Intro to Blended Food for Rett Girls

Are you relying on formula to feed your daughter through her G-Tube? Have you heard about a healthy alternative called a "blended" or "blenderized" diet? Here's the scoop:

A blended diet is simply taking everyday foods and blending them so they can be given through a feeding tube.  A blended diet can be very intimidating at first (it's much easier to open a can and have peace of mind that "everything is in there") but don't over think this one.  Think about how you eat, how your other children eat and how your Rett Girl ate before getting a g-tube.  A blended diet is as easy as preparing a meal - then blending it into a soup-like texture! (note: you will need a blender with a soup setting to get it to the best consistency - see below for recommendations).

We're here to give you a starting point and the resources you need to make an informed decision about blending.

The Benefits:

A blended diet is perfect for those who have food allergies or intolerances and those who are looking to add more fat, calories or proteins.  Your Rett Girl will essentially be able to eat the same nutritious foods you serve your whole family.

Bonus: Since you are in control of the ingredients you will be able to stay gluten-free, dairy-free, soy-free, etc.  You can add more fats if your Rett Girl needs to increase her weight, you can blend raw foods or cooked foods.  You will also have control over whether the ingredients are organic, the proteins are free-range, the dairy's are grass fed and the grains are GMO free. 

Many families have switched from formula to blended foods and have experienced wonderful health benefits. It's hard to say exactly if or how exactly your Rett Girl might benefit from a blended diet since each child is different and each family will blend different food and in a different way.  But what is clear is that fresh, whole foods are always everyone's best source of vitamins, minerals and nutrients.

Fresh whole foods are far superior in nutrients to anything that is processed and put in a can.  One of the most noted benefits of starting a blended diet is that the tube-fed person digests food better.  Of course! That's because food was designed for our bodies to break it down and use its nutrients. We weren't designed to break down chemicals.  With better digestion comes a list of positive outcomes to include: healthier looking hair, nails and skin; improved weight gain or weight loss as the case may be; less gas/bloating, constipation, reflux, and vomiting after feeds; and more energy - to name a few.

The nutrients that come from foods are just not the same as the nutrients that come in a can.  Science cannot replicate fresh whole foods.  Fruits and veggies are packed with antioxidant phytochemicals, which are basically just the natural compounds of the plant. There is also a natural combination and interaction of phytochemicals and macro nutrients (proteins, fats and carbohydrates) that occurs with whole foods that can't be duplicated by mixing different vitamins together. 

Where to Start:

This is the hardest part, starting.  Don't feel as though you have to jump right in, don't get overwhelmed.  Starting a blended diet is a process -- a very slow, gradual process. You will learn as you go.  

The very first thing you need to think about is what exactly your Rett Girl needs.  Make a list of any intolerances or allergies.  Next, decide whether your Rett Girl needs to maintain or increase her weight.

Finally do a little research into a simple, balanced diet and an approximate calorie amount.  This is the step that scares a lot of people, but think of it this way: it's not so scary to prepare a balanced meal for an oral eater and you typically don't spend too much time counting the calories on the plates of your other family members, so relax and don't overthink this part, either.  Ask your daughter's GI specialist or pediatrician for a referral to a registered dietitian or a nutritionist who may be able to start you out on the right foot if you want some support.

Transitioning:  

This is the part where you need to go slow.  A few things that will determine how slow your transition will be: how long your Rett Girl has been on formula and if she is still able to tolerate some oral feeds or not, and her overall tolerance.  

If your Rett Girl has not had oral foods in a number of years and you are not yet sure if she has any intolerance to certain foods you may want to start with introducing one ingredient at a time just as you did when she was a baby first starting out on solids.  You can either introduce them on their own in between feeds, or blend them in with her formula.  As you add foods you can start to combine them to give her more of a complete meal, decreasing the formula as you go.  

Some families start with baby foods.  Stage 1 baby food can be given straight through the tube and can sometimes be an easy and much less intimidating start when moving to a blended diet.  Stage 2 and up foods need to be blended and put through a strainer to make sure they will go through the tube.  Many families will start this way and just replace one meal or feeding for a certain amount of time and then replace another feeding and gradually work up that way.  

Other families jump right into blending and will choose to blend whatever the entire family is eating at a certain meal or create a "staple" meal that includes all the nutrients needed but can be customized by changing the fruit, veggie, or protein to give some variety.

You can find information on how to create your own recipe here or check here for some sample recipes.  Here is an example of one of the recipes:

1 C. dark chicken meat
1 C. amaranth
1 C. brown rice
2 C. sweet potatoes
1/2 C. walnut oil
handful of fennel seeds
4 C. water to blend

If you're not sure exactly how to move forward you can see how one Rett family moved through the stages of starting out here.

There are many different ideas of a "balanced" diet out there but a place to start is just by starting with the basic food groups and using appropriate portion sizes for your Rett Girl's age.  Or, you can get a little more technical and start with the "macro nutrients" or the proteins, fat and carbohydrates (carbs) in foods.

Every person has different needs but a starting point is to go for 40% of the total calories from carbs, 30% from protein and 30% from fat.  Carbs and protein have 4 calories per gram and fats have 9 calories per gram.  So, if you have a food that has 5 grams of fat then 45 calories of that food are from fat.  You can do this simple equation for each macro nutrient in each food that will be blended and get a total of what your Rett Girl will take in through her diet.  

Tips 

1.  Always check with your Rett Girl's doctor before changing her diet, but don't be intimidated.  You are your child's best advocate and if you see a benefit to transitioning her to a blended diet make sure you voice your position.

2.  Seek the advice of a registered dietitian or nutritionist.  If nothing else then for peace of mind that you are including all of the nutrients that your Rett Girl needs.

3.  Remember water!  You can find general guidelines of hydration needs here and can add the amount of water you need to each feed.  Some parents, however, find a huge benefit to giving water 30 minutes before each feed.  Even just an ounce or two can help "prep" her stomach for food and maybe help with gastric emptying.   

4.  Invest in a good quality blender like the blendtec or the vitamix.  These blenders have the ability to liquefy food so you don't need to strain your blend before you put it through the tube.  They can be pricey, but contact the company and they should give you a refurbished one that is discounted with a doctor's note.

5.  If you are planning on overnight pump feeds you will want to be very cautious about the food spoiling.  Try the Koala by Feeding Essentials to keep food cool throughout the night.  

Resources:

Blended Food Resource Group

Feeding Tube Awareness Foundation

Lucy's Real Food - a comprehensive site about blended food for people who are tube-fed

Vitamix Blender

Blendtec Blender

By Bridget MacDonald, RettGirl.org 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.

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 Amazon.com 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.


Resources:
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, RettGirl.org 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.

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!

Bike Riding

Temperatures are starting to go up, days are getting longer, the sun is shinning and flowers are blooming! All signs of spring! What a wonderful time to get your Rett girl out and riding a bike while catching some Vitamin D!
Riding bikes is not only fun it also offers a huge list of benefits especially for our girls:

1. Cardiovascular health - like most aerobic exercise riding bikes works your heart muscle, keeping it healthy and strong

2. Increased strength - It goes without saying that pushing the peddles of a bike can help strengthen your legs but for our girls who are not able to push the peddles on their own even just sitting upright and balancing on the seat strengthens their core muscles

3. Constipation relief - riding a bike not only strengthens our outward muscles but it also works on our inner muscles, and for our Rett girls slow GI systems exercise is wonderful and can many times help alleviate occasional constipation

4. Flexibility - Riding a bike is great for flexibility it offers a gradual stretch each time the peddle moves out. Bike riding can also help with our girls that have stiff knee joints or who tend to lock their knees into position, it can really loosen them up.

If your Rett girl already has a bike and LOVES it let us know! Click HERE and submit a review and picture of your Rett girl on her bike!

If your girl does not yet have a bike we have a few suggestions!

The Freedom Concepts Discovery Trike is designed to assist children with mild to moderate physical disabilities. The basic features offer support for the little ones that need some extra help. And for the children that require more support, there are several accessories to choose from to provide just what is needed. There is a great review on our rett girl site with a link to go to to purchase it.

The AmTryke are unique tricycles, which can be hand and/or foot operated, are designed to accommodate riders of all ages, sizes, and varying degrees of physical limitations. There is a review of this trike on our website as well as a link that will get you to the manufacturer. An additional bonus is that this manufacturer (AMBUCS) has a "Wish list" for individuals with disabilities who cannot afford the cost of an AmTryke. They have required forms that can be filled out and submitted to the AMBUCS Resource Center, that person's name is placed on their Wish List. When a chapter raises the funds the next name is picked off the list, they are notified and the trike is shipped to their home.

If you have been searching for a bike and are in sticker shock don't get discouraged. Check out this blog post for a list of ways to help with funding. You could also enter the Great Bike Giveaway through May 10, 2012 for a chance to win a free adaptive bike! For more information and to enter click HERE

We encourage you to get your Rett Girl up and on a bike but if that is not possible for her or if her doctors or therapists have advised against it there are other options! Check out some of our bike seats and trailers HERE!


Happy Riding!

A Gluten Free Easter

For many reasons holidays can be a tough for us Rett families. Being gluten free does NOT need to be one of those reasons though. Check out our tips for an easy gluten free Easter!

(Please use caution with all candies if your daughter has trouble chewing.)

Filling Easter Baskets:

• Easter-themed Dove chocolate products
• Easter-themed M&Ms chocolate products (EXCEPT for pretzel M&Ms)
• Plain milk chocolate regular-sized Hershey's Kisses in Easter-themed foil wrappers
• Jelly Belly jelly beans (INCLUDING licorice flavor jelly beans) and all Jelly Belly specially themed Easter packages
• Necco Candy Eggs
• Peeps marshmallow treats by Just Born (check the label to make sure it states "gluten-free" below the list of ingredients)
• Kraft Bunny Mallows and Egg Mallows (marshmallow Easter-themed treats)
• More gluten free candy ideas here
• Or better yet, skip the candy all together and buy a special toy instead. Find some ideas here.
(Courtesy of the Gluten Intolerance group)

Easter Feast:
Skip the lunch or dinner and opt for brunch instead.

• Eggs are gluten free!
• dye hard boiled eggs
• scramble eggs with cheese
• make these cute no crust mini frittas or these idaho sunrise or birds nests
• Sausage and ham can be gluten free
• We like the Jones Dairy Farm Brand, they have LOTS of gluten free options
• Muffins and Sweet Breads
• Yes, you can have muffins and this recipe looks delicious! It's also safe for our gluten free AND casein free Rett girls.
• Or try this yummy gluten-free lemon poppyseed bread.
  
  * Always check labels for the gluten-free symbol to make sure all your ingredients are truly gluten-free.
  
  
  
  
  Happy Easter from all of us at Rett Girl!

Finding Funding for Our Girls

A few posts ago we talked about The National Organization of Rare Diseases (NORD) and discussed how this organization has some resources to help financially with the cost of living with a rare disease.

That got us thinking.

We thought, there must be more help out there. Help for not only rare disease but children with special needs in general so parents don't have to feel like they need to figure out how to grow a money tree!

We did some digging and we're glad we did because we found some amazing organizations and resources that are out there and are willing to help girls and families like ours. We hope that if you are in a tight position and wondering weather you can afford to give your Rett Girl the equipment that you know she needs or pay for the therapy that you know she will benefit from that you will check out these links.


AMS Vans : Provides a list of available grants and other funding available to help pay for a handicap van.


Ability Found: A wonderful non-profit organization whose goal is to empower all individuals with disabilities. Ability found helps to find medical and rehabilitation equipment free of charge to people with disabilities who can't afford it. They use a team approach to accomplish this, working with the client, the provider and the vendor.


The Prayer Child Foundation: The mission of the Prayer Child Foundation is to have a hand in answering the prayers of parents with special needs children and helping these children to have the joys of a normal childhood. This foundation may help fund the request of children ages 18 and under.


The Wheel to Walk Foundation: The Wheel to Walk Foundation is a non-profit organization dedicated to making a difference in the lives of children age 21 and younger with special needs. They help children who experience difficulty obtaining funding from their insurance companies.


United Health Care Children's Foundation Inc.: The UnitedHealthcare Children's Foundation is a 501(c)(3) non-profit charity dedicated to facilitating access to medical-related services that have the potential to significantly enhance either the clinical condition or the quality of life of the child and that are not fully covered by the available commercial health benefit plan. This “support” is in the form of a medical grant to be used for medical services not covered or not completely covered by commercial health benefit plans


The United Cerebral Palsy Organization: Click on this link to find your local chapter who may be able to direct you to local organizations that aid in funding the needs of special children.


Easter Seals: Much like the United Cerebral Palsy Organization, Easter Seals has local chapters that may be able to direct you to local organizations that may aid in funding the needs of special children.


The Home School Foundation's Special Needs Children's Fund: Enables financially struggling homeschooling families to provide a quality education for their children with special learning needs.


In addition to these resources you may want to contact your Rett Girl's local Children's Hospital. Many of them offer a list of local resources that may help you with the financial challenges we face. Here is a great link to Cincinnati Children's Hospital.

Or you may want to contact your local Kiwanis Club or Lions Club who have been known to rally around their local special needs kiddos helping them with everything from funding equipment or medical bills to assisting with funding their parents travel expenses to conferences regarding their child's medical condition.


If your Rett Girl is on a Children's Health Waiver or a type of Children's Medicaid you may also want to contact them or check out your state's website to see if there are any special needs funds or resources that you can take advantage of. Here is a link to Michigan's Children With Special Needs Fund.


We hope that you find these resources helpful! If you do find the assistance that your looking for all we ask is that you give us an update - we thrive on seeing our Rett Girls shine!

Tube Feeding Resources

Many girls with Rett Syndrome need to be tube fed either exclusively or as a supplement for various reasons including aspiration and failure to thrive. The decision to have a feeding tube placed is a very difficult one for parents to make. There are so many emotions involved.

After coming home post-op, all a parent wants to do is make their girl comfortable and get her back to a normal routine. But it's the little things that seem to be the biggest obstacles. Things like shirts fitting too snugly around the new button and PJ's covering up the button making it hard to connect to the pump at night.

Our fantastic Rett families have done a lot of searching and have found some great resources for you and your tube-fed Rett girl. I personally like the comfy pads that fit around the stoma at Making Lemonade. There are also cute, soft covers for buttons at Belly Buttons and Belts. And easy ways to adapt clothing and PJ's at Tummy Tunnels.

Check out all these great ideas and more at Rett Girl.

If you are a parent facing a decision to tube feed and wanting support from parents who have been there, contact us! We are always here to support you!

Fighting a Rare Disease - A Little Help

We're coming up on Rare Disease Day - appropriately on February 29th! Fighting a disease is hard, but fighting a rare disease comes with it's very own set of hurdles. I'm sure we have all come across therapists, doctors, specialists and teachers who are well versed in special needs and childhood diseases, but have never heard of Rett Syndrome.

I imagine we have all gotten the "what? did you say Tourette Syndrome?" at least once or twice in our lives. These are definitely unique challenges that people with, say, Diabetes or any other well known disease don't have to deal with. We can explain our daughter's condition, and hand out a Purple Card, and feel a little better knowing we have at least spread awareness.

Unfortunately the hurdles don't end there. Many times rare disease have medications, testing and therapies that are difficult to fund but are desperately needed. We have to travel further --sometimes across the state-- for specialists and treatment. These costs add up quickly, too quickly, and can make even a financially strong family feel the pinch.

Thankfully there are organizations like the National Organization for Rare Diseases (NORD) that understand the financial strain of a rare disease and is working to help families get the care they deserve.


NORD lists several resources on their website, and has a Patient Assistance Program that can help pay for specific medications, testing, co-pays, insurance premiums, travel expenses and consultations with specialists that may not have otherwise been picked up by insurance. Of course you do have to qualify and then apply for assistance. Check out all the details on the NORD website here.

It can be very lonely, consuming and expensive to live with a rare disease, but it's so nice to know that organizations like this exist and are trying to make life just a little easier for us! Thank you NORD!

Bridget
RettGirl.org

Some "Tips" for the Holidays

With December upon us, and holiday decorations sprouting up all over, we are all gearing up for a special season. Yet, the biggest thing to overcome during the holidays is just pure stress. Everyone out there feels it, but when you have a disabled child thrown into the mix, stress can rise to a whole new level. Stress of disappointment over your daughter’s condition, stress of your daughter’s anxiety as the routine and activity level changes, stress of how family and friends act towards her, stress of travel, stress of food choices. Mix this in with some certain lack of sleep and it is a recipe for disaster.

So, think about changing things around, being more open to doing things differently, and being more open with those around you about what they can do to help make this holiday a more positive experience. Do not try to fit your daughter into your traditional routine. It is time to make some new traditions, keeping her needs in mind.

Handling anxiety and sensory overload – two key issues for Rett girls.

Anxiety often comes from not knowing what to expect. Talk to your daughter about events coming up several times before they happen. Explain to her where you are going, who will be there, what will happen, and what is expected of her.

TIP: Consider bringing along a portable DVD player with her favorite videos as a fallback. Although it is heartbreaking to feel she is not included, sometimes it is just better for her to be engaged with something familiar.

Sensory overload can strike us all. If your daughter can’t tolerate being amidst all the festivities – gift opening, big dinner, singing, etc – be sure to have a plan for her and talk with her about it.

TIP: Tell your daughter, “Today is a very special day. We have people coming to visit. If you are feeling anxious, you can stay in your room with your music or television. And then this afternoon we will have a special time where each person will come to you and spend a little time with you and give you a gift. I will help you give them their gift, too. Maybe we can even have pictures of each person and you can pick you who would like to see and give your gift to next!”

Creating a more relaxing environment:

Rett girls usually love twinkly lights. Consider having them in more places than around the tree and outside. How about in her room?

Opening presents: Traditional paper gift wrap can be a nightmare. Rett girls will get paper cuts and even try to stuff the paper in their mouths, so maybe someone else handles opening for them. But imagine the combination of loud ripping paper and someone else opening your gift? I think I would cry too.

TIP: Wrap her gifts in fabric. Even if it is just one of your colorful T-Shirts with a big bow! It will look pretty, feel soft, and it will be quiet – and she can actively help open her own present!

Help from visiting family members and friends:

This is a great opportunity to be a really big help! Even just 5 or 10 minutes here and there with your special Rett girl will be very welcomed. Consider these things:

Read her a book.
Brush her hair and put pretty bows in for her.
Help feed her.
Take her for a walk.
Give her a foot massage.
Listen to some music together.
Sing her a song.
Tell her a story from your past holidays.

Make this holiday a real team effort. Start talking with you family now about ways to help.

And be sure to check out our Holiday Gift Idea List! Happy Holidays everyone!!! I hope you each find that magical moment that makes your heart skip a beat and brings a smile to your face.

- Ingrid

Rett Syndrome Awareness Month - Mom on a Mission

It's Rett Syndrome Awareness Month - let's make some noise!

It's me, Terri. I am Mom, Rett Mom, Advocate, wife and all around Autism awareness terrorist. I run RettGirl.org and a YouTube channel called Rett We Can for Girl Power2 Cure.

Why? Well thank you, I’m so glad you asked. I hope you can pass on this blog and help us spread the word about the hundreds of thousands of girls fighting Rett Syndrome.


My 7-year-old daughter Abby has Rett Syndrome - an X Chromosome Linked form of Autism and the only form of Autism with a known genetic cause. Because the gene mutation is on the X Chromosome, it mainly affects girls, but there are a handful of boys that have it too and they are just as deeply affected.

The gene of which we speak is called MECP2. It is known as the regulatory gene between your brain and your body. It is the gene that tells every other gene when to turn on and off. Strangely, this gene doesn’t play much of a role until your child is between 18 months and 2 years of age. Up to that point you have a seemingly normal, typical child doing all the things they are supposed to do.

Once this gene kicks on, if it is faulty like in Rett Syndrome, everything start s to shut down. There is a rapid period of regression where most every acquired skill is lost. Most purposeful hand use disappears almost immediately and is replaced with a constant wringing, tapping or hand mouthing. All speech goes during this regression stage, and your child turns physically back into an infant where she will stay…trapped in her own body until a cure is found.

Good news! Rett Syndrome is poised to be the first curable neurological disorder. It was announced in 2007 that Rett Syndrome had been reversed in laboratory mouse models. It’s there and until we can get it funded in a way that gets it right for humans, our babies remain locked in a world they can only observe.

One major debilitating factor in Rett Syndrome is called Apraxia. Apraxia is like this: the will to carry out intent is there, but the physical ability is severely delayed or not there at all. Some describe it as having Autism, Cerebral Palsy and Parkinson’s all rolled up in one little girl.

Need to Knows:

• Debilitating neurological (movement) disorder that predominantly affects females.



• Baby girls are born "normal" but begin to lose acquired skills between the ages of 1-3 years old.



• Caused by a single gene mutation that leads to underproduction of an important brain protein.



• The most severe form of autism.



• The leading genetic cause of severe impairment in girls - most cannot speak, walk or use their hands.



• Despite their physical disabilities, girls with Rett Syndrome are believed to be functioning mentally at a much higher level than previously thought.



• As prevalent as Cystic Fibrosis, ALS and Huntington's.



• Another little girl is born with Rett Syndrome every 90 minutes.



• Rett Syndrome is a potentially REVERSIBLE disorder. Research has proven once protein levels are back to normal levels, symptoms subside.

Why have I never heard of this you may ask? That’s why we are here today. To inform, educate and raise awareness so little girls like my Abby will no longer be held in the unknown.

Want to learn more about Abby and contribute to research? Follow this link to her personal story at Girl Power 2 Cure: http://girls.girlpower2cure.org/abby

Thank you - PASS IT ON!

Terri

Nuk Brush

Good Day RettGirls.

This week's feature at RettGirl.Org is the Nuk Brush. You can find this neat little item in our Product Reviews under Sensory.


I have had a Nuk Brush in the bathroom for Abby since her teeth started coming in. Recently, I have had several parents tell me that it is a great tool for oral stimulation. One even commented that it really helped their tube fed child learn to eat again.


Last week at Hippotherapy the Speech Pathologist that runs the place had me bring Abby in early so she could do some oral motor exercise with her. Abby has become quite the drooler lately.


The first thing she got out was this Nuk Brush set. She ran the round brush in a C pattern in her cheeks. She used the flat brush to go over her gums. When she put it on her tongue she immediately wrapped her mouth around it and sucked on it like a straw. I haven't been able to get her to use a straw for almost a year. In one session!


We took the set home and have been using it every day. In the last week we have gotten Abby to at least sip from a straw and eat whole jars of food instead of one bite. I didn't expect results that fast but I'm going with it.

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from the company website:

This brush is recommended by Speech Pathologists as well as feeding clinics to wake up the mouth before feeding.The Nuk™ brush massager is used for oral massage, oral stimulation and exploration. It stimulates lateral molar ridges, reduces oral hypersensitivity, and helps develop a tongue groove. The flexible, nubby texture offers valuable sensory input for the child’s mouth. Though this brush was designed initially for teething infants, it has made its way into therapeutic settings as an invaluable tool for sensory exploration. The nubby surface can hold tastes of liquid, purees or crumbs while it is used with supervision as a “spoon” for initial feedings. The NUK brush is approx. 5″ long. Use only under adult supervision.

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Good luck everyone!

http://rettgirl.org/2010/08/nuk-brush/




Terri V~For RettGirl

Britax Traveller Plus EL

Hello RettGirls!

This week at RettGirl we are featuring the Britax Traveller Plus EL car seat. You can find this incredible car seat in our Product Reviews under Positioning.

We have had this car seat in our van for about a year now and we are so glad we do! We had originally tried to purchase a different one at twice the price when the order taker on the phone had me take a look at this one online. She mentioned the comfort, durability and headrest over and over. I was sold, and it arrived within 2 weeks.

We call it "Abby's Lazy Boy." It is so soft and cushiony. With the headrest or wings, as they call them, we have not had one incident of head flopping. The only bad thing I can say about it is I am pulling a sleeping child out it every time we go to take her out of the van. That is not always a bad thing though. Sometimes when nothing else works to get her to sleep...into the van she goes. A drive or 2 around the block usually does the trick.

Is this car seat just what you've been looking for? Do you have one and want to share your review with us?

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From the company website:

Britax Traveller Plus – a forward-facing car seat specifically designed for children with special needs.

The Britax Traveller Plus car seat model meets USA standards (FMVSS 213) for safe and secured travel for your child in a vehicle.

•Forward-facing car seat for children 22 – 105 lbs. (10 – 47.6 kg)

•Appropriate for children with mild to severe disabilities

•“Thigh Depth" should be equal to or greater than the “Seat Depth" (within + or – 1 inch) to promote a proper seating position

The Britax Traveller Plus includes the following standard features:

•Height-adjustable Headrest

•Removable & Washable Fabric Cover

•5-Point Harness (extended lengths of 3" on the belt and the crotch strap)

•Foam Abductor

•Tether Strap – used with ALL configurations

•LATCH Strap – used for children between 22 and 48 lbs (10 kg & 21.7 kg)

•Recline Bar – installs the car seat at a 26° angle for children that need assistance maintaining head control

•Pad Kit to adjust the amount of support for your child

•Buckle Guard


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Need I say more? I haven't met a family that has one that doesn't absolutely rave about it!

Hope you all are have a wonderful week! Stay safe!

http://rettgirl.org/2011/08/britax-traveller-plus-el/


Terri V~For RettGirl

Stylin' in Cardboard?!

Good day Rett Girls! Today we have a guest blogger! Stefanie Gutierrez gives us the scoop on her daughter's new adapted chair....made from cardboard!

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After receiving Anna’s adaptive stroller and feeding system earlier this year, we were at a crossroads, as most of my fellow Rett-mama’s can relate to. We were thankful for the chair that would help keep Anna nice and straight and position her really well, but we were sad that she spent most of her days in it. Anna is non-ambulatory and can’t sit on her own.

So she had breakfast in it. Then her morning therapy sessions. Then her snack. Then lunch. Then dinner then….

What happened when she just wanted to watch television with her brother, Gabriel? When she just wanted to “read” a book with us or “color” on her iPad? If we weren’t able to hold her, she was in that blessed chair that we were all – including Anna – sick of.

We were looking around for a relaxing chair… A lounge chair of sorts that Anna could just relax in and she knew was just for her down time. I had heard bean bags were great options for some.

I kept thinking about when Gabe was three, and how he had this little red Ikea chair. Anna should have something like that, too, I thought.

Enter Adaptive Design. Dr. Sasha at the Rett Syndrome Clinic at Montefiore had suggested it at one of our prior appointments. After a quick phone call, we had a very informal get-together with Antoinette, one of the brains behind the project. It seems she can create anything you’d like out of any possible reusable material on the planet. We walked in and they had an entire showroom full of chairs of any kind – think rocking chairs to high chairs to booster chairs – all made out of 100% cardboard.

We explained to Antoinette the desire for this lounging chair we had in mind and she immediately grasped what we were going for. Within a week they had built a chair for Anna out of cardboard. It has a pummel to keep her positioned correctly and a Velcro wrap keeps her upright. A tray fits in the front. The cherry on top? A local artist who donates their time and talents to Adaptive Design painted the chair in colors of Anna’s choice and her favorites… Think purple, butterflies, flowers, ladybugs. It was delivered a few weeks later and it is her relaxing chair. Exactly what we wanted.

Take some time to check out their website: http://www.adaptivedesign.org/.

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Thank you for sharing Stefanie! If you would like to share something with all the Rett Girls out there, send me your story!

Terri V. for RettGirl