The Foundation for Children with Atypical HUS

Hey there everyone - just a quick update to let you know that it looks like we are all set for Hyde's surgery on March 1st. The plan is for us to be admitted on Sunday, Feb. 28th and we don't have a set time yet but the scheduler said 'noonish' so it definitely won't be first thing in the morning :-(. Hyde's going to be THRILLED to not be able to eat and drink until then - oh well.

If you know anybody that's going to want to be updated on how everything's going Monday - have them get on this carepage - this is how we'll try to post updates once he goes back and as we get information.

The tentative plan is to try to do it laproscopically (to try to take advantage of the 90% chance they don't get near the peritoneum) but the surgeon will be able to switch mid-stream to an open procedure if anything makes him uncomfortable or if there are any problems.

Think that's it for now - Aunt Sarah and Uncle Warren are getting here Sat night and will be staying until Tuesday and Grandma and Papa Talbot will be getting here Sunday and staying 'until we don't need them anymore' ;-). The Tallant's are all here and lined up as well as multiple friends and neighbors as well as all the various church families we can claim ;-) - so we couldn't be more blessed by all the love and support we have.

We'll update everyone as we know more - in the meantime - just to leave you with the kind of character Hyde is - I told him this afternoon to go to timeout for something (can't honestly even remember what) and he said 'Mommy - can't we get a comfier bench?' Jeez louise!!!

Thanks againg - and keep the thoughts and prayers coming - especially next Monday!

Bill, Phyllis, Ruth, and Hyde

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Linda Burke Comment by Linda Burke on March 1, 2010 at 3:16pm
Thinking of you today- sending a hug along with our prayers for a successful (and uneventful) surgery for Hyde.
Amy Swarbrick Comment by Amy Swarbrick on February 24, 2010 at 11:46pm
Till noon...yikes! He'll love the popsicles after his surgery though. We will be thinking of Hyde and your family and will be praying for the best.
Jodi Kayler Comment by Jodi Kayler on February 24, 2010 at 10:08am
Well, I think he does deserve a comfy bench for time out. We'll all be thinking and praying for cutie pie Hyde. Hopefully, BP meds will soon be gone! Or at least decreased.
Heather Still Comment by Heather Still on February 24, 2010 at 8:07am
Praying for your family!!!! You are blessed to have such great support in all of this. Will be looking for updates on his Carepage. Take care!!!!!
Phyllis Ann Talbot Comment by Phyllis Ann Talbot on February 24, 2010 at 6:50am
Thanks everyone! Lisa - it's actually a carepage - works just like caringbridge - just a different company that I think our hospital works with - basically the same - just have to go to www.carepages.com and then sign up and search for his page. thanks!
Linda Burke Comment by Linda Burke on February 23, 2010 at 10:57pm
Wishing you all the best - you''ll be in our thoughts and prayers!
lisa ann peterson Comment by lisa ann peterson on February 23, 2010 at 9:52pm
lil hyde will be in my prayers on sunday and for sure on monday.. is his care page a caringbridge

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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.

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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.
  
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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.
  
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