-
Vicki Ravely
- Female
- Pasco, WA
- United States
- Blog Posts (1)
- Discussions
- Events
- Photos (24)
- Photo Albums (2)
- Videos
Vicki Ravely's Page
Latest Activity
Vicki Ravely left a comment for Jonathan Aguallo
sorry I am so late in responding. Had a knee replacement in January and hadn't been on this site for quite a while. Paul is still on Soliris, his high BP issues continue (unlike the others on Soliris who's BP…
Vicki Ravely commented on Phyllis Ann Talbot's video
The Video was so touching, all our precious ones go through the treatments, with tears and smiles. I was so overwhelmed by watching Hyde's video-I couldn't comment on how much these kids go through. But, they persevere and we love them so.…
Photos posted by Vicki Ravely
Vicki Ravely commented on Phyllis Ann Talbot's video
The video is very powerful-cannot comment right now. Blessings, Paul's Grandma Vicki
Linda Burke commented on Vicki Ravely's photo
Too cute - what a great photo !
Vicki Ravely commented on Vicki Ravely's blog post 'Soliris and Paul'
How do you keep Nathan's cpap on? Paul is now supposed to "practice" wearing the mask while watching his favorite show-and it has to be turned on. Paul has an averse reaction to the pressure when it's on. Vicki
Cheryl Biermann commented on Vicki Ravely's blog post 'Soliris and Paul'
Good to get the update on Paul, it seems so funny he does the same thing with his CPAP as Nathan, on the nights he leaves it alone, he's up and going full blast, on the nights he fusses with it and pulls it off, he is lethargic and more likely…
Vicki Ravely commented on Vicki Ravely's blog post 'Soliris and Paul'
Linda Burke: the creatinine was very elevated and his blood cells started bursting. I do not see the labs. Mom knows, but we let the doctors tell us what is going on. Am sure some others were involved, but I don't know which ones. Vicki
Vicki Ravely commented on Vicki Ravely's blog post 'Soliris and Paul'
Boy, I had some typos in the last! Tired fingers? Vicki
Vicki Ravely commented on Vicki Ravely's blog post 'Soliris and Paul'
Jodi and Linda: Paul was fighting the sinus/endo virus thing, and the FEVER set off the hus when it went on so long (takes 14 days to get an endo virus out of the system). As to Doctors, Paul sees Dr. Jodi Smith-wonderful lady. Paul did get some…
Kerri Grey commented on Vicki Ravely's blog post 'Soliris and Paul'
hi Vicki, just wondering if you have any positive lab results for the ahus from genetic testing. How bad was Paul's flare up when he got sick while he was on solaris. Sorry for the curiosity my little man is prob gonna start solaris in the next…
Jodi Kayler commented on Vicki Ravely's blog post 'Soliris and Paul'
Hi Vicki, We are practically neighbors. My family lives and gets treated in Spokane. I have a 1st grader also on Soliris. I would love to know Paul's Soliris dosing and frequencey. Coen gets Soliris every 2 weeks, 600mg (since April). Coen also…
Linda Burke commented on Vicki Ravely's blog post 'Soliris and Paul'
Hi Vicki, glad to hear that Paul is doing better!! It seems unusual that Paul's aHUS was triggered- the labs would of interest to the other Soliris moms. Perhaps he was fighting thesinus and viral infections, with medical issues surrounding…
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
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)
- 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 ;-)
WELCOME - Friends, Family Members, Patients, and Researchers - JOIN US!
The Foundation for Children with Atypical HUS encourages patients and investigators to share information and explore options/resources as we work together to gain insight into this rare complement disorder. By increasing contact opportunities with researchers and medical personnel interested in helping the aHUS community, our stories foster a better understanding of atypical hemolytic uremic syndrome.
Sharing information, inspiration and support for one another, we seek to gather together people and knowledge as we strive to improve the lives of patients and families dealing with a diagnosis of aHUS.
NEW DIAGNOSIS OF aHUS?
Be proactive! Get the medical basics of aHUS, what lab values to monitor, and areas of concern...check out the "About aHUS" tab at the top of this page!
If your doctor has never treated a case of aHUS, please print out our 'Doc to Doc Registry' and ask him/her to contact a physician versed in the complexities of aHUS and new options for 2011 genetic testing and treatment.
************************
NOTE: Our 'Send a Message" function on each Member's page allows for private discussion of personal content. As with any social network, be cautious about giving personal contact information (home email info, phone number) until you have an established relationship with another person, organization, or associated website.
Did you know...
CFH (Serum Complement Factor H) is a regulatory protein. The secreted protein product of CFH consists of 20 repetitive units named "short consensus repeats" or SCRs (each approximately 60 amino acids). In patients with aHUS the last 5 "pearls" in the twenty pearl strand protein, SCR16 - SCR20, should bind to protect cells but do not- they are defective in one or more of the last 5 SCR locations. If they cannot bind or stick to the kidney to protect that tissue, the platelets clump into clots that affect the glomeruli of the kidney -potentially causing acute renal failure.
• • • • • • • • • • • •
It is estimated that there are about 300 cases of aHUS in the U.S., and it is most common with young children. The condition is life threatening and either can be chronic or can recur at intervals.
more factoids...
• • • • • • • • • • • •
It is estimated that there are about 300 cases of aHUS in the U.S., and it is most common with young children. The condition is life threatening and either can be chronic or can recur at intervals.
more factoids...
Help us fight the battle
Your tax-deductible purchase of one or more bracelets will directly fund research to help end the tragedy and heartbreak that aHUS families live with every day. Each bracelet has an appraised value of $825, but your purchase price is only $295.
Or you can donate a specific dollar amount-every dollar will help the Foundation for Children with atypical HUS atypicalHUS.50megs.com
Donations may be made via credit card or Paypal. If you prefer, checks made payable to The Foundation for Children with Atypical HUS may be mailed to:
Atypical aHUS Foundation
19 Olde Colony Lane
Cape Elizabeth, ME 04107
For pearl bracelet orders, please allow extra time for processing checks.
Badge
© 2012 Created by ALPHA MARKETING.
Powered by 
.
