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!

Ryan is low ... but not as low as usual!

More
13 years 3 months ago #25628 by Brandi
Ryan is low ... but not as low as usual! was created by Brandi
Ryan's platelets today were at 50,000. He had treatment 17 days ago, and with the past 4 ivig sessions he is normally no higher than 30,000 2 weeks later.

Yay for small victories! I hate to get my hopes up but obviously there is a part of me that is thinking maybe his body is slowly turning around? Who knows... but 50,000 sounds better than <30,000 so I'll take it!
- Brandi
Mom of 3 amazing boys (ages 10, 5/dx ITP 01/2012, and 9 months old)
  • nb9094
  • Offline
  • Just living the dream. nb9094@aol.com
More
13 years 3 months ago #25629 by nb9094
Replied by nb9094 on topic Re: Ryan is low ... but not as low as usual!
Thats great, I would think that would be a good sign. I wasnt so lucky today.
Neil
  • nb9094
  • Offline
  • Just living the dream. nb9094@aol.com
More
13 years 3 months ago #25680 by nb9094
Replied by nb9094 on topic Re: Ryan is low ... but not as low as usual!
Bradi,
when will they check ryans platelets again.
Is it the same with every one, my plateletsare fine? Its my antibodies attacking my platelets?
More
13 years 3 months ago #25701 by Brandi
Replied by Brandi on topic Re: Ryan is low ... but not as low as usual!
His hematologist has taken a sabatical from JH, which means we have to get use to this new one's approach. He would like Ryan to go in two weeks, instead of one week, because he was in the 50's and by now we know that he probably won't be below 20 for another 2 weeks. I am hoping, praying, crossing my fingers that in two weeks we'll still be at 50 or even higher! But I'm tired of getting my hopes up at the same time.

Its my understand that its your immune system attacking and destroying your body's platelets by mistake.
- Brandi
Mom of 3 amazing boys (ages 10, 5/dx ITP 01/2012, and 9 months old)
More
13 years 2 months ago #26037 by Brandi
Replied by Brandi on topic Re: Ryan is low ... but not as low as usual!
Update!

Another CBC today and his platelets came back at 27,000! In the past, we'd normally be scheduling another treatment after this "weeks" results, he is normally around 19,000. So we have another week free from treatment! yay!
- Brandi
Mom of 3 amazing boys (ages 10, 5/dx ITP 01/2012, and 9 months old)
More
13 years 2 months ago #26058 by Dean
Replied by Dean on topic Re: Ryan is low ... but not as low as usual!
With ITP, antibodies attach to Platelets, the Spleen sees it as a threat to the body and destroys the affected Platelets. Antibody is a protein produced by the body's immune system, when it detects harmful substances called antigens. Examples of antigens include microoganisims,(such as, bacteria, fungi, parasites and viruses) and chemicals.
Hope there are more "yays"!!!
More
13 years 2 months ago #26094 by KittieG
Replied by KittieG on topic Re: Ryan is low ... but not as low as usual!

Brandi wrote: His hematologist has taken a sabatical from JH, which means we have to get use to this new one's approach. He would like Ryan to go in two weeks, instead of one week, because he was in the 50's and by now we know that he probably won't be below 20 for another 2 weeks. I am hoping, praying, crossing my fingers that in two weeks we'll still be at 50 or even higher! But I'm tired of getting my hopes up at the same time.

Its my understand that its your immune system attacking and destroying your body's platelets by mistake.


JH - is that Johns Hopkins? If so, I have a wonderful hematologoist there. I don't know if he deals with pediatrics, but I love him. Let me know.
More
13 years 2 months ago #26120 by Brandi
Replied by Brandi on topic Re: Ryan is low ... but not as low as usual!
Yes, we go to Johns Hopkins.

His original hematologist left JH. His new one would like to do another ivig even with counts this "high" (above 20 is good for Ryan :silly: )

So looks like I was wrong... we don't get another week free of treatment.
- Brandi
Mom of 3 amazing boys (ages 10, 5/dx ITP 01/2012, and 9 months old)
More
13 years 2 months ago #26125 by KittieG
Replied by KittieG on topic Re: Ryan is low ... but not as low as usual!
I go to Dr Michael Streiff. I don't know if he works with kids but I love him as a hematologist - I drive all the way from DC to see him.

If he can see kids I'd try him - he's awesome and is wiling to work with you on treatment options - he doesn't try to push you into decisions.

Good luck - private message me if you need his number!
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