That's up from 31k last week. I think that means we'll be holding at last weeks Nplate dose. I'll let you know if that changes, but I'm pretty sure. We are waiting for his meds right now. His hemonc said not a petecheia on his body. He said he thinks he can hit him this week, lol.

Julia what a lucky guy #5 is to have caught your heart! It sure does sound like he has had a hard life, now he will be able to relax and get lots of food and loving! How is he with the others and do they like him?

The Queen is doing well bless her heart, still skinny but I think that is going to be her from now on - she's a happy camper and that's all we ask!

Oh, does #5 have a name?

Yes, I had low potassium, probably because of the pred, and I take prescription potassium. When it gets too low, my energy is also very low. I couldn't get the level up just with foods. Erica

I hope Caitlin feels better soon! I have the same issue with Brady - not knowing if he's truly not feeling well or what. Just this week he complained of a headache/ stomachache. I sent him to school but got a call in the afternoon and had to go get him. When he came home he ended up eating a normal lunch, so it didn't really seem like he was sick. I don't know if it's from missing so much school due to treatments, blood tests etc., in the past that they start kind've liking a little time at home? One of Brady's former teachers (who has 3 kids of her own) told me that she sends her kids to school unless they have fevers or are throwing up. But it's not always so cut-and-dry with our kids. And with a stomach bug going around your area (ours too) it's tough to know what to do.

Hope she's recovering!

Beth - mom to Brady (age 13, diagnosed 1/18/02), last WinRho treatment 12/08

Very cute.

I ended up picking Caitlin up at school yesterday. She slept/rested in the nurse's office for almost 2 hours before I got the message and was able to get to her. Her main symptoms were stomach cramping, bad headache, dizziness, and her bones hurt. There is a huge stomach bug going around so I'm not sure if she's catching something or if it's from the Rituximab. Problem is....she's complaining of these symptoms but she looks fine at times so it is hard to know if she wants my sympathy or if she is really hurting. I've always been able to tell when my kids were truly sick by looking in their eyes. Caitlin does look sick but it isn't consistent and I have to keep telling her to get back on the couch or in bed. She just now came in with a semi-fake cough and said her throat hurts! I don't want her becoming a hypochondriac!

Well after nearly 9mnths of relativly good counts 50-60.
We took Dale to appointment Wed expecting the usual he's looking good see you in a couple of months. Only to be told his count has drop to 27 ( possibly still dropping due more bruising and petechia, no bleeds yet fingers crossed). Just when I thought things were looking good I could handle the 50-60 cause he could still be a relative normal kid. Being nearly a 4hr drive away from the hospital we have to be a bit more cautious.
Now I have to try and slow him down a bit again, try telling a 3 yr no you can't jump on the trampoline, no you can't ride your bike over the jumps with your big brother and the list goes on. I hate feeling frustrated because we have to limit our weekend activities which means the older kids miss out.

I know it could be worse and I count my blessings that its not.
Just frustrated.


Dales mum.

Hey!

I've a doctors appointment next friday to see how my counts are doing.. Since I'm off meds for 2 weeks then.. I will talk to the hem. then about other treatment optionts.. Rituxan, WhinRO etc.. The doctor really wants me to try prednisone but I just don't want to.. I really really don't want prednisone.. So I'll discuss it with him next week.. Thank you all for the responses!

Thanks, The doctor has given me Slow-K today to take for a week, and then i'll have my normal blood test on friday next week and we'll see if that has made a difference, i already eat quite a lot of bananas and strawberries, i have read they are high in potassium as well.

Hiya

Suggest you google it - there is loads of stuff about long term steroids causing low potassium and the effects of that

i.e.

Prednisone can cause a low potassium and this is a common side effect of chronic administration of the drug. Physicians prescribing it look for electrolyte imbalance and hypokalemia (as low potassium is called). Sodium retention with resultant edema, potassium loss, and high blood pressure may occur in patients receiving glucocorticoids (steroids). Taking a 10 mg dose of prednisone for a few months is considered a prolonged dose.

I think I remember seeing that you are coming off them though, so hopefully it should resolve itself - eat loads of banana or something!!!

Good luck, Ali

I just want to know if anyone has ever had low potassium when they have had prednisone for a long period of time? My GP called me today and said along with my platelet count of 9, my potassium levels were really low and she wasn't sure if it was the pred that could have caused it, so i just want to know if anyone has had low potassium when they have had pred.

I seem to remember reading somewhere that you can't get Winrho in the EEC - certainly can't get it in the UK. I would be interested to find out otherwise though!!

Ali

thanks vanessa,im hlad your numbers are up a little.jenny and liam.

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?