Tuesday, January 3, 2012

Hayden's Diet and Supplements

Hayden recently switched therapists at Cornerstone, and I typed this up so they would know why this crazy mom is sending in baggies of strange orange and black powders, and what the heck it's all for.  I thought some of you would be interested to see what I'm doing at home, and where we are with Hayden's current plan. Of course keep in mind that I'm not a nutrition expert, and feel free to correct me if any of the below information is incorrect.  For brevity I didn't list every last benefit of all the supplements, so there are many more reasons for taking them.  And, I feel there is a long way to go still to help Hayden improve, don't get me wrong.  But boy has this kid come a long way in 2 years!  Thanks for reading! : )

Hi!  I wanted to type out a few things about Hayden's diet and supplements, so that everyone is on the same page with his care.  Basically, I thought you would be interested to know about these things, and they may answer some questions you have had.  Please don’t take offense or think that I’m in some way lecturing, and also know that I’m not a nutritional expert.  I’m just sharing information about what has worked for Hayden. I would love to meet with any/all of you and answer any questions you have about Hayden’s diet and how we can make it work for him at Cornerstone (and at his eventual transition to public school).

Hayden is allergic to wheat and milk. He was given a blood test to determine this. At age three he could say only a few words at a time.  Within 8 days of taking away milk he began speaking in 4-word sentences.  You can read about his first reactions to the diet on my blog, if you are interested:  http://bit.ly/xoyabA   and read about his language and behavior before the diet (March 2010), here: http://bit.ly/z7XRLe  It is amazing to me how far he has come in just two years.  I would say a good portion of this is attributable to the GFCF diet.

(Obviously, a huge reason for his improvement has been ABA. But I think half of his improvements, and the reason he has improved so quickly, can be attributed to the GFCF diet, and to his nutritional supplements.)

If you are interested, there is an article about the diet on TACA’s page at http://bit.ly/fkPvKi : “Peer-reviewed research shows that 91% of people with Autism who were put on a strict GFCFSF diet improved.  The most common comment from parents is that their child “came out of the fog” when they started the diet.  Many parents report that their children began to talk or increased their speech with the diet as well.  Most parents report a reduction in behaviors, especially self-injury, elopement, dangerous climbing, recurrent ear infections, rashes and other medical conditions once their children are on the diet.”  

Hayden should swallow one enzyme pill with each meal. Since he can’t swallow pills yet, I empty these into his almond milk.  The enzymes help your body break down the foods you eat. They are in essence ‘eating’ your food, so when you put them in a drink they begin ‘eating’ the drink. Within 20 minutes a drink with enzymes will taste rotten and will need to be discarded.

If he complains of a tummy ache, drinking milk or juice that has some activated charcoal in it can help his tummy feel better.  Activated charcoal absorbs toxins in your body, such as foods he’s allergic to.  Also, when the probiotics attack the yeast in his body, the yeast produces die-off chemicals from the reaction, which can also make his tummy hurt.  The charcoal will help with this too.

Nutritional Supplements
You can read about supplements that have shown promise in helping autism here: http://bit.ly/zaBQ2Q

Hayden first began to see a nutritionist, and then a DAN (Defeat Autism Now) doctor.  Each has a certain focus area and goals for Hayden.  The nutritionist is especially helpful for recipe ideas and ways to get Hayden to actually eat the supplements.  The DAN doctor has a more broad knowledge of research and issues, and can request blood tests and order prescriptions.

Probiotics, Anti-fungals, and Antibiotics
One of Hayden’s biggest battles is yeast and bad bacteria overgrowth in his gut. Many ASD kids battle these and they are very difficult to get rid of.  Yeast feeds on sugars (and carbs) in your diet, which is often what most ASD kids eat.  This is why many kids do the specific-carb diet, to eat carbs that won’t feed the yeast.  I am working towards moving Hayden to this diet, but it is very complicated.

Probiotics are good bacteria to help counter the bad bacteria and yeast. Many people eat yogurt to get probiotics in their diet.  Hayden can’t eat yogurt because it’s made of milk, and it doesn’t have a high potency.  He takes dry probiotics instead.  At home I put a powder in his drinks.  At school this is the white chewable tablet you give him at lunchtime.  (The probiotics are living organisms and need to be kept cold or they will lose their potency.)  Hayden has also been on anti-fungals for his yeast overgrowth, and very strong anti-biotics for the bacteria overgrowth.  There are many problems with these drugs, including that they can make your stomach hurt, you can build up an immunity to them if you stay on them for too long, and they can have bad side effects like liver damage. Hayden is not currently on any of these drugs, although he was recently on Nystatin, which is an anti-fungal. He is currently on an anti-biotic for Strep throat. The antibiotic will kill all the good bacteria in his gut as well as the bad, causing a need for more probiotic and possibly a recurrence of Yeast overgrowth.  As you can see it is a bad cycle. I started him on a new product about a month ago called Enhansa which is also supposed to help fight yeast. It is very potent, so I’ve started with a small dose. I can also start him on a few other things once he can swallow pills, including a product called Yeast-Aid.  Signs of yeast overgrowth can include: athlete’s foot or smelly feet, bad breath, rash around his anus, sudden increase in stimming, nonsense words, and sensory seeking, and a tummy ache.

Other supplements
We always start one new supplement at a time to see what kind of affect it has on Hayden, and to make sure it doesn’t have any adverse effects. He currently takes:

Super Nu Thera:  This is what is in the cups labeled “H.D. Milk” every day. This supplement has a strong taste and he doesn’t like it very well in juice.  This is a multi-vitamin developed especially for ASD kids.

Vitamin C:  This is what is in his juice cups each day.  It has a bright, fruity flavor and tastes a bit odd if you add it to almond milk.

Calcium, since he is not drinking cow’s milk. There is some calcium in Almond milk, but not as much as he needs.

Zinc and carnosine help with language.  Zinc also helps remove copper from his body (see below) and can help with willingness to try new foods.

Epsom salts in his bath helps him remove chemicals and heavy metals from his body, and regulates him if he is constipated.  ASD kids have a hard time removing heavy metals from their bodies.  Hayden currently has lead poisoning and too much copper in his blood.

Magnesium, calming, helps with phenol intolerance.
Baking soda (calming) in his bath.
EFA powder- Omega fatty acids
Vitamin D, skin
Cholesterol, hormones and brain health
(There are about 9 more supplements I have yet to add to his diet.)

I also make several baked goods or homemade foods with protein powder, since he is such a picky eater.  If you have seen his homemade pizza, it is made with rice bread, Prego spaghetti sauce, EFA (Omegas) powder, protein powder, and GFCFSF cheese.

ASD kids can also be very sensitive to many chemicals in their environment.  For Hayden I have seen him react negatively to chlorine, aluminum, food dyes, and spicy foods. Epsom salts bath and enzymes can help with this. He also takes allergy medicine at night (Zyrtec) which helps counteract any allergens he may have come in contact with during the day, and helps him sleep.

All of these supplements are powders that I have to figure out how to give him in a drink.  A few can be cooked on food, but many are not heat-tolerant and lose potency when cooked.  Once Hayden can swallow most of these supplements in pill form, my life will be much easier.  Therefore the pill-swallowing program he is on at school is hugely important to me!

I have to keep careful track of how many supplements he gets each day, as some are essential to his diet, some can be overdosed on, and all of them are quite expensive, so I don’t want him to get too much or too little of any one thing.  If you could note in his daily journal whether or not he drank the entire cup with it’s supplement, that would be hugely helpful.  I could put the actual supplement name on the cup if you think this would help with your records. I could also send multiple cups on Monday, and you could let me know when you are in need of more throughout the week.  Let me know what improvements you think could be made to our current system. :)   As you can see it’s all very complicated and I’m just trying to keep up and do the best I can!  I’m sure I’m forgetting something, so let me know what questions you have or what doesn’t make sense.

Thanks for all you do for Hayden and the kids at Cornerstone!
: )  Sheila Damron

More information on Nutrition for Autism:

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