By: Janalee Heinemann, Director of Research & Medical Affairs
The holidays are typically a food fest in our country – and can be a time of stress for our PWS families. With good planning, it is possible to make it a happy holiday for all.
If you will be with relatives, carefully plan ahead of time and communicate the importance of food control with all involved. Make sure all attending know the “rules of engagement” and agree to cooperate.
See that someone at all times is clearly in charge of your child with PWS. Clearly define when you are “changing guards”. As Dr Linda Gourash states, “When everyone is in charge – no one is in charge.”
If your child is old enough, rehearse the “rules” before the special day and come to a mutual agreement on what your child will be allowed to eat. You can barter, i.e. “Do you want a little extra turkey and dressing, or do you want a piece of pie as your special treat?”
It is okay to request that Grandma and other relatives tuck away tempting items during your visit and to discreetly check with you prior to offering your child a treat.
Make sure you know what everyone is bringing, so there are no surprises on what the choices will be.
Grandpa and Grandma, or aunt and uncle may want to bring a special gift toy to compensate for the food they have to deny your child.
Go over with the hostess or your family the plan to contain accessibility to food. This will help prevent your child from sitting near bowls of food, rolls, or condiments. Many people do not consider how many calories children can consume with the extras – sugar, butter, catsup, etc.
After eating when people are just visiting make sure food is put away or, if left out, someone is responsible for guarding it.
Your child must have the security of knowing you will be strong in your commitment to keep them protected from food – in spite of themselves. Giving in, even once, means several battles ahead. Consistency is the key.
Of course, each family must judge their own situation based on their child’s food drive and their own regulations on treats. Some families are raising their children to never have any sweets – no exceptions. Others (like ours) just go by calories and the weight of the child, trying to keep the diet less in quantity with more variation of food. Often, the most important thing is to prevent food sneaking or food demands. There is a large variance in the food drive of children with PWS. Some will ask or beg for more food, but make no significant attempts to sneak food. On the other hand, some will go to great extremes to get food, and are incredibly cleaver at doing so.
The holidays have an extra risk factor for our older children and adults with PWS. There have been individuals with PWS who have died of gastric rupture and necrosis. Some of these were over the holidays or special events and due to a food binging episode that led to necrosis (deadening of the tissue) of the stomach wall and a perforation (tear) in the stomach. In most of the deaths, the person with PWS was relatively slim, so there was no great concern about weight gain. Keep in mind that a person with PWS, who is slim still does not have total food control. When a child or adult with PWS has many opportunities for food ingestion, the lack of feeling full, the high pain threshold, and a weak vomiting reflex – then there is the potential of filling the stomach dangerously full. Because there are many food binging episodes of our children and adults with PWS, most not having such disastrous results, we think there are probably other factors that play into this life-threatening situation, which we are currently researching. One hypothesis is that due to prior food binges, and stomach muscle weakness, certain areas of the stomach wall become thinner putting this area at risk. Please see that the safety and security that your child deserves is provided.
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