Welcome, Guest
Username: Password: Remember me
  • Page:
  • 1

TOPIC: frustrated at zero

frustrated at zero 2 years 6 months ago #55155

  • HeidiSt
  • Offline
  • Posts: 5
  • Thank you received: 1
Yup! zero! I'd love to hear from anyone else whose child (or themselves) had had a test come back zero.

My 7yo boy was diagnosis as chronic ITP a couple of years ago. for the most part, he just bruises easily and his numbers have sat in the mid 20's. He's had interventions (IvIg and prednisone before) and he always reverts back to the mid 20's with few symptoms so we were put on the watchful waiting program.

This last week, he had a low grade fever and then some diarrhea which turned bloody. So I took him in and he has zero platelets. His words "my worst nightmare".

So we get sent home with a prednisone presciption. :dry: and are supposed to follow up again tomorrow with them. and with his dr on Tuesday..... but seriously. ZERO. I really need to know that other people have had a zero.

I have been a reader of this site since diagnosis.this is my first post.
I am frustrated at the options. I am frustrated with the lack of reasons.

Please Log in or Create an account to join the conversation.

frustrated at zero 2 years 6 months ago #55165

  • Sandi
  • Away
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12426
  • Karma: 11
  • Thank you received: 2318
Heidi:

Yes, many others have had counts of zero. I know it sounds scary, but symptoms matter more than the numbers (or lack thereof). It's possible that his illness caused the drop and he will rebound in a week or so. In the meantime, try to stay calm and wait it out. Some people respond very quickly to Prednisone. I am one of them and would have counts of about 75k after three days on the drug.

Please let us know how the follow-up goes, okay?

Please Log in or Create an account to join the conversation.

frustrated at zero 1 year 9 months ago #58872

  • Owensmom
  • Offline
  • My son was diagnosed with ITP in 2013 at the age of 6. He's had win-rho, ivig, rituximab, steroids, promacta, and 6-MP. We are currently on a plant-based diet which we started September 2016. We're trying to avoid a spleenectomy.
  • Posts: 13
  • Thank you received: 3
Hi HeidiSt,
I see this post is a bit older, but no one has responded. So just in case you visit this site again, I'll let you know that you aren't alone. My son's first test, which is what diagnosed him, was zero. He was only 6 years old and I thought he was dying. I'd never heard of ITP and despite my biology background, I couldn't remember what a platelet was. He was treated and released. I was so sure we would be part of the 80 percenters who have this condition acutely, but I was wrong. Three years later and many many treatments here we are. We have seen single digits several times. About a year ago he hit three. It's freaking scary every time. I wish it were me. Sometimes I wake up in the morning afraid to look in his room because I don't think I could handle worse case scenario. But so far every morning he wakes up and I get a hug and I know how blessed I am. Worrying doesn't help, but when it comes to your kid, it's like telling someone not to breathe. All I can say is hang in there mama and stay positive. Your boy needs you to stay positive. Show him he can still live a beautiful life even with these challenges.
The following user(s) said Thank You: Keatonsmyangel, maria3132, Turbo01

Please Log in or Create an account to join the conversation.

frustrated at zero 1 year 5 months ago #60266

  • Shari
  • Offline
  • Posts: 3
  • Thank you received: 0
Not zero, but 2000. SO...pretty much the same thing. And they said they had to really work hard to count the 2000. Whatever that means. I feel your pain. As this was over a year ago, I would love to hear they came back up?

Please Log in or Create an account to join the conversation.

frustrated at zero 4 weeks 22 hours ago #65596

  • Turbo01
  • Offline
  • Posts: 11
  • Thank you received: 0
Owensmom your post made me so emotional. You pretty much summed up my dealings exactly. My daughter is 5 in a few weeks and about 4 months was diagnosed with itp. Everyday is a struggle for me as I don’t know what tomorrow will bring. I dont sleep well and feel like I can’t breathe cause there is a rock in my chest. My daughter responds very well with ivig and she has had it twice within the 4 months but then we get drops and peri his and outputs appear. As a matter of fact I found 3 small petechia on her yesterday when 3 days prior her count was 153k. I just don’t understand the rapid drops.

Please Log in or Create an account to join the conversation.

frustrated at zero 4 weeks 19 hours ago #65598

  • HeidiSt
  • Offline
  • Posts: 5
  • Thank you received: 1
I want to update from the original post where my son was at zero. It did pass. The prednisone brought his platelets up temporarily and the rest of rather uneventful. Shortly after, PDSA emailed a research paper that said....
they didn't know why (other than they know it essentially supports the immune system), but vitamin D was showing success with some ITP patients. We talked to our family doctor and hematologist and started a 1000mg vitamin d supplement. His platelet count has been consistently between 60-80 ever since. (from regular counts below 20) and symptoms (bruising etc.) have been highly reduced.
Anyhow, talk to your doctor, & I would be interested in if others have also noticed a count increase with taking vitamin D.

Please Log in or Create an account to join the conversation.

frustrated at zero 4 weeks 19 hours ago #65599

  • HeidiSt
  • Offline
  • Posts: 5
  • Thank you received: 1

Please Log in or Create an account to join the conversation.

frustrated at zero 4 weeks 4 hours ago #65600

  • Hal9000
  • Offline
  • Give me all your platelets and nobody gets hurt
  • Posts: 1146
  • Karma: 10
  • Thank you received: 136
Heidi, thanks for the info.
On Prednisone. Do you recall how high counts went when on just (high dose?) Pred? Did they go up to 60-80 range, or, all the way up to normal levels?

Please Log in or Create an account to join the conversation.

  • Page:
  • 1
Moderators: jaycharness

BBB Cleveland logo GuideStar Seal NORD Member Badge 2018THSNA logo