The Atypical HUS Foundation

Vicki Ravely
  • Female
  • Pasco, WA
  • United States
Share on Facebook Share

Vicki Ravely's Friends

  • Jonathan Aguallo
  • Cassie
  • Caryn Combs
  • Svetlana Finley
  • Phyllis Ann Talbot
 

Vicki Ravely's Page

Profile Information

Birthday
November 22
Do you have a friend or family member diagnosed with aHUS?
Yes
Are you medical personnel or an aHUS researcher with an interest in aHUS issues?
No
My child ( or myself as a patient) is best described as:
Question Does Not Apply To My Situation

Vicki Ravely's Photos

  • Add Photos
  • View All

Vicki Ravely's Blog

Soliris and Paul

Paul started Soliris in Aug, 2009. He has done fairly well, except for getting sinus and viral infections which have led to hospital stays both locally and at Children's in Seattle. His labs returned to "great" status over a week ago, but he retained so much water that he's had trouble walking (waddling is what he says he does) and couln't wear regular briefs and was very tired. He returned to school (Kindergarten) Friday, Jan 29, first day since school let out in December. Good weather is… Continue

Posted on January 30, 2010 at 6:27pm — 12 Comments

Comment Wall (8 comments)

You need to be a member of The Atypical HUS Foundation to add comments!

Join The Atypical HUS Foundation

At 2:51pm on September 24, 2009, Phyllis Ann Talbot said…
Vicki - hi there - I just got an e-mail from my husban'd aunt (Mary and George Parker) and they had asked for the website info I think that they are friends with a sibling of yours? Anyway - just thought it was a small world and I'd say hey!

Phyllis
At 11:24pm on July 20, 2009, Linda Burke said…
If you go to the Home Page, there is a Forum on Soliris issues. When you check out Heather Still's entry for June 17th, you'll see the Soliris contact link toward the end of the entry.
To reach everyone interested in Soliris, you could post the vaccination question in the Forum section. Your question and my answer will stay on our pages, but Jodi could also inform you about Coen's vaccine experiences if you post add an entry to the Soliris Forum. I'll retype my answer below in the Soliris Forum if I see your question appear there, in the meantime...
As far as Skyler and Hunter are concerned, we were just careful WHEN we vaccinated them - always after a plasmapheresis or with Skyler's most recent shot, within 48 hrs after Soliris. Hope this helps, Linda
At 11:44pm on July 16, 2009, Linda Burke said…
Hi Vicki!
It would be great if you could post Paul's experiences with Soliris on the Forum section of the website. Several members have wondered if Soliris might be effective for non-Factor H children. It is interesting that of the 3 aHUS children currently using Soliris, only 1 (Skyler) of the 3 is indentified as Factor H. Thanks in advance for helping other parents by sharing Paul's story.
At 10:02am on July 16, 2009, Phyllis Ann Talbot said…
Great to see you on the sight Vicki! Paul is adoradble! Hopefully we'll all gain information and support from being 'linked' through this website! Our Hyde has just turned 3 and is happy as can be.......very different than where we were last year.
At 8:54am on July 16, 2009, ALPHA MARKETING said…
You are welcome. I am glad the site is becoming a resource for families. I think it's great. Good luck with everything.
At 12:28am on July 16, 2009, Jodi Kayler said…
Welcome to the site. We are very familar with the nephrology team in Seattle. We used to consult with them quite a bit before Spokane had a dedicated pediatric nephrologist. It's nice to hear they are trying the Soliris as well. It has made Coen's life much better since starting it in April.

Coen did attend kindergarten last year and is moving to first grade. It was difficult at times especially when his energy level just didn't allow him to keep up with the other kids. After Soliris began, his final 6 weeks of kindergarten were by far the best weeks of the year.

I'm happy you made contact. Stay in touch. There is a Soliris forum and would love to hear how Paul progresses on Soliris.
At 11:06pm on July 15, 2009, Linda Burke said…
Welcome to the newly launched website for The Foundation for Children with Atypical HUS - thanks for adding so many nice pictures. Paul is such a cutie! We hope that this interactive site provides information and support to all those dealing with aHUS, while creating a central hub for medical personnel and researchers interested in aHUS issues.
I have two sons who were diagnosed with Factor H aHUS, and we've put Hunter's and Skyler's stories on this site. Since Paul has several things in common with Skyler, you may want to check out some posts related to his experiences. Skyler just turned 5 a couple of weeks ago and also will start Kindergarten in the fall. I specifically asked for AM Kindergarten so that we can do medical appointments in the afternoon. Skyler has been on Soliris since early April, with excellent results, so perhaps the Soliris Forum posts will give you some insights or provide fodder for questions.
One of Skyler's pediatric nephrologists trained in the Seattle area, so it may be that our doctors already know each other. Please feel free to offer information or to post questions, and we certainly extend an invitation to Paul's mother Caryn to join us as a website Member.
At 10:39pm on July 15, 2009, Svetlana Finley said…
HI Vicki,
Just want to welcome u here ;-)
 
 
 

Badge

Loading…

© 2018   Created by Deborah Lewis.   Powered by

Badges  |  Report an Issue  |  Terms of Service