Wednesday, February 12, 2014

WAGR Wednesday- "Who Does Number 2 Work For?"

(Title credit: Austin Powers...)

It’s WAGR Wednesday!  Every Wednesday I write about one aspect or another of our life that is part of WAGR Syndrome.  Today I’ll write a bit about the unpleasant, and typically unspoken in most public realms, topic of constipation.   
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This may get a little “real” people, so if you don’t want the whole scoop on the lack of poop, read no further.
At some point, and quite often it lasting into adulthood, people with WAGR Syndrome will struggle with constipation.  There are many theories behind where this struggle originates:  hypotonia (low muscle tone), vincristine (a chemotherapy that is a standard in the battle against Wilms Tumor), dietary origins, sensory issues…the possibilities are endless.  First I’ll write about the struggles Evie has had, and then I’ll talk about some of the suggestions that other families in our support group have shared on how to overcome constipation. 
Aside from the ordinary problems that “typical” babies have with irregularity, Evie experienced the side effects of vincristine when she was being treated for Wilms Tumor in 2005-2006.  Knowing that a side effect of vincristine is constipation, the oncologists we had immediately gave us a standing prescription for miralax and lactulose.  Miralax is considered the “easier,” less aggressive treatment for constipation.  We’d mix it into Evie’s drink each morning and go about our regular business. 

However, we ran into a complication with the vincristine that isn’t common.  We had been told that between the two chemos that Evie was on (vincristine and actinomycin D), the “friendlier” one was vincristine.  Actinomycin D could cause blood counts to drop, thus creating immunosuppression, and would often cause nausea; while vincristine might cause muscle cramping, muscle weakness, constipation, sores in the mouth and throat and hair loss.   
Despite the cautionary words regarding the potency of actinomycin D, vincristine turned out to be our greater nemesis.

Evie developed mouth sores and a sore jaw which prevented her from drinking enough to stay hydrated.  Because the vincristine was the chemo used weekly, we really didn’t have the choice to “hold” the dosage very often; she needed to get the vincristine to be probably treated.  The result was that we had to give her oral morphine so she would keep eating and drinking, thus staying hydrated and getting enough nutrition to combat other side effects.  

The vincristine also caused Evie to throw up EVERY TIME she got it.  (I can also say it happened exactly 5 hours after she would receive the vincristine…how’s that for predictability?)  The oncologists couldn’t figure out why this was happening, because a side effect of vincristine was NOT supposed to be nausea.  As it happened, one day I was talking to our general practitioner about how Evie’s treatment was going, and I mentioned the correlation between vincristine and vomiting.  The GP, whose son also had been treated with vincristine said, “Are you giving her lactulose?”  I said that we hadn’t been because we hadn’t noticed any constipation.  She suggested that we start regularly giving Evie lactulose regardless of if she were constipated or not.   
Her theory was that the vincristine was causing bowel spasms which in turn were causing Evie to vomit.   
I followed her directions and immediately Evie’s vomiting after vincristine ceased.

There is a very common theme in our WAGR support group about constipation.  Following Evie’s chemo treatment, she had repeated issues with constipation, one which was so bad we were a day away from being admitted to the hospital (according to her GP.)  Our greatest defense against Evie getting “stopped up” is encouraging her to go #2 every day, as well as ensuring that she’s staying hydrated.  I have also found that yoga stretches like “bridge,” which stretches out the stomach area, is helpful.

Others in our support group have suggested:
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  •  Pear Juice/Pears
  • Prune Juice/Prunes
  • Applesauce
  • Flaxseed
  • Regular Miralax
  •  Chiropractic Care
  • Occupational Therapy and Physical Therapy for Low Muscle Tone
  • Sugar-free Jelly Beans (whatever makes them sugar free causes loose stools…SCORE!)
  • Regular Exercise
  •  Benefiber
  • Probiotics
The thing to be carefully aware of with constipation is that it can lead to serious problems like a Urinary Tract Infection (UTI~because the bladder can’t fully drain when the bowels are full), or an impaction.   
Constipation doesn’t always mean there are no bowel movements, either.   
Some “leakage” around the impacted area can occur, so it may not seem as though there is a problem.  Considering our loved ones with WAGR have a high pain threshold means that there could be a serious problem before they REALLY start to complain of discomfort.  
Jeff and I observed once that we have NEVER talked about poop so much before in our lives prior to having a child.   
“Did she poop?”  “When did she poop last?”  “Was it big or little?”  But, really, the conversations aren’t half as painful as realizing that a week may have passed since her last poop, so we’re willing to “go there” for her own good.  At one point in time we actually had to track the BMs because we couldn’t remember when the last one was.  Don’t be afraid to do that!  You might find a pattern or correlation that you never could have without seeing it there on paper.

So there it is…the scoop on the poop.  I really can’t think of an appropriate way to end this entry other than with a old childhood rhyme: 
Birdie, Birdie, in the sky, dropped a doo-doo in my eye, I didn’t laugh, I didn’t cry, I’m just so glad that cows don’t fly.


  1. Tammie, you might be surprised to learn that GI issues are very common in a wide variety of diagnoses. In fact, we had a hospitalization this past September for a clean-out via NG tube with the boy. He still struggles. We use aloe water and Miralax like it's going out of style. Sheesh! I hate have a life centered around the toilet!

    1. I had never heard of aloe water, but I think I'll have to try it!!! Yes, always focused on what's going IN the toilet!

  2. It' is so unfair how the treatments that help with one thing create secondary can be tough enough..perhaps there is an argument for optimising the physical..does Evie balance well to try a Swiss gym ball..I would imagine that motion is good for gravity

    1. Evie is in pretty good shape now with her regularity...mommy actually has a more difficult time... :). And I have tried everything...:)



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