Not So Sweet

What is refined sugar?

Refined white sugar is almost 100% sucrose - a highly processed form of sugar beet or sugar cane plant extracts.  It contains no nutritional value (vitamins, minerals, proteins or fiber) and is sometimes called "empty calories" or just "junk food."  Sucrose can hide behind some different names, such as brown sugar, which is basically just white sugar with coloring added in.  Or "raw sugar" which makes you think you are consuming something more "natural" but is simply sucrose in larger crystals with a bit of molasses for color. Confectioners sugar is also just sucrose in a different form.  If you read food labels you may see sucrose listed as cane sugar, beet sugar, invert sugar, saccherose or turbinado.  

What does refined sugar do in your body? 

Consuming refined sugar causes your body to release insulin in excess amounts.  This release of insulin causes the body's blood sugar to drop, which is commonly known as hypoglycemia.  This hypoglycemia causes your body to secrete a simple amino acid called glutamate (a "messenger molecule" that tells a neuron to fire).  Calcium is then pulled from the body and enters the neuron to quickly clear the glutamate from the nerve cell.  Calcium must enter the neuron each time glutamate causes it to fire.  This prolonged calcium inside the cell can do damage and cause symptoms such as agitation, depression, anger, anxiety and panic attacks.  

Refined sugar contains no vitamins, minerals, proteins or fiber, therefore it must draw micronutrient stores out of the body in order to metabolize which in turn depletes the bodies stores of vital nutrients like calcium. Sugar has also been associated with inflammation in the body which can lead to disrupted immune systems, arthritis and cancer to only name a few.  Insulin is a hormone that regulates the bodies blood sugar as well synaptic functions in your brain.  When sugar is ingested regularly the body becomes insulin resistant which leads to Type 2 diabetes but it an also cause difficulty with the learning and memory functions in your brain.   

What does this mean for our Rett Girls?

Many of our Rett Girls are at risk for osteoporosis because of decreased mobility and, if they are prone to seizures, their antiepileptic drugs may also cause decreased bone density.  As stated above, when we ingest high levels of refined sugars our bodies release calcium, since about 99% of our calcium is in our bones it is a safe bet to assume that this calcium is being pulled out of our bones.  Once the calcium is used to clear the glutamate out of the nerve cell it doesn't go back into the bones it gets excreted in the urine.  Our Rett Girls are at such a high risk for osteoporosis because of their disease, eating refined sugars only increases this risk and the likelihood for decreased bone density.  

In addition, Researchers have discovered a direct link between refined sugar consumption and Brain Derived Neutropic Factor (BDNF).  BDNF is and important growth hormone in the bran that triggers new connections between neurons in the brain that are crucial for memory function.  Those who consume diets high in refined sugar have lower BDNF levels.  Our girls with Rett Syndrome are at a vast disadvantage since their BDNF levels are already lowered. 


Because many of our Rett Girls have difficulty with gaining weight we as parents and caregivers may try to "beef up" our girls by providing high calorie meals and snacks which may cause us to turn towards sugary foods.  In the process of trying to help our girls we may actually be harming them and causing their brains and bodies to work harder because of the excess sugar.  Instead try things like this high calorie, nutrient dense shake that will work to increase healthy weight gain without the refined sugars.  Another tip is to start adding olive oil for calories and fat. There are 14 grams of fat and 130 calories in just one tablespoon which mixes in well with things like unsweetened applesauce, rice, veggies, and mashed potatoes. Gotta have something sweet? Your best choice is raw honey.

Why You Should Think About Probiotics

What are Probiotics?

Probiotics are "live microorganisms (mainly bacteria) that offer a health benefit."  These microorganisms are either the same as or similar to the ones that naturally occur in our gut.  Probiotics are often referred to as the "good bacteria" as opposed to the germs that make us sick the "bad bacteria."  The most common types of these "good bacteria" are Lactobacilli and Bifidobacteria.

Where are Probiotics Found?

Probiotics can be found in some dairy products like yogurt and kefir that have active, live cultures, as well as in supplemental form such as powders, capsules, liquids and tablets.

What are Probiotics Used For?

Probiotics are used to promote a healthy gut flora.  The "good bacteria" in your gut can be depleted by processed foods, stress, illness, toxins, etc. and especially from antibiotics which kill ALL bacteria - the bad bacteria causing your sickness but also the good bacteria in your gut flora.  Probiotics have been used to aid in digestion and increase the absorption of nutrients from foods, as well as help with both constipation and diarrhea. Probiotics have also been used to treat certain diseases, anything from Irritable Bowel Syndrome, Crohns Disease and Colitis, diabetes, heart disease, depression, obesity, even the common cold and the list doesn't end there.  While researchers are still uncovering the health benefits of probiotics one thing is certain, 80% of your  immune system is located in your digestive system, so keeping it healthy certainly aids in preventing disease and increases your well being.

The Gut/Brain Link:

Our enteric nervous system (gut) and our central nervous system (brain) are actually connected through the vagus nerve which is the longest of all the cranial nerves.  This is our gut/brain connection.  It's because of this connection that we sometimes see neurological conditions, like autism, "cured" or improved.  Healing the gut has profound benefits to the brain which can be extremely beneficial to our Rett Girls.

How do I start my Rett Girl on Probiotics?

We strongly urge you to speak with your Rett Girl's GI specialist or pediatrician before starting any probiotics.  If she is cleared to start, we suggest starting extremely slowly, maybe with just 1/10th of a typical dose and increasing very slowly.  Your Rett Girl may experience GI discomfort, bloating, diarrhea or constipation if you move too quickly.  Eventually you may see benefits such as reduced screaming fits, more normal bowel movements, less need for laxatives, and hopefully an overall more comfortable girl.