We live in a very toxic world today.

Poisons and dangers abound and keeping our children healthy can be very difficult.

I never thought I would be one of those “green” people, but after doing research and learning so much more about the product’s I’ve been using, it makes it impossible to go back to using them.

It reminds me of the quote that I pretty much live by…..

When you know better,

you do better.

I’ve made a list of the things I’m changing and wanted to share:

Acetaminophen

Acetaminophen shuts down the detoxification pathways in the liver, which rids the body of metals and poisons.

Ibuprofen is better for a pain reliever or if a fever reducer is needed.

Read more here.

Arsenic in Chicken

The good news is that arsenic-free chicken is more readily available than it has been in the past, as more processors eliminate its use.

Tyson Foods, the nation’s largest chicken producer, has stopped using arsenic in its chicken feed.

In addition, Bell and Evans and Eberly chickens are arsenic-free.

You can read more here.

There is a growing market in organic chicken and birds labeled “antibiotic-free”, they both don’t contain arsenic.

Excitotoxins

 Strong scientific evidence suggests these substances could cause brain damage in children, adolescents and adults; with strong emphasis on children and elderly individuals. They could affect the development of a child’s nervous system;

resulting in learning and emotional difficulties later in life.

Excitotoxins include MSG, Aspartame and all other sugar substitutes, aspartate, Cysteine, cysteic acid.

The following are other names for MSG-

Monosodium Glutamate,

Hydrolyzed Vegetable Protein,

Hydrolyzed Protein;

Hydrolyzed Plant Extract,

Plant Protein Extract,

Sodium Caseinate,

Yeast Extract,

Texturized Protein,

Autolyzed Yeast,

Hydrolyzed Oat Flour,

Calcium Caseinate.

Things that help excitotoxin damage: Coenzyme Q10, acetyl-L carnitine, niacinamide, riboflavin, methylcobalamin, and thiamine.

 Fluoride

Fluoride is a neurotoxin and should not be consumed by children!

It is implicated in thyroid disease, bone disease and arthritis.

In the scale of toxicity, fluorides fall between arsenic and lead.

It is in our water, which is why we have put in a reverse osmosis water filtration unit in our house.

Fluoride is in toothpaste, some mouthwashes and dental cleanings (ask that they only use pumice to clean your child’s teeth.)

Schools routinely give children fluoride during “health services” so make sure you inform them IN WRITING that your child MUST NOT be given fluoride during health services.

Have this written into your child’s IEP.

Let me tell you, i scoured the internet for some good, safe toothpastes and it took awhile.

But i found some that I am happy with, the Jason brand has a couple of kid varieties and so does Spry.

Be careful when buying Tom’s of Maine brand because we had one that was carried in our natural food store,

but in tiny letters it said that fluoride was added.

You can either order the fluoride free one online or I found mine at Kroger in the natural market section.

The others I ordered online.

 I also just learned that there is mercury in High Fructose Corn Syrup.

Please be aware and check out the labels at the store before you buy these products,

typically found in sweetened beverages, sodas, breads, cereals, breakfast bars, lunch meats, yogurts, soups and condiments.

I was surprised that it was in our ketchup and bbq sauce. Guess where those bottles went……TRASH!

 Nitrates/Nitrites 

Foods containing nitrates or nitrites, like those in preserved meats, bacon, ham, hot dogs and pickles should be avoided,

since children with autism are known to have higher levels of these toxic derivatives of nitric oxide stored in their bodies due to an inability to detoxify.

  This is a major concern seeing as I need to purchase a few different brands now because Jackson loves hot dogs, lunchmeat, bacon, ham, and pickles.

I found nitrite,nitrate, gluten free ones at Costco this week and stocked up.

I also found that Boar’s Head lunchmeat is free of these as well, a lot of deli shops use this as their meat.

Trader Joe’s is supposed to have the healthiest, best pickles.

 PBDEs (polybrominated diphenyl ethers) –

Here comes something that really frightened me………………

Fire retardant chemicals are in beds, pajamas, furniture, sofas, televisions and computers.

This basically means the fire retardant chemicals are very toxic to asd kids and just about ALL kids pajama’s have them.

I have found organic pj’s that do not have these chemicals in them at Hanna Andersson online, Costco has an organic pj line, and carter’s has some- but you have to make sure that they say the garment does NOT have flame resistant chemicals in it.

Just check the tag and make sure it doesn’t say anything about flame resistant chemicals.

You are safe if you stick to the 2 piece cotton ones.

Sunscreen 

Watch out for these bad ingredients: Oxybenzone (Benzophenone-3), Micronized Titanium Dioxide, Nano Titanium Dioxide, Nano Zinc Oxide.

Also I tossed out all of our baby bath products and will now only use California Baby.

They are gluten, soy, dairy, peanut, etc free and are the best!

They have bath bubbles (with bubble wands!), shampoo, baby body wash, lotion, diaper cream, sunscreen, and a few other products.

I love them, they are a little more expensive, but totally worth it.

You can find them at Target.

Teflon in carpets, clothes and pots and pans – no nonstick or aluminum pans – glass, cast iron or stainless only.

According to the Environmental Protection Agency, some of the highest C-8 (Teflon chemical) levels were found in children.

This is super scary and we are now taking down ALL of our non stick cookware and investing in a stainless steel set.

We also are only using glass baking pans, getting rid of all plates and bowls that are made in china (because of different standards/code of production) and that have color, paint, etc on them because they can contaminate the food.

We are purchasing all white, american made, Corelle brand plates and bowls (careful though because their plates and bowls are made in the US, but their mugs are made in china, so just read everything carefully so you are informed).

Make sure your childs drinking glasses are also glass and american made or stainless steel ,so that you know the standards are being achieved when producing them.

I found some great stainless steel sippy cups on amazon last night.

 Try to avoid #7 plastics.

Plastics with the recycling labels #1, #2 and #4 on the bottom do not contain BPA.

We’ve also switched to all organic cleaners for the house.

The brand of organic cleaners i like is called Baby Ganics and Honest by Jessica Alba. You can find it online or Target carries them.

When Jackson was newly diagnosed with Autism, I found this Welcome to Holland poem written by Emily Perl Kingsley.

Now with his Duchenne Muscular Dystrophy Diagnosis I have so much more love for these beautiful words.

I immediately fell in love with it and put it right in my journal.

There is not a time when I read it and don’t shed tears.

I believe it captures a lot of the emotions I have felt.

Pat Furlong is the founding president and CEO of Parent Project Muscular Dystrophy (PPMD), the largest nonprofit organization in the United States solely focused on Duchenne Muscular Dystrophy.

When doctors diagnosed her 2 sons with Duchenne in 1984, Pat immersed herself in Duchenne, working to understand the pathology of the disorder, the extent of research investment, and the mechanisms for optimal care.

In 1994, Pat, together with other parents of young men with Duchenne, founded PPMD to change the course of Duchenne and, ultimately, to find a cure.

Today, she continues to lead the organization and is considered one of the foremost authorities on Duchenne in the world.

Here is a video that tells a little more about her and her story:

http://youtu.be/9U28QPHIA34

The Theater of Duchenne

This is us. 

We are confronted with a “to do” list that extends to the moon and back, 

appropriate for the size of the gene responsible for the word Duchenne,

 which has recently broken down the door of home and heart.

 We have to learn how to say the word DUCHENNE out loud without letting on that our heart is breaking in a million pieces. 

We have to say it to the world we live in, 

our spouse, 

our children,

 our extended family,

 the school, 

and our community. 

We have to search for our own version of optimal care,

 a team of physicians we feel confident have sufficient expertise and experience to care for our sons. We search the internet and connect with the Duchenne Community.

-Pat Furlong

I’m writing all about Pat Furlong today because back in 2012, I had the opportunity to attend a Duchenne Support Group Meeting and she was there.

We were only 4 months into Jackson’s diagnosis.

So, I went to this support group……and I didn’t know what to expect.

I didn’t know if I could keep my emotions in check, but i went anyway.

and i brought my “Keep calm and carry on” tissues.

The meeting was going great and we had to go around the room and do our little introductions.

I talked about our recent diagnosis and they asked me all the steps we’ve taken thus far and I discussed all the places we’ve been and all the clinics we’ve traveled to and what decisions we’ve made for Jackson’s care.

The person leading the support group was Pat Furlong, the lady I wrote all about up above.

See, I was so new to the Duchenne Community that I didn’t know who she was.

All i knew from the night before the meeting was her story about her 2 sons because I had read about it in a book and I was sobbing the night before when I read her story.

During my into I also told her how much it meant to me to be able to meet her and share our stories and how I just crumbled upon reading hers.

and of course that is when i lost it and couldn’t keep the tears away.

Because she then told her story and it was so tender and so heartbreaking at the same time.

No one else was really emotional, but don’t worry,

because I was plenty emotional for everyone else.

I was SO nervous before the meeting.

My stomach was in knots and I didn’t eat anything for fear that it would come back up.

After my intro I felt much better and remained calm throughout the entire thing.

No more crying for me,

and let me tell you why.

There was another couple there and their son is 5 years old and has Duchenne and they haven’t really taken the course that a lot of us other families have with their son.

In fact, they haven’t really done anything.

So as I’m going on and on about what we’re doing, they were getting more and more confused and upset.

So then the conversation turns to me because they looked at me and started questioning me and the reasons I’m doing those things.

They disagree with my decisions and feel it is not the best choice.

It was such a weird feeling to be in for me because

this was all SO new to me and as I sat there

I realized that this was the first time {in regards to DMD} that I had to stand up and back the choices that I was making.

I had to inform these parents of why it is the best choice and what the research shows,

and why we’re traveling all around instead of staying local for treatment.

I didn’t know I had it in me so early on to have such an intense discussion, but I have to say that I feel like I did a great job presenting my reasoning and I only hope that they will use the information to find some help for their son.

and I had no hard feelings towards them, even though that would have been quite easy to have, because i understood that it was coming from a place of defensiveness.

Defensiveness because they felt guilty that their son has had a diagnosis for a 1year+ and we were a few weeks into diagnosis and they had done nothing.

So I educated them and I hope they apply my favorite quote to their lives.

“When you know better, you do better”.

-Maya Angelou

The meeting ran WAY over, but it was great.

and i’m really glad that i went.

and i got END DUCHENNE t-shirts for our family,

and i got to meet Pat Furlong and learn from her,

and now I’m ready for the second meeting which is in a few weeks.

To view Jackson’s Personal Donation Page through Parent Project MD click HERE.