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|D-Lactic Acidosis: A Personal Experience|
D-Lactic Acidosis: A Personal Experience
We began the roller coaster ride called short bowel syndrome (SBS) in 2007. When my daughter Ally was four years old, she lost all but twenty-five centimeters of her small intestine due to a mid-gut volvulus. Her colon remained intact. Early on I joined various social media sites, as well as the Oley Foundation. Thankfully, I read of others’ experiences where their child acted drunk due to D-lactic acidosis, so when Ally first had symptoms I was aware of this disorder.
Her symptoms have ranged from mildly blurred vision to a comatose-like sleep state. Specifically, over the years Ally has experienced slurred speech, incoherent speech, inability to walk, out-of-character anger or silliness, deep sleep that goes on for hours to days, academic decline, and hall
ucinations. She was exceptionally good at coloring, but in a D-lactic episode she would scribble and would think it was beautiful.
At the worst of her D-lactic episodes, she could not remember the six to eight hours a day that she had spent in an episode. At best she would be a little cranky and maybe take a long nap. We say she’s either a happy drunk, an angry drunk, or a sleepy drunk.
Diagnosis and Treatment
We went about six months with Ally having D-lactic episodes about four to five times per week and without successful treatment. The usual antibiotics did not help. While the effects would go away and there were no lingering neurological problems, it was affecting her quality of life.
Every time we planned anything or it was a special occasion, Ally was fearful she would miss it because of a D-lactic acidosis episode. Sometimes we laughed along with the happy drunk, but the truth is it disrupted our life so much. D-lactic acidosis has ruined birthday parties, holidays, and even simple play dates with friends. It is inconvenient, scary, and lonely.
Finally, after many emergency room visits and hospital stays, we tried some different “big gun” antibiotics. For the first time in six months, Ally went a week without an episode. In our case, Ally
had to have carbs to grow and in order to stay off PN—too many carbs to avoid D-lactic acidosis episodes. So our options were to go back on PN and have no carbs by mouth or treat with high-power antibiotics.
We found two antibiotics that would take away the dreaded “episodes.” These worked for the next few months, but as often happens with SBS, Ally’s gut flora changed. What had been working didn’t work anymore. Now we rotate a variety of antibiotics as well as some homeopathic essential oils. It’s an ever-changing treatment, but she only has D-lactic episodes about once a month now, and sometimes even less often.
Passing It Forward
I hope that by sharing our story we will help others to recognize symptoms and avoid being undiagnosed or misdiagnosed. If you suspect it could be D-lactic acidosis, I would suggest pushing for the blood test. It’s the only way to know for sure. Make sure the lab knows the test is for D-lactic and not L-lactic and that it needs to be sent to the Mayo Clinic. Many times Ally’s blood tests were done incorrectly and had to be done again.
LifelineLetter, September/October 2015
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Feeding Tube Awareness Week
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Oley exhibit at A.S.P.E.N.'s Clinical Nutrition Week