Sunday, August 26, 2012

Prader-willi syndrome/weight management

(here's a photo of the A~man from 4-H Lego club :)

Just this week the A~man had his annual physical. I was a little nervous about how his weight would do on the charts as I know this last month he has gotten into the pantry more than normal and has gained at least 3 pounds. What I think he does is get into the kitchen during the daytime, at the rare time he is unsupervised  and things are not locked up, and stashes it in his room for when we are all asleep. Also when hubby and I are downstairs in the evenings watching a movie we have caught him in the kitchen when he was supposedly getting up to use the bathroom. At night we have to REALLY check the kitchen to make sure nothing is left out as this last month he grabbed a huge bag of tortillas...and ate them all. (not sure he ate them all at once but he admittedly had a belly ache) In the past something like that wouldn't have been a food he would target so we are learning no food is safe. A lot of people when they observe how we micromanage his food in a restaurant or monitor him around food at a homeschool event really look at us funny as he really is slim looking. In fact at the Drs. office it turned out his BMI was at 75% and before that over the years it has been at 90%.

Fortunately we have very few issues when we go out to eat or go to events with food as he knows we will help him make some good choices. In fact I think him knowing exactly what he will be having, with no chance of talking us into more is comforting to him. No hope of getting more somehow is reassuring to him. He is also better behaved at restaurants than a lot of kids I see. (of course there is the occasional moment)

(I'm stealing this from the PWSA website)

Appetite Disorder

Hypothalamic dysfunction is thought to be the cause of the disordered appetite/satiety function characteristic of PWS. Compulsive eating and obsession with food usually begin before age 6. The urge to eat is physiological and overwhelming; it is difficult to control and requires constant vigilance.

Weight Management Challenge

Compounding the pressure of excessive appetite is a decreased calorie utilization in those with PWS (typically 1,000-1,200 kcal per day for adults), due to low muscle mass and inactivity. A balanced, low-calorie diet with vitamin and calcium supplementation is recommended. Regular weigh-ins and periodic diet review are needed. The best meal and snack plan is one the family or caregiver is able to apply routinely and consistently. Weight control depends on external food restriction and may require locking the kitchen and food storage areas. Daily exercise (at least 30 minutes) also is essential for weight control and health.

To date, no medication or surgical intervention has been found that would eliminate the need for strict dieting and supervision around food. GH treatment, because it increases muscle mass and function, may allow a higher daily calorie level.

A~man hasn't been on growth hormone in a few years but this fall we will be going back to the endocrinologist to see if it might be a good idea to go back on. I hesitate to though, as he is growing tall, (almost 5'4"!) and has really good endurance. We try to walk almost every day with him 3-4 miles. I hope that the habit of walking will be one he takes into adulthood as just something that needs to be done everyday. Most of the time now he does it very willingly.

School is going well for A~man. I think his behaviors have improved since starting back with school work. We tend to be a pretty "spur of the moment" family but the routine we do have in the morning seems to set a good path for his day. (and ours!) Most of his schoolwork in the morning is his online curriculum or online learning games like "sentence match". We are also trying out a really cool online reading program through The Old Schoolhouse Magazine that I will share about soon! Our afternoons lately have been outside. Z~is making a nature book about mushrooms and A~man is making one about trees.  I look forward to our 7th year homeschooling! (well technically it's been 6 and a half years ;)

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