I have gone from 20mg yesterday to 10mg today, so i'll watch myself carefully tomorrow, so far i haven't felt too bad, i got a really bad migraine last night but other then that i haven't seemed to have any problems. I have been on it for about almost 3 mths now since december and been on the 40mg for about a mth or so, so i don't know if that would be considered long term or not.

Thank you, Melinda! I'll check it out.

Its very unusual for kids to get treated in the UK unless they have significant bleeding (something more than bruising and petechiae). He is unlikely to be in pain, although my son says that the bruises sometimes hurt a bit. So my advice would be to keep calm, remain watchful and careful, keep everything crossed, and wait for an improvement! All the treatments have some sort of risks or side-effects, so if you can manage without, why take that risk, especially as most cases of ITP in children are quite shortlived and resolve themselves?

If however, you are worried about anything, take him to the doctor or the hospital - no point in taking risks unnecessarily or worrying yourself to death. It must be really difficult with a toddler - at least I can tell my son WHY he shouldn't be climbing or playing rough and know that he understands (whether he takes any notice is another issue entirely tho!! LOL). There is another poster (dbishop-Deanna) who is doing wait and watch with her pre-schooler, so she might have some good advice for you.

Good Luck, Ali

I'm no expert but for myself, I notice a lot of brusing when my platelets are low, so when you start to notice them fading and going away, usually they have gone back up a bit.

Prednisone is an immunosuppressant, so when your on it, you are at more of a risk of developing an infection. If he is not on any medication at the moment, then there shouldn't be much worry about keeping him away from public places.

I'm not in any pain when my counts are low, i do get fatigued more easily when they are low, but i don't get pain.

I know it is scary and can be overwhelming at first trying to deal with thats going on, but i find this support group a big help because i am able to talk to other members who are going through the same thing as me and it's good to know all the treatments that are avilable as your doctor might not mention them all to you.

Hope everything goes well and that they go back up themselves. A lot of the time in kids, the ITP resolves itself

Wow!!!

Hope you are both enjoying a bit of stress free time and that Tims count stays somewhere safe for the next while. All the worry must take its toll on Tim even if he seems laid back about it. Its been such a long time.

Ali

P.s. Am thinking that Dougie's platelets might have migrated over the atlantic to you, cos he is back to obvious bruising - haven't seen that since late october. Never mind, I am hoping its just a temporary dip.....

Hi Lauren, every time i tapered i was reduced to a shaking wreck on the sofa, feeling very sorry for myself and generally awful, one thing that helped was jelly sweets but i also put 2 1/2 stone on in weight so i dont think the jelly sweets helped that much! The big tapers were the worst 10mg week and if i remember right the day after the taper was the worst. Good luck you might not feel it as bad if you haven't been on the pred long.
Julia

Thats wonderful, there must be something in the water cause my platelets were 91 on Tuesday and then 82 on friday, and i haven't even started the nplate yet, so it is good to know that the nplate seems to be working for Tim. I have noticed when my count is high i don't feel as stressed, so hopefully he can just relax knowing they are high and the risk of bleeding is a lot smaller.

Just typed out a whole thread and lost it! GRRR! Don't have the time to retype it all.

21 month son, Finn, was diagnosed three weeks ago. His platelet levels are less than 1000 (they were undetectable) and they are not treating him unless there is some sort of active bleeding, etc.

I am nervous about a support group because I was sort of calming down about all of this until I read some of the threads and have seen how many of your children are being treated. So now I am a bit worried...

Basically I want to know if I will be able to see a visible difference in Finn when his levels are improving. It's been 2 weeks since his last blood test which was the same as the first and he is still covered in bruises. WE got insurance two days after he was diagnosed with this so we have to pay for EVERYTHING for 12 months as it is considered pre-exisiting but our dr and pediatric hemotologist have assured me that there is no need for treatment and the longer i wait for a blood test the better as there is more of a chance of seeing good numbers.

Also do I need to worry about chicken pox and keep finn away from public places - i read something about this but it mentioned something about steroids?

And is he in pain? he seems normal! THANKS!

The pred has got me to the 82, not the nplate, i haven't used the nplate before and i have just been approved for a program where the drug company is paying for the treatment. Being on the program, you have to meet certain criteria and one of them is having a count under 50, but the doctor would prefer it to be under 30 to start it, so thats why he didn't want to give me the nplate when the count was at 82.

So glad your count was 82 I'm not sure why they didn't go ahead and give you your shot though. here are the dosing guidelines for Nplate:

---

DOSAGE AND ADMINISTRATION

---

• Initial dose of 1 mcg/kg once weekly as a subcutaneous injection.
• Adjust weekly dose by increments of 1 mcg/kg to achieve and maintain
a platelet count ≥ 50 x 109/L as necessary to reduce the risk for bleeding.
• Do not exceed the maximum weekly dose of 10 mcg/kg. Do not dose if
platelet count is > 400 x 109/L.
• Discontinue Nplate if platelet count does not increase after 4 weeks at
the maximum dose.
• Do not shake during reconstitution; protect reconstituted Nplate from light; administer reconstituted Nplate within 24 hours.
• The injection volume may be very small. Use a syringe with
graduations to 0.01 mL.
• Discard any unused portion of the single-use vial.

He is at 86k! This was after his second injection of Nplate at double the smallest dose (I'm not sure what it is). He goes back next week, as you all know. He of course got his third injection today-holding at the second dose.

He was offered a splenectomy "while he is up", but I said no thank you.

So, maybe some of his stress can be relieved for a while. He is starting to have behavior issues, so he needs to stabalize.

So glad your count was 82 I'm not sure why they didn't go ahead and give you your shot though. here are the dosing guidelines for Nplate:

---

DOSAGE AND ADMINISTRATION

---

• Initial dose of 1 mcg/kg once weekly as a subcutaneous injection.
• Adjust weekly dose by increments of 1 mcg/kg to achieve and maintain
a platelet count ≥ 50 x 109/L as necessary to reduce the risk for bleeding.
• Do not exceed the maximum weekly dose of 10 mcg/kg. Do not dose if
platelet count is > 400 x 109/L.
• Discontinue Nplate if platelet count does not increase after 4 weeks at
the maximum dose.
• Do not shake during reconstitution; protect reconstituted Nplate from light; administer reconstituted Nplate within 24 hours.
• The injection volume may be very small. Use a syringe with
graduations to 0.01 mL.
• Discard any unused portion of the single-use vial.

Hello - is anyone looking at what is being posted in this section? It has been 5 days and no reply.


And while I'm signed in I'd like to add:
I was able to stay logged in for maybe 3 hours before I had to long on once again. Not good.

Sandi-thanks and I hope it does the trick for her too! I was so tired last night because we ended up "waiting" at the clinic for a long time and then I had to rush to get Caitlin to her choir concert last night so we didn't get dinner until 8:30, which I hate! The hematologist basically did say that I'm the parent and I have the final say in whatever happens regardless of what they suggest. The hematologist did say that splenectomy is more of a cure while Rituximab really doesn't work as well in children. (85% success with splenectomy vs 40% with Rituximab for complete response.) I heard from a different hematologist a few years back that the splenectomy rate was more like 60% to 70% so I think different drs look at different numbers. Right now, I am more worried about Caitlin missing school so I am going to contact the hospital to see what some of their other kids do. Caitlin doesn't fit the homebound status like the cancer patients. I am also out of days. I actually have a half day left that I can use, so the rest of my days will be unpaid days, which is ok with me as long as it is ok with my boss. They all tell me the same thing, that if it was their child...they would be taking off too rather than trying to find someone else to go with them, so that makes me feel a little better.

How is your daughter doing with Grave's? I don't know much about it. I hope she doesn't have to take tons of medication at a young age or that it isn't affecting her everyday life. I was on steroids and cyclosporin when I was 25 and it was NOT a good thing and it has side effects that still impacts me today.

I think I may have missed your birthday, Kim, but I hope you had a happy one!

thanks for the support people.

sorry for sharing in your thread solentgal, i just thought it would be encouraging to you to know that youre not alone.

Anyway, the good news is, his bleeding in the feces and his bloody vomits were a product of the excessive bleeding from the nose. The greater concern is internal bleeding like what happened during our very memorable holiday in HK Disney a year ago. Be strong everyone and more platelets

That's a good count, Mom! I go this Sunday(I think) for a count and am hoping I haven't dropped much. Last month I was at 54.

Please keep us posted on how your daughter is doing.

I was diagnosed with a count of 47 too. I was put on 60mgs of Pred for 10 days. I think it brought my count up, but not for long. Have you had any kind of treatment at all?

Could the cold and tingly feeling be from being anxious? Good luck and let us know what the hematologist has to say.

I haven't been too bad so far with it, i'll just see how i go over the weekend, i have only noticed myself getting a bit of a headache and a bit of Nausea every now and then, what sort of side-effects did you get just so i know to be aware of what to look out for?, cause the last time i had to taper down from a high dose i was younger and can't remember if i had any side-effects from it.

Going the right way, youl be glad to get off the pred though. 20mg drop might throw you for 6 though so id have a couple of easy days, i remember going into cold turkey every drop.
Julia

wow really sorry to here that keep stronge hunny x touchwood ali has not had it to bad with bleeds i thik id freak out , i freak out everytime she gets sick with just colds or sickness especial when she bruises my fingers are crossed for u both hun x

Yeah, hopefully they are on their way back down to a resonable level.

Today's count is........807, maybe this is the end of the hike, daily tests continue......

Vanessa :huh:

Well, I went in today to have my first nplate treatment and i had a blood test and guess what, i couldn't have the treatment today because my platelet count was too high!!! They are 82 today, and they have to be under 50 and they would prefer it to be under 30 before they start it, so he has dropped the pred frm 40 to 20 and now starting tomorrow, i am on 10mg and i will have a blood test next week and see what they are. I am happy they are 82 don't get me wrong about that, but just can't believe that now i am just about to start the new treatment they are too high to start it! I never would have thought i would have heard that come out of the doctors mouth lol

I have had four NPlate injections with very few slight side effects. The first week I had headache on the second and third days and a little nausea the second day. The second week I had headache the second day. Last week I had nothing. This week I have had a little nausea today, Thursday. I get my injections on Tuesdays. My count has gone 16,000, 31,000, 51,000, 73,000, 58,000. I am much happier than to be on prednisone.

Good luck to you.

Saw the hematologist this afternoon and we have agreed to start Rituximab next week. She said most of Caitlin's labs are in and they are normal which is great news but she hasn't talked to the rheumatologist yet. She will make sure the rheumatologist is ok with Caitlin starting the Rituximab first. They took more blood to rule out any hepatitis b before they start the infusion. She will go every Wed for the next 4 weeks.

Wish she didn't have to do this at all but maybe, just maybe...this will put her in remission for a long time! . Oh, and Caitlins count today was 13.

Dear Kim,

Wishing you a very special day full of all the things you love
:laugh: !

Love Vanessa