Sounds like mom speak to me.
yes you are normal.... LOL

I'm still trying to get 'back on track' I guess since I'm still dealing with low platelets and treatments. My worse platelet crash to date (not including diagnosis time) was the weekend I completely weaned my baby. I think it was the stress. I know it takes months for hormones to get back to normal once BF is done but so far my platelets are still a bit haywire.

Thanks everyone, I agree - relaxing is huge. The stress of all this (and the stress it's causing re: breastfeeding) is a lot.

Fresh Boarder - interesting...what did you find most helpful to get back on track? I wouldn't be surprised if the true underlying issue was hormone related since I know my hormones are pretty messed up since I have PCOS, too.

I talked to the acupuncturist and made an appointment for Sat. so we'll see how it goes. This is a different one (more affordable) than I went to for infertility, but she seems to think the supply issues (hormones i guess) are related to ITP, etc. All blood related issues somehow...

Hello everyone,

Just wanted to update you all on my ITP.

Yesterday I had my blood counts and they were 451 :lol: so I am now down to 60 mg/day of prednisone and continuing to taper next week.

Hoping and praying the counts do not tank as I continue to taper!!

Sorry Caitlin is reacting to the Rituxan. Hopefully it will work for her. I wish there were a leave pool for school (UNC Charlotte). If I miss class, I'm pretty screwed,lol.

Tim used to only respond to prednisone. Now he has no response at all. Only thing working now, and its only been four weeks, is NPlate.

It's important to relax. If you are constantly stressed your body has no chance to heal itself. Many of us never truly relax, especially those of us with more than one issue. relaxing is critical to well being.

My third course of treatment was IVIG (after the initial pred then dex failure.) I did 2 consecutive days every 4 weeks for several months until I switched to my currect treatment (rituximab). From my viewpoint here were the pros and cons of IVIG. Please remember this is just my experience:

Pros:
Quick response - usally raised my platelets from the 20's to the 140-180 range within 2-3 days
faster infusion time - the first infusion is given very slowly, but after they realized I had no reactions they put it on a pump and I would be done in about 2-3 hours
Quicker time to feeling 'normal' - With rituxan I'm out for at least 2 days, on the couch, running a fever. IVIG gives me a headache (see cons) but it's bearable and I can go back to work pretty quick.

Cons:
Response not sustained - My hema warned me of this before I started IVIg. For me (and most) I get an initial spike, then a pretty rapid decline. I was on a 4 week cycle
Lots of infusions - if we use Ritauxan as a comparison I go in for rituxan 4 times (1x per week for 4 weeks) and then don't go back for at least 6 - 7 months. with IVIg I would have gone in 12-14 times in that same time period (my main reason for Rituxan over IVIg)
Headache - pretty well documented side effect mine weren't severe but some people do get them pretty bad.
Chance of remission not high - the rate of going into remission with IVIg are barely higher than the spontaneous remission rate(with no treatment.)

I'm sure there are others but those would be my main ones.

I am keeping Caitlin home today. She still has a fever, but it is down to 100. Technically, I could have sent her to school with that since it is considered low-grade. But she is still complaining of her stomach hurting and is very dizzy when she gets up (feels like she is going to fall down), but I truly think this is just from laying down so much. I get that way myself when I've been sick and haven't sat up enough. She didn't have a chance to do her make-up work yesterday because she didn't feel well enough so I will let her do this today and hopefully the teachers will let me know today what she can work on at home to stay caught up.

I'm going to have to work from home because I have quite a few deadlines coming up. I could ignore it and take advantage of my day off, but then I know I will pay for it later by being super-stressed when I return. Not worth it!

oooooo yeah the steriods do that. personally i did not do well with the steriods. besides the whole my body no longer felt like my own. my mind, well lets just say that my mind was no longer my own either.

i became very paranoid....

any one have too high red count and the white

The first treatment I had when I was diagnosed was a combination of lots of prednisone and IVIG. I had much less than 10k counts at the time of diagnosis (probably around 1k, very low numbers are hard to get accurately). The IVIG bumped me up to 150k on the first day, 400k by week later, 200k the week after that, 50k two weeks later, and so forth. In other words, it worked really well, but not for long.

I only had a very mild, wheezy sort of reaction during the infusion, and when they slowed the rate, I was fine. I got a total of 140 grams of IVIG, in to 70 gram infusions, on consecutive nights.

Marcus

Come to think of it Liam did have a little bit of a runny nose about two weeks ago,its the first time he has had a runny nose in maybe two years or so ,,thanks , jenny

Ok, time to put on the brakes now!

Thanks Ali.like everyone i am a little frustrated, i hate feeling helpless,i suppose thats one of the worst parts of itp, as a parent you go through such a roller coaster of emotions.even my friends notice sometimes that i get really frustrated,thats why this site is great we are all experiencing similar emotions and up and downs.i dont mean to complain its just been a rough couple of weeks.on the bright side liam looks fantastic ,apart from lots of bruising on his legs and eating me out of house and home. At the moment his favourite saying is"BUT IM STILL HUNGRY!'' That amount of predi seems like alot,i hope you dont have to go down that path as well! all the best , jenny

Down by almost another 230 overnight, to 308.

Vanessa

I was the same, I was on 40mg and mine went to 72, and then the next week on the same dose, they went back down to 18, so i know how you feel. It does get frustrating. It could be that his body is fighting off an infection because i noticed when my platelets dropped, i was going to the toliet more and it was stinging, so i think my body was fighting off a urine infection, once my body fought it off, my platelets started to go back up slowly, so it could just be his bodies way of telling you he is becoming unwell maybe??

Hi, G. If my counts drop below 20, the treatment I get is IVIG. I'm usually down and out for the next three days, but everyone is different. It didn't make me sick like this until after I had my spleen out. I can't get Rituxan (Rituximab) here.

Good luck with the IVIG.

Hi

You sound like you are having a rough patch!

Here's our experience. Dougie has had 2 x two weeks of prednisolone. The first time, his count peaked at 50 at the end of the 2 weeks, the second time it peaked at 32 after 8 days. Just like yours, our doctor also said that any response was good - don't know how I would have felt if Dougie had previously had much better responses though. The specialist we have seen more recently said that he gets better responses treating with a 3-4 day course, but at 4x the dose (i.e. 4 x number of kg of body weight). Fortunately Dougie hasn't needed to go down this route, because it sounds like a lot to me!

Hope you see some improvement soon

Ali

lol, Yeah it is normal, i am not a mother, but my mother still tells me to be drive carefully or be carefull whenever i leave the house. Not only that, i still have to text her every morning when i get to work to let her know i got there safety lol. and i am 25 in June this year lol

hi everyone,we've had a buisy week with liam,his last blood nose was 2 hours long and had to spend a few hours in hospital. after being on predi for 6 days his count is only 35,his heamo tells me this is good{i know he is trying to make me feel better]
when liam first went onto predi it would boost his count up to around250+ now the highest its been is 40,he doesnt seem to be responding as well as he did.His heamo says as long as its going up a little its ok,has anyone else have this happen to them? if so what are the explanations given to them. thanks,jenny

where can i find that

Sandi, have you tried Nasalcrom? It's not a steroid, it's a nasal spray, it was Rx when I used it, not sure about now. Anyway, it takes about a week to kick in but it let me live with cats for a decade and breathe. You have to use it every day a couple of times/day. nasalcrom.com/ I had zero side effects. Apparently there is/was also an eye version (opticrom?) for people who get itchy allergic eyes. Erica

Have any of you had the IVIg treatment? If so what were the side effects if any and did your platelet count improve and if so for how long?

Thinking about receiving IVIg also had Rituximab treatment.

Thanks.

Yes it's normal - been there, done that!!!!

Sarah,
Where do you live? My friend is a doc here in MI, and she was saying that often if kids get some sort of serious illness, they can apply for state insurance and it will be retroactive...

C was diagnosed at 3.5 with a count of 11k...her hemo admitted her that day and she got IVIG. Part is what the doctors say, part of it is what you're comfortable with. She was old enough to get scrapped/bruised/do crazy stuff, but not old enough to understand things weren't safe yet...so for me, treating her was a good option. If she had a 0 count I think I'd wrap her in bubble wrap and keep her in bed all day (Ok, to be honest, I wanted to do that at a 40k count, too!) She was also starting preschool, so i felt safer with her at a higher count.

And...She was also a little clutz, which didn't help! (Seriously, after being diagnosed...girl walked into the corner leading to our kitchen and ended up with a bruise on her face. The wall had been there since she was BORN!)
JulieP

C started preschool about 2 months after she was diagnosed. Luckily, her counts were around 60k her first year.
I talked to the teachers/nurse/preschool admin before the year started about her.
She also had to wear a bike helmet outside or in the gym (since they rode bikes and such), and she was not allowed on the bouncer at school. She actually did pretty well with the restrictions. This year her counts are much higher, and I actually got all teary-eyed the first time she was able to go on the bouncer!

Do the teachers understand how serious ITP can be? Can you volunteer in the classroom and see if it just a rough bunch of kids or if they are all doing activities he should be? I gave C's teachers permission to talk about it with the other kids...i.e. C wears a helmet b/c she bruises easy, you have to careful and so on.
Really, NO KID ever questioned why she wore a helmet!
I love how oblivious and accepting preschoolers can be!
JulieP

Did they do a CBC? If not, I would get one done asap. If it came back with low platelets, I'd be having discussions with the head of DCF, the hospital ombudsmon, AND my state representatives. If a child came in with those symptoms it ended up being ITP and they didn't do a CBC, we'd be having talks. Lots of them.

When C started showing bruising on a Saturday, I wanted until Monday to take her in - I was afraid urgent care would think I was beating her. (11k count, so she looked bad!)
The ped said no way, that any doctor would have looked at her, seen her petechie and bruising, done a CBC and immediately realized it was a platelet issue.

Good luck. That's good that you're able to take her in and help out while this gets cleared up.

Chrunchybaby - I was also diagnosed when I had an infant (she was 8 months). I totally think this is hormone related for me. Sorry - no experience with acupuncture.