Nutrient-Dense Gluten-Free Snacks

Many of our Rett Girls struggle with weight gain.  It's difficult to keep weight on a kiddo who has trouble chewing and swallowing and spends so much time and energy in school and therapy and just trying to make her body cooperate.  There are only so many hours in a day, and we don't really want every spare moment to be spent at the table trying get some extra calories in. We also don't want those extra calories to be empty, rather we want them to assist in building strong, lean muscle.  A great place to start is with snacks!


PowerBalls:  Click HERE for the recipe.  The peanut butter adds lots of protein and fat, the flaxseed is great for adding extra fat, calories and fiber, the dried fruit gives not only sweetness but also fiber and antioxidants.  These are great for the whole family and are not only an easy, portable snack but a great quick breakfast, too!

High Calorie Shake:  Click HERE for the recipe.  Hemp Milk is dairy free and is high in fat (6 grams per 1 cup!), protein and is fortified with Vitamin D and calcium.

Trail Mix:  Skip the preservatives and high price tag and make some yourself with almonds or walnuts, dark chocolate, and dried fruits (if dried fruits are too difficult for your Rett Girl to chew try freeze dried fruits, they are a bit crunchy and melt in your mouth - they will "soak up" moisture from other foods though so if you are using in trail mix eat it as you make it, don't store it).

Greek Yogurt:  Make sure to get the full fat Greek yogurt, some are low calorie and low fat but that's not what we are looking for with our Rett Girls, they get the "real deal!"

Whole Milk Cottage Cheese:  High in protein and fat.

Almonds:  These nuts are packed with Vitamin E, B-vitamins, calcium, magnesium, potassium and zinc not to mention high in good fats and protein.  A handful of almonds is great but if your Rett Girl is not able to chew raw almonds try substitute almond flour for whole wheat flour or rice flour in your recipes.  You may need to add some leavening agent (almond flour is heavier) and a bonus is you may also find that you can reduce some of the sweetener since almonds have a naturally sweet flavor.

Homemade Egg Salad:  Click HERE for the recipe.  Eggs are a great source of protein, opt for free range, organic eggs which are typically higher in nutrients or better yet, try to get some eggs from your local farmers market.

Avocados:  high in fiber and good fats avocados are great alone or mash them up and use them as a dip for veggies, gluten free crackers or corn chips.

Homemade Potato Chips:  So easy and they taste GREAT!  Just slice up really thin potatoes or sweet potatoes, lay in a single layer on a cookie sheet and drizzle with olive oil and sea salt then bake until crispy!  Try these dripped in smashed avocados - YUMMY!

Hopefully we gave you some new and easy ways to add some good calories to your Rett Girl's diet.  Please remember to do a reality check when trying new foods - Rett Girls have very sensitive GI systems, start new foods VERY slowly.  All Rett Girls have different chewing and swallowing abilities, so be extra cautious with foods that are choking hazards like dried fruit and nuts, if your Rett Girl has difficulties with these don't push it.  You may want to try putting the ingredients into a blender to make them easier to digest.

If you have any nutrient dense gluten free recipes you want to share we would love for you to leave us a comment!

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.

IEP HELP!

Our second blog post for back-to-school is all about the IEP (Individual Service Plan).  Ugg, we even hate writing those dreaded three letters, but, fear not, we're here to equip you with lots of tools to get your Rett Girl all that she deserves from school.

Before even getting to the IEP planning stage, however, take time to educate your daughter's team about Rett Syndrome. Use this easy link to our Q&A for Therapists on the PediaStaff website to send out to teachers, aides, therapists, counselors, and even the school principal. The sooner they understand your daughter's complex issues along with her strengths, the sooner you will be able to develop a good plan for her.

IEP BANK:

The first thing you need to know about an IEP is what one looks like: what are some goals, what do other Rett Girls have written into theirs and what is really important to include?  We have a "bank" of IEPs that are organized by grade level.  Check out our IEP Bank HERE and get some great ideas.  Then, stop by our Example IEP goals and Objectives page HERE for even more ideas!

RESOURCES:

• A great book to read and pass along to your Rett Girls team is "Pathways to Learning in Rett Syndrome"  which offers accessible advice on the special education needs of girls with Rett Syndrome and is beneficial for both parents and those working with Rett Girls.
•  "Including Students with Sever Disabilities in Schools" is also a good book to reference when trying to push for inclusion with your Rett Girl.  
• Wrights Law has some amazing books to educate yourself on the ins and outs of Special Education Law, they also have a great website with additional resources and a list of dates and locations for their training programs.  
• For some quick and easy tips you can use and implement right now check out this great article from the Friendship Circle Blog 9 Steps to write an effective IEP for your child.  

COMMUNICATION:

Communication is always one of the biggest issues with our Rett Girls.  Our girls need to have a way to communicate, they have so much to say and need a way to express themselves.  We encourage you to push your school to allow your Rett Girl to utilize an AAC (Augmentative and Alternative Communication) device or system.  Apraxia makes it very difficult for our girls to be consistent which can some times be mistaken as them not understanding.  A couple great resource to use and pass on are Linda Burkharts Multi-Modal Communication Strategies for Children who have Rett Syndrome and this letter from RJ Cooper about Girls with Rett Syndrome.  These may help your team understand your Rett Girl a little better and may be helpful with setting up communication goals.  

SOCIAL GOALS:
Lastly, we all know how social our Rett Girls are so don't forget to include social goals in her IEP.  A great way to help her classmates learn about her abilities and understand her a little better is to send a letter home to the parents in your child's class.  This can help answer lots of questions and make your Rett Girl a little less intimidating to their peers.  We have a sample letter drafted HERE.  

Remember to take a deep breath, try to relax and know that as nervous as you are for a new school year to start your Rett Girl is equally as nervous.  Help her to ease into a new year by being confident about her goals and where she's placed.  If you need any assistance Rett Girl is always here to help!  

Back-to-School Shopping

Have you checked your calendar lately?  It's August!!  Each year our summers seem to go faster and faster, and before you know it it's back-to-school time!  No need to worry, we are setting up a series of blogs to help you get back to school quickly, easily and successfully!

One of my Rett Girl's favorite things to do is shop for back-to-school fall clothes!  Ok, I admit it, so do I! She's just so adorable and so easy to shop for!  In all honesty though some things are just either not so fun to shop for or are hard to find.  But, thanks to our wonderful Rett parents we've got you covered on the tough stuff!

Many of our girls wear AFO's and with braces you need a whole new set of socks, ones that are long enough, seamless and made of whicking material that breathes.

Check out these standard socks in colors that go with every outfit and are super soft!

Or if your girly is a bit more trendy check out these fun socks!

Now that we've got the socks, we need some new school shoes, right?

This website has shoes that are GREAT for fitting AFO's. They have all sorts of styles and sizes including lots of different widths as well as extra "deep."

Hatchback shoes are also great for AFO's.  They're super easy to get on and off with a back that opens up so you can just slide your Rett Girl's foot in.

And these Converse hightops are also a super fun shoe and are easy to use with AFO's or with our girls who don't wear braces but might curl their toes while trying to get a shoe on.  These shoes also open up in the back with Velcro closure so it's easy to slip her foot in and out.

Some of our girls have special clothing needs to make being at school a little easier.  Pants that are higher in the back because they are sitting in their wheelchair, or maybe a quick, discreet way to access a port for tube feedings or a little more room in the seat of their pants for diaper.  If your Rett Girl requires any of these check out this great site for lots of options and custom clothes.

Accessories are our FAVORITES!  And we've got LOTS of them!  

For cute and protective bibs check out Special Needs Creations.  Or if you are in need of new elbow immobilizers check out this site and buy bibs and arm braces that match!

Who doesn't LOVE bows and hair ties?  Check out Special bows for Special Girls for lots of cute hair accessories.

Does your Rett Girl get cold easily or have poor circulation?  Maybe try some leg warmers.  Check out Baby Legs for lots of different colors and patterns.

Maybe your Rett Girl has a g-tube? To protect the port site in a fun way check out Making Lemonaid for cute pads.  Or try Tummy Tunnels - they have adorable iron-on patches that provide access to g-tubes without damaging clothing.

Don't forget to check out our list of amazing Rett parents, siblings, grandparents and family members who sell some great products.  And, head to our Girl Power 2 Cure shop for some great GP2C items, of course!

We hope that we helped with make your back-to-school shopping a little easier and fun.  Stay tuned to our Rett Girl blog for more back-to-school tips and ideas!

20 Summertime Boredom Busters

Summer is an awesome time to relax, spend time with friends and family, and take a little break from school and work. However, come mid-July kids start to get restless, parents start to loose their patience and everyone is ready to be back on a schedule, right?  The limited mobility, hand function and communication makes it hard to find fun things our girls are able to participate in.  Here are some great tips to get you through that summertime lull with your Rett Girl!

1.  Summer Reading Program - visit your local library for a reading program where your Rett Girl can earn some fun prizes or check out this one from Barnes & Noble - you read 8 books to your Rett Girl (or if she can read you can have her do it) then fill in the form and take it to your local Barnes & Noble so she can pick out a FREE book!

2.  Museum - check out a museum in your area.  Kids' Hands-on museums are great!  Your Rett Girl may not be running around and interacting with every experiment, but she'll for sure be able to do some of them with help and it's a great learning environment.

3. Picnic Lunch - head out to your local park or just spread a blanket out under a tree in your yard.

4. Home camp out - All kids like to camp out! pitch a tent in your back yard if your Rett Girl is able to handle that, if not set up some blow up mattresses in the basement or the family room.  If your girl is on a feeding tube remember that the pole is mobile, wheel it into your room and sleep with her on blow up matresses or into siblings room so they can have a slumber party or have the siblings sleep in her room if that's where she's comfiest.  Just make it FUN!

5. Bonfire/smores - Head outside for the evening, set up a bonfire and make smores.  No bonfire outside? No problem, make them in the oven - layer graham cracker, chocolate and a marshmallow on a cookie sheet and broil in the oven until the marshmallow is golden brown, pull them out and top with another graham cracker - then enjoy it outside!  TIP - marshmallows are gluten free and check your grocery store for gluten free graham crackers.


6. Make your own sprinkler that you can push your daughter through in her wheelchair!  This is TONS of fun but you may want to set it up the night before, they say it takes a half hour but I'd give myself an hour for sure!  Instructions and supply list Here

7. Kids Bowl Free - sign up HERE.

8.  Visit an Adaptive Playground

9.  Go to the movies!  check out the deals at Cinemark theater if you have one near you.  Or, if your Rett Girl gets antsy at the theater check out Sensory Friendly Films that may be playing in your area.

10. Visit your local zoo

11. Mess-Free Finger painting - Check it out HERE!  Great for our girls who hand mouth, you don't have to worry about them eating the paint!

12.  Make an outdoor tent and read!

13.  Read a book and watch the movie.  It's always fun to read a book together and then go check out the movie to see how it compares.  One of our favorites is Judy Moody and the Not so Bummer Summer!  Grab the book at your local library then watch the movie on Netflix.

14.  Visit your local farmers market

15.  Face painting/body painting - Kids LOVE to get their face painted at fairs, why not do it at home!  Check out this Klutz Body Crayon Book and get creative drawing on bracelets and fake flip flops!

16.  Spa Day!  Do mani's and pedi's at home.

17.  Dance Party - Crank the music and DANCE! You can even buy a mini disco light to add to the fun!

18. Catch a frog/snake/crayfish or buy a fish to feed and observe - what a fantastic learning experience!

19.  Visit an indoor playground - indoor playgrounds are popping up everywhere and many of them are sensory friendly and parent friendly which means you can hop right in and enjoy the fun or help your Rett Girl navigate, play and slide.

20. Ride Bikes!  If your Rett girl doesn't have a bike yet look into it HERE.  Bikes offer lots of benefits and their just FUN! Here is a link to a Special Needs Bike Trailer by Wike and something called the i-GO!

Gluten-Free Cookout

A favorite summer activity is getting together with family and friends for a cookout, however, somewhere between the hot dogs and the pasta salad a gluten-free kiddo can feel kind of left out, and hungry!  Don't worry, we've got you covered with a few ideas!  Check out these great gluten-free recipes that are perfect to bring to a cookout so your Rett Girl has something great to eat (that everyone else will love, too).

Have a favorite recipe to share? Be sure to leave it in the comments section below!

Cobb Egg Salad - from kitchendaily.com

Ingredients

• 3 tablespoons nonfat plain yogurt
• 3 tablespoons low-fat mayonnaise
• 1/4 teaspoon garlic powder
• 1/4 teaspoon freshly ground pepper
• 1/8 teaspoon salt
• 8 hard-boiled eggs (see Tip)
• 1 ripe avocado, cubed
• 2 slices bacon, cooked and crumbled
• 1/4 cup crumbled blue cheese

Directions

1. Combine yogurt, mayonnaise, garlic powder, pepper and salt in a medium bowl.

2. Halve eggs and discard 4 of the yolks (or save for another use). Add whites and the remaining 4 yolks to the bowl and mash to desired consistency. Gently stir in avocado, bacon and blue cheese.

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Gluten Free Chick Pea Apple Slaw - from Joyous Health

Ingredients:

1 Granny Smith apple, peeled and grated
Juice of 1/2 a lemon, freshly squeezed
14 oz can of organic chickpeas or navy beans, drained and slightly mushed with a fork
1 carrot, peeled and grated
1/4 cup pumpkin seeds
1/2 cup dried cranberries
1 tsp red wine vinegar
1 tsp walnut oil
4 slices of your favourite gluten-free bread, toasted

Method: Squeeze the lemon juice onto the grated apple. Mix the apples, beans, cranberries, sunflower seeds and carrot together. In a separate dish, mix the red wine vinegar together with the walnut oil. Add the dressing to the apple mixture

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And for dessert, check these out:

Chocolate Chip Banana Squares - from Brunch at Saks

1 1/2 C. gluten-free flour (I use a mix of Bob's Red Mill white rice flour, tapioca flour, potato starch)
1/2 tsp. gluten free baking soda
1/2 tsp. baking powder (I like Rumford's because it's aluminum-free)
1/4 tsp. salt
2 ripe bananas, mashed
5 Tbs. coconut oil (or any vegetable oil)
3/4 C. cold water
1 tsp. vanilla

1/2 c. chocolate chips (Enjoy Life are gluten, dairy, soy, nut -free).
optional 1/2 C. of  walnuts 

Preheat oven to 350 F. Line a 9x9 square cake pan with parchment paper. Set aside. In a bowl, mix flour, baking soda, baking powder, and salt. In a separate bowl, mash bananas and stir in oil, water, and vanilla until well blended. Make a well in dry ingredients and pour in wet mixture. Stir until just blended. Add in chocolate chips and give it one last toss. Pour into prepared cake sheet.  Bake 40 min, or until toothpick comes out clean.