The Foundation for Children with Atypical HUS


She had cold with fever and we did labs they did went down, but as she got better they went back up dr. put her on antibiotics for ear infection. Yesterday was her last dose and last night she started running fever again. I don't really know what to do, we just had her labs done on Tuesday and they were all normal.

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Comment by Grace on July 18, 2010 at 6:25pm
I hope Anna is feeling better. I know it must be a stressful time for your whole family, you are in my prayers.
Comment by Svetlana Finley on July 17, 2010 at 1:13am
Anna still running fevers 103.2 and her blood in urine is up so does is protein. We will be doing full sets of labs tomorrow morning.
Comment by Cheryl Biermann on July 16, 2010 at 11:38pm
My advise would be to go back to the ER and have her labs run again after calling and letting them know the situation. I've told them before, this is what is happening, and we will be in in a little over an hour for a full set of labs, if you would like to see him, we will have the ER page you. The trick to the whole atypical HUS thing is to stop the damage before it starts rolling, because as we all know, once it gets rolling, it's so hard to stop. Anna is in my prayers.
Comment by lisa ann peterson on July 16, 2010 at 11:12am
chloe did the exact same thing 2 weeks ago but no ear infection she caught a viral bug that was going around.. we are still running tons of labs cause her H&H are low and creatnin is high.. we are getting more labs today and we are trying to hold off on plasma as long as we can because she has built up 41% antibodies.. hopefully annas fever goes away soon and she will be in my thoughts

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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.


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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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