We will start with healthy fat options that may not be so easy to find at your local grocery store. It is important to note that when starting a high fat therapeutic diet make sure you are being followed by a medical professional and using the best quality of fat sources. Here are links to order on amazon.com to get it delivered right to your front door.
Here is the list of healthy fat sources: Coconut Cream, Organic Ghee, Grass Fed Butter, Extra Virgin Olive oil, Coconut Oil, MCT Oil, Avocado Mayo, Avocado Oil, Duck Fat, Beef Fat, Black Olives, Green Olives, Kalamata Olives, and Roasted Walnut, Hazelnut and Avocado Trio Oils.
Easy tips for treating constipation – A common symptom of Angelman syndrome.
When you see constipation listed as a symptom of Angelman syndrome, do not lose hope that it cannot be treated. A diagnosis of Angelman syndrome does not necessarily mean one is destined to suffer from all of the symptoms often associated with the genetics.
Many individuals that follow these easy steps are able to have healthy digestion without medications, enemas or natural laxatives.
Here is what you can do:
Eat a whole food, high-fiber diet.
Add 2 tablespoons of ground flaxseeds to your daily diet.
Eat healthy fats like avocado, olives, olive oil, grass-fed butter, coconut oil and try MCT oil.
Supplement with Magnesium, Vitamin C and Probiotics.
Drink 7-8 glasses of water a day.
Exercise or get the body moving as much as possible.
What to strictly avoid when constipated:
Dairy, sugar, gluten, bread, pasta, and all processed foods.
The Gut – Brain Connection
A healthy gut is key to a healthy brain.
Written by Sybille Krafty Bellamy, Mom to Maxent. Maxent was born with Angelman Syndrome, he was medically fragile from the beginning of his life. Sybille was determined to learn how to spend time and money in the kitchen and not in the hospitals.
Charlotte’s Web CBD (Cannabidiol) is becoming one of the most popular choices to help treat epilepsy in individuals with Angelman Syndrome. Some parents are also reporting that they have noticed improved behaviors. Although this hemp oil is available to order online and ship directly to your home it is highly recommended that you consult with a doctor that is trained in treating individuals for the specific areas in which you are concerned. As more states legalize the use of medical marijuana more doctors will be getting this training and lists are beginning to form to help you find the right doctor. This is a therapeutic and with any therapeutic, it is important to start with the correct dosage and evaluate the efficacy for your loved one and adjust as needed.
Available in Mint Chocolate and Olive Oil
A quote from their website:
-CW™ Hemp proudly ships our Charlotte’s Web™ proprietary hemp extracts to all 50 States. The United States Farm Bill of 2014 classified industrial hemp as containing less than 0.3% THC on a dry-weight basis. Because Charlotte’s Web™ products contain less than 0.3% THC, we are allowed by U.S. Federal law to conveniently ship to your doorstep.
1. What is the Low Glycemic Index Treatment (LGIT)?
The LGIT is a special high fat diet similar to the ketogenic diet that is used for difficult to treat seizures. It focuses on both the type of carbohydrate, low glycemic index, as well as the amount of carbohydrate based on portion sizes and household measurements. The glycemic index (GI) is a measure of the effect of carbohydrates on blood sugar levels.
When carbohydrates are digested, they release glucose into the bloodstream. Carbohydrates that digest rapidly have a high GI. Carbohydrates that are digested slowly have a low GI. Foods are rated based on their GI values ranging from zero to 100. The LGIT includes foods that have a GI of 50 or lower. In addition to the GI, the digestion of a carbohydrate food is slowed by foods that are eaten at the same time that contain either fat or fiber. Therefore, meals are balanced with sources of fat, protein and a low glycemic index carbohydrate.
For more information visit: https://www.charliefoundation.org/explore-ketogenic-diet/explore-2/lowgycemicindex
By Sybille Kraft Bellamy
Mother of Maxent, AS 14 years old.
Thirteen years ago in July 2003 Maxent was diagnosed with Angelman syndrome (AS), he was 18 months old.
Today he is a handsome teenager in excellent physical condition with no medical issues. Nevertheless, this was not always the case. From infancy to his toddler age he was chronically sick and he spent more time in the hospital than at home. Very quickly I had the certitude that diet should be the best accessible and fastest way to help him.
Following my own observation and encouraged by Max’s pediatrician (and later by our neurologist), I started paying attention to his diet and removed most of the simple carbohydrates and insisted on replacing them with all kinds of fats.
The change confirmed that my maternal instinct about Max’s incapacity to deal with blood sugar fluctuation was correct.
The low carbohydrate/high fat diet was and will always be his first line of treatment like many other patients with severe disorders.
My confidence and enthusiasm in nutritional therapy is being shared by many parents.
Unexpectedly, a couple of years ago when I was put in contact with Maria Picone (through Gary Taubes) I had an immediate connection. We felt that many of our everyday battles were very similar, and our energy and desire to share our success with the diet with our community was a necessity.
Maria’s daughter, Tea, has Prader-Willi syndrome (PWS). I had the pleasure to meet her in her school with her friends and teachers and I was truly impressed by her personality.
She is a beautiful, smart little girl full of energy and very talkative!
Angelman syndrome and Prader-Willi syndromes were the first imprinted genetic disorders to be described in humans. Both syndromes are associated with loss of the chromosomal region 15q11-13( band 11 of the long arm of the chromosome 15).
This region contains the paternally expressed genes SNRP and NDN and the maternally expressed gene UBE3A.
Paternally inheritance of a deletion of this region is associated with PWS characterized by hypotonia, obesity and hyperphagia. Maternally inheritance of the same deletion is associated with AS (characterized by epilepsy, tremors and sleeping disorders).
In fact, many children with AS present typical characteristics of PWS, like an insatiable appetite and hormonal disorders. Also, some children with PWS suffer from epilepsy, also very common in AS.
It is well-known that patients with AS greatly benefit with therapeutic diets but it appears that patients with PWS do as well.They have better appetite control and a better body muscle mass repartition.The diet is beneficial for both syndromes, on a physical and cognitive aspect.
Many studies around the world confirmed the positive result on the diet with a better control of the epilepsy, however the full extent of the diet with some syndromes is not well-known because of the lack of data.
Patients and their caretakers need a data bank where they can have access to information concerning specific medical protocols and observations from patients and professionals from the medical field.
TREND Community was created to give patients a place to share their stories and contribute real-world data that will inform other patients, clinician, scientists and researchers. It is turning anecdotes into evidence.
TREND Community Initiatives connect its patient communities with leading specialists to collectively evaluate the effectiveness of specific therapies, diet or other environmental interventions. The Angelman Syndrome Diet Initiative is the first initiative for the Angelman community.
The AS Diet Initiative will introduce a group of individuals with AS to a pre-ketogenic diet and track patient-reported outcome measures hunger, cognition, behavior, energy, body composition and quality of life. This specific investigation of AS ketogenic diets is a wonderful opportunity to bring new hope for many patients and their families.
The diet Initiative will be carried out under the guidance of Beth Zupec-Kania, RDN from the renowned Charlie Foundation.
I will have the pleasure to bring my expertise of Angelman syndrome and diets. I will share all the positives outcomes I obtained with LGIT/MCT but also provide caution and reminders that this is a medical diet and must be done under the supervision of your doctor.
The AS Diet Initiative is sponsored by Gary Taubes, co-Founder and Director of Nutrition Science Initiative (NuSi), and Robert Goldstein.
We are extremely thankful to Gary Taubes and his ongoing support to help us spread awareness of the wonderful effect of the diet on our children health.
If you would like to learn more about AS Diet Initiative or request an invitation to join send an email to firstname.lastname@example.org
Worldwide FREE online screening of the complete documentary
January 1st – January 14th
“The body is a self healing organism and if we give the body what it needs [Nutrition] it will do the job”
Have you seen these teal pumpkins in your neighborhood ? Check out this video and we will tell you all about it and what it could mean for your “Trick or Treaters”.
Get involved, visit www.tealpumpkinproject.org for more information. Free Downloads to participate.