How Prader-Willi Has Affected Our Family

Prader-Willi has definitely had an affected our family routine and lifestyle.  The more we learn about the nutritional requirements, the healthier we try to eat.  Trying to shift the focus from food being a comforting, celebratory thing, the focus has shifted to medicine for our bodies.  Addison definitely wants to eat something if she sees us snacking without her.  She cant have anything that is processed, sugar, or carbohydrates.  Breads, pastas, cakes, candy – anything that tastes good – must be eliminated.  The sugar and the carbs are what drive the hunger and make the hyperphagia come on sooner.  Low calorie, nutritionally dense foods – meats, veggies, fruit (low sugar and carb fruits) are the diet that she can have.  PWS people also traditionally do not like water and will refuse it when offered.

Work and school schedules must be worked around the many therapy appointments in the mornings and random doctor appointments.

Financially, her medical bills add up.  Fast.  Every year we will meet our yearly deductible in February – if not sooner, and will then spend the rest of the year paying those down – only for the new year to hit and the cycle starts over.  Her medical care and costs must come before other comfort wants.

Daily we work with her each evening on strengthening her muscles and coordination.  We must be extremely vigilant when she begins showing signs of illness, as PWS children do not show typical “sick” cues.

We have learned that, as her parents, we know more than the general doctor does about her syndrome, and must advocate and educate with each new doctor we must work with.  When she is hospitalized when sick or for her surgeries, we have had to tell them no to various things (sat levels, the use of anesthesia, other sedative medicines are a big NO) and explain to them why those are bad for them.  We have had to push for overnight stays after routine surgeries when anesthesia has been necessary due to their slower metabolism and lower respiratory function.  We must educate ourselves on her symptoms and conditions.

We have also learned to seek out additional therapeutic assistances.  She will need a theratog to help support her core and will likely need additional supports for scoliosis, special shoes for balance and walking and other things we are still learning about!

How Prader-Willi Has Affected Our Family

Prader-Willi has definitely had an affected our family routine and lifestyle.  The more we learn about the nutritional requirements, the healthier we try to eat.  Trying to shift the focus from food being a comforting, celebratory thing, the focus has shifted to medicine for our bodies.  Addison definitely wants to eat something if she sees us snacking without her.  She cant have anything that is processed, sugar, or carbohydrates.  Breads, pastas, cakes, candy – anything that tastes good – must be eliminated.  The sugar and the carbs are what drive the hunger and make the hyperphagia come on sooner.  Low calorie, nutritionally dense foods – meats, veggies, fruit (low sugar and carb fruits) are the diet that she can have.  PWS people also traditionally do not like water and will refuse it when offered.

Work and school schedules must be worked around the many therapy appointments in the mornings and random doctor appointments.

Financially, her medical bills add up.  Fast.  Every year we will meet our yearly deductible in February – if not sooner, and will then spend the rest of the year paying those down – only for the new year to hit and the cycle starts over.  Her medical care and costs must come before other comfort wants.

Daily we work with her each evening on strengthening her muscles and coordination.  We must be extremely vigilant when she begins showing signs of illness, as PWS children do not show typical “sick” cues.

We have learned that, as her parents, we know more than the general doctor does about her syndrome, and must advocate and educate with each new doctor we must work with.  When she is hospitalized when sick or for her surgeries, we have had to tell them no to various things (sat levels, the use of anesthesia, other sedative medicines are a big NO) and explain to them why those are bad for them.  We have had to push for overnight stays after routine surgeries when anesthesia has been necessary due to their slower metabolism and lower respiratory function.  We must educate ourselves on her symptoms and conditions.

We have also learned to seek out additional therapeutic assistances.  She will need a theratog to help support her core and will likely need additional supports for scoliosis, special shoes for balance and walking and other things we are still learning about!