The Atypical HUS Foundation

Hello,

Has anyone taking Soliris found any typical methods of immune boosting, ie avoiding gluten, helpful?  My 11 year old daughter is on a bi-weekly dose of Soliris and spikes fevers intermittently which then require heavy doses of antibiotics along with a trip to the hospital.  I hate to cause her any more discomfort, but I was wondering if any one had found any homeopathic ways to boost the immune system while on Soliris.

Thanks,

Mimi

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Comment by Madeleine Lekas on October 6, 2016 at 1:49pm

Thanks Cheryl, Izzy is taking Florastar, purchased from Costco, every day.  I will also move on scheduling an appointment with a dietician.

Comment by Cheryl Biermann on October 6, 2016 at 9:48am

I've found Dieticians are a great help.  There are dietary issues with any renal failure, although, and GI problems are a big part of this disease too, so any dietary help you seek should be willing to consult with your specialists.  One thing most everyone is okay with are probiotics, although it's of some debate if the over the counter brands work.  I would definitely start asking about it.  Your specialists can refer you to someone.  We just found out, for instance, that our son's sleep apnea may be worse because, even though his levels were adequate for renal doctors, sleep experts found that adding extra iron helps the majority of their patients.  However, this had to be cleared with our nephrologists first.  Good luck. 

Comment by Madeleine Lekas on September 18, 2016 at 8:44am

Candace, thanks for responding.  I may look into the oils and talk the Cipro option.  Stay healthy!

Comment by Candace L Simpson on September 15, 2016 at 11:16am
My doctor keeps me on Cipro to help fight off any infections of any kind! Seems to be working (fingers crossed). I haven't seem to had any problem in that area and have been on Soliris since may 2016! I am 26. So not around as many germs as she prob is if she is in public school. Does she eat pretty healthy? I'm not sure if you do any of the essential oils but there are some that help with unkind system I have heard that teachers use and works really well! I haven't personally used them.

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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.

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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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