A letter to my son’s Gastroenterologist

Dear Gastroenterology team,

You’re fired.  Want to know why?  My son was recently admitted to the hospital with a bowel obstruction.  You see, we’ve battled constipation all his life. Early on, if he got backed up, we’d give him a suppository or enema to get things moving. Those interventions are no longer possible for a 17 year-old with autism.  A few years ago, we saw a doctor in your department who prescribed Miralax.  Capfuls and capfuls of Miralax until his bowels moved.  Daily doses of Miralax to keep things “regular”.  Do you know it’s not “regular” to pump your child full of a chemical called “Polyethylene Glycol” (antifreeze is Ethylene Glycol) to make his bowels move everyday?  Do you know when you regularly use an artificial method to move the bowels that they get “lazy” and stop functioning on their own?  And did you know that if you “rush” things through the system, vital nutrients get flushed out of the body before they can be absorbed?  The only thing being absorbed through my son’s permeable gut was probably the Polyethylene Glycol you say is too big to be absorbed and therefore deemed “safe”.  This is just guessing on your part.  You have no idea what that chemical is doing to his body.

Back to the emergency at hand.  As we were waiting for you to come in with the x-rays, I heard you in the hallway talking.  I heard the word “surgery”.  I looked at my son, lying there on the gurney, his feet hanging off the end because he is so tall.  He was absolutely miserable.  Guilt swept over me.  Maybe if I had just given him those daily doses of Miralax, we wouldn’t be here right now.  We were presented with the options and we chose the lesser of the evils.  More laxatives.  You fed a nasogastric tube into his nose, down his throat, and into his stomach.  Then you began pumping in laxatives.  And we waited.  Anytime I would look away from him, he would try to pull the tube out.  I stayed awake for 40 hrs. straight staring at my son.  When family came to relieve us so I could get a bite to eat, he immediately pulled out the tube and we had to endure it being placed again.  When the laxatives began working, we were both relieved.  No surgery.  The nurses at the hospital are saints, by the way, for dealing with the messes in such a cheery manner.  They never once made Sam feel bad and they maintained as much of his dignity as they could.  Three days later, we were cleared to go home.  Crisis averted.  I do thank you for helping us to avoid surgery.  We were sent home with specific orders:  a capful of Miralax morning and night.  High fiber foods.  Lots of water.

It did seem odd to me that at no time during our hospital stay did anyone ask what his typical diet is.  What other medications or supplements he was taking that might be causing the issues.  Or whether or not he had been checked for yeast, candida, or parasites.  I chalked it up to the emergency status of the situation and assumed this would be covered at our follow-up appointment.  

Three weeks later, the follow-up appointment was rushed.  You didn’t ask about his diet, medications and supplements, or yeast.  Instead, you suggested a sedated test to be sure the nerves were working properly so that he feels the urge to go.  I know he feels the urge to go…I catch him all the time sitting on his foot withholding his stool.  It felt like you were chalking everything up to his autism.  Like it’s “normal” for autistics to have compromised guts.  It’s “normal” for them to have withholding behaviors.  It’s “normal” for them to be admitted to the hospital for cleanouts on a regular basis.  Some parents I’ve talked with have them built into their schedules!  They know that about every 3 months, they’re going to have a hospitalized cleanout.  This is insane!  

Yet, we followed your advice because as much as I hate the laxatives, I hate for my child to be in pain and hospitalized a lot more.  But still, a month later, we were fearing another hospital stay.  The increase in fiber, water, and Miralax wasn’t moving things.  He was sitting after every meal, taking advantage of the natural contractions of the intestines following intake of food.  I begged to do the cleanout at home and you relented.  He drank a whole bottle of Miralax mixed with diluted juice and took two Dulcolax.  The cleanout was “successful”.  But it felt like failure.  Having to rely on a chemical to move your bowels is not normal!  And what was it doing to his body?  This kid’s methylation pathway is compromised.  He doesn’t detox well.  What was happening to all the chemicals I was pumping into him?

It’s mind-boggling to me that a Gastroenterology team based out of Children’s Medical Center, who treat children for a living, never once asked about his diet, his meds/supps, or pathogens in the GI tract.  You don’t seem interested in getting to the root of the problem, only throwing laxatives at it.  This is not a fix.  It’s a band-aid.  A very poor band-aid.  

So once again, I had to take matters into my own hands and do my own research.  Sam is taking Nystatin now to address his Candida overgrowth in his gut.  Candida is a major contributor to constipation.  If you don’t address it, it simply gets worse.  Did you learn that in medical school?  Did you learn that some kids can’t eat green beans, the #1 food you recommended, because they have high Oxalates?  Sam has high Oxalates.  In fact, many of the foods you suggested he can’t eat.  But you never asked about any of his lab work, did you?  Did you know that sugar and corn feed yeast?  Did you know that mild hyperbaric oxygen therapy helps kill Candida and improves gut health?

And this one might shock you…did you know that there are natural ways to address constipation?  I know, mind blown, right?  Laxatives are not a cure for our kid’s compromised guts.  We have changed Sam’s diet to now include fermented foods.  Bet you didn’t know they’re good for gut health.  We also started giving Sam Magnesium Citrate and Aloe Vera Juice, both natural laxatives and good for you.  He takes digestive enzymes and probiotics.  We’re working on healing his gut, improving his diet, supplementing with natural bowel supports, and modifying his behavior.  He automatically sits now after every meal and more often than not, has success.  I haven’t seen the withholding behaviors since we got things moving naturally.  

We still get nervous from time to time and consider adding a capful of Miralax, or as recently as yesterday, consider a full cleanout.  But instead, doubled the dose of Magnesium Citrate and gave two capsules of Smooth Move (natural Senna and herbs to stimulate bowel activity), and do you know what we got?  Shit.  We got a lot of shit this morning.  And a happy boy.

I don’t understand your motivation for simply prescribing laxatives.  Does it increase the odds of repeat customers?  Do you treat typical children differently than the autistic ones?  If you just assume their compromised guts are part of their autism, you’re right and you’re wrong.  Yes, most kids with autism have compromised guts (either chronic constipation or chronic diarrhea), but it’s not normal.  And it can be treated.  Yes it takes time and patience, and a better understanding of why their guts are compromised.  It takes some lab tests to understand the pathogens and unique challenges faced by these kids.  But it can be done.  It should be done.  You took an oath to “first do no harm”.  By slapping a band-aid on these kids you are doing harm.  And no parent should just stand by and let you do it.  I, for one, will not.

Sincerely,

Nancy Bernotaitis

Sam’s mom

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Major Food Rant ahead.

This post is purely motivated by frustration so stick with me here. I need to get this out.
What the hell is wrong with people? I mean, seriously? I’m very befuddled.  I would appreciate some insight.

We showed this video of Sam at the Second Annual Biomedical Conference sponsored by Integrated Connections.  It’s his transition into school before and after diet change, supplementation, and biomedical interventions.  The change is remarkable, wouldn’t you agree?

So why are people so resistant to change?  Why would they rather give their child pharmaceuticals (psych drugs) that may or may not mask the behavior, that come with horrible side-effects, and that have not been proven safe or effective on our CHILDREN?  Why are they treating a medical condition like a mental condition?

I’m speaking from experience here.  We tried the pharmaceutical route.  He’s been on at least twelve different medications at one time or another.  We experienced side effects ranging from weight gain and food obsession to Sam complaining of “leg shaking”.  What we didn’t see was a reduction in the dangerous behaviors.  And if we had?  It would have only been masking the real problem, Sam’s body is sick.  

The medical community has it all wrong.  First of all, the DSM-V has autism categorized as a mental disorder.  It’s not.  The inflammation, toxic body burden, gut dysbiosis, and nutritional deficiencies cause the child to stim, act out, scream, bang their head, and prevent them from communicating appropriately.  All the pharmaceuticals in the world aren’t going to heal the gut, reduce the toxins, or replace nutrients they aren’t able to absorb through their permeable intestines.  What are the long-term effects?  We don’t know.  They’re using your child as a guinea pig.

Why is a change in diet so scary?  Again, speaking from experience, we had the typical, if not slightly worse, American diet.  We ate more than our share of fast food.  A home-cooked meal for us was a frozen banquet meal with a side of instant mashed potatoes, a few peas thrown in for color.  We gave cookies and donuts as treats and rewards for not hurting anyone or kicking out the windshield at therapy.  So I’m not some tree-hugging, salad-eating, yogi whose been doing a clean diet forever.  I’m a fairly new convert.  And, surprise!  It wasn’t that difficult.  The hardest part was making the decision and getting started.  

What made it 1000 times easier was working with a Certified Health Coach who also understands that change can be scary.  She believes in taking it one small, do-able change at a time.  Are people that full of MSG that they are physically unable to give up the foods that are making them ill?  Kinda sounds like a meth addict, doesn’t it?  

I can’t believe the push back I’ve gotten from some people.  I have a relative who is in the food industry.  His one-year old has eczema.  Eczema is a sign your body is sending you that something is amiss.  Usually a food intolerance.  He flat-out refuses to consider the possibility that his child might have an intolerance to food.  He’d rather treat the eczema with steroids.  Wouldn’t it be easier to remove corn?  or sugar?  or whatever the offending food is?  And fix the problem for good?

I have a friend with chronic health conditions including Fibromyalgia, Chronic Fatique Syndrome, Arthritis, and pre-Diabetes.  Refuses dietary change although there are days she cannot get out of bed and it’s well-known that auto-immune issues are directly linked to diet. She has a real chance at an improved quality of life, but will not change what she eats.  

When I was a child, we ate food.  Mom cooked real food, in its most basic form.  Meat, beans, vegetables, fruit.  It’s only when we began frequenting fast food and convenience foods that mom and dad’s health began to decline dramatically.  Obesity.  Arthritis.  High Blood Pressure.  Heart Disease.  Strokes.  Disability.  Directly related to food.

If you’re having trouble changing your diet or losing weight, it’s not entirely your fault.  The food industry adds chemicals to their foods to make you crave more of them.  MSG is just one of the offending chemicals.  They call it a flavor enhancer but it truly serves no other purpose than to cause you to want more.  I don’t know about you, but that pisses me off.  If the food was good to begin with, I’d want more just because it was good.  Take a good hard look at the foods in your refrigerator and pantry right now.  Read the labels.  High Fructose Corn Syrup.  Carageenan.  Wheat.  Monosodium Glutamate.  Sugar, glucose, fructose.  Maltodextrin.  Dyes.  Artificial flavors.  Preservatives.  YOU DO NOT NEED THESE THINGS FOR GOOD HEALTH, and in fact, they are ruining your health.

How many of you exercise on a regular basis?  Why?  Are you trying to lose weight?  Are you trying to get healthy?  Do you want to live longer?  Do you realize that you’re doing all that work for nothing if you don’t change the fuel you put into your body?  

After we changed what we eat, my husband lost 60 lbs.  By eating clean meats, organic fruits and veggies, and drinking clean, fresh water.  He feels better now than he has in YEARS.  How do I know?  Because he doesn’t cheat.  He doesn’t want the garbage anymore.  It doesn’t taste good.  He’s no longer addicted to the crap.  The golden arches look like a skull and crossbones to us now.  We drive right on by.

Thanks for letting me vent.  I just get so frustrated when I can see the proof that diet change does work and then get such resistance from the people I care about most in the world.  I want EVERYONE to feel as good as I do.  I want everyone to start eating real food again.  I want our kids to feel better.  I want to shut down Monstanto and what they’re doing to us.  Genetically-modified food is not making more food to feed the world.  It’s killing us.  

You’re either going to spend the money buying wholesome, healthy foods, or you’re going to spend a fortune paying doctors to prescribe more and more drugs to mask what the crappy food has caused in your body.  Your choice.

 

 

 

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What do suicide and autism have in common?

Robin Williams didn’t die from suicide.  Robin Williams died of depression.  Just as my child doesn’t have autism.  He has inflammation, yeast overgrowth, permeable gut, nutritional deficiencies, genetic depletions, heavy metal toxicity, and metabolic dysregulation.   Now look back over that list.  Do you see “mental disorder” listed anywhere?  No.  Want to know why?  Because autism isn’t a mental disorder.  It’s not a brain disorder.  It’s a whole-body disorder.  

When you heal the body, the symptoms that manifest as the behaviors know as autism, improve.  If you try to manage the behaviors without addressing the cause, you’re not going to see the long-term overall improvements you wish to see.  Just as the Suicide Prevention hotline would not have addressed the depression.  It might have stopped the behavior in the moment, but it would not have addressed the root cause.  And therefore, the odds of that behavior returning are high. 

We lost a great man to suicide.  Every 20 minutes, we lose another child to autism.  Both preventable.  Both treatable.  

I’m sick of families being told there’s nothing they can do but learn to manage the behaviors of autism.  I’m here to tell you that’s not true!  I’ve seen it in my own child.  Sam has gone from a non-verbal, aggressive, self-injurious, withdrawn child to a happy, engaged, and very verbal teenager, making his own way down the path toward a managed recovery.  I’ve seen it in Zachary, whose mother was told to plan on institutionalizing him by the age of seven.   Thank God she didn’t listen.  Zachary is now indistinguishable from his peers.  Yes, he still has autism.  Yes, he is in managed recovery.  I see it in the very small children who run down the hall to get into the hyperbaric chamber or the FAR infrared sauna, eager for their next treatment because they FEEL BETTER.  They make eye contact with me.  They hug me.  They are saying more words.  They are connected.  

Don’t know where to start with your own child?  Start by attending our second annual Biomedical Conference with Dr. Phillip DeMio on Saturday, August 23 from 10:00am-12:00pm at Miami Valley South Hospital.  Tickets are only $15/person.   Register online at www.integratedconnections.net.   Schedule a free one-hour consultation with one of our managed recovery specialists, 937-428-5669

Don’t listen when they tell you nothing can be done.  Don’t agree when they try to medicate the behaviors out of your child.  And don’t you ever, ever give up.

We understand what works to address the underlying conditions associated with autism spectrum disorders and we have the interventions that your child needs.  We have the answers.  By working together, we can change the future for your child.  The first step is up to you.  Give us a call.  Attend the conference. 

No matter what people tell you, words and ideas can change the world. – Robin Williams

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Fast Food Junkie

I look back now and cringe. What was I thinking?

I had Sam booked from the time school let out until bedtime; speech therapy, occupational therapy, ABA therapy, physical therapy, music therapy, interactive metronome, you name it. We lived in the car. As I sat watching yet another therapy session through the two-way glass, I filled out appeal after appeal to try and get insurance to pay for more therapy. Twenty session a year doesn’t cut it for a kid on the spectrum. And he obviously needed more because he was not progressing.

In between sessions, we’d swing through a fast food joint and load up on chicken nuggets, French fries, and apple slices (gotta get your fruit!). Then I’d wonder why he was melting down in therapy, unable to participate. I’d carry his screaming butt into therapy, sit with him in the hallway as he screamed and thrashed about, then carry him back out to the car. I know what will calm him down, I’d think. More fast food for the ride home. The floor of our car was littered with happy meal toys, cold French fries, and paper sacks.

I was in survival mode. Whatever it would take to get through the moment, that’s what I did. I used food as a motivator and a bribe. I didn’t realize that I was actually sabotaging him. I was feeding him garbage that caused inflammation in his gut, hyperactivity, and an opiate reaction in the opiate receptors in his brain. He was like a little crack addict and I was his dealer. And then I would ask him to sit nicely and participate. Why was I so surprised when he couldn’t?
My child was out of control. He was getting too big to physically control. He was screaming, throwing things, smacking himself in the head, lashing out at others, kicking holes in the wall and ultimately kicked out three windshields on our vehicles. Yet it never occurred to me that food might be to blame.

Looking back, I wonder how much time and money I threw away, not only on therapy he wasn’t able to participate in but that garbage they call food. It makes me physically ill. And I would fight for more and more therapy thinking he just wasn’t getting enough. I remember thinking I should buy stock in McDonald’s and try to get some of my money back that way.

It took a series of fortunate events to wake me up to what I was doing to my child. My daughter was probably most instrumental in the change. She’s his care provider. One day she said, “No, he’s not eating fast food. I’ll make him a snack.” I remember the panic attack I had at the thought of telling him “No Burger King.” How would we ever get through Equine Therapy without that promised reinforcer? I was weak. Thank God my daughter was strong. She put her foot down with him and me. And do you know what? He not only got through Equine Therapy, he began to do very well there. The transition problems he had in the past went away. He began to look forward to Equine Therapy, not for the Burger King that followed, but for the activity itself. Do you know what else? When we stopped going to fast food, he stopped asking for fast food. And on the rare occasions he did ask, we would tell him they were closed and substitute something better.
When we removed gluten, dairy, and soy from his diet, we did see an increase in the behaviors, temporarily, partly because it was a change in his routine and partly because the little crack addict wasn’t getting his crack. He was going through withdrawal. Once we got past that hurdle, we continued to clean up his diet. We look for nutrient-dense foods, no artificial anything, no genetically-modified foods, organic. When he was a fast-food junkie, his diet was very limited. Now, he’ll eat anything we put before him including sauerkraut, salad, and salmon. It’s an amazing transformation. It didn’t happen overnight, but with each improvement in his diet, we saw an improvement in behavior, attention, and cognition. We got his body and brain to a place where other interventions could be effective. I now get glowing reports from music therapy, speech therapy, Equine Therapy, and swim lessons. He participates in special needs bowling and baseball and LOVES it. I haven’t seen the aggression that was so much a part of our every day in a very long time.

I had to realize that I make the dietary decisions for our family. I do the grocery shopping. I am in charge. I have the power to make good choices or poor choices. And for far too long, I was making very poor choices. But it’s never too late to change what you’re doing. One small change at a time is very do-able. When I hear someone say that the “diet” is too hard, too expensive, or “Billy can’t live without his fries”, I have to wonder if their life with their child now is too hard or too expensive, spending money on therapy that’s not working. Our was. I still get teary-eyed when we’re sitting at the table together (that NEVER happened before) enjoying our salmon and salad, and he cleans his plate. The changes have paid off for us big time.

 

 

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How I Spent My Summer Vacation

Summer vacation is different for everyone, I suppose.  Some people spend every day by the pool.  Others take trips to exotic destinations.  And still others spend their days fishing and their nights in tents.  Me?  I’m in a tent but I’m not camping.  This tent is actually a mild hyperbaric oxygen chamber.  I am spending an hour in it every day.  Because of my weight, I have to go into the tent by myself.  But don’t worry.  I’m not alone.  I have my Sponge Bob pillow and my iPad, but mostly I just do the same puzzle over and over and over.  

My tent looks like this:

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By the end of summer, I won’t have bug bites or a peeling sunburn to show for my vacation.  But hopefully, I’ll have less gastrointestinal distress (meaning I’ll have an easier time going), I’ll have improved cognitive function (meaning parts of my brain that weren’t getting oxygen before will now be), and I’ll have remediated some of the mitochondrial dysfunction that is causing me to have seizures, low muscle tone, and autism-like symptoms.  

This is the reality for many of my friends with autism, too.  We spend all our time and money trying to get better while others lie on the beach.  No, it isn’t fair but there’s not a lot we can do about it.  

The definition of Vacation is:  a period of suspension of work, study, or other activity, usually used for rest, recreation, or travel;recess or holiday.  So technically, I am on vacation.  A VERY important vacation.  Unfortunately, it’s not a great deal of fun.  But neither are bug bites and sunburn.

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Biomedical and the Older Child

When Sam was diagnosed at the age of four, I panicked.  At that time, children were being diagnosed at three and I’d already lost a crucial year!  At diagnosis, our marching orders were Speech therapy, ABA, and GFCF diet.  Sam had already been identified by the public school system as developmentally delayed and was already receiving speech therapy.  I didn’t know what GFCF diet and ABA was. 

Thus began the lost years.  From the age of four to eleven, I was lost.  I researched tirelessly but was completely overwhelmed.  I dabbled in diets.  I tried this or that without success.  I was on the autism boat, lost at sea without a captain.  It wasn’t until I attended my first DAN! (Defeat Autism Now!) conference and got my first clear understanding of all that was available to us, that I felt some sense of direction.  I was matched with a stranger to share a room.  That stranger, now my friend, was doing some interesting interventions with her child that were actually working.  She introduced me to Dr. DeMio, who has an adult son on the spectrum.  This was my first introduction to biomedical interventions for autism.   Sam was eleven. 

As we began working with Dr. DeMio, I discovered a few things.  For one, there was no window that slams shut at the age of three, or five, or eight.  Sam made some dramatic improvements when we removed gluten and casein from his diet.  He made even more improvements when we started supplements.   And that speech therapy that wasn’t too successful way back then began to help.   His body was so sick.  We could have done a million hours of speech therapy and it wouldn’t have helped.  We had to heal his inflammation, leaky gut, and methylation pathway before conventional interventions could be effective.

Sam is now sixteen.  We continue to implement the biomedical interventions that are appropriate for him.  His needs have changed.   Our longtime enemy, constipation, is still with us and has been joined by seizures, yeast, and acne.  Therefore, his biomedical care plan has changed to address these issues, specifically.  We’ve also made some vast improvements to our lifestyle this past year, cleaning up our personal environment and changing the way we clean, cook, and take care of ourselves.  Every little change counts. 

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Sam began using the Heavenly Heat FAR infrared sauna this year.  He’s now getting CranioSacral adjustments for the first time.  He’ll do another 40 rounds of Hyperbaric Oxygen Therapy.  Just because he’s older doesn’t mean he can’t reap enormous benefits from the right interventions.   Sam’s needs may have changed but they’re still there.  The only difference is, now I know what to do.

If you’re lost like I was, know that you don’t have to be.  Help is as close as your telephone.  Call Integrated Connections at 937.428.5669 and they’ll help you navigate this journey.  No matter what age.  The window is still open, in fact it never closes.  

 

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We have all these specialists, why do I need to add a doctor that specializes in autism?

Pediatricians.  Gastroenterologists.  Neurologists.  Psychiatrists.  Psychologists.  Allergists.  Dermatologists.  It’s no wonder families are confused.

At one time, Sam had a provider from each of these different modalities.  Each only interested in their specific area of expertise.

About a year ago, I “fired” our Psychiatrist.  Last week, I “fired” our Gastroenterologist.  Yesterday, we saw the Neurologists regarding Sam’s seizures.  I’m ready to fire them, too.  Sam has partial complex (focal) seizures.  They are not controlled, meaning, we still see them.  They started when he was 14 years-old.  It’s quite common for kids on the autism spectrum to develop seizures around the time of puberty and for them to disappear as quickly as they appeared, once the child reaches adulthood.  Because of this, I have taken a, relatively, conservative approach to managing his seizures.  We made dietary changes, added in supplements, reduced his stress level, and he takes daily Onfi and Lamotrigine.  When we see a change in his seizure activity, aka. two or more in a row, we introduce the rescue protocol, which for him means another medication in the same family (Benzodiazepine), Klonopin, which he then takes twice a day for three days.  On the whole, this has kept him down to about two episodes a month.  Do I like the medications?  Hell no.  I’d love to get him off them.  But as much as I hate the meds, I hate the seizures more.  So until I find a better way, I’ll need to make peace with these seizure meds.

We haven’t seen the actual Neurologist since our intake appointment over a year ago.  Instead, we see his Medical Assistant, Sally.  So Sally comes in and begins to get an update on Sam’s seizures.  She doesn’t want to hear about his gastrointestinal issues, leaky gut, nutrition, compromised immune system, the mutation on his MTHFR gene that disrupts his methylation (detox) pathways, or other supplements/medications he’s taking.  She remains solely focused on his seizures, what they look like, how long they last, how he behaves afterwards.  I’m no doctor, but it seems to me that these things are interrelated.  Couldn’t his toxic burden lower his seizure threshold triggering seizures?  What about a food intolerance?  How about adding L-Taurine or Vitamin K2?  Never mentioned it.

She mentioned another EEG.  No thank you.  We’ve endured several inconclusive EEGs.  You don’t need an EEG, I’m telling you exactly what they look like, how long they last, and how his recovery period is after the seizure.  And I did it without sedation, sleep-deprivation, or additional stress.  You’re welcome.

She mentioned bringing in another “specialist” on the team who can talk about alternative treatments, including switching medications, Vagus nerve stimulation, and surgery.  She skims over the possibility of a diet change as being too difficult.  She never mentions medicinal marijuana or Charlotte’s Web, which are hot topics in the seizure world right now.  These natural herbs have been known to stop debilitating seizures in kids, and several states are currently lobbying to make them legal.  But don’t mention this.  Focus on surgery instead.  Why?

Two things are wrong with having these “specialists” on your autism team.  First of all, they only look at the area they specialize in, not the whole child.  Second, their first treatment choice seems to always be medication (or surgery).  Am I grateful to the GI team who addressed Sam’s mega-colon and impaction and got him cleaned out a couple of months ago?  Absolutely!  Do I think their long-term treatment plan of Miralax and X-Lax is satisfactory?  Absolutely not.

Enter the DAN! or MAPS trained physician.  DAN! stands for Defeat Autism Now.  MAPS stands for Medical Academy for Pediatric Special Needs.  MAPS is the new DAN!.  Dr. Deborah Nash is the only MAPS trained physician in Ohio and happens to be Sam’s biomedical doctor.  Why do we need a biomedical doctor?  Because when she looks at Sam, she doesn’t see an ear ache, constipation, seizures, or eczema.  She sees the whole child.  She bases her treatment on lab work, experience, and personal knowledge.  She has a son on the spectrum.  Most of these specialists do, which is why they got into this field of study to begin with.

This is what I thought a Pediatrician did but I was wrong.  We have a pediatrician for the occasional sore throat, ear ache, or upper respiratory condition.  They understand the typical illnesses all children get.  They don’t understand the complicated medical issues children with autism face.  This became clear to me at our last “well child” visit to Sam’s pediatrician.  He offered Sam the Gardasil vaccine.  Gardasil is supposed to protect FEMALES from Human Papillomavirus (HPV) that can cause cervical cancer.  They recently began offering it to boys, supposedly to protect the females in their lives from the virus.  There is a lot of controversy surrounding this vaccine and the vaccine injury associated with its use.  There’s no way in hell my typical daughter, let alone my autistic son, is getting this vaccine.  His offering this vaccine to my compromised and vaccine-injured son only proves how little he “gets it”.  Maybe I need to “fire” him, too.

Autism parents have to be specialists in EVERY field of study related to their medically-ill child.  So now I guess it’s time to research seizure diets (Ketogenic, Modified Atkins, etc.), and supplements to support Epilepsy, and give it a try.  It can’t hurt and it might help.  And it certainly beats surgery.

I’ll leave you with an encounter I had yesterday with another “specialist”.  For some reason during our Neurology appointment, Cincinnati Children’s Hospital thought I needed a visit from a Psychologist.  Maybe they think I’m crazy.  Anyway, this poor little thing comes in looking all of twelve years old, and introduces herself.  “Hi, I’m Nicole, and I’m a Psychologist here at Children’s.  I wanted to see if there’s anything behaviorally with Sam that we might be able to help with.”.  She stares at me with her too-big eyes, expectantly.  Exhausted from trying to manage Sam’s anxiety throughout the hour-long drive to the hospital, and the visit itself, I sigh deeply.  She’s not leaving without a problem to solve so she can feel like she’s done something.  So I give her one.  Sam’s anxiety causes him to pick his fingernails and toenails off, especially at bedtime.  Her suggestion?  To dress my 6′, 145 lb. son in footy pajamas, with the feet sewn on backwards, and zipped up the back, so he has no access to his feet at night.  She seems pleased with herself.  I’m sad.  Sad that she thinks her suggestion was helpful.  I muster the energy to thank her as Sam drags his dog down the hallway, headed for the exit.  He’s done with these people and so am I.  You’re fired.

 

 

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Making sense of lab results

We got Sam’s blood, urine, and stool labs back.  I’ll go over some of the findings below and how we’re supplementing.

Toxic metals:  lead and tin are high.

Organic Acids Test:  lots of stuff high (indicated by a red “H” next to the item).

Cholesterol low.  Yeast high.  Still battling constipation.

So what’s it all mean?  We used the labs to guide our supplement schedule.  We switched from Miralax to OxyPowder.  Miralax is similar to anti-freeze and not a favorite of mine or Dr. Nash.   OxyPowder contains Magnesium, Citric Acid, and Germanium.  It’s being used in conjunction with CALM (another magnesium supplement) and good oils (coconut and almond) to address the constipation.

To address the yeast overgrowth and aid in treating constipation, Dr. Nash prescribed Fluconazole for 30 days followed by Nystatin.  Because our insurance doesn’t cover Nystatin, they’ve substituted Amphotericin.   Probiotics including Ultimate Probiotic Formula from Swanson Health and Culturelle have been added.

Dr. Nash suggested the use of Infrared Sauna to fight the yeast and aid in detox.  To support the liver during sauna use, we’ve added Liver Life.  For information about sauna, click HERE.

To assist his detox, we’re adding garlic and broken cell wall chlorella.  Methylcobalamin B-12 injections will be continued every 3 days and to improve the cell’s ability to utilize the B-12, we’ve added Dr. Steven Langer’s Glutathione Precursor.  A great article about Methyl B-12 can be found HERE.

Sonic Cholesterol was prescribed to increase his cholesterol, as well as continuing his morning ritual of 2 eggs for breakfast.  Eggs are eggcellent brain food.

For overall good health, we’ve added Super Nu-Thera and CoQ10.

We are to avoid parabens, so increased scrutiny while reading labels is needed.

His new med schedule is below.  Note the cholesterol hasn’t been added because we haven’t received it yet.  Because I need to know the total of his combination supplements, I’ve added the individual components together on the right hand side.

med schedule 2.14

We will be seeing Dr. Nash in a couple of weeks and will re-check metals test in 6 months.

 

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From Sensitive Palate to Adventurous Palate

Sam was a very picky eater when he was little.  Goldfish crackers and cow’s milk.  Pretty much any bread-type product would do.  He was addicted to gluten (wheat) and casein (dairy) in the truest sense of the word.  And like any good mother, I made sure my baby got plenty of “healthy” whole wheat and cow’s milk.

The photo on the left is before gf/cf diet. The photo on the right is after being on the diet 2 years.

When we decided to put him on the gluten-free/casein-free diet it was because we felt he wasn’t able to properly break down these proteins and therefore, they were making him sick.  He was not able to absorb the nutrients from his food, his gut was permeable, and he had muscle atrophy.  He was experiencing failure to thrive.

When the body is unable to break down the proteins in gluten and casein it allows undigested proteins to pass through the gut into the blood stream.  According to the Great Plains Lab, these undigested proteins, called peptides, are associated with gastrointestinal, neurological, and neuro-developmental disorders.

Urinary peptides are incompletely broken down pieces of protein. The peptides from gluten and casein can react with opiate receptors in the brain, thus mimicking the effects of opiate drugs like heroin and morphine. These compounds, called neuropeptides, have been shown to react with areas of the brain’s temporal lobes that are involved in speech and auditory integration. Neuropeptides also decrease the ability to feel pain and effect cognitive function.

When we first made the transition, he went through massive withdrawal.   Our family laughs now about the hamburger bun incident of 2008.  Sam had been on the diet about a week when my husband decided to make himself a hamburger.  Sam ran through like a man on a mission, snagging the hamburger bun and running as if his life depended on it.  My husband had to tackle him and take the bun away, completely crumbled.  He was acting like a crack addict.  It was proof positive he was addicted to gluten.

At first, I bought a gluten-free version of the foods he typically ate and replaced them.  It was very expensive and the products were very processed.  Then I sought out cookbooks and began making my own gf flours and baking at home.

We’ve come a long way since those days of Sam subsisting on gf crackers and dari-free milk.  Our entire family is now gluten-free and mostly casein-free.  When we experience an infraction, we take digestive enzymes to help break down the gluten/casein proteins.  We eat organic fruits/veggies when we can, grass-fed beef (no antibiotics, hormones, etc.), free-range chicken and eggs, gf oats, a little rice, almond milk, and salmon.  We avoid GMOs, MSG, artificial colors, flavors, and sweeteners.  I buy the gf version of waffles, bread, and pizza.  I’m experimenting with making my own.

The most surprising thing that’s come from the change in our eating lifestyle has been Sam’s willingness to try new foods.  I never thought I’d say that.  I, literally, thought he’d eat crackers and milk for the rest of his life.   For our family, this change is nothing short of remarkable.  Sam will now try just about anything.

image_3

Sweet Potato Hash

This is a picture of Sweet Potato Hash.  The recipe is simple:  (everything cubed) sweet potatoes, sweet onion, bell peppers, smoked sausage (nitrite/nitrate-free).  The quantities are up to you.

Though I always put a spoonful of whatever we were eating on his plate to try, he usually left it untouched.  When I fixed Sweet Potato Hash, it was the only thing on his plate.  And to my amazement, he gobbled it down!

Next we tried mashed potatoes.  He ate it.  Salmon.  He ate it.  Unbreaded chicken stir fry.  He ate it.  I no longer have a list of five things he will eat.  The list grows everyday.  I’ve had to change the category I’ve had him in: “Picky Eater”, to: “Will Try Anything”.

To what do I attribute this change in palate?  I believe the diet change and supplements have helped heal his gut.  He feels better.  Food doesn’t make him ill anymore.  Maybe, too, the mild hyperbaric oxygen therapy helped heal his gut.   Maybe he’s growing up and his palate is changing.  Maybe all of the above.  There’s no doubt in my mind he would still be eating goldfish crackers and drinking cow’s milk if we had not overhauled our diets.  The addiction was stronger than his body’s need for nutrition.  But mama’s stronger than the addiction.

Parents who won’t try the diet because it’s too expensive, the child is too picky (what will he eat if we take away his crackers and milk?), or it’s too much work, know this.  It can be done on a budget, it’s not that difficult, and your child WILL eat.  And once he/she begins to feel better, they just might eat EVERYTHING.   It takes time for the gut to heal so giving the diet a half-hearted try for a month isn’t enough.  You have to do it for a long while and you have to do it 100%.   Change won’t happen overnight but it will happen.  Sam is the proof.

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Post 5: Testing for Toxic Metals

The final test we’ll be doing in this round of biomedical testing is known as the Urine Elements test.  The pdf of the instruction sheet can be found here.

This is a duration test.  Your physician will tell you how long you need to collect your urine, usually sometime between 7 and 24 hours.  Ours was a 9-hour collection.

1616256_10152044872358521_362690727_n This is a “provoked” test, meaning a chelating agent will be introduced to provoke the elimination of heavy metals through the urine to measure heavy metal output.   This test begins with the administration of DMSA. 

DMSA can be provided in the form the individual can most easily take.  Because Sam can’t swallow pills, his DMSA was compounded at the pharmacy.  They can add Stevia and flavors.  Although we did add Stevia to Sam’s, it was still pretty icky tasting, but with a little juice chaser, he got it down.

DMSA is taken after the first urine elimination of the day.  Then for the next several hours as prescribed by your physician, all urine is collected.1616251_10152045382438521_134863693_n  This image shows all three collection containers, the cup used to “catch” the urine, the large jug it is emptied into throughout the day, and finally, the small sample vial you return to the lab.  If your child refuses to eliminate in the cup, you can also use a toilet hat, otherwise known as a speci-pan, top hat, or witches hat.  You can get this at any medical supply store for under $2.

Once the time is up, the instructions tell you to shake the large container for at least 30 seconds, then pour the urine into the specimen vial to the line indicated.  Do not dump out the rest of the urine until you are sure you have your specimen secured.  Be sure to write the individual’s name, date of collection, and amount of time collected on the vial.

1800979_10152047061898521_2032919643_n Follow the directions for placing the specimen into the specimen bag, complete the Test Requisition Form completely, and include payment.  Call the FedEx number given and tell them you have an overnight delivery prepaid package for pick up.

Then just wait for FedEx to pick up or place the package(s) on your front porch (if you feel confident no harm will befall them – think wild dogs).  1797166_10152047073413521_246426242_n

If the test shows that a significant amount of metals were excreted in the urine via a chelating agent, the doctor might prescribe a round of chelation with more testing until the levels come back within a normal range.  I will share Sam’s results with you when we get them.

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