and very variable between people.

Jennifer yes you can edit your post - there is a red oblong icon that says Edit, it's next to Quote icon/button I think.

So with the spoiler, which you can get if you do a Reply or Reply To Post, it is next to where you can select a font color - put your cursor on it and click and then the "secret" message that someone put in the spoiler shows.

Well it doesn't look like we will have it this week. Caitlin's dr really wants her to see the Rheumatologist before she starts the Rituximab because she doesn't want it to affect her overall plan of care. She doesn't see the Rheumatologist until Feb. 16th. I know that is only 3 weeks away, but in the meantime..."keep her feet on the ground". I almost want to say...YOU come keep her feet on the ground. She doesn't listen to me because she truly seems to be in denial that anything is wrong with her except for when she is feeling the effects of the treatments. Don't get me wrong...she isn't a problem pre-teen. Just a pre-teen that wants to do whatever she wants to do without restrictions when it comes to activities. I've told the doctor before that I truly think Caitlin has a Type A personality (daredevil) and has since the day she crawled out of her crib at 4 months old. (Then took off running by the time she was 9 months old!)

As far as her symptoms right now...she only has a few bruises and some petechaie inside her mouth. Oh, and I meant to ask the other day...is itching a side effect of Prednisone? She made her scalp bleed in several places earlier this week because her head kept itching so bad. I kept checking her over and over for lice, but didn't see anything. (She has been off since last Friday night.)

What a beautiful eulogy, I'm sure your mother would have approved of that. My thoughts are with you and your family at this sad time

Just thought I'd update you all on my latest weekly blood test. Just as I thought from the bruises and petechia, they have gone down again. They are back down to 47 from 76 last week. I know 47 is still quite good, but i'm just bummed they have gone down again especially when i am still on the 40mg of pred a day. I see the doctor next tuesday and have another count down before i see him. I just hope they haven't dropped down any lower.

I agree, 20 should be able to raise your count high enough and not give u too many side-effects. I'm currently on 40 and i am getting quite a few nasty side-effects.

This damn rash is killing me. Today I was so horrible that I almost took another 10 of prednisone to see if that would help. Today was unually sunny on my way into work and it just went downhill from there. My arms then got blotchy and burned, then my scalp started to burn. I ended up getting some benedryl to try and help and well it didnt really help that much at all other then make me sleepy. I have no idea why this is getting so bad or how to make it better. Sorry guys Im just frustrated and had a bad day :dry:

Sandi,
There also isnt a way to edit your posts.

Sandi I'm so sorry!

You may be falling asleep but I was having a sneezing attack when I read your post and I read it wrong :blush:

You said: It might bump you up to at least 50 where you would be safer. You shouldn't have many side effects on that.

I read [between sneezes]: I might bump you up to at least 50

I'm hanging my head in shame and heading for the bottle of Claritin!

hI IM VERY NEW TO THIS SIGHT,JUST WANTED TO SAY I HOPE ALL WILL BE OK,

Let me guess...this is for boards that discuss movies, books and TV shows???

Great idea.Jenny

Thanks for advise every one.I had a meeting with Liams principal and teacher today,it went very well,i modified the letter posted and it was alot easier than what i thought,they were very understanding and even asked me if the hospital ran ino days in wich they could attend to find out more about it.
Iput all the relevent info in a plastic see through folder with Liams photo, d.o.b necessary contact numbers,ambulance subsription number,itp @20-25k and please do not administer any asprin on th front cover just under his photo.,
The school thought it was a great idea,because it would be easy to find in an emergency without havinh to flick through all the pages in this folder,
Im still nervous about his first day on Friday,but at least i know the have all the info requied plus more!!!! BETTER TO BE SAFE THAN SORRY! PS Im still a little freaked out!
Jenny.

hello,Liams doctors are happy for him not to have any treatment,ie,steroids etc... until his levels drop below 20k,this seems to work well for us,although the last time Liam was on the steroids for a week he did not respond to it,his level only increase by about 10k,next time we might have to try the transfusion,i hope not,good luck,jenny

....there is a thingy in the Boardcode that looks like a screen with a down arrow at the bottom right of it and if I put the cursor on it it says Spoiler.

I have to try this - and since I see no way of deleting a post it's going to have to stay...



Ok, now I see what that is - I tried to see it in Preview but it didn't show it

Good - glad you are in contact with your UK doctors and they in turn are communicating with your doctors in Spain! Sounds like you are in good hands all the way around!

Hope the 20mg will give you an increase in your count!

Sandi - oh my, I would think yes lots of side effects with 50mg , I remember that dose well & it wasn't fun [for me anyway!].

Got goosebumps reading the lastest update! I'm just so thankful Steve is fighting and my prayers continue!