The Foundation for Children with Atypical HUS

Yippee!!! We got home a few minutes ago and Hyde's sleeping on the sofa! Sorry i didn't update earlier but we had kind of a rough evening/night/morning with blood pressure, itching, and pain for Hyde - so didn't want to jinx anything until we were on the way home. Hyde didn't get too much sleep last night - think the rash and the surgery finally caught up with him and he was fussing pretty much every 5 min or so but seems better today - and like's taking his medicines at home bettr than in the hospital - so hopefully we can keep up with Tylenol/Benadryl for him. His BP's still aren't great - but we can adjust that from home - think this will be a little hairy for a while. Other than that - things are good - Ruthie is VERY excited for us all being home and so are Bill and I.

Thanks so much for all the thoughts and prayers - hopefully Hyde will be up and running fairly soon and definitely in good shape to eat cotton candy to his heart's content in April at the hike.

Love you all -
Bill, Phyllis, Ruth, and Hyde

Views: 0

Comment

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

Join The Foundation for Children with Atypical HUS

Amy Swarbrick Comment by Amy Swarbrick on March 5, 2010 at 12:16am
Yay, I am so happy you guys got to go home. Isn't it magical to sleep in your own bed! Hope things with Hyde get better now that he is on his own turf.
Linda Burke Comment by Linda Burke on March 4, 2010 at 10:46pm
Whoo Hooooo- so happy that you're all back home! It truly seems that everyone heals so much faster in their own little nest. Skyler's BPs flutuated for about 4 weeks or so after beginning Soliris, which meant frequent BP med adjustments - almost as if their little bodies take a bit of time to recalibrate to the new situation. Wishing you all the best ....
Svetlana Finley Comment by Svetlana Finley on March 4, 2010 at 6:30pm
Awesome!!! Welcome home!! Just want to let u know for Anna Benadryl doesn't work very well, she uses Hidroxizin (i am not sure of spelling, but it is prescription)other name for it Atarax.
Heather Still Comment by Heather Still on March 4, 2010 at 5:58pm
Welcome home!!!!!

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...

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

Loading…

© 2012   Created by ALPHA MARKETING.   Powered by .

Badges  |  Report an Issue  |  Terms of Service