Thursday, May 23, 2013

Go Gluten Free - Pamper Your Rett Girl's Gut

Many of our Rett Girls have GI issues or "tummy trouble" as we like to call it. Rett Syndrome is a neurological disorder, and it has long been studied that the gut and brain work hand in hand.
Some Rett Girls have allergies found through blood tests, but when the tests all come up negative for allergies and your Rett Girl is still uncomfortable there may be an intolerance that can't necessarily be detected.  In fact, gluten intolerance has been linked to everything from autism to clumsiness to GI disturbances to headaches and many many things in between.

What is Gluten?

Gluten is a protein food in wheat, oats (there is some controversy over whether oats are gluten-free or not, typically oats are contaminated during processing so they are not gluten free unless they have the certified GF stamp), barley, rye and malt. It is also used as a flavoring, stabilizing and thickening agent in many foods. Gluten is one of the most difficult proteins to digest, especially for an already compromised digestive system. We encourage all of our Rett families to research for themselves and consider removing gluten from their Rett Girls' diets.

How do I Start a Gluten-Free Diet with my Rett Girl?
The first and most important thing to understand is that this is a VERY slow process. You need to wean off gluten very very slowly to lessen the "shock" to your daughter's system. Start with the basics. If your family has pasta once a week, consider using a gluten-free pasta in place of a wheat pasta, then maybe switch out the bread from a wheat bread to a gluten-free bread, then change out the cereal to a gluten-free cereal. Keep changing out foods just one week at a time until eventually all the grain has been removed from her diet. NOTE: Be careful when you introduce a gluten-free alternative that you do so with a "healthy" gluten-free food.  Yep, that's right, not all "gluten-free" foods are healthy despite popular opinion.  Keep in mind that whole grains are best so opt for items made with whole grain: brown rice, quinoa, spelt, buckwheat or almond (or other nut) flour.

Now it's time to work on the "hidden gluten" like the those in some deli meats, salad dressings, processed foods and condiments. These can get a bit tricky. Local health food stores are a GREAT resource. They usually have a large selection of items that are labeled gluten-free (GF). Now even large chain grocery stores are starting to catch on and typically have a designated area and sometimes even a whole aisle full of gluten-free foods. Check as well to save money on many items.  Look for the GF label if you're unsure if an item contains gluten or not.  Some items that may have hidden gluten are listed HERE.

Remember to start slowly and be patient, it make take 6 months or longer to start to see results in your Rett Girl. Look for less irritability, better mood, attention and focus, more consistent bowel movements, better sleep and clearer skin, but don't expect this all to happen overnight.

What Foods are Gluten Free:
It may surprise you to know that many foods that you are already eating are gluten free and you probably just don't know it. For starters, ALL fresh fruits and veggies are gluten free! Fresh chicken, meat, fish and eggs are also OK for gluten-free diets! For starches: try rice, potatoes and quinoa. Fats are usually naturally gluten free as well - butter, coconut oil and olive oil are all great gluten free options.  If you cook from scratch and use whole food ingredients, going gluten free is easy.  Or, maybe going gluten free will help you to use more whole food ingredients which is great for the whole family!

Some gluten-free snacks include corn tortilla chips and fresh salsa, potato chips and popcorn! Not a bad start right? Many other popular "gluten" foods have a gluten-free counterpart - think cookies, crackers, etc. many of these foods are now being made with gluten-free flour - but remember, just because they're gluten free doesn't mean they are "healthy." These are still "once-in-awhile foods."

Gluten Free Formula and Blended Diets:
For our Rett girls (and boys) that are tube fed a gluten free diet can be as easy as switching formulas.  Some options include Compleat Pediatric by Nestle and Peptamen Junior.  If you are or would like to start making your own homemade blended formula going gluten free is as easy as eating gluten free. All you need is to make sure that your ingredients are either whole gluten free foods or have the GF seal and then you're ready to blend away!  A great resource to check out is the Blended Food Resource Guide.  We strongly urge anyone who may be starting a blended diet to seek the advice of a registered dietitian to make sure that all of your daughters nutritional needs are being met.

Thankfully we have LOTS of Rett families who are following a gluten-free diet, and they have helped us set up some great resources to share. We have everything from books to blogs to recipes and even tips on which restaurants cater to a gluten-free diet, and much more. These resources are great for those starting a gluten-free diet or even those who are seasoned gluten-free veterans.

If you are currently using a resource or have a great tip or recipe please share it with us, we would love to expand our resources!

By Bridget MacDonald, Coordinator
Bridget graduated from Western Michigan University in 1999 with a B.A. in Nutrition.  She worked as a clinical, registered dietitian at William Beaumont Hospital and was a program director at the American Diabetes Association prior to having her daughter, Annie, who is diagnosed with Rett Syndrome.

Monday, May 6, 2013


We are Pleased to have a guest blogger today, Terri Oxender FROM Tadpole Adaptive Inc. talks about Equipment and Rett Syndrome.


by Terri Oxender, Tadpole Adaptive Inc.
Therapists are often asked what equipment is generally recommended for a certain diagnosis. This is a very difficult question to answer on many regards. First, each child with a specific diagnosis presents with individual needs that are unique to them and their caregivers/families. Secondly, there is often great disparity between the levels of assistance children require within a diagnosis. The goal of this article is to try and steer caregivers towards equipment that has traditionally worked well for children with the diagnosis of Rett Syndrome.
Rett Girls
Rett Girls! (via
Within the article, different equipment needs will be explored with recommendations made for children who are able to walk and/or require minimal to moderate physical assistance and for children who require moderate to significant assistance for postural support and to complete daily activities.  Equipment will be explored to look at special needseating/positioningbathing/toiletingmobilityrecreation, and lifestyle.
The Rifton Activity Chair offers the ultimate in adaptive seating for school and home.
The Rifton Activity Chair offers the ultimate in adaptive seating for school and home.
First, let’s explore seating and positioning. Seating and positioning for this purpose is defined as functional seating. It allows for activities of daily living to occur (i.e. eating, learning, sitting with peers and family, accessing the environment). The first seat that comes to mind is the Rifton Activity Chair. This seating system is extremely versatile and will meet a girl’s need regardless of the level of physical capabilities. This seating system is available on a stationary base or a mobile base, it has the option for a high-lo base to make transfers easier or be able to work at a variety of heights, and it has the option for tilt and recline as well as a wide array of positioning supports. One of the best features about this seating system is that it can be modified to meet changing needs by adding or removing the postural supports. This is truly a chair that is highly recommended.
snug seat swan bath chair | tadpole adaptive
Second, let’s discuss bathing and toileting. Within this category, first it has to be determined if one piece of equipment will meet all needs or if two separate pieces of equipment are required. Once this is decided, here are the recommendations for the different scenarios. For girls that require less physical support, a simple toileting support like the Columbia Toilet Support or the Rifton Blue Wave Toileting System may be all that is required. Girls that require more significant physical assistance may benefit more from the postural support and added features of the Flamingo by Snug Seat.
For bathing, a roll in/walk in shower is ideal but not always possible. If a roll in shower is available, the Rifton Blue Wave Toileting System or the Flamingo can be used for showering as well as toileting. It is a two for one. If the traditional tub/shower combo is the only option, then there are a few pieces of equipment that can help increase safety. Depending on the size of the child and their ability to assist with a transfer equipment can make a huge difference. If the child is under the age of 6-7 then a bath seat like the Leckey Advance or the Snug Seat Manatee will meet the needs of most children regardless of the level of physical involvement with the use of the positioning accessories. If a caregiver has a bad back and is unable to lift or if a child is larger and more difficult to transfer, the Robby by Otto Bock with theQuicklift II Bath Lift System may be the best bet as it is light weight and easy to store. The easy storage feature is a plus especially if the bathroom is shared with other members of the household. Another product that is also worthy of consideration is the Columbia Elite Sliding Transfer System. This system allows the caregiver to transfer a child into the system and then roll it into the bathroom. Once in the bathroom, the device attaches to a base that is in the tub and then the child and bath seat are slid across the platform into the tub. A hand held shower is all that is needed to complete the bath. The Manatee by Snug Seat also offers a tub transfer feature. Bath equipment can be especially difficult to figure out the best fit. There are many things to consider when selecting a piece of bathroom equipment beyond the child including the size of the bathroom, number of people using the bathroom, the doorway width (usually the smallest in the house) which can limit how the bathroom is accessed, the features in the bathroom (i.e. tub/shower, etc.) and how the bathroom is organized and laid out. If at anytime, help is needed to help determine which piece of equipment will best fit your individual circumstances, please feel free to contact Tadpole Adaptive for guidance and assistance.
Convaid and other companies make awesome adaptive strollers to meet a wide variety of needs
Convaid and other companies make awesome adaptive strollers to meet a wide variety of needs
The third area is mobility. Within this section, the primary focus will be for partner assisted mobility devices for long distance mobility and for everyday use. Gait trainers are not being discussed within this article because each child may benefit from a different style and this equipment needs to be trialed with a therapist. Also, many girls walk better with hand held assistance due to a limited tolerance for holding onto the handles of a gait trainer. Now, let’s go back to themobility devices. For girls that are able to walk but just become fatigued with longer distances, a simple adaptive stroller is a great option. The Convaid stroller line has many features and options to choose from. The EZ-Rider is extremely light weight and offers the least postural support so it may be perfect for the families that would have infrequent use. For the families that would use it more frequently, the Convaid Cruiser is a great option to explore. It is positioned in tilt for fatigue management and offers additional postural supports. For girls that require the mobility device for the majority or all of their mobility needs an adaptive stroller is still a good option as long as custom supports are not required due to scoliosis or other orthopedic changes. The Safari and Rodeo by Convaid are great options to consider. Both of these strollers offer tilt and recline to meet posture and fatigue management needs.
Every girl needs a bike! Freedom Concepts, Rifton and others make Adaptive Bikes with tons of options for the safety, comfort and positioning for riders.
Every girl needs a bike! Freedom Concepts, Rifton and others make Adaptive Bikes with tons of options for the safety, comfort and positioning for riders.
The next category to delve into is recreation. Within this category, we will explore options for the active family. Freedom Concepts is a company that specializes in adaptive bicycles. The great thing about these bicycles is that they offer a wide array of positioning options and the capability for the caregiver to assist with propelling to help decrease the risk of fatigue. An additional piece of equipment to consider is a jogging stroller which provides a comfortable way for a child to travel while parents and caregivers enjoy the outdoors. The Special Tomato Jogger is a great option for the smaller child (smaller referring to height) that collapses easily and is economical. Larger jogging strollers are available, but play close attention to the size and ability to fold.
Beds by George manufactures customized safety beds that can be configured specifically for a child's needs!
Beds by George manufactures customized safety beds that can be configured specifically for a child’s needs!
The last category is lifestyle. This section refers to equipment that can just make life easier. The first piece to explore is a specialty bedBeds by George is a company that has designed special needs beds with a wide array of features and accessories to give a family peace of mind at night. These beds offer multiple features including side rails, high-lo feature and furniture like design. Second, a car seat can be a must for traveling. For girls that need just a little more than the seat belt to be secured in the car, the EZ-On Vest is a great option to look at and is very economical. Girls that need a little more support to a lot of support while riding, the Recaro line from Thomashilfen is a great product family to consider. These products offer an optional rotating base to make getting in and out the car easier. Finally, fatigue management is a big consideration with Rett Syndrome. Many girls just need a place to relax and chill out. Preferably not on the floor, as this is very hard for caregivers to assist with getting up and down. The Chill-Out Chair by Freedom Concepts is a great option to explore. It offers postural support and envelops the child for optimal comfort. The best way to describe it is a comfy recliner for your child. It is available on an optional mobile base, with a tray and in a variety of colors and fabric options so that it can be included in the family room and look like a piece of furniture.
Rock'er Chill Out Chair by Freedom Concepts
Dubbed “Alternative Seating” Freedom Concepts manufactures Chill-Out Chairs offering kids with special needs their own place to relax and unwind!
Now that all categories have been explored, comes the question, how will I pay for all of this?
The good news is that insurance will cover some of these items. Insurance will typically pay for 1 seating system or mobility system; the strollers and activity chairs are coded the same. Specialty beds are typically covered if proper documentation is provided, but it may be a long fight. Toileting systems and car seats are state dependent as far as coverage and bath chairs are typically not covered. However, waiver programs will provide funding for these systems. This can be a long process since it typically requires a denial from the primary insurance. Other funding options includeholding a fundraiser, contacting the local Lions or Kiwanis organizations, corporate programs like the Pepsi Refresh Project (not currently active), and the United Health Care Grant (one does not need to have UHC insurance to apply). If afundraiser is planned, please contact an attorney for special needs to properly establish a trust so that the funds can not be taxed as income which may potentially result in ineligibility for state funded insurance and waiver programs.
Lastly, Tadpole Adaptive understands the financial challenges that many families face. For this reason, Tadpole Adaptivehas developed two options to assist with funding for the necessary and much needed equipment. First, there is theTadpole Adaptive Registry. This is a special program modeled after a traditional gift registry. A family can create a web page and list the desired equipment, the cost and why it is important. The link can be shared with family and friends through social media and people can then directly donate money to the family and registry for the purchase of the equipment. It is a great way to answer the question regarding what to purchase for holidays and birthdays. For family members that may be less tech savvy the money can be sent directly to Tadpole Adaptive and it will be applied to the registry. Second, there is the 6 months same as cash option through Tadpole Adaptive. It can be difficult to come up extra money on the spot for a big purchase but when it can be spread out over a longer duration, it becomes possible to manage.
Tadpole Adaptive has a Registry Program where families can get friends and families to "Chip-In" towards Special Needs equipment.
Tadpole Adaptive has a Registry Program where families can get friends and families to “Chip-In” towards Special Needs equipment.
Navigating the world of adaptive equipment for children with Special Needs can be extremely frustrating, overwhelming, and difficult. If even it becomes too much, please feel free to contact Tadpole Adaptive where we are always willing to provide unbiased information, guidance, and advice.