90% Improvement in Seizures, My interview with Dr. Ron Thibert!

I recently had the opportunity to catch up with the Angelman communities very own trusted Neurologists Dr. Ron Thibert!

He is the Co-Director of the Angelman Syndrome Clinic at MassGeneral Hospital for Children in Boston. His specialties include Neurology and Epilepsy Service. Many families in our community travel from many other states just to see him.  He really understand how to provide the best treatment for our kids!  Angelman Syndrome is so rare and when it comes to their brain and seizures, our kids need the best! They need someone who has experience to draw from when deciding the best treatments and medications.

Here he is in an interview talking about seizures in individuals with Angelman Syndrome and effective Nutritional therapies like Low Glycemic Index treatment (LGIT) and the Ketogenic diet.

Dr. Thibert has been a long time supporter of dietary therapies in controlling seizures. He has seen the proof in EEG reports for many of his patients.  In fact, in one of my earlier posts entitle Stop Seizures with 3 Nutritional Therapies I shared with you the story of young Jace who has not had a seizure but shares in the typical AS abnormal EEG, showed improvement after beginning the GFCF diet.  His mom told me he is now considered to have a "Normal" EEG!  That's Fantastic!

Dr. Thibert and his team including Dr. Elizabeth Thiele (both are members of the Scientific Advisory Commity for the Angelman Syndrome Foundation) were able to launch a clinical study to determine the efficacy of the Low Glycemic Index Treatment in reducing seizures in individuals with Angelman Syndrome.  In July 2012 the results were in and published in Epilepsia and on the Angelman Syndrome newsletter.

 "The results were better than we had expected" said Dr. Thibert. 80% reduction in seizures and 90% reduction after 1 year and ALL experienced no significant adverse effects! "5 of the 6 individuals remained on the diet" said Thibert.

I asked Dr. Thibert who is the best candidate for this dietary therapy?
   "Anyone with 1 failed antiepileptic medication".

How does one get their child on the program?
   "Patients may come and see me for an initial visit, we can run the necessary tests to monitor medication and a few other things, and they can consult with our dietician Heidi Pfeifer or transfer to a local dietitian closer to them. Food Allergies will be tested. Then see me on a yearly basis. Labs should be monitored every 3 months, which include Electrolytes, Cholesterol, Liver panel, Carnitine, and Vitamin D".

My son is on the Glute Free Dairy Free diet, what are the differences between the two?
  "They are actually quite similar, when you take out the gluten your are removing a large portion of the carbs like pasta's and breads which will lower your glycemic index. The LGIT consists of high fats and meats and cheese are staples of the diet."

Once on the diet, how long before you can see results?
  "It may take a few months to kick in.  The diet must be consistent and limit carbs to 40-60 grams per day."

Who would not be a good candidate for this diet?
  "It is not recommended for those on a G-Tube.  Another option for them would be the Ketogenic diet.  There is a product called KetoCal and it can be used to assist with the ketogenic diet." 

Why don't more doctors suggest dietary therapy as a first and safe option for seizure treatment?
  "My guess is lack of awareness and maybe they do not want to change what they have always done, which is prescribe medication, the evidence is there to support dietary therapy. We are looking into preparing a package of material to help educate other dietitians".

Here is the publication on PubMed.

Dr. Thibert is hopeful that this information will get out into our community and more people will use the Low Glycemic index treatment to reduce seizures.  80-90% reduction is astonishing!  In my humble opinion, if your child with Angelman Syndrome or any seizure condition for that matter is still having seizures, you should try this diet!!  It breaks my heart every time I hear of someone in the hospital with seizures and it's the same thing every time. Doctor's don't know the cause, they check levels or do an eeg and in the end they  just prescribe more meds.  Been there done that too many times with Nathan!  It wasn't until I took his diet into my own hands, armed with good info and a plan and made it happen!!  You can too!  Dr. Thibert is willing to help each and every one of you!
You can contact Dr. Thibert at: Pediatric Epilepsy Program 175 Cambridge Street, Suite 340, Boston, MA 02114-2796 Phone: 617-726-6540

Another person who is willing to help is Angel Mamma Sybille Bellamy.  She has created a facebook page dedicated to what she is calling the Angelman Syndrome Diet.  She shares the recipes she uses for her son Max who has been on the diet for years.  She also shares important dietary info and articles.

For an example, Sybille has given me a meal plan for 1 day for Max

Morning breakfast: 2 tbs steel cut oatmeal cook in coconut cream. 1 table spoon of manna coconut 1tbs of coconut oil 1tbs of mix seeds-hemp, chia, sesame, flax seeds and 1 tbs of walnut butter.
Drink is herbal tea with coconut oil.

At school Max drinks herbal tea with MCT and a lot of water with lemon juice.

Lunch: 3 tbs of sheep yogurt, 2 tbs of grated apple, 1 tsp grated carrot, 1/2 avocado, 1tbs almond butter, 1tsp of MCT.

Nurse give him MCT (medium chain triglyceridearound) 2 pm 5ml at school.

Afternoon snack: home made almond milk, 1tsp coconut flour, cinnamon and 4 strawberries.

Dinner: vegetable soup- kale, spinach, carrots, onions, with one egg, grass fed butter, goat cheese.
He likes to drink before bed- coconut milk with 1/2 tsp of coconut flour.

During the day Max drinks a lot of water.

I hope you find this info helpful in your journey of helping your loved ones achieve the healthiest lives as possible.

~Lizzie