Dear Moms & Dads,

SURGERY ALERT FOR DMD PARENTS :
If your child has been diagnosed with Duchenne, or if you even suspect in the back of your mind that your child has Duchenne, and he is scheduled for any type of surgery where general anesthesia will be administered, YOU MUST ALERT THE SURGEONS AND ANESTHESIOLOGISTS. They cannot use the normal types of anesthesia or it could prove fatal. Tell them ABSOLUTELY NO HALOTHANE OR SUCCINYLCHOLINE !!!! IT'S USE COULD CAUSE RESPIRATORY ARREST.

Please check this link often as it is our goal to share with you our most up to date knowledge and advice regarding early detection and care of a child with Duchenne. We are not Doctors and can only relate to you what we are doing and why. Always check with your doctor first before following anyone else's private recommentdations. We have a lot of information we would like to share. Please feel free to e-mail us at any time if you have something to share.

Things are happening at exponential speed in medical labs around the globe right now. Research DMD to it's core. Learn about Exon Skipping therapies, Stem cell projects, etc. Know your son's specific deletion. Find out which projects out there will help him when approved and released.

Our first recommendation is to do what you can to raise money for researchers to speed up help for your son. You don't need a dime to raise money. Dig into your memory and make a list of everyone you have ever known, worked with, worked for, gone to school with, etc. Log into Firstgiving.com and set up a donation page with your story. It is free. forward through email to everyone, asking for donations to save your boy. Action is therapy that passes time and helps fix the problem. Life is problem solving. That is what humans are best at, and this is no exception. Brilliant minds around the world are on it right now. They are working around the clock for your son.

Understand what is taking place inside your son's body and how to counteract it to the best of your ability so that he will remain as strong as possible, when a cure or treatment is released to the public.  # One Priority: PRESERVE HIS MUSCLES.

As hard as it is to imagine that your child has this disability, the earlier you identify it, the better for your child. Early signs are large calf muscles, weak leg muscles, frequent falls and consistently using a wide stance to get up from the floor, "walking" his hands up his legs He may often complain of fatigue. Do not push him to continue once he says he is tired because permanent muscle damage is taking place at that point. The goal here is to preserve your child's muscle cells so that when a treatment or cure is released to the public, it will be of greater use to him.

Diet : Stop the Sugar!!!!!!! Watch the Sodium!

Duchenne prevents Evan from rebuilding damaged muscle cells. Because there is no cure at this time, our focus is on preventing or slowing down the loss of muscle cells. This can be done two ways. The first by limiting exercise such as running, climbing or walking long distances. The second is by diet. Actually, we should all be following this same super pure way of eating. First and foremost, take sugar, in all its forms, out of your child's diet as much as possible.

Sugar causes oxidation to occur in the body. Oxidation of muscle cells means damage to a muscle cell that your child's body can not regenerate. Sugar is an unstable compound. When introduced to cells in the body it seeks to become stable by borrowing electrons from cells in the body. When the transfer of electrons occurs, the cell dies. This is what is meant by oxidation. Therefore, the more sugar your child introduces into his body, the faster his body will lose muscle strength.

We use natural sweeteners such as honey, Stevia and Agave Nectar as much as possible. In fact, I just read an article that talked about the antioxidant properties of honey. Agave Nectar is thinner than honey, so it mixes well with anything. It also works well as a substitute for pancake syrup.

Note: Holidays can be tricky, but even then, don't splurge: Halloween is one of Evan's favorites. We order sugar free candies and lollipops off the internet, and when he finishes trick or treating for the night, we dump out his pumpkin and quickly pour in the bag of mixed sugar free stuff when he's not paying attention. Benefits outway our guilt. Christmas and Easter as well.. sugar free candy canes, jelly beans, whatever. The most important thing is....DELETE SUGAR!!! Actually, we ALL should. 

EASTER: We always do an Easter egg hunt with those plastic eggs.  We used to put candy in them.  This Easter, we will be putting money in the eggs instead...quarters, dimes, maybe a dollar or two.  Then he can have fun counting it afterwards instead of eating candy, and have money to buy a toy. 

That goes for fruit juices, yogurts, etc., as well. WATCH OUT!! You have to become an ingredient detective. The food industry is very devious. The best kid's drinks we have found are the pouches of "Minute Maid Fruit Falls" water beverage. Also, V8 V-Fusion "Lite" is relatively low in sugar content.  Absolutely positively NO SODA. If you can get your child to just drink water...even better, (and cheeper) We got Evan a large plastic syringe (two ounce capacity or larger) with a long stem, from the local pharmacy. He put his favorite Thomas the Train decals all over it. He's not much of a water drinker, but when it's in his syringe..he loves us to fill it over and over, so he can squirt it in his mouth and suck it out!!

Yogurt is excellent for calcium, but if you buy kid's yogurt, you are outweighing the benefit with the amount of sugar they cram into it. Instead, buy "Activia Plain" yogurt and stir in a teaspoon of flavored yogurt per cup. Just barely enough to give it some taste. Better yet, just add fruit.

Become sodium conscious. We try not to exceed 900 mgs per day, which can be tricky when you start reading those labels. Buy a salt free substitute for cooking. Watch out for the most innocent of foods. When you buy sliced bread, get the whole wheat, and compare the sodium levels per slice. Even most boneless skinless chicken breasts are now soaked/injected with high sodium preservatives. But some aren't. So turn over each and every package and scan the sodium and sugar contents before dropping them into the cart. ESPECIALLY WATCH OUT FOR THE PROCESSED FOODS LIKE CHICKEN NUGGETS AND FAST FOOD TAKE OUT!!! DEADLY HIGH SODIUM LEVELS, (AS WELL AS HIGH FRUCTOSE CORN SYRUP) One little innocent carton of nuggets could 500 - 700mgs of sodium. Then add in the catsup that kids bathe it in...

As for butter or margerines, try and buy the "I Can't Believe it's not Butter" spray or spread.

HIGH ANTIOXIDENT MEALS... Try serving one or two meals of berries and fruits. We do a bowl of blueberries, raspberries, blackberries, manderine oranges, pineapples, and apple slices for Evan's breakfast. Avoid kid's cereal..it is basically sugar coated cardboard!!!!!!! If you want to do cereal, "Kashi" is pretty good as far as sugar content goes.  Evan enjoys the "Heart to Heart" Kashi oat cereal.  High in antioxidants and fiber.  It's shaped like little circles and hearts.  Another one Evan likes is Kashi "Go Lean" cereal.  We call it sticks and twigs.  He thinks it comes from the yard and has fun eating little twig shaped cereal pieces.  With DMD, the gastrointesinal tract aslo struggles. The fibre in these cereals will helo soften the stool and help with easier bowl movements.  Check out the supplement Protandim.  It is a super anti -oxidant.  There is also research funded by both Harvard and Parent Project Muscular Dystrophy that shows it slows muscle loss.  E-mail us with any questions, or order from  www.mylifevantage.com/procko.

Supplements:

If your child can swallow pills, buy some similar looking supplements for yourself. Let him give you your pills first. Then give him his.

Because oxidation takes place in our bodies for other reasons besides sugar, Evan takes a supplement called "ToCoQ10". It is a powerful cardiovascular antioxidant and has been proven to work well for children with Duchenne. It was recommended by Dr. Wong of the Cincinnati Children's Hospital. We also try make Evan's diet as healthy as possible. Raw fruits, vegetables and whole grains are essential. Because Duchenne children are able to be as active as others their age, Evan could put on weight easily if he was not eating correctly. Extra pounds would put more strain on his muscles and his heart. Deciding what to let Evan eat and not eat is very difficult. We want him to be a kid and enjoy the foods that he sees other children eating but we also want him to be strong for as long as possible. So, we may give in a little sometimes but it is the exception and not the rule.

Evan just turned 5 on New Year's Eve. He finally learned how to swallow pills, by practicing with Tic Tacs. This was a huge help, as crushing and disguising pills in with food was becoming impossible. He was on to us! Anyway, Evan's current supplement regimen is as follows:

1) Cold water fish Oil...Make sure that on the label, the mgs of DHA and EPA add up to the mid 700's. If not, find another brand. Also make sure it's cold water fish/low mercury.

2) CO Q 10.... highly recommended by cardiologists and Duchenne community to help the heart fight problems.

3) Protandem...Some swear by it for Duchenne, some say it's worthless. We'd rather err on the side of caution.

4) A good Child's multi vitamin.

5) Viitamin D3 to help fight off effects of Deflazacort.

6) Sugarfree Calcium chew to help fight off effects of Deflazacort.

7) Each morning, Evan also drinks a 1/2 bottle of "Glucerna", a nutrition shake made for diabetics, which is sugarfree, mixed with 1% milk. We used to give him a full bottle, but the sodium is a little high. Excellent nutrition boost to start the day. We warm it on stovetop as well. Walmart sells it in pharmacy area. We used to use Pediasure until we noticed the high sugar levels.

8) "Intra Kid" liquid multi-vitamin supplement. Produced by Drucker Labs.

PROPER HYDRATION!!!! Most people today are walking around dehydrated. Your child's urine should be clear, not yellow or orange. All of our body's systems and organs need to be bathed in fluid to perform best. Keep him hydrated! Very important!!!! Watch the urine!!!! DMD often causes difficulty with bowel movements due to abdominal muscle weakness. Hard dry bowels make it even more difficult. Keep him hydrated throughout the day and especially upon waking in the am!!!! (That actually goes for all of us!)

Stretches

STRETCH STRETCH STRETCH!!!!!!

Never ever forget, even if you are on a trip all day away from home.

Pull into a parking lot and do the stretches on your car seat.

Start stretching your child as soon as possible.

We stretch Evan's leg and hip muscles twice daily at the recommendation of Dr. Wong. Often if not always, boys with Duchenne develop a "toe walk". This happens because the muscles in the legs and calves become shortened through spasms. This is painful to the child and can interfere with his ability to walk. Heel cord surgery is the only option to correct the problem once it has advanced.

However, if a child is stretched daily, the muscles will not shorten as much and surgery can be prevented. We recommend that you see a physical therapist to learn the correct way to do these stretches for your child, or check out PPMD's site. It is serious because stretching the wrong way or over stretching can be damaging.

There's also something called "night splints". These are boots which can be worn at night to prevent spasms from shortening the leg muscles. A physical therapist can set you up with these boots. A word of caution. The boots are not meant to hold your child's foot in a stretched position. They need to be set in a neutral position, simply preventing the child's toes from pointing while asleep.