Supplements are a good way to fill in what your body isn't receiving directly from food. Prader-Willi Syndrome is a spectrum disorder, and what works for one person may not always work for the next. Each person (diagnoses aside) is unique in their reactions, tolerations & processing, so it is
possible that the following supplements may not work for your child. Not the
end of the world. I'm sure there are other supplements that are being used by those with Prader-Willi, but these are ones with which I have had some experience. It is likely this blog entry will be updated in the future with supplements added &/or taken away from Claire's daily routine. 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. If your doctor can recommend a certain brand, as did ours, I highly recommend going with the physicians advice. I read somewhere once that CoQ10 can sometimes be derived from tobacco plants... gross! Know what you are putting into your, and your child's, body.
The first supplement a lot of children with PWS are put on is called L-Carnitine. This is a naturally occurring substance in the body, and sometimes kids with PWS have a deficiency. Carnitine helps the body use certain chemicals (long-chain fatty acids) for energy & to keep you in good health. The most common symptoms in people who are unable to use Carnitine from the food they ingest (mostly in proteins such as meat and dairy) are low energy, weakness & low glucose.
L-Carnitine is used for Prader-Willi patients (sometimes when they don't have a deficiency to begin with) to boost their energy level. It does take a little bit of time to show a difference in energy & each child is different. Also, keep in mind that this doesn't work for everyone.
Your pediatrician should be the one who prescribes this (Rx is called Carnitor/Levocarnitine) - and note that it should never be purchased over-the-counter or online as those are not in a pure form.
In Claire's case, we took her off Carnitine after only being on it for about a month. At first we thought we saw a difference in her alertness, but after a few more weeks, it didn't seem to be working. It was disappointing, but we were on to the next!
CoQ10
CoQ10 is produced by the human body and is essential for the basic functioning of cells, especially those found in muscle. It generates energy in each cell, specifically the mitochondria, in the form of ATP (Adenosine Triphosphate), which in return transports the chemical energy in each cell for metabolism. CoQ10 also acts as an antioxidant, which protects the body from harmful molecules, especially the heart and skeletal muscles.
A blood test can determine if a person with PWS has low CoQ10 in their system. Whether or not there is a deficiency, it is sometimes prescribed in hopes it will have the same effect as L-Carnitine. There is also a question of whether or not those with PWS are inadequately utilizing the body's supply of CoQ10. Supplementing will also aid in muscle function & metabolism.
Our doctor recommends ordering our CoQ10 from a company called CytoMed because it is in it's purest form. If you do not want to order it, here are a few tips for choosing a CoQ10 supplement: 1) If you see a CoQ10 supplement with “ubiquinone,” walk away. Your body has to work extra hard to recognize and convert this form into one it can use. 2) Ubiquinol is identical to 95% of the CoQ10 your body is designed to naturally produce. Make sure this is in your CoQ10 supplement.
You can find CytoMed here: CytoMed
A dose of 50mg a day (1 capsule)is what we started Claire on after removing the carnitine from her regimen. We squeeze the capsule into her Greek yogurt each morning. She is 2 years old (by just over a week & weighs 22lbs. This has made a HUGE difference in her overall energy level & alertness. She quickly went from two down to one nap per day (age appropriate) & she can handle all her therapy sessions from start to finish, no problem.
Omega 3
Omega 3 fish oil is something we should all incorporate into our daily diet, whether or not we take it in vitamin form or directly from diet. Omega 3 consist of three fatty acids: ALA (found in plant oils) EPA & DHA (both found in fish oils). DHA is crucial for the proper development of brain, eyes & heart in children, and has been helpful with attention disorders. EPA is proven to lower inflammation in the body & have positive affects in mental health. There is more information on Omega 3 in this blog Part V.
We were turned onto Coromega for our Omega 3 by fellow Prader-Willi moms. It is a very good form of the vitamin & u can order directly from them, or on Amazon.com
She gets one of the orange flavored squeeze packets each morning & LOVES IT!! (We found that the regular orange squeeze packets are the same as the kids shown below, so we obviously look at the cost difference before buying.)
To visit the website for Coromega, go here: Coromega
We're led to believe Claire suffers from asthma, although she hasn't been technically diagnosed. She is on a breathing treatment twice a day as maintenance with back-up meds to add if needed. It is believed that a diet high in Omega 3 can help respiratory health by reducing inflammation, which increases the effects of asthma.
Vitamin D
This vitamin is essential for maintaining proper calcium levels in the body & without it, the body is unable to absorb & use calcium efficiently. The bones, nervous system & immune system depend on calcium for proper functioning. There are two types of Vitamin D > D2 (synthetic) & D3 (natural). Vitamin D can be found in small amounts in a few foods, including fatty fish such as herring, mackerel, sardines and tuna. You may see products that say "fortified with Vitamin D" like dairy products, juice & cereal, but these are also smaller amounts. 80% to 90% of the Vitamin D our body receives is through exposure to sunlight.
If using a D supplement, make sure that it is D3, since this is the kind that is naturally produced by the human body. The synthetic D2 has been known to be derived from plant matter & made by irradiating fungus (exposing it to radiation... I mean, seriously???) If you want an easy way to get your Omega 3 & Vitamin D3 in one little easy dose, visit the webpage for Coromega: Coromega Omega 3 & Vitamin D3
Sunlight is the best & easiest way to get your daily dose of Vitamin D, but there is also the fear of UV rays & skin cancer. Unfortunately, the use of even a level 8 SPF sunblock decreases the absorption of Vitamin D by 95%. Using anything higher virtually prevents the body from using those rays to get your crucial dose of D. It is recommended that everyone be exposed to direct sunlight (without sunblock) for about 10-15 minutes per day, as that is all the body needs.
A few months ago, Claire's quarterly blood tests came back good & our doctor mentioned how her Vitamin D level was the best she had ever seen in a kid her age. Still not sure what I was thinking, but the very next time we ordered her Coromega Omega 3 Orange Squeeze packets, I ordered the Omega 3 + D. The next blood test came back showing Claire had an elevated level of calcium. There are a few reasons for this, one being too much Vitamin D can raise your safe level of calcium. Have your doc checks Vitamin D levels & adjust accordingly, but there is such a thing as TOO MUCH SUPPLEMENTING!!!
