Platelet Disorder Support Association

Join Us:

Become a Member

Support Us:

Make a Donation
    Remember Me     Forgot Login?   Sign up   •  Web site Help & Info
!!! DISCUSSION GROUP RULES !!!

1. You must be a registered website user in order to post and comment. Guests may read only.
2. Be kind and helpful, not rude and cynical.
3. Don't advertise or promote anything. You will be banned from the group.
4. Report problems to the moderators. THANK YOU!

Count of 1, but acting normal--treat or not?

More
8 years 11 months ago #56575 by gunderos
Count of 1, but acting normal--treat or not? was created by gunderos
My 19-month old was just diagnosed with ITP and has a count of 1. Other than that, she's acting totally normal, no nosebleeds or gum bleeding, and even had a little cut a few days ago that clotted okay. We're leaning towards waiting on treatment, but wondering:
- How likely is spontaneous brain hemorrhage, given count is so low?
- Has anyone else had numbers this low and any experience?
- How bad have side effects of the IV treatment been for folks out there?

She hasn't been sick in a long time, but did have 2 vaccinations just a few weeks ago, so our hunch is that's what led to this.

Thanks for any thoughts.
Dana
More
8 years 11 months ago #56576 by alisonp
Replied by alisonp on topic Count of 1, but acting normal--treat or not?
In the UK, doctors increasingly treat based on symptoms not counts. Studies show that there is no statistical difference in outcomes. All treatments (potentially) have nasty and sometimes dangerous side effects.
More
8 years 11 months ago #56578 by Ambeck8
Replied by Ambeck8 on topic Count of 1, but acting normal--treat or not?
My son is older than your daughter, but was diagnosed a month and a half ago and at the lowest was 1000. While I appreciate all of the help from the physicians and the fact that we can access the "needed" treatments, he has been put through the ringer with all of the side effects from the IVIG and now Steroids.

My opinion, if I could go back, I would have waited it out a week or two with more precaution against injuries to see if his body would've kicked in on its own.
The following user(s) said Thank You: gunderos
More
8 years 10 months ago #56651 by gunderos
Replied by gunderos on topic Count of 1, but acting normal--treat or not?
That's really helpful. Her count went up to 5, but then was at 4 a few days later. We're thinking of still waiting, but getting more nervous!
  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
More
8 years 10 months ago #56653 by Sandi
Replied by Sandi on topic Count of 1, but acting normal--treat or not?
A count of 4 and 5 are the same. Counts fluctuate constantly. Sometimes even the same blood sample will give two different results. The usual margin of error is about 5k.
Moderators: jaycharness
Platelet Disorder Support Association

Donate

About

Stay Informed

Follow Us

IMPORTANT!

The Platelet Disorder Support Association does not provide medical advice or endorse any medication, vitamins or herbs. The information contained herein is not intended nor implied to be a substitute for professional medical advice and is provided for educational purposes only. Always seek the advice of your physician or other qualified healthcare provider before starting any new treatment, discontinuing an existing treatment and to discuss any questions you may have regarding your unique medical condition.


Platelet Disorder Support Association
8751 Brecksville Road, Suite 150, Cleveland, Ohio 44141
Phone: 1-87-PLATELET | 877-528-3538 (toll free) | or 440-746-9003
E-mail: pdsa@pdsa.org


© Copyright 1997 - 2025, Platelet Disorder Support Association. All rights reserved.
The Platelet Disorder Support Association is a 501(c)3 organization and donations are tax deductible to the fullest extent allowed by law.


Privacy Policy and Terms of Use