The Atypical HUS Foundation

Our 8 year old daughter Devon was recently diagnosed with aHUS on March 5, 2012. She spent 5 weeks at CHOC hospital in Orange County CA. It was an incredibly difficult time as you all could imagine. We feel very blessed that she was diagnosed within the first 24 hour and were/are thrilled with the nephrology and hematology teams.  We are still waiting for blood test results to come back from Iowa.  They originally told us it would take 6-8 weeks now they are telling us 3-4 months. Does it always take this long?

She is currently having Soliris treatments every other Friday.  

Our daughter is doing very well. The big problem she is still having is stomach aches. She has had them from the very beginning...even the two weeks prior to being diagnosed.  We have had X-rays, sonograms, told all the doctors at CHOC, brought her to see her pediatrician,  and now seeing a naturopathic doctor. Has anyone else had this problem?  I would appreciate any feed back.

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Comment by Diane schaller on August 22, 2012 at 1:35am
No more stomachs for our sweet girl. We had great success with taking Devon to a naturopathic doctor.  Dr. Andrea Purcell, I feel, fixed Devon's stomach aches. We saw a lot of doctors without any success. They took x-rays and ultra sounds and couldn't come up with anything.  Devon's stomach aches started from the very beginning....one of our first sign's something was wrong.  They continued through her 5 week stay at the hospital and then at least an additional month after she was released.   Dr. Purcell, not knowing anything about aHUS, did her research and reviewed Devon's records before Devon's  appointment. At her appointment she asked a lot of questions....pregnancy, birth, nursing, if she ever had formula if so, what kind, is she a neat or messy child etc.  Finally, she suggested the following: Vitamin D 5000 i.u. (1 per day) 9am (low on blood work) Digestive enzymes 2-3 per day w/ meals Oreganol (2 per day) 1st and last of day (one month)  Probiotics -5 (2 per day) 9am - 3pm Nux vomica 6c (2 balls) right before bed (one month)  Her stomach aches decreased the first two weeks and then completely went away.  She hasn't had one in 3-4 months.  Thank you all who gave us your feedback.
Comment by lisa ann peterson on May 26, 2012 at 10:00am
My daughter Chloe has had stomach aches since day one and they even make her puke. She has been taking Zantac for four years and we are just now trying to wean her off of that med. hope this helps.
Comment by debbie thelwell on May 23, 2012 at 5:45pm
Hi my son regularly complains of stomach ache on a bad day he will Geoff his food lethargic and then I start to worry but usually after 24-48 hrs he's ok
Not sure if it's connected
Debbie
Comment by Diane schaller on May 17, 2012 at 4:01pm
Thank you all very much for great information. My family and I truly appreciate your help. I will post when we figure this out.
Comment by Jessica Rios on May 17, 2012 at 12:29pm

Hi Diane, 

My sister also complained about severe stomach pain and doctors found a perforation in her colon. She had a colostomy until approx 1.5 months ago.

Comment by Cheryl Biermann on May 15, 2012 at 12:15pm

I cannot add anything further to the discussion except to say that Nathan has had issues from the time he could speak.  Most of it was naseau and diareha.  The nausea is realated to aHUS directly, because kidney patients of all kinds have lots of nausea, the other was usually indirectly caused by aHUS from catching various bugs in the hospital like roto virus. 

Devon might benefit from Zantac, Previcid or other meds if it is nausea, if it is pain, I'm not sure I know what they'd do for that.  Nathan only had stomach pain when he was in a very active phase or on dialysis. To treat pain Tylenol was used, never IB Profin because of it's potentially harming the kidneys.  Sometimes the pain comes and goes the longer they get from the episode.

 

Comment by Linda Burke on May 14, 2012 at 12:23am

Hi Diane,

Unfortunately, there have been other aHUS parents who have mentioned concerns about stomach issues- it's been difficult to gather info on this particular concern.  There are some references in the literature that links  aHUS activity with the possibility of potential damage to multiple organs/systems such as the heart, brain, GI system, and bowel.  I'd love to see an aHUS researcher or clinician produce a 'whitepaper' on multi organ involvement and aHUS, but here's my attempt to gather such information (in an earlier blog I wrote) http://atypicalhus.ning.com/profiles/blogs/ahus-complications-poten... .  You may have an interest in reviewing some informative materials created by Alexion, makers of Soliris.  The links below might serve as a starting place for your exploration of the topic, and their citatations on the scientific evidence might prove valuable for Devon's doctors.

If you have not yet called 1-888-SOLIRIS to speak with Alexion staff about this issue regarding Devon's stomach aches, I urge you to contact them and register your concern.  Please keep us posted, wishing your family all the best!

An overview of the disease, with new info and implications for multiple organ involvement
http://ahussource.com/hcp/disease-overview

Kidney issues are just the tip of the iceberg.....this 'iceberg slide' is a great graphic for the many issues faced by aHUS patients.
 
Technical information for Healthcare professionals:
Comment by Svetlana Finley on May 12, 2012 at 11:42pm

HI Diane, Anna went thru stomach pains they couldn't figure it out what cause it, GI doctors prescribed her several different meds for 6 weeks corse, to calm her stomach and then it got better. 

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