Ugh so much for a remission

Jon's diagnosis 1 year anniversary was Wednesday. He was super cranky last night and today he's bruised up on his arms legs and under his eye. And he's been crying all morning. We aren't going to get a count because of how hard it is on him. If he starts to have a nose or throat bleed we'll go get one. This happened a couple months back and I left him alone for a couple days and he got better on his own, so I'm hoping for the same result this time. Dang stupid ITP. He's been planning a back yard bonfire for days, and so we are just gonna go ahead and do it and go about our normal business(working around the rages and tears) and see what transpires.

I brought him in because he began having chest pains that would drop him and he'd scream and cry. They didn't do a cbc at my request because he was already so upset and his bruising hadn't gotten any worse so I asked if they felt it could wait and they said yes. They did however work him up otherwise and say they think he is having arthritis in his chest. They said to treat him gingerly because he's having it in his hips as well and give him Tylenol until he can get to a specialist. They also suggested a safer carseat for him. So I went and bought that and got groceries. It's sad, he wants to walk at Walmart since he's a big boy now, but he can only go so far and the pain and exhaustion get the better of him. He made it through about 5 aisles before crashing and burning. Poor dude. He's outside in the back yard with his buddy right now and seems to be doing really well. We had our cook out and he's happy about that.

Oh I am so sad to hear about how bad he feels. How old is he? I honestly hope that things get better. Good luck.

Michelle - mom to Danica

Thanks. He's 4.

bless his heart, and you too. I know it is so scary for me at 52. I cant imagine one of my children going thru this stuff. I hope he feels better soon, and that you are getting your rest. ....it is important to take care of yourself!!!!! good luck, and i hope tomorrow is a better day!

I learned that. In the beginning I was going days and days and days without sleeping at all just watching him like a hawk and it finally caught up with me, so I try really hard to take good care of myself so I can be here for him when he does have his all nighters. He keeps waking up now crying and that's just so not him unless he's got a battle going on inside.

if u need to vent, come here. i work nights and will peek in occasionally. Maybe he will go to sleep soon....poor thing.

He's out again now. Poor guy. I keep putting him in bed and he comes out crying and gets in the lazy boy. that's his soother. Rocking in the lazy boy, so I'm just gonna leave him in it tonight. Thanks. It's nice to have a grown up to talk to now and then!!

my husband's lazy boy is nice to sleep in! it is one of those big man's chairs....lol

I gotta get one of those chair and a half things! O ya baby that's the stuff. My guy loves to rock, so he's pretty much taken over the lazy boy. Well i think I'm gonna go get some sleep while I still can.

good idea. goodnight!

He's got more bruises today. He's a touch weepy but his overall mood isn't too bad. I was told to keep him in his 5 point harness car seat until we know more about his condition, so I had to go out and get him a new one today. He finally hit 40 pounds so I needed to get one that I can keep harnessing him in, which aren't cheap. UGH. I feel better though, knowing that he's safer in this seat than his old one.

I hope your little guy is doing better today. Must be so horrible for him and you, at that age.

Michelle - mom to Danica

He went in for bloodwork Thursday and his platelets are still fine but his white count is still high. 16,000. His doctor is fed up waiting for the hem to do something about this, so she is going to get him a diff hem and try to get him into a research hospital. She did anothe ANA and SED rate too but we don't know the results of those yet. We will know more on Monday. His joints now hurt him so bad he can barely be a toddler and he feels sick and tired almost continuously now.

He went in for bloodwork Thursday and his platelets are still fine but his white count is still high. 16,000. His doctor is fed up waiting for the hem to do something about this, so she is going to get him a diff hem and try to get him into a research hospital. She did anothe ANA and SED rate too but we don't know the results of those yet. We will know more on Monday. His joints now hurt him so bad he can barely be a toddler and he feels sick and tired almost continuously now.