I get my results by email now, i get the blood test done in the morning, and then email my heama and he emails back the results, but before that if i just needed them sporadically, i would usually phone my GP the next day and the receptionists usually just gave them to me over the phone or if they were really low, the lab would contact my GP and then she would ring me.

Hi Fiona,
If it wasn't for this site I wouldn't have put the mood swings and counts together. My son is 5 and can have some horrid mood swings to lashing out or just being so sad in himself and crying he tends to say "Mummy I don't like feeling like this" but as yet doesn't know how to express himself any clearer. Like you I mentioned it to our consultant if this could be his ITP and was told no. I have two older children 20 and 16 and this is different. Take comfort as I did that this can be a part of the condition too many other people can agree with us that it surely isn't a coincidence. I find that I am more patient with Zac because it must be horrid feeling so confused.

Take care,
Nadia.

Hi Julia and Mariette

Think the results thing might depend on the hospital. I know when I take my son for his count in Crewe, I phone the nurses later in the day and they give me his result over the phone. I also get a copy of a letter the consultant sends to his GP intermittently. If you phone the clinic or the consultant's secretary, they should definitely let you have the results though. Hope your count is ok anyway Mariette.

Ali

Dropping fast. Down to 19,000. Doctor is having me boost my Promacta up to 75mg a day and will schedule a splenectomy very soon. Got the most awesome gift today though..."Smells like Spleen Spirit" gift set. T-shirt, stickers, button and cute spleen plush toy. Made my day!

Iheartguts.com

Ahh thanks lol. Ive just brought cat no5 home today :ohmy: , he was brought to the shelter as a stray, dont know how old he is but he looks like hes had a ruddy hard life! I think hes been hit by a car in the past which has left him with a heck of a limp & bad back leg, shocking ears but he is full of love and affection. I fell in love with him & living in the cattery at the shelter was doing no good to his leg.
Hope Killian's doing ok
Julia

Mariette, i dont know if it's just a UK thing but at the beginning i had to ask the heama what the count etc was, now you can opt to get a copy of the letter they send to your gp which has a list of your blood results on. You are allowed your info but it might be a case in you having to ask for it. I think sometimes they feel undermined, Good luck
Julia

HEY! Get on the TEEN board!!!! :woohoo:

Hey look!
Thats me!

Nplate we have been told by our Dr. takes 5-7 days to see a result.

Always happy to see UK Julia - she is such a positive person and seems full of life.

My son found the PDSA for me after I came out of my "remission" in 2002.

Hi Joya,

I've not taken dexamethasone, but I feel somewhat the same way on higher doses of prednison. I usually bike to work, but stop if my counts fall below 30. However, even after the prednisone has worked and my counts are normal, I'm usually not comfortable biking at higher doses. I wait until I've backed off on the pred.

Of course at those doses, I'm usually so whacked I shouldn't be doing anything... even walking. :S

It does get better and easier to deal with.

Lily

Interesting. I'm not surprised that it's out of your system so quickly, but I was wondering if perhaps it's like prednisone, where it takes your body a while to recover.

I hope the rituxan works for her.

Lily

Nplate is supposed to be out of your system 2 weeks after stopping it, but they monitor you closely for 2 months just to be safe. Caitlin has been off for almost 3 months now. Her counts before going on Nplate were at 13 so they are really right back where they were before she started. We were worried about her having more symptoms at lower counts, but other than petechaie, an occasional bloody nose, and lots of bruising...there really have been no other symptoms.

Hey, Deanna -
Posts over the years have definitely proven that Devyn's doctor is incorrect in saying that symptoms will get worse, etc. As we all know, ITP is totally unpredictable and each child/adult reacts differently. Our son, Brady, was diagnosed in 2002 when he was 5 years old (he's 13 now). He has been treated with prednisone, Rituxan, WinRho and IVIG. We used WinRho and IVIG (not together) maybe 3 or 4 times a year, between 2004 and 2008. Brady is a very active kid, so we generally treated him once he dropped below 15k or so, so that he can stay active and participate in sports. Below 15k Brady starts getting bad nosebleeds and his count will drop all the way down very quickly. Anyway - that's background history.

What I want you to know is that in December '08 we treated Brady with WinRho. He held on for months - very slowly dropping down to about 30k in Summer '09. In December, '09 I took him for a blood test because I knew we would be going skiing several times over the Christmas holidays ,and his count was 90k. That was the first time in 7 years of dealing with this that Brady's count increased without a treatment! Nobody wants Devyn to deal with ITP for seven years (!) but I want you to know that there is always hope and a chance for the child's body to spring back. We actually haven't been in for a blood test since December because I'm enjoying this happy place (Denial?!) but Brady looks good, isn't bruising a lot, no nosebleeds, etc., so we're hoping he's holding strong.

Hang in there. I have read many stories over the years of kids gradually improving to "normal" or near-normal counts.

Beth - mom to Brady (age 13, diagnosed 1/18/02), last WinRho treatment was Dec.'08

Hey, 18 is probably safer that under 10. Do you think her counts are less than they would have been had she not gone on the NPlate? I know that people's counts fall dramatically when they come off of it, and I assume this is because they're used to the stimulus provided by the drug, but do you think that eventually things return to normal?

I've never heard of it, but this is a great idea. Even us adults would like it.

Lily

I've never heard of this, but what a great idea! I am a very disorganized person and a method like this would be a great way to keep track, as well as a sweet reminder of how brave our ITP kids are. Over the years, Brady has received special presents from the hospital or clinic, especially when he gets a treatment during a holiday - Christmas, Easter, etc. - and when we come across one of them we enjoy talking about the experience (even though the treatment isn't enjoyable, there are always nice moments with a nurse or the doctor or something we read or watch on tv during the time). I love the beads of courage!

Thanks for sharing that.

Beth - mom to Brady (age 13, diagnosed 1/18/02), last WinRho treatment in Dec. '08

I hope Decadron does the trick for Danica! I can't imagine going through 27 IVIGs! (Mostly because we got our bill about a month ago and it was $22,000 for one IVIG!!) For that price, I am almost glad it doesn't work for her! I think Rituximab is also expensive, but I think all 4 will be cheaper than that one IVIG (at least I hope). The positive part is that we will meet our maximum out of pocket and Caitlin's future treatments (if she has anymore) should be covered entirely by insurance through the end of August,then it starts all over again Sept. 1st.

I also hope that Danica doesn't get sick from all those IVIG's. Caitlin really reacted horribly last time and was sick for 4 days. With Rituximab, she was sicker during the infusion, but the after effects were better for her. She did great during yesterday's infusion, but I just got an email after I got to work that Caitlin is running another fever so I'm debating whether to go home or not. Here's to very minimum or NO side effects for Danica for Decadron!!

Thanks Ali,

It really helps to hear words of encouragement!!! Your post has made me feel a whole lot better!!

Really, really hope it works for her Michelle.

Good Luck, Ali

Hi Deanna

I know where you are coming from because Dougie is coming up to that year mark too.

In the UK, they seem to classify ITP in 3 or possibly even 4 categories - acute (under 6 months), persistent (6-12 months), chronic (1 year plus) and recurrent (keeps coming and going). The way the haemotologist explained it to us was that in the persistent phase, you had a 25% chance of remitting. After that, I think he said that about 10% of all chronic cases will spontanteously remit each year. Thats not a great chance but an OK one I reckon.

There are a lot of cases of mums on this site whose kids have got gradually better over the years, up and down, but eventually safely up, maybe not "normal" but fine nonetheless. I've found it really helpful hearing from some of you by the way!!! So I working on the theory that as long as platelets get to a "safe" level (the consultant suggests a consistent 60K), it doesn't matter whether Dougs has ITP or not. He's not there yet clearly, but he is some of the time.

66K isn't as good as Devyns last count, but still really OK Deanna. Try not to get hung up on the label too much.

All the best and hugs to Devyn

Ali

One more is 20 for me so I'll get that over with. Next project, set up my sig file. :lol:

Yay! I know I saw a 'keep me logged in' box weeks ago but then it disappeared, I'm happy it's back. It was exactly what Tamar said, I'd want to post then I'd think that by the time I did all the logging in and navigating back to the thread my thought wasn't that important and somebody else would have said it.
Erica

Well, here it is the next morning and I am still recognized. Progress!

I find myself a bit discouraged today after Devyns Dr appt. Altought his counts were a good number 66,000, this was the first time that his specialist labbled him as cronic ITP. Don't get me wrong i knew that after coming out of remmission for over a year that he probably was but hearing it from his Dr just made it set in!!

I'm upset because she made it sound like He would never get better and that his symptoms would only get worse as he got older. Talk about giving you no hope!! We have been very lucky so far because Devyn's symptoms have never been as bad as some of the kids on here and so far we have had to treat only once. Don't get me wrong she is a very good Dr and i have agreed with the way she has wanted to deal with Devyns ITP. I'm just hoping that she is wrong and that one day he will be ITP free again!!

Thanks for listening everyone......just needed to vent a bit

Deanna

Danica starts the Decadron on Monday -- IV for four days

Michelle

I've just noticed this in someone elses thread - when you sign in now there is a remember me box like there was on the old site.

Ali

Hi Lauren,

Sorry to hear that your count has dropped, but glad to hear that you will be starting Nplate tomorrow. I hope you will respond quickly.

I have no experience of Nplate, but for me Eltrombopag takes at least a couple of weeks to kick in, about 8 weeks when I first started taking it.

All the best for tomorrow. Be strong!

Vanessa