Anyone Have Experience with ITP

This sounds so stressful!

When I was a home health aide I cared for a lady that had to go every month and get her blood tested. About every 3 months or so she'd have to stay and get a bag of IG.

She would look so haggard in the weeks leading up to that one visit where she had to stay that we almost always knew we'd be making a longer visit.

Having a good blood doc/Hematologist will make a huge difference. The one she had was so educated about her disorder. He changed all her meds and I believe he helped her life longer and with more quality than she would have had without him.

My husband had TTP which is similar to your ITP. However his was caused by cancer. His oncologist/hematologist recommended a surgery to cure the issue and an organ was removed.

Have your doctor recommend a hematologist and see if that helps. You need to find a way to give her the best life possible. I wish you and your daughter a long and healthy life.

the other S.

My oldest son who will turn 9 this Friday came down with ITP a few months before he turned 3. He was hospitalized for 3 days. His platelet count was also so low he required 2 rounds of IVIG. He had the bruising and petechia all over his body.

We followed up with a pediatric oncologist 3 weeks after his hospital release and his platelet count was back to normal. We continued to follow up with the oncologist every few months for a year. His counts were normal for all his follow up visits so after the year we were all cleared.

He has never gotten petechia ever again. He's had several viruses over the 6 years since he was had ITP and has never had any issues.

Sorry you're dealing with this. I know how scary it all can be. Hang in there and hopefully the doctor's can give you answers as to why this is happening ASAP!

I have a very medically fragile/compromised kiddo.

This is YEARS ago, when she had a trach...and 'unresolved' bleeding from it...along with petechia.

In any event, they dosed her with vitamin K...

Things resolved...but when we got more specific blood work from an oncology/hematologist...she came back with 'low factor five'...

Not a huge issue...unless an emergent need for surgery manifests.

petechia are present for many varied reasons.

It will make YOU feel better to go, and have it checked out completely!

best