The following information is for parents and caretakers of Prader-Willi Syndrome, a genetic condition, with the partial deletion or genetic imprinting of chromosome 15. You can read more about the syndrome and its effects on our children here.
Natural and Prader-Willi Syndrome don’t always go hand in hand. But, that doesn’t mean that there are not many different remedies and ideas that can help your child live a viable and healthy life.
Our PWS children need so much medical care, particularly in the beginning, that natural remedies don’t seem to be viable. Between growth hormone injections and issues related to PWS, you might need to stay away from natural methods. In fact, I would say that unless you personally feel comfortable with natural methods, generally I would stay away from them, particularly in the first two years of life. When you really aren’t sure, I always recommend following the medical route until you are pretty sure you can try a natural remedy or alternative. Frequently, parents use natural remedies hand in hand with traditional medical treatments.
What Natural Remedies Can You Use First in Prader-Willi Syndrome?
The only hands down supplement, outside of multivitamins, is COQ10. Because of the damage done to the mitochondria in our children’s bodies, COQ10 can provide energy to our children, even infants, they would otherwise not have. There have been studies done on this, and I did use COQ10 (and still do) on my son for the first time at 3 months old (I gave him a 60 mg capsule).
COQ10 is a natural enzyme our bodies create in order to help our cells to create energy in our bodies. If COQ10 is low, then our children’s bodies will be low in energy. Obviously, this is typically the case in Prader-Willi people, and so debilitating in Prader-Willi infants and babies. It needs to be noted, that some parents report little to no change in their children when they use COQ10. However, in my son, the difference was really remarkable. At age 13, he still benefits from this supplement.
At first, you will need to purchase the capsules and squeeze the contents out in a bottle (no small feat, truly). But, around 4 or 5, you can use this awesome liquid, which had both COQ10 and carnitine in it. Both of which, I do recommend as your child is developing muscle. I did use it in conjunction with growth hormone injections. If your budget is tight, you can always ask the pediatrician to write you a script.
I did use these liquid vitamins when my son was an infant and until he was preschool age and could chew and swallow well. With very low muscle tone in our children, especially has infants and babies, the extra vitamins can only help them.
Natural Remedies will be second to prescriptions
This is just a given. If you are better than I am at natural remedies and have information you would like to share, please do! I used natural remedies to help control my son’s moods, but I gave in to the medication. His brain is just too complicated, and nothing helped him.
That being said, each child is vastly different, and in the PWS community, the spectrum of Prader-Willi varies. Some children exhibit mild symptoms in weight-gain, behaviors, and metabolism, while others may show extreme difficulties. You, as the parent, must decide what your child needs.
The resources listed below are suggestions based on conditions your child may struggle with. They are not intended to cure or diagnose any disease or condition.
Natural Resources for Prader-Willi Syndrome
It is well-documented that managing gut health helps children overcome autistic behaviors. Foods that trigger inflammation in the body can create havoc in the brain. You can help your child overcome this by removing offending foods from your child’s diet, or focus on improving their gut flora. An inexpensive way to do this is to make homemade yogurt.
My own experience with my son has been that (while on behavior meds) he responds well to homemade cow’s milk yogurt. However, he does not seem to digest the organic cow’s milk for drinking. I personally cannot afford to buy him grass-fed milk, so we drink almond milk, but I make him yogurt with the cow’s milk.
You have probably read that wheat and cow’s milk are some of the leading food allergies in children. We have journeyed a lot with our diet. We have been on gluten-free, grain-free and a wheat-based diet. The safest bet is to refrain from packaged foods, making fresh, whole food at home. Choose your restaurants carefully, as well as what you eat when eating out.
Here are a few other posts that might help:
Colds and flu
Once you get your child’s gut healthy, you can naturally treat colds and flu. As we all know, Prader-Willi Syndrome is not an illness, it is genetic condition. While people with PWS can become sick from PWS complications, that is not their genetic condition.
I use natural cold and flu remedies on my son all the time with great results. In fact, since I began paying more attention to natural health, my son has rarely become ill. He spent the first 4 years of his life in and out of the hospital, sick from episodes of pneumonia and once with RSV.
I have personally used every one of these natural remedies on my special needs son, so I know they work! Plus, they are very benign and are not harmful. Start with a small amount (remember, they work for a reason) and watch for results. If you increase it for good benefits and nothing seems to happen, then try something else. There is no magic pill here, only ideas to help you with your child with Prader-Willi Syndrome.
Here are some more ideas
If you don’t use them, you may be missing out. Essential oils have become a leading natural remedy for homes across the world. They are oils packaged in small bottles, mostly from herbs. Yet, there are also essential oils that are distilled from citrus peels, tree sap, even foods, like carrots. They are super-charged natural ingredients that DO really heal.
That being said, I think there are far too many different combinations created to “enhance moods”. I have tried some combinations made with very unusual oils that just did not make me “happy” like the bottle said. It kind leaves you feeling like Alice in Alice in Wonderland. Particularly when it comes to our children, sticking to oil combinations we make for a very specific purpose, is really the best choice. I personally use oils on my PWS son for congestion, digestion, insect repellent, and sometimes to sooth his mood a bit. They
So, which brand should you use? That is a complicated issue. Some swear by Young Living or DoTerra. But, in recent years, with the incredibly steep price of both name brands, many have turned to smaller brands like Plant Therapy or Garden’s Eden. Type in a search on Amazon and you will find many others. I just happen to have good results from these two lesser-known brands. I have used Young Living, but unless you are just really struggling with a health issue, the price tag does not justify the cost. Even then, you could probably use Plant Therapy and still have equal results. That has been my experience.
Here are a few posts that will help you with essential oils.
Or, you can check out our two Pinterest boards on essential oils for more ideas.