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.

 

 

Leave a comment

Filed under Blog Posts

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:

Image

 

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.

Leave a comment

Filed under Blog Posts

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. 

Image

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.  

 

Leave a comment

Filed under Blog Posts

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.

 

 

Leave a comment

Filed under Blog Posts

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.

 

Leave a comment

Filed under Blog Posts

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.

Leave a comment

Filed under Blog Posts

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.

Leave a comment

Filed under Blog Posts

Post 4: It’s All About the Poop

Our next step in this “voodoo” known as biomedical testing is the Comprehensive Stool Analysis (with Parasitology x2), aka CSAP2.  A good explanation of this test can be found here.

Fo1743309_10152047603543521_40849745_nr children in diapers, stool collection is a no-brainer.  For toilet-trained individuals, collection can be a bit trickier.  Enter, the Top Hat, otherwise known as a speci-pan or toilet hat.   This device, placed under the seat atop the toilet rim, makes collection so much easier.  You can get these at any medical supply store for under $2.

Again, read all the directions before beginning the test well in advance, in case there are supplements you need to put on hold during testing or avoid certain foods, medications, etc.  Be sure to freeze the freezer packet well in advance.

1503565_10152047051793521_441347330_nThis was a 2-day collection kit.  On day 1, the white top and yellow top vials were used.  Note there are two yellow-topped vials.  The testing requirements are very specific about how to collect the samples, how to fill the vials, and what to do with them once they are filled.  For example, the white top vial was frozen after collection, the others were shaken for 30 seconds after collection.

1779473_10152047051313521_1712683263_n

1800926_10152047053008521_434923316_n

The frozen vial gets placed in the foil packet with the frozen ice pack.  The other three vials were placed into the bio-hazard bag, along with the absorbent pad.  Be sure all the vials are labeled with the individual’s name, date of collection, time of collection, and consistency.

1654820_10152047053553521_233559308_n

And as with the urine collection we did, the Test Requisition Form gets completed, along with payment information if your insurance doesn’t cover the test, and placed in the paperwork flap of the bio-hazard bag.

1779569_10152047055038521_608482805_nAll of the vials are placed in the box that the test kit came in, and placed in the mailing envelope provided.

Be sure to sign and add your return address on the outer bag.  Then call the number provided for FedEx and tell them you have a prepaid bag pick-up for overnight delivery.

Here is the link to a sample report.  I’ll share Sam’s when it comes back from the lab. Sample CSAP2 Report

Leave a comment

Filed under Blog Posts

Post 3: Biomedical Debunked: OAT Test

ImageNext in our battery of tests, the OAT test.  According to Great Plains Laboratory, who processes our OAT test:  The Organic Acids Test (OAT) provides an accurate evaluation of intestinal yeast and bacteria. Abnormally high levels of these microorganisms can cause or worsen behavior disorders, hyperactivity, movement disorders, fatigue and immune function. Many people with chronic illnesses and neurological disorders often excrete several abnormal organic acids. The cause of these high levels could include: oral antibiotic use, high sugar diets, immune deficiencies, and genetic factors.

If abnormalities are detected using the OAT, treatments can include supplements, such as vitamins and antioxidants, or dietary modification. Upon treatment, patients and practitioners have reported significant improvement such as decreased fatigue, regular bowel function, increased energy and alertness, increased concentration, improved verbal skills, less hyperactivity, and decreased abdominal pain. The OAT is strongly recommended as the initial screening test.

So, step one is to read Imageall the directions given to you by the physician and in the box.  There are often foods, supplements, and medications that need to be stopped prior to testing.  In this case, Sam needed to be off all apples, grapes, pears, and cranberries for 24 hours prior to urine collection.  Bear in mind they use apple or pear juice as the main juice in other juice blends, even if apple or pear isn’t in the name.  If an ice pack is included, remove and place it in the freezer.

This is a first morning urine collection which add another level of challenge.  For younger babies and children not toilet trained, there’s the option of a stick on collection bag.  We used these when Sam was little.  Basically, it’s a plastic bag with square flaps that have adhesive.  You stick the bag to the child and the urine is collected in the bag, theoretically.  In our experience, the adhesive would come loose as the child moved and sometimes it worked, sometimes it failed. 

With toilet trained children, it’s a matter of being prepared and speed.  I keep the bottle on my nightstand so when I hear Sam headed to the toilet in the morning, I can grab it and run.  Because the kit needs to be mailed Mon-Thurs., I try to collect the urine over the weekend and mail it first of the week.  And because I’m usually not successful the first couple of days that I try, I have a cushiImageon built in.  That was the case this time.  The first day I tried, he didn’t eliminate his first morning’s urine until 12:30 PM.  He went upstairs and urinated before I knew what he was doing and missed my opportunity.  The next day, he went before I could get there.  Day 3 was my lucky day and I ran in and thrust the cup into the stream of urine before he knew what was happening.  Success!  Be sure you label the container with name, date/time of collection, and any other information it asks for.

Next, the directions tell you how to wrap and package the container for mailing.  They are very specific so you want to be sure and do it correctly or it may be rejected by the shipping company.

ImageImage

Image

Wrap the cup of urine with the absorbent cloth and place it in the biohazard bag.  The biohazard bag has a section for the paperwork.  Complete all the Red areas on the paperwork, be sure to include payment if necessary, and place it in the bag.

Image

Retrieve the frozen ice pack from the freezer and place it in the foil pouch with the biohazard bag.  Seal and place the foil pouch in the box the kit came in.

Image

Place the box into the mailing bag supplied with the kit.  It’s pre-addressed and pre-paid, if mailed Mon.-Thurs.  Great Plains won’t pay for weekend shipping which includes Friday-Sunday.

Image

Complete the label with your return address and sign the small section that calls for a signature.  Call the number to schedule a pick up at your location.  Be sure to keep your tracking number, which is often in the mailing bag.

 

Image

And there you have it.  I’ll share the results when we get them.  Next, the stool collection (which we’re having difficulty getting) and the DMSA 6-hour urine collection.  Because Sam was in the hospital for bowel obstruction and impaction, he is on a laundry list of laxatives right now that inhibit the collection of a “clean” stool sample.  They are very specific about the types of laxatives that can be taken prior to collection and we need to wait to collect the stool when he’s not on so many. 

Leave a comment

Filed under Blog Posts

We interrupt this life for an emergency.

Recent research suggests as much as 50% of children with autism have gastrointestinal issues as a co-morbid condition associated with autism spectrum disorder.  For Sam, constipation has been a chronic condition.  In a typical child, you would treat with more water, fruits and veggies, and more fiber and the situation would be resolved.  As with everything associated with autism, it’s not that easy.  Leaky gut, weak muscles, withholding of stool, food intolerances, yeast, bacteria, sensory issues, indifference to pain, medications, nutritional deficiencies, and a host of other issues can create a vicious cycle of constipation and diarrhea.  If the parent confuses the constipation for diarrhea, the problem can get much worse.  We have tried everything from dietary changes and supplementation to long-term Miralax use, enemas, suppositories, and scheduled elimination times.  I know many families dealing with this issue on-going as we are, and I suppose we have been lucky in that Sam’s issues haven’t required hospitalization, until now. 

Sam is on a gluten-free, casein-free, soy-free, organic diet.  He takes natural dietary fiber twice a day.  He drinks prune juice daily.  He takes probiotics and digestive enzymes.  He has scheduled elimination times (because he does not initiate toileting on his own).  And yet, he was not eliminating.  Because he is 16 and requests privacy when in the bathroom, we were not watching as closely as we should have been.  He would flush and say he went (Big Poop!) so we believed him.  That was our first mistake. 

On Wednesday, his teacher messaged me and asked if Sam was on a new laxative.  He was having accidents.  Diarrhea for Sam is often a symptom of constipation because it’s merely leakage around impacted stool, so when he got home from school, I gave him extra fiber.  A couple of hours after that, I gave him magnesium citrate.  When neither worked and he was obvImageiously uncomfortable on the toilet, I grew concerned.  Another hour later, his stomach became swollen and hard.  I feared a blockage with the fiber creating gas behind it, bloating his belly.  We took him to the nearest hospital.

I assumed the doctor would check his belly, prescribe an enema and laxatives and send us home.  That was not the case. 

They took an x-ray and were shocked how enlarged and impacted his large intestine was.  He also had a large blockage at the rectum preventing stool from passing.  They discussed several options including surgery. 

After consulting with Children’s Hospital, it was decided that Sam would be transferred by ambulance to Children’s and the GI team would be consulted.  The director of the department is the doctor we saw several years prior, so I felt comfortable with him overseeing Sam’s treatment plan.

I was feeling very guilty for not having realized the severity of his constipation and how much pain and discomfort he was obviously in.  As proactive as I thought I was, I hadn’t been vigilant enough.

Sam actually loved the ambulance ride, looking around at all the supplies and watching his Dad follow us in our car.  When the ambulance driver learned that Sam loves trains, he showed Sam a photo on his cell phone of a train that he took and then took the long way to Children’s to go over the railroad tracks.  The small kindness of strangers makes a huge difference.

ImageOnce we were at Children’s, they gave him Ativan, did a CT scan and attempted an enema.  It wouldn’t go in.  They, then, inserted a Nasogastric tube (NG) through his nose and into his stomach by which they would pump GoLYTELY fluid, a mixture of Polyethylene Glycol (Miralax) and Electrolytes.  GoLYTELY is often used as a colon cleanse prior to a colonoscopy. 

He was still miserable.  It would take several hours for the medication to begin softening the stool so it could pass.  He required constant line-of-sight supervision as he would pull his NG tube out every chance he got.  He was successful on Thursday and we had to hold him down as they re-inserted it.  Each time the NG tube was placed, he had to have an x-ray to be sure it was in the right place, and his physician would have to verify it before the medication could resume.  On Friday, he again attempted to pull it out, resulting in it being placed back in, x-ray taken, and verified so that medication could resume.  Each time, it would cause another delay in treatment.

 

Sam did notImage sleep that first night in the hospital.  When he did doze, I was so afraid he would wake and pull out the tube, I didn’t sleep.  Because it wouldn’t stick to his skin and he kept messing with it, they put a lot of tape on the NG tube, which might have bothered him even more, and more likely he’d try to remove it at the first chance he got.

When the medication did begin working, Sam was too weak to make it to the toilet in time, thus creating monumental messes you can’t imagine and we didn’t know where to start cleaning.  This is when I realized how sorely underpaid nurses are, God bless them.  They never batted an eye at helping Sam get cleaned up and preserving his dignity as much as possible.

 

 

 

After 4 hours of sleep the second night in the hospital and some good movement, Sam seemed a little perkier.  ImageHe was still trying to pull out the tube, but at least he was smiling a little.  He began to understand how to roll from one side to the other, and lift himself up, to assist the nurses in changing him. 

He was allowed clear liquids, nothing red, which limited him to chicken broth, green or orange jello, and apple juice.  He didn’t like the broth and they were out of green jello so that left him with orange jello and apple juice.  Every couple of hours, he would have some jello and juice.  Because they were pumping the liquid into his belly, he wasn’t as hungry as you might suspect. 

 

 

 

 

Image

Grandma and Rachel came to visit.  Chili, Sam’s service dog, was a regular visitor as well, though she didn’t stay the entire time.  The hospital was very welcoming to her and she garnered a lot of attention coming and going.  

 

 

By Saturday, Sam had had enough hospital.  He began refusing to get up to use the restroom and was very cranky about getting his vital signs taken.  He didn’t want to be changed.  He was DONE.  Unfortunately, the medical establishment doesn’t just discharge someone because they’re tired of being at the hospital.  Sam’s stool had to be mostly clear liquid, like what they were pumping in, and the clean colon verified by x-ray, before considering discharge.  We began visiting the toilet as close to hourly as possible in the hopes that the next one would be the clear one.  By mid-afternoon, we were close and I called the nurse in to verify.  She called the doctor to order the x-ray. 

ImageBy late afternoon, Sam was completely uncooperative.  He was exhausted.  In between the x-ray and the discharge orders, Sam fell asleep.  We woke him up to remove the IV and NG tube and Sam freaked out.  He began kicking at us, hitting, and smacking himself in the head.  It was scary and disturbing as we hadn’t seen behavior like that in years.  Sam stands 5’11″ and 150 lbs.  Quite a bit larger and stronger, and more difficult to handle.  But I didn’t want them to restrain him and cause further stress on him so Bob and I got his body physically safe, dismissing his nurse until we had him calm.

After a few minutes, he was cooperative for the NG tube removal and prepared to go home.  We think it was because we woke him up that he reacted the way he did.  After all, that was what he had been asking for since we got to the hospital. 

He’s now prescribed 4-5 squares of chocolate X-Lax every evening and schedule toilet time each morning after breakfast.  If unsuccessful, another scheduled toilet time in the afternoon.  He’ll be on this regimen for 3 months until the colon returns to normal size and function.  Or as close to normal as it can be.  I will forever be monitoring output from him, now, so we never have to go through this again. 

There are a few good website and videos out there to help families deal with constipation and gut issues:

http://www.tacanow.org/family-resources/the-poop-page/

http://www.breakingtheviciouscycle.info/p/autism-gi-problems/

http://www.danasview.net/constip.htm

http://www.youtube.com/watch?v=ELTaX3du3l4

The bottom line is this.  The autistic gut and the typical gut are not the same.  At least half the kids with autism have some gut issues related to their diagnosis and need more aggressive treatment and more consistent intervention.  This is more than simply drinking enough water.  It’s a complex situation that requires a complex, and often unconventional treatment.  Impaction and obstruction can happen to anyone because symptoms often go unreported by the child and are invisible to the parent.  The gut is the body’s second brain and should be taken just as seriously.

2 Comments

Filed under Blog Posts