Really, petikia AGAIN!?!?!?!

Hi all,

Just had to vent a little...Joshua's petikia's are coming back in full tilt...I know that dosn't mean a thing, but he was down to 58 last week and I think his numbers have continued to drop since then. I wonder if he's still sick even though he seems to be over his cough, his chest still sounds a bit junky....but...but...oh poo, I just want this thing to go away! No bruises yet thankfully and no bleeding from the mouth like last time and his pred stayed at 25mg/day courtesy of ME! LOL I thought the numbers would hover low, but not bounce around like this!? He went down to 38 when dx with bronchitis about a month ago, was on 50mg of pred (I think) and bounced back on his own, hovered around 80-90, so why low now?!? Rrrrrrrrrr......sorry, okay now I think I feel a little better, worse, dunno... :S
Thanks for "listening" I know you all understand!
Angela (mom of Joshua)

We are always here for a good venting. We just went through the same thing, my daughters body looks as bad as it did 6 years ago when this whole thing started.....ugh!

Never a dull moment, but it is nice to vent!

Angela -

Be careful with the prednisone dosages - it has to be tapered gradually on a schedule, depending on the amount and length of time he's been on it.

Also, if he's ill, pred could delay his recovery.

Wow - I can't imagining a poor child having to deal with ITP. How unfair!

I was lucky enough to not developed the condition until my late 30's.

Best of luck!

Oops! Can't delete an accidental double post??

Hi everyone, suspicions confirmed, Josh's numbers were down to 37....Now we have to go see hem before Christmas. They want to discuss other options they say that the pred wean has been slowly decreasing as has his numbers, but thats not true. Ever since he's been on the oral pred his numbers have been good between 80 and 100. Last week they were 86 and he was on 25mg, they told me to continue the wean, I wasn't comfortable with that since he's been sick. So I phoned them and left it at 25mg. This week they are down to 37...me thinks it has nothing to do with the pred. Last time he had bronchitis his numbers went down to 38 and then back up to 80's within days. I think his numbers will go up again, he's just not well right now. I think the Cellcept has remotely kicked in. And the pred wean is on a tight schedule, its in conjuction with heart transplant team, they monitor all his treatments.
Anyways, was very deflated last night after finding out the numbers, this ITP thing dosn't seem to be getting any easier. I think the closer we get to Christmas the harder it is since we always seem to be in trouble right around the holidays. Sad for the kids mostly. I just want JOsh to have a break from everything, he's so tired of the CBC's every week....thank you all for your support it sure means alot to me. Someday Ill get out of this funk that Im in!
Angela

Sorry to hear your going through this, but to be honest 37 is a wonderful number. I would kill to have my numbers at that level. He seems to really respond well to the pred cause on 25mgs of pred, i never got those types of numbers. My counts are all over the place at the moment, highest would be 25 and that was last thursday and then i had two bags of platelets for surgery and it went up to 98 on thursday, but by tuesday this week they were back down to 13.

I read your on a tight schedule with needing to wean the pred, but honestly, i would try to get the doctors to do it more slowly because he can get servere withdrawals if it is done too quickly.

I know what Tad Moody means about the pred delaying his recovery. I had appendicitis last week and the pred i am on was masking the infection cause the appendix looked normal, but when they sent it to pathology, it was starting to show signs of infection, so it can mask infections which could delay in getting diagnosed with something.

It is fine to feel this way, especially when your getting bombarded with so much information and different treatment options, it can feel overwhelming. I feel the same every now and then, but then i think there are so many people who are so much worse off then i am and i start to feel lucky thats all i have got and nothing else.

Angela, has Joshua had a heart transplant or waiting for one? Just wondering cause you mentioned the tx team. My son was born with a congenital heart defect. He also has MS...not ITP. My other son has ITP, lol. Its a medical ward around here.

Sorry Im only back on now...Dawn, my son had a heart xplant when he was a baby, many many many complications surrounding that including stroke.
Update on the ITP thing, his numbers dropped before xmas to 37 ish and after were in the 60's. He was quite safe so I gave him a break from the CBC's. He had bloodwork done again this past week but I havn't heard anything yet. He had pneumonia now and is back on antibiotics for the 4th time. Hem told me that that will draw his count down too, as well as being sick will affect his numbers. He's down to 15mg of pred which is awsome because it dosn't seem to be affecting his numbers. When he gets sick they generally slide down to 30's and then back up to around 70's. Which is just fine with me. The pred has given him too high bp, but he's on meds for that too. The cellcept is still in play too. This bug going around here seems to have become somewhat of an epidemic! We all had it and it seems to not go away, have had it since October.
I hear you about the medical ward around the house!!!!! I have meds, syringes etc falling out of my cupboard! LOL Kinda looks like a peds ward! LOL Joshua was tube fed via G-tube for most of his life and only recently had it taken out but now the hole won't heal closed, so we require constant dressing changes, so I have those supplies kicking around too!!! LOL Its good to talk to other people who have children with special needs because there are sooooooo many parents out there who just don't understand.

Hi Angela,

I looked at the board on Monday and wondered where you were! Its good to hear that your son is doing ok in terms of ITP,although the rest sounds a bit scary. I hope that he recovers quickly. It must be so hard to manage several problems all at the same time, trying to ensure that the solution for one isn't a disaster for another - you have my complete admiration! Makes me count my blessings, which isn't a bad thing.......

Fingers crossed for a quick recovery, Ali xx

Hi Ali its so nice to know that I was missed!!! :laugh: I missed being here too...should have come back sooner but so much to deal with right now. Everytime I come on here I learn more, its amazing, but my children's hospital still hates when I research stuff, guess they want to be in the "know" all the time! Im so happy that Joshua is holding, and I suspect that either the MMF has kicked in or something else has changed, because it dosn't seem to matter what we do with the pred, he goes down to 30s if sick or 60 to 90 ish when not sick. His legs look like hell because the petichea come and then take forever to go away, but other then that his mouth inside looks better then it has since August, and no bruises. He has had some blood in his nose, but just mixed with mucous not running out...could be from the woodstove going all the time lately. Have put the humidifier on this morning in hopes it will help. Funny thing is his numbers were at 67 DESPITE the fact that he was on antibiotics, and DESPITE the fact that he was sick and DESPITE the fact that I had weaned another 5mg of the pred.!!!! Who knows where he's at now, but in my eyes he's safe. Im starting to get this, "Don't look at the numbers" thing! LOL Its about time...dosnt keep me from checking his mouth and legs twice a day though! :laugh: I feel so so sorry for the newly dx!!!! Wish I could just hug everyone but this site is like "coming home"!!!!