Energy Levels & Growth Hormone

It's not uncommon to notice changes in the energy level of your child with Prader-Willi Syndrome. There are multiple reasons for this, and each child is different, hence this syndrome being spectrum. In a previous entry I talked about supplements. It's important to remember that manufacturers (of vitamins & supplements) do not need to register their product with the FDA, nor get the FDA's approval, before producing & selling to the public. When choosing a supplement for energy maintenance, consider the source. If your doctor can give you some recommendations, as did ours, please take their advice. Doing your own research into your child's supplements can make a huge difference.

By now you are probably aware of the different phases of Prader-Willi Syndrome. Some of these phases present at different times, child to child, due to their course of treatment. A big factor is the use of Human Growth Hormone. GH has now been used for about 13 years, getting approval from the FDA in 2000,to treat patients with Prader-Willi Syndrome. Some children may show a deficiency of GH, but even with no such deficiency, GH is prescribed to help with over-all body composition & growth. It has been documented that the use of GH in individuals with PWS improves lean body mass, decreases body fat, increases bone mineral density & normalizes height. Growth hormone also influences the body's conversion of food into energy.

A physical characteristic of a child or adult with PWS is short stature, obesity & some level of mental disability. There is also a reduction in muscle mass that is associated with diminished strength, physical function & energy expenditure. This is now somewhat avoidable with the use of growth hormone injections. Studies suggest it has positive effects on behavior and development. It has been noted that children who start GH therapy before the insatiable appetite begins (between ages 2 & 3), that hunger is delayed until age 7, 8 or 9.

Supplements, diet & growth hormone all play a major roll in the over-all energy of an individual with PWS. We keep a fairly strict diet with Claire, keeping to this daily ratio: 25% protein, 35% fat & no more than 40% carbohydrates. It's not easy - it's actually REALLY difficult. Before our first appointment with Dr. Miller, I got the idea to make a menu board for our family. I spent hours upon hours finding, creating, re-doing favorite recipes that met the calorie restrictions I was under the assumption we needed to stick to. I organized it by color, laminated it all, included nutritional content per serving. Here's a picture...

I was so excited to show off my pretty menu board to Dr. Miller. However, she said to me "Oh, we don't count calories, we just balance." My bubble was burst.
Nonetheless, when I returned home I went through the recipes, tossed some out, and started searching for more or tweaking the ones we love. I also started doing a bunch of research on 'healthy' foods.

Since adopting the 'Balancing Diet', we all have noticed that it's not so bad! There is a noticable increase energy, and I have lost 15 lbs in 6 months. Food is essential to the proper functioning of your body, but those with PWS need a little more help. Each time Claire's Growth Hormone is increased, we see an increase in her energy, sometimes more than others. A few weeks ago I asked the doctor if we could add B12 to Claire's regimine- she said yes, told us which kind to get & the proper dosage. There was no difference in her energy, which was quite poor at the time. After a blood test, we learned that Claire actually had a pretty severe case of anemia. We added gentle iron (non-constipating) & after about 5 days, she is back to her silly, funny, energetic self! We took away the B12 & will add it in the future if we feel it's necessary.

Because of the plethora of information on the internet, it's easy to fall prey to fad diets, pills, supplements, juices, etc. Our doctor just put out a very informative PSA that I think everyone should read - and remember.  PSA: Warning

There is no cure for Prader-Willi Syndrome. It is mostly about treating the symptoms of the disorder as they arise, and each person is very different. We consider ourselves extremely lucky thus far that Claire has been so healthy. She is in 4 therapy sessions a week, is in horseback riding therapy (hippotherapy), plays with children her age, has the regular childhood illnesses, and is the JOY of our lives. We trust our doctor, and that is a big deal. You know your child, and you may know best in some situations, but I urge you to consult with the professionals when making decisions on the course of care for your child. What works for one child, may actually hurt another. Diets included.