Well, you see, once you become a parent...you find yourself talking about poop, and/or the lack there of...ALL.THE.TIME.
Poop is especially important when it comes to individuals living with PWS. After attending the FPWR conference in San Antonio, David and I got the pleasure of hearing Dr. Ann Scheimann, M.D., M.B.A., Gastroenterologist and PWS Specialist present. I had heard from our pediatrician, time and time again, that individuals with low muscle tone can be constipated, and I never really understood the extreme importance of why this was a big deal. After all, many parents of infants struggle with this issue and try all different strategies to get their kids to poop. Dr. Scheimann helped me to realize that poop is very important, and there are things David and I need to know, related to Ellie's gastric and intestinal health...her life could be at risk.
There is an article written in collaboration with Lisa Graziano, M.A., PWCF Executive Director, Janalee Heinemann, M.S., PWSA (USA) Director of Medical Affairs, and Dr. Ann Scheimann, M.D., M.B.A, Gastroenterologist and PWS Specialist on PWSA USA's website, and I am choosing to include a large portion of a quote by them. It is so important:
"Over the following years, particularly with closer examination by PWS/GI specialist Ann Scheimann, M.D., it has become clearer that a great number of other people with PWS have a stomach that empties too slowly. In fact, Dr. Scheimann now believes it is highly probable that a significant number of people with PWS have some degree of a slow emptying stomach. The medical name of this disorder is gastroparesis: the muscles in the wall of the stomach work poorly and prevent the stomach from emptying properly. As a result, food stays in the stomach longer than it should. Over time, the volume of accumulated food in the stomach can cause the stomach to become full. Like a balloon that has too much air, the stomach of someone with PWS that contains too much food can respond in one of two ways: it will rupture or the food will push so hard against the stomach lining that it compresses and weakens the cells in the stomach. Both of these conditions cause massive internal infection and can quickly lead to death. (Please note that there has typically been a prior eating binge with most incidents of stomach necrosis and death – but not in all cases.)
Other important factors to consider are that some medications such as narcotic pain relievers and anticholinergic medications (group of bronchodilators) can also cause the stomach to empty too slowly (as well as cause dry mouth symptoms). Abnormally high blood glucose (sugar) levels or undetected hypothyroidism can also slow stomach emptying; therefore, it is important to control blood glucose levels and screen periodically for hypothyroidism."
So, you can see why poop is so important. Ellie takes a probiotic every day to help with regularity and in the future, we might add a prebiotic supplement as well.
Gastroparesis scares me to death. But, the more we know, the more we as parents, caretakers, and friends can help those with PWS. What are treatment options and strategies to help? "The most likely answer to how we treat the potential for gastroparesis and slow emptying bowel is to presume they exist and treat them as if they exist." (Graziano, Heinemann, and Scheimann).
The article points out the following treatment strategies (paraphrased):
- Food Security is key
- Serve meals/snacks at structured times
- Meal and snack should be healthy, low-calorie, lower carb
- Restrict all access to food
- Request information from notable PWS sources regarding GI issues.
- Obtain a consultation from a pediatric or adult gastro doctor, if GI issues are present.
- Consider, with the help of a physician the pros and cons of completing the Gastric Emptying Study.
- Consider, with the help of a physician certain medication to help with stomach emptying.
- Consult The Bristol Stool Chart, and talk about this with your physician
- Discuss use of over the counter medications like Miralax and probiotics.
- Refer your physician to a PWS GI expert
This is an area of PWS that might stink, no pun intended, ok...maybe a little. But in all seriousness, this is an area that should be talked about and everyone who has a loved one with PWS, should be educated on it.
Other super informative and important articles can be found here:
http://www.pwsausa.org/syndrome/medical.htm
and
http://www.fpwr.org/prader-willi-syndrome-diagnosis-treatments/
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