Shedding Some Light on Sunscreen

Summer is here! BIG QUESTION on our minds: How do we protect our girls from the sun without harming them in the process? There is actually a lot of controversy out there about sunscreen.  We hear it's good, essential in fact, but then we hear about toxic ingredients and that it's imperative that we get Vitamin D from the sun.  So what are we supposed to believe/do?    

First, we'll give you a little rundown on the topic.
Second, we will recommend a great nontoxic sunscreen!

Take a look at the different types of ultraviolet light, UVA and UVB.  

UVA waves are fairly constant during the day and throughout the year.  They can pass through a cloudy day and penetrate your skin deeply causing free radicals and painful sunburn.  

UVB waves are low in the morning and evening and peak at midday.  They are the waves that are responsible for helping your skin produce Vitamin D.  

Experts say the best way to get your Vitamin D but stay safe is to have limited sun exposure during the strong mid day sun everyday.  This means about 10 to 20 minutes of strong sunlight in order for your skin to take in the necessary UV rays to produce Vitamin D.  After your 20 minutes in the sun stay in the shade for the rest of the day or cover your skin with clothes.  This is the ideal for the most beneficial and safe sun exposure but is not always possible.  

Busy families are out at the beach all day or playing in the pool or out at baseball games - places where there may not be ample shade in the ideal places and most of us don't want to be covered from head to toe in clothing on a hot day.  So almost all of us need protection from sunscreens from time to time.  So how do you pick a safe one?

First you need one that protects again UVA and UVB rays.  UVB rays are "good" but only in moderation, they can also cause free radicals with excess exposure.

ABSORB OR BLOCK?
There are two kinds of sunscreens: chemical and physical. Chemical sunscreens ABSORB the UV radiation. Physical ones block UVA/UVB radiation by reflecting the rays/physically blocking them.

                                     
YIKES! Second, there is a LONG list of chemicals commonly found in the "chemical" sunscreens that can be toxic - check your sunscreen bottles and if they contain any of these chemicals you might want to consider tossing them:
 
oxybenzone
abobenzene
retinyl palmiate
parabens
fragrance
Para amino benzoic acid
Octyl salicyclate
Avobenzone
Cinoxate
Padimate
Dioxybenzone
Phenylbenzimidazole
Homosalate
Sulisobenzone
Menthyl anthranilate
Trolamine salicyclate
Octocrylene

Third, take a look at the other kind of sunscreen: PHYSICAL sunscreen. This is a safer kind of sunscreen that is not made from chemicals but rather minerals.  Common minerals are Zinc Oxide and Titanium Dioxide.  These minerals are great for keeping out the suns harmful rays but may be harmful to you if they are broken down into very small particles called nanoparticles.  Nanoparticles are particles so small that they can actually penetrate the skin and get into the body where they can attack DNA and cause all sorts of damage.  Sunscreen manufacturers started using nanoparticles in their products because it helped the sunscreen to rub in quicker (think spray sunscreens) and avoided that white residue.  Sunscreens without nanoparticles may take an extra minute or 2 to rub in but it's well worth it to avoid the toxicity.  

OK, so just where do we find sunscreen that fits all of these requirements?  

We're so glad you asked!  Let us introduce you to Jenn Miller, Sales Consultant for Ava Anderson Non Toxic, a manufacturer of truly NON TOXIC and GLUTEN FREE personal care products that are not only safe but incredibly effective.  Jenn has partnered with Girl Power 2 Cure and is donating 100% of her commission from sales of this amazing sunscreen through the end of July 2012.  Her donation will be on behalf of Julianna (JuJu) Brooks, one of our Girl Power 2 Cure girls, an amazing little girl who can light up any room. 

Here's what you need to do to order:  
Please visit www.AvaAndersonNonToxic.com/JennMiller  (be sure to place your orders through this link and when checking out enter 6364 as the party # so the sales can be credited to Girl Power 2 Cure.)

There are a bunch of other products on her site to check out too! If you have any questions or would like additional info on Ava Anderson Non Toxic or their products please contact Jenn at Jenn.Miller76@hotmail.com.

We want to keep all of our Rett Girls safe this summer! Whether or not you choose not to order from Ava Anderson Non Toxic, please keep in mind all of the information we shared here and have a safe and healthy summer!  

Everything iPad - Cases, Mounts, Holders, Switch Control, Apps

Rett Girl Kelly on her iPad
see more videos of Rett Girls on our Rett We Can! video channel

So for the past couple years Apple has taken the special needs community on an exciting ride with the iPad. An amazing tool that many of our special needs kiddos can use to play age appropriate games and learn new concepts. Many have even used it to find a voice for the first time.

This technology is amazing but there are LOTS of questions involved.  The first one being "Could MY Rett girl benefit from an iPad"?  A fantastic question since they aren't cheap and all kids are different.  This book may be a great place to start if you are here wondering about investing in the iPad.  It is $24.50 for the book or $9.99 for the Kindle or Nook version.

CASES:
Once you decide an iPad is right for your Rett Girl you need to protect your investment with a great case. One that can be dropped because we all know it will be, one that has a screen protector and can with stand the occasional drool or spill.  A great choice is the GumDrop Case or The Big Grip.  Or another option that may be more economical is the Tabtoob. 


After finding the right case you now need a stand for your iPad.  Many of our Rett girls use them on their laps but for some that isn't possible. For watching a show, movie or reading a book, you definitely need a different angle.  Our suggestions are the Peeramid which can be used on a table, on a lap (it's nice and soft) or on the ground and can also double as a book stand.


HOLDERS/MOUNTS:
There are also adjustable tablet holders, but before you get an adjustable tablet holder you first need an adjustable tablet mount.  Yes, confusing but RJ Cooper offers some great ones.  Head on over HERE for a mount and then HERE for the adjustable holder.  One thing you want to keep in mind when choosing a mount or holder is weather on not you will be using a case with it - some can NOT be used with cases so double check. 

You can use your iPad as entertainment in the car with this great car mount. 

ACCESSORIES:
Lastly, you may want some accessories for your iPad.  There are lots of great things you can get that will optimize your iPad.  One is a switch interface so your Rett Girl can use a switch to activate the iPad.  There are a few interfaces you can choose from and there are only certain apps that are switch compatible - all the information you need about using switches with you iPad can be found HERE.


Another great accessory if your Rett girl is able to head track is a head pointer that is compatible with an iPad or any tablet for that matter. 

With the Switchamajig you can use the iPad’s touch screen to control anything that’s switch-adapted. It opens up new possibilities for including people with disabilities in more and more activities, from cooking to chemistry class.  The Switchamajig Controller can work with switch-adapted power outlets to control kitchen utensils or anything else.

So hopefully this gets you well on your way to getting some great benefits from you iPad but if you're still looking for more resources check out this article "10 Ways to Optimize Your iPad for Kids with Special Needs" and our blog post with great app recommendations for our Rett Girls.  


If you have a great product or app you use with your iPad please let us know so we can share with our Rett community! Email bridget@rettgirl.org!

Poor Circulation in Rett Girls

Many of our Rett Girls have very cold hands and feet due to poor circulation.  Sometimes they can also look blue or purple.  The easy remedy for poor circulation is typically to get up and move around to get the blood flowing.  This can be difficult for our non-ambulatory and non-weight bearing girls but even if our girls are able to get up and move around many times it doesn't help because their poor circulation is usually due to a vasomotor disturbance that is difficult to treat.  

Google dictionary explains vasomotor this way:  "Denoting a region in the medulla of the brain (the vasomotor center) that regulates blood pressure by controlling reflex alterations in the heart rate and the diameter of the blood vessels, in response to stimuli from receptors in the circulatory system or from other parts of the brain".  


So what can we do as parents and caregivers to help our Rett Girls circulation and the pain that can sometimes come with it?

Keep them warm:  Poor circulation means cold feet, even in hotter weather, so keep them warm with socks and loose fitting shoes, boots (like UGG's) or slippers.  A heated blanket works well too but be sure to check her often so the blanket doesn't get too hot.

Circulation socks:  There are lots of circulation socks on the market for adults so if you have an older Rett Girl you can easily pick up circulation socks at your medical supply store.  As for our younger, smaller girls we have found these Nike compression socks typically used for sports.


Keep her feet elevated:  When your Rett Girl's feet are elevated it's much easier for the blood to get down to her feet and circulate back up.  In the car you can keep feet up with this great foot rest.  We have also heard that it works great when used with a booster seat attached to a chair.

Don't let her feet dangle:  When feet are dangling not only is it harder for the body to pump blood but typically the back of the leg is stressed and can further hinder circulation.  One of the places where feet dangle a lot is the bathroom.  If you don't have a potty seat with a foot rest check out this one (for very young girls - this one is small).  Or you can find a foot stool at a height that would keep your Rett Girl's knees at a 90 degree angle. 

Massage:  Massage works to speed circulation, you can even try this cream by Burts Bee's to stimulate the circulation even more.

We hope that these suggestions help in your Rett Girl's circulation.  If you have found any additional resources please share them with us.

Arm Braces

Many of our Rett Girls use arm braces or elbow immobilizers.  Lately we have added a couple of new arm brace manufacturers, so we decided to do a post on what they're for and what the different manufacturers can offer.

Our Rett Girls use arm braces for several reasons:

• One of the most common reasons is hand mouthing.  Rett brings on repetitive hand movements, and for many of our girls that means mouthing hands continuously. This is not only distracting, but exposes our girls to many germs - especially while in school -  and can also cause skin breakdown from the constant wetness.

• Arm braces may also be worn for safety when our Rett Girls engage in self injurious or involuntary behavior.

• They may also be used in therapy to provide support or stability while doing therapy.

• Lastly they may also be used in place of an IV board when our Rett Girls are in the hospital.  In fact, the feedback we have heard from parents about using their own arm braces in place of IV boards has been great, they seem to offer our girls just a bit more comfort and a little more stability to keeping that arm straight with an IV in place.

We have heard from many Rett parents about arm braces and most experiences are positive.  Many tell us that they never wanted to limit their Rett Girls' movements, but once they did their girls were able to concentrate on other things and were not as distracted by their hand movements.  That being said ALL our girls are different so try it out if your Rett Girl is experiencing any of the above and see if it helps out.

We have several manufacturers listed on our site what makes them all the same is that none of them need a prescription, however without a script you pay completely out of pocket.  Several of them will bill an insurance company if you do decide to send in a script.  Each one offers something just a little bit different though:

armbraces.com:  Offers home made arm braces (among other things) that are custom made.  You give your Rett girls arm measurements and you choose the fabric.  You can even send in your own fabric to make them truly unique and custom.

The Bamboo Brace:  Uses 5 flexible and interchangeable "stays" that you can insert into the neoprene arm wrap so you can adjust to varying amounts of plasticity or instability.  These arm braces were developed by physical therapists and are perfect for therapy and weight bearing exercises.


Pedi Wrap:  Are arm braces that hold their position a little better and don't slide as much as the armbraces.com ones, however these are not custom, they come in set sizes and patterns.  You can call to ask for a specific type of pattern or color but you are limited to what they may have in stock.

Benik Hinged Elbow Support:  Is a bit more pricey but may be picked up by your insurance company with the proper paperwork.  This arm brace offers a custom fit and is adjustable so you can control your Rett Girl's range of motion.

Sleepy Cow Creations:  Has an arm brace much like the the Pedi Wrap only they are able to customize the size and the fabric.  They also have a very affordable price and for an additional charge they can make your girl a matching bib!

We hope that we have shed some light on different arm braces and the reasons for their use.  If your Rett Girl uses a different brand we would love to hear about them!  Send us a picture and give us a review here.

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!