The Atypical HUS Foundation

Cole has been feeling great...I still have not received a phone call about his Wednesday labs yet...But last night he had some blood in his stool. I called the doctor and she said not to worry just get him on a probiotic and some laxative and call if it continues...he has always had trouble going regularly. ....But why was there blood in his stool..has anyone else had this problem

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Comment by Alison Montes on April 7, 2014 at 10:09am
Thanks for the always had a bad problem with constipation . He even went to see a specialist when he was 4 and they said he was fine. Sometimes he would go weeks without a bowel movement. In the hospital they had him on Sena and Miralax and since he was released he has been going almost everyday. I have not noticed any more blood and it was never black or tarry. ..I also have been giving him a daily probiotic and tons fruits of veggies. Getting him to go the bathroom everyday has been a huge accomplishment for us and he seems to feel so much better.
Comment by Cheryl Biermann on April 7, 2014 at 9:51am

But, after having said that, yes, I agree with all Linda has said, please let us know when it clears up.

Comment by Cheryl Biermann on April 7, 2014 at 9:50am

Don't panic yet.  blood in the stool could be he has a hemaroid, and I know that's probably not the correct spelling, sorry.  This would really be on the surface, not in the stool.  If he strains to use the bathroom, this is probably what's wrong.  Blood in the stool can make the stool black, I know, Nathan used to have it all the time, either black and tarry or black and really gritty.  They told us it was another way his body was getting rid of clots.  

Comment by Linda Burke on April 3, 2014 at 10:03am

That's great - OneSource has 24/7 coverage available at 1-888-SOLIRIS  to assist aHUS patients and cargivers/parents.

You're absolutely right - aHUS is a complex disease.  Check out the tab "aHUS Materials & Info" to watch the aHUS videos made by physicians/researchers especially for families to better understand the medical aspects of aHUS.  The 'aHUS Bootcamp" gives an overview of disease basics, written by parents, for parents.

Comment by Alison Montes on April 2, 2014 at 3:10pm
I will do that...I feel like I have a million questions everyday. ..This is a very hard disease to fully understand. ..Thank you
Comment by Linda Burke on April 2, 2014 at 1:52pm

Hi Alison,

I can understand your concern - have you called Cole's case manager at 1-888-Soliris yet?  If not, please check in as OneSource can offer suggestions and information.


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The Atypical HUS Foundation 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.

Be proactive! Get the medical basics of aHUS, what lab values to monitor, and areas of concern...check out the "aHUS Bootcamp" and "About aHUS" tabs at the top of this page!
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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.
• • • • • • • • • • • •
It is estimated that there are about 2 cases of aHUS in the U.S. per 1,000,000 of population, and about 60% of aHUS patients are diagnosed as children. The condition is potentially life threatening, and either can be chronic or can recur at intervals.
more factoids...

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