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.

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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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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.

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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.

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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

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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.

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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.

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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.

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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.

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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.

 

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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. 

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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. 

 

 

 

 

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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.

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Biomedical Debunked-True Blood

TRUE BLOOD

The first in our battery of tests this month is the blood draw.  Sam started getting blood draws regularly around the age of 10.  It used to be much more traumatic on everyone than it is today.  In the past, we’ve had to enlist help to hold him down for a draw.  Talk about traumatic!  Then there’s the time the lab mislabeled his blood, had to throw it out, and called me to come back in for another.  I was in tears knowing we had to do it all over again. 

These days, we’ve learned what works to get Sam through a blood draw.  And as long as the lab hits the vein the first time and doesn’t make any mistakes, it’s almost a non-issue.

A couple of days before the draw, I fax the orders to the phlebotomy lab with the day and approximate time we’ll be arriving, reiterate that Sam has autism and we’ll be bringing a service dog, and instructions to contact me with any questions prior to our arrival.

The day before the draw, we push extra water.  This makes his blood more plentiful and his veins easier to find.  We also talk about going to the hospital in the morning, getting a pinch, and then going to breakfast.  Eating out is one of Sam’s favorite things so he’s excited to go.

Because the Dayton Children’s Hospital lab is open 24/7, we usually do our fasting blood draws first thing Sunday morning when Dad is home to help and we have nothing else scheduled.  That way we don’t feel rushed and we can usually beat the church crowd to the restaurant for breakfast. 

 My husband and I get up with Sam and take turns standing guard so he doesn’t eat anything before his draw.  Sam can be very resourceful when he’s hungry and we don’t want to postpone the draw because he ate something.  We do not give his usual supplements because they may hurt him on an empty stomach.  Water is still encouraged.

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An hour before the draw, I apply EMLA cream and a surgical patch to the inside of his left elbow.  The cream was prescribed by Sam’s pediatrician.  In the past, I’ve done both arms but 99 times out of 100, they draw from the left inner elbow so I take my chances now.  Sam HATES the cream.  The purpose of the EMLA cream is to numb the area prior to the needle stick.  In our case, it also serves a second purpose.  Ever since Sam was little, I’ve made it clear that the only one who can remove the cream is the Phlebotomist.  As you can imagine, Sam is ever-so anxious to see him/her to get that darned cream off as soon as possible and get on to breakfast!

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Even though it’s winter, I make sure he only has a t-shirt on beneath his coat.  Removing multiple layers has been daunting in the past.  We make an effort to get him to take his coat off upon entering the waiting room and before receiving his ipad.  Even though he might be a little chilled, it beats the stress of trying to get the coat off later.

 

It used to take Sam a long time to transition from waiting room to the phlebotomist’s office.  Him holding onto the chair screaming and me trying to physically move him in the right direction.  Now he knows the faster he transitions, the faster he can eat. 

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We move into the tiny room and with a little motivation from his ipad, he’s seated and ready to cooperate to get that blasted cream off.   We keep his mind occupied with discussions of what we’re going to eat for breakfast and promise to indulge him in a gluten-full biscuit, one of his favorite things at Bob Evans. 

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That’s enough to prompt his dominant arm out straight and his right hand to take over the ipad duties for a couple of minutes. 

 

 

 

 

I’m convinced the ruImagebber band and bandages hurt way more than the actual needle prick, and his reactions confirm my suspicions.  He barely notices the needle, and watches as she collects vial after vial. 

 

 

 

 

 

Here is an explanation of the tests they are running at this time:

 CBC-A complete blood count (CBC) gives important information about the kinds and numbers of cells in the blood, especially red blood cells , white blood cells , and platelets. A CBC helps your doctor check any symptoms, such as weakness, fatigue, or bruising, you may have. A CBC also helps him or her diagnose conditions, such as anemia, infection, and many other disorders.

CMP-A comprehensive metabolic panel is a blood test that measures your sugar (glucose) level, electrolyte and fluid balance, kidney function, and liver function.

RBC-An RBC count is a blood test that tells how many red blood cells (RBCs) you have.  RBCs contain hemoglobin, which carries oxygen. How much oxygen your body tissues get depends on how many RBCs you have and how well they work.

MTHFR DNA Mutation-MTHFR (Methylenetetrahydrofolate Reductase) is the name of the gene and the enzyme that plays an essential role in processing the folate we eat into a nutrient our bodies can utilize. People who have MTHFR mutations have an interruption in the “Methylation Pathway.” Methylation affects more than 20 different processes in our bodies and when methylation is interrupted, many many essential body functions are disrupted. This can be worked around by taking the nutrient as supplements that cannot be made because of the missing enzyme.

Amonia levels-An ammonia test measures the amount of ammonia in the blood. Most ammonia in the body forms when protein is broken down by bacteria in the intestines. The liver normally converts ammonia into urea, which is then eliminated in urine.  Ammonia levels in the blood rise when the liver is not able to convert ammonia to urea.

B Homocysteine-Mild or moderate homocysteine elevation can be caused by deficiencies of cobalamin (vitamin B12), folate, and vitamin B6 (essential cofactors in homocysteine metabolism); variations in the methylenetetrahydrofolate reductase (MTHFR) gene; and certain medications, among other factors. Vitamin B12 deficiency can lead to irreversible neurologic damage, folate deficiency during pregnancy may cause neural tube defects, and either can cause megaloblastic anemia. Although folate and vitamin B12 can be measured directly, homocysteine is a more accurate indicator of deficiency at the tissue level.1

Free TS-Testosterone is a steroid hormone from the androgen group primarily secreted in the testes of males and the ovaries of females. Small amounts of testosterone are also secreted by the adrenal glands.  It is the principal anabolic steroid directing metabolism and the repair and regeneration of healthy tissues. In men, testosterone also plays a key role in the development of male reproductive tissues as well as promoting secondary addition, testosterone is essential for overall health and wellness.

Free T4-Your thyroid produces a hormone, thyroxine, which is known as T4. This hormone plays a role in several of your body’s functions, including growth and metabolism.  Some of your T4 is called free T4. This means that it has not bonded to protein in your blood. Most of the T4 in your body does bond with protein.

BH-Tetrahydrobiopterin (BH(4)) has been shown to decrease blood phenylalanine concentration in selected patients with phenylketonuria who can be identified with use of the BH(4)-loading test.  Phenylketonuria (PKU) is an autosomal recessive metabolic genetic disorder characterized by a mutation in the gene for the hepatic enzyme phenylalanine hydroxylase (PAH), rendering it nonfunctional.[1]:541 This enzyme is necessary to metabolize the amino acid phenylalanine (Phe) to the amino acid tyrosine. When PAH activity is reduced, phenylalanine accumulates and is converted into phenylpyruvate (also known as phenylketone), which can be detected in the urine.[2]  Untreated PKU can lead to intellectual disability, seizures, and other serious medical problems.

The rest are pretty straightforward:  iron, Vitamin D, fasting cholesterol, magnesium, zinc, copper, and Vitamin A.

Once the tests come back and we go over them, I’ll share them with you so you can see what they’ve uncovered and how they lead to treatment options.

The rubber band is removed, as well as the needle, and a band-aid is applied.  Then it’s off to breakfast!  On the way to the restaurant, Sam says, “Doctor, was fun!”.  I’m glad he sees it that way.  I still get that anxious knot in my stomach before a blood draw but with the right preparation, they go so much more smoothly now! 

Coming up in this series, urine and stool testing!  A little more complicated but I’ll walk you through it.

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Biomedical Debunked

There still seems to be a lots of myths and misunderstandings surround biomedical treatments of autism spectrum disorder.  Here’s some of the things I’ve heard people say…

It’s voodoo!

How can you experiment on your child like that?

It’s cruel to give him all those supplements and shots!  Those parents should be charged with child abuse!

It’s not proven.

It’s based on lies.

Well, we’ve been doing this “voodoo” with Sam since 2008 and I am here to dispel these myths.  People reject what they don’t understand, so I’m here to educate.  Over the next several blog posts, I’ll be taking you along as we re-do some of the testing that’s typically done at the beginning of a biomedical journey and I’ll try to explain the why and how as we go.

When we began our biomedical journey, it was by sheer accident I was paired up to room with Karen McDonough, president of the National Autism Association of Chicago and the Executive Director of the Autism Society of Illinois, at the Autism One Conference in Cherry Hill, NJ. I didn’t know Karen before the conference but it was by divine intervention we were connected because she introduced me to Dr. DeMio.  Dr. Phillip DeMio is the Chief Medical Officer for the US Autism and Asperger’s Association and the Director of the American Medical Autism Board.  More importantly in my opinion, he has an adult son who is profoundly affected by autism.  He “gets it”.  It was an exhausting week at that conference but when I got home, I had an action plan for the first time since Sam’s diagnosis.  I was energized by what I had learned and the parents I met, and I was empowered by knowledge. 

Contrary to popular (and sound) advice to begin slowly and start one thing at a time, we began making changes simultaneously and immediately.  Sam was 11 and I felt I’d already wasted WAY too much precious time. 

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Sam was a goldfish cracker and cow’s milk kid.  His diet was very limited.  He was skinny, malnourished, low muscle tone, distended belly.  He was so constipated, you could smell feces on his breath.  He had eczema.  He had horrible migraine headaches and behavioral outbursts.  We tiptoed around Sam and his needs so as not to set him off.  If you set him off, it was an hours-long meltdown and the challenge was to keep him from hurting himself or someone else.  Bedtime was a nightmare (as was most of his day).  We would sit for hours in a completely darkened house, quietly waiting for him to decided to go to bed or fall asleep where he was. We were at the end of our ropes, exhausted. 

We immediately implemented the GF/CF diet.  We started by replaced the few things he was already eating with a gluten-free (wheat)/casein-free (dairy) version. This is usually one of the first things parents are told to do.  The reason is, our kids are sick.  They often lack the digestive enzymes required to properly break down food for absorption, creating a peptide problem.  This was not easy.  I’ll never forget the hamburger bun incident of 2008.  Because Sam’s body was going through withdrawal from these opiate peptides (think opium), his body craved gluten and casein for that “high” he was used to.  When my husband attempted to make a hamburger for himself one day, Sam ran through the room, grabbed the hamburger bun, and coveted it like a crack addict, wild-eyed.  Hubby had to tackle him and wrestle it away.  The bun was destroyed.  But we did it.  We learned all we could about GF/CF and implemented the diet with much success.  We supplemented with digestive enzymes when an infraction occurred.  When parents say “It’s too hard.  It’s too expensive.  My child won’t eat that.”, I have to think they don’t understand the urgency.  The food you are feeding your child is making him/her SICKER.  Is he/she not worth the time, effort, expense?  Just because your child doesn’t have an allergy to a food doesn’t mean it’s what their body needs.  Removing the offending foods until your child’s body can properly process them simply makes sense.

Then we saw Dr. DeMio.  Dr. DeMio is a soft-spoken, highly-intelligent man with a calm demeanor.  He took a good 2-hours collecting health history, observing Sam, and understanding our concerns.  And then the fun began.  It’s the same fun we are about to experience again.  This time, with Dr. Deborah Nash.  Dr. Nash is the only physician in the state of Ohio providing biomedical intervention and is a fellow with the Medical Academy of Pediatric Special Needs.  She is also the only biomedical physician in Ohio who accepts Sam’s medical insurance.  So, although I love Dr. DeMio and think he’s probably one of the best in the field of Autism, we have to continue our journey with Dr. Nash.  Dr. Nash saw Sam and I for an hour yesterday going over more recent medical history, current concerns, and established a plan moving forward. She is also a calm presence and worked well around Sam’s anxiety.  She moved from exam table listening to his heart, to standing up looking in his ears, to the chair to check reflexes, never missing a beat or getting frustrated.  Having done the research I’ve done and having been at this a while, I often run into “experts” who don’t know what they think they know.  Dr. Nash is not one of them.  She knows her stuff.

And in order to establish a starting point, we need to run a batteImagery of test.  I expected this. The tests we are doing this month are the same ones we did with Dr. DeMio, so as we go along, I’ll be sharing our current experience as well as our past.  The tests deal with blood, urine, and stool and I’m not looking forward to them, but they are invaluable medical insight as to what’s going on with Sam physically.  These are medical tests to determine Sam’s vitamin and mineral deficiencies, heavy metal toxicity, DNA mutations, Cholesterol levels, and intestinal yeast and bacteria levels. It’s going to take us a month to complete them all as Sam has to be off probiotics for 2 weeks before, and off all mineral supplements 3 days before, some of the tests.  The collections need to be done over the weekends as mailing to the lab can only take place M, T, or W.  The samples are time-sensitive and difficult to collect.  It’s a planning and logistical challenge to be sure.  But the knowledge they give us is invaluable in planning treatment.  And he’s definitely worth the challenges.

So far, doesn’t sound much like voodoo, does it?

 

 

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What a difference a year makes!

I think it’s great that we have been given natural breaks in time for reflection and planning.  Every morning is a fresh, new start, every evening is a chance to reflect.  And so it is at the end of a year and the beginning of another that we take time to reflect on the past and make plans for the future.

This has been quite a year for Sam.  In fact, in some respects, 2013 was a pivotal year for all of us.  But because this is Sam’s blog, I’ll focus on him first.  We entered this year with several major issues we were dealing with, and in reality, had been dealing with his entire life.

Constipation.  Nobody likes to discuss poop more than autism parents.  It rules our lives.  I remember sitting in an Autism One Conference listening to Jenny McCarthy speak and got a text message from my husband showing me the ginormous BM Sam had finally had, with a quarter held next to it to show me perspective.  We had been waiting for this “movement” for weeks and I was overjoyed that it had finally happened.  What relief he must feel!  I turned to the stranger beside me and with genuine joy, she shared in the moment.  Only another autism parent could get it.  We’ve truly tried almost everything to get his gut healthy and moving regularly.  From the Miralax his GI prescribed, to enemas, suppositories, senna, fiber, laxatives, mild hyperbaric oxygen therapy,…you name it.  Some only worked short-term, some I didn’t like having him on long-term.  Some we would have liked to continue, but couldn’t afford.  Real change in this arena didn’t come until we made some lifestyle changes for the entire family.

In September, we really started to look at our eating habits and how we could improve.  We met with Penny Hines, Certified Health Coach at Integrated Connections in Centerville and we also watched Genetic Roulette, a documentary about genetically-modified foods.  We cleaned out our kitchen and began eating as much organic, gluten-free, soy-free, GMO-free, “clean” REAL food as we could.   No more artificial sweeteners, no artificial colors or preservatives, no more soda, no antibiotics or hormones in our meat, no farm raised fish.  No more fast food.  We know we have more to learn, but I’m very proud of the changes we’ve already instituted.  And it wasn’t really that difficult.  Especially when we have seen benefits from the changes.  Because our bodies are used to eating well, gluten now makes us ill.  We get lightheaded and don’t feel well.   We switched to a natural fiber supplement for Sam, and he’s eating so much healthier.  And guess what?  He’s now eliminating regularly and doesn’t have messy pants.  Our poor 16 year-old son was having to wear Depends because he leaked.  Either he was constipated and leaking from the back up or the medications would kick in and he couldn’t control it.  I’m proud to say he’s been in underwear for a month now and lights up when he tells us he’s “dry!”.  Another benefit?  Sam is trying foods I thought he’d never eat.  Sweet potato hash for instance.  Ate it up!

Besides helping with the constipation and poor eating habits, Sam’s seizures have improved, too.  I started him on two new supplements, Brain Calm and Spectrum Awakening.  Both had the nutritional supplements suggested to help with epilepsy.  That, and his new eating habits have definitely changed his seizures for the better and improved his migraines/sleep/behavior.

And speaking of behavior, I’d like to share a little video with you.  Sam has always had difficulty transitioning to school.  It got so bad that he was diagnosed with School Phobia and prescribed a visiting teacher at one point.  I honestly don’t know what prompted this change and I hesitate to think it’s a permanent one, given his history, but give me just this moment of happiness, would you?

He transitioned like this for the 2 weeks leading up to Christmas break.  I’m nervous about it continuing after break but now that I know it’s possible, I’m holding out hope that it can become his permanent habit.  And what a difference this would make in our lives.  It has taken him an hour to transition in the past, complete with screaming, crying, hitting, seizures, and being carried in at times against his will.  This one little change could change everything!

In February, we got Chili, Sam’s service dog.  While it was a challenge for us having an exuberant giant puppy at first, she has grown on us.  She and Sam are inseparable and she’s excellent in public.  She goes nearly everywhere with Sam, a couple of exceptions where he doesn’t really need her, and she does her job at home of being his friend, constant playmate, and companion very well.  Sometimes she’ll just get up on her spot in the couch and settle in when Sam’s high-pitched call (CHILI!) will come and she’s off the couch ready to fetch the ball or lick his face, whatever he needs at the time.   When he’s nervous, he’ll ask “Chili too?” and is comforted in the fact that she’s going, too.  I can’t remember life before Chili, she’s made such a difference for Sam.

In a year, everything can change.  And we’ve been told by several who know him that Sam has changed.  He’s more outgoing and talkative.  He seems happier.  Could he be feeling better?  Could it make that much of a difference?

My world changed in 2013, too.  I teamed up with Kara Ware who opened her own autism and special needs resource center in Centerville called Integrated Connections: Autism & Special Needs Resource Center.  I’m her Office Manager.   It’s because of this connection that our family made the changes we did with food, and are continuing to make with cleaning products, personal care products, and cookware/storage/etc.  It’s because of this connection that Sam and I will be trying Infrared Sauna in 2014.  We’re going to sweat out our toxins!  Can’t wait to see what a difference that makes for him.  For us.

Sam has been “referred out” by nearly every dentist in our immediately vicinity.  I was really struggling with finding someone who (A) takes his insurance (B) understands special needs (C) was willing to work with him and his challenges to become a non-sedated dental patient (D) didn’t want to sedate him for every cleaning (E) allowed parent and service dog back with him.  I finally found Beavercreek Pediatric Dentistry (Dr. Womack) and his team who are willing to see Sam every 3 months (even though his insurance only covers every 6 months-he’s absorbing the cost of the extra visits) to work with Sam to become the dental patient I know he’s capable of being.  So far, so good.  I’ll keep you posted.

We also have an appointment to see Dr. Deborah Nash on January 2.  Dr. Nash is the only MAPS (Medical Academy of Pediatric Special Needs) physician in the state of Ohio.  She is working with us at Integrated Connections and we hope to have a conference in 2015 to educate more physicians about this accreditation.  I’m excited to be working with a biomedical physician again and so blessed that she accepts his insurance.

In December, we created an art corner and reading corner for Sam.  With classical music playing, Sam expresses himself with paint, charcoal, pencils, and crayons.  We’re having fun with it and I feel calmer and more focused after an art session, myself.  He painted so long, I kept sticking fresh paper over the paint-soaked ones just so he’d keep painting!

In the past, Sam would never let me get through an entire book.  Now that he has a special reading corner (complete with 2 zero-gravity chairs and a sunshine lamp) he WANTS to be read to.  At his request in the past 3 days, I’ve read Green Eggs & Ham, The Polar Express, and If You Give A Pig A Pancake several times, as well as other books.  The sunlight is good for him, it makes Vitamin D within the body and improves mood.  It’s good for us, too!  And everyone knows reading is good.  It’s just not something he would tolerate with me until now.

Yes, 2013 was a year of real improvements, not just short term relief, for some very big issues we faced with Sam (constipation, seizures, diet, behavior, transition) and I’m looking forward to 2014 when we continue down this path of improvements and (dare I say it) recovery from the very real medical conditions associated with autism spectrum disorder.

I leave you with this.  If you are struggling with your own health or that of your loved one, consider contacting us at Integrated Connections.  Penny (certified health coach) can help ANYONE improve their health and well-being with simple diet changes, but it’s imperative that this be addressed for someone with a compromised immune system or special need.  It’s more than just a gluten-free/casein-free diet.  She will work with you in your home to implement changes, answer questions, and educate you on WHY these changes work.  We are living proof.  We can also sit down with you and do an in-depth care plan to see what your biggest challenges are, where gaps may exist, and help you find resources to fill those gaps.  You could be where I am at the end of 2014, realizing that issues you’ve been struggling with forever are vastly improved!  I’d love a chance to show you around the center.  We are open for walk-in tours on Fridays between 11-4.  We’re located at 7301 Far Hills Ave., Centerville (2 doors south of Elizabeth Diamond Co.  Look for the little yellow house).  We have so much to offer to address health issues.  Wouldn’t you love to be looking back on 2014 and realize it’s the year you finally made some headway on some issues you thought would never get better?

Blessings to you in 2014!  Hope to see you at the center improving your health alongside my family!

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AUTCON LEVEL ELEVATED

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DEFCON stands for Defense Condition and it’s a numeric system from 1-5 to indicate the level of threats against the United States, 5 being things are pretty calm and relatively safe (no threat) with 1 being (grab your ankles and kiss your butt good-bye).

As I was raising my two typical children, I realized my old level of relaxation (DEFCON 5) was never to be seen again.  My heightened state of alert stayed with me night and day, regardless of whether I was with my children or not.  At any given moment, someone could spike a fever, need stitches, or break an arm.  I needed to be ready at all times to respond to an emergency.  As they grew, there were times of DEFCON 3 when something was bothering them and they wouldn’t talk about it, DEFCON 2 when someone got wood chips in his eye from a high-powered squirt gun or chemically over-treated her hair and it broke off at the roots.  We’ve even had times of being at DEFCON 1, the most horrible summer of my life.  Luckily, everyone survived and eventually, the alert level hovered back down around DEFCON 4. 

But unbeknownst to me, there was a higher level alert system, even above DEFCON.  It was AUTCON.  AUTCON in our home identifies the Autistic Condition levels.  For Sam, I still have the typical worries about fevers, stitches, or broken bones but add to that the concerns autism brings, and you’ve entered a whole new level of alert.  They’ve done studies that indicate that Autism Moms have stress similar to combat soldiers.   I know this to be true.  There have been times in our lives when things seem to be under control, but at no time are things okay.  There’s the constant worry over his current physical health which at the moment encompasses the ever-present constipation battle, his seizures that are not controlled, his migraine headaches, his OCD picking of his finger and toenails until they bleed and get infected, and his nutritional deficiencies.  These constant worries keep me at AUTCON 4 when they are under control and spike to AUTCON 2 when they are not.  Sam’s behavior has, at times, taken us to AUTCON 1.  The summer of 2012 saw him kick out three windshields on our vehicles.  One of those times, I was alone with him at Lake Erie.  He was upset because McDonald’s wasn’t serving lunch yet.   I exited the vehicle to fill the tank and heard it happen.  I knew before I looked what he had done.  Being a holiday weekend, I couldn’t get a glass company to fix it, so we clear-taped it together and prayed all the way home.  We were at AUTCON 1.  There’s the worries over his education, his recreation, his socialization.  I worry about his dental health and his hygiene.  I worry about finding funding to cover the things he needs.  I worry about his future. 

I have friends who have medically-fragile children.  They battle life-threatening seizures and conditions that cause their children to sleep for days on end and turn blue. They have children with cancer and children who need multiple surgeries. For these families, there has to be a level system even higher than AUTCON.  It’s cliche’ to say that I don’t know how they do it, but I don’t.  And I hope I never find out. 

All I know is, I am not alone.   There are millions of families living in the AUTCON zone.  Some at AUTCON 1 as we speak.  But I see my friends who now have grown typical children that are re-discovering life in DEFCON 4.  Like I said, parents can never ever go back to DEFCON 5 again but DEFCON 4 looks pretty darn good.  Unfortunately, I doubt I’ll ever get out of AUTCON and back into DEFCON at all.   Just as I can’t comprehend what it’s like to live with a medically-fragile child, my friends will never fully comprehend what it’s like living with autism.  How could they?  How could I expect them to? 

I don’t need people to understand what it’s like.  I don’t even want them to do anything.  Our comfort zone is being home with him and watching a movie after he falls asleep.  I need to be close so I can monitor him.  But I would like something from the outside world.  Some slack.  We are often isolated, even close relatives not understanding our walk in life, and sometimes Facebook is a place to vent.  Some of us vent a bit more than others.  Sometimes the things I share aren’t pleasant or pretty.  And I really don’t even want a response.  I’m simply venting.  For those who say Facebook is for sharing cute kitty pics and encouraging memes, I’m happy you’re living in DEFCON 4 where everything in your world is rosy.  Block me, unfriend me, I don’t care.  I’m in AUTCON hell and I can’t get out.  Don’t give me advice, just cut me some slack.

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