MTHFR - Connecting the dots

 

When the tears dry enough for you to see through them, it is natural for us to look back and ask, what happened?  And there are more answers than we think.  One of the answers lies in the MTHFR gene mutation that many children with autism have.

The MTHFR gene mutation argument starts at conception.  Per Benjamin Lynch, ND of www.MTHFR.net ,  “Folic acid supplementation while pregnant is old news.  Women need to supplement with L-5-MTHF and Folinic acid – not folic acid.”  Folinic acid is the broken down form of folic acid.  It is estimated that about 25% of the population has a MTHFR gene mutation which has many adverse effects.  One of the effects is the inability to break down folic acid and it must be supplemented in the form of “methyltetrahyrofolate” or “metafolin” or “folinic acid”. When the body cannot break down folic acid, you end up with high levels of homocysteine.  The effect of high homocysteine takes many forms and they are still being discovered.  But here is what we know:

The effects of a MTHFR gene mutation can be:

Blood clots, stroke, depression, autism, bi-polar disorder, cardiovascular disease and infertility or several miscarriages. 

And how is the gene mutation “turned on”?  Usually methylation is inhibited by Candida overgrowth in the GI tract.  And what is the #1 Cause for Candida (or yeast)?  Heavy metals…Yup…there it is again.  The Autism and Heavy Metals connection. 

Now to connect the dots…..

For us, it took over a year to conceive to our first child, and I was fairly young…still in my twenties.  When we finally did, I was so incredibly sick for the entire pregnancy that I could barely function.  She was born at 33 weeks (7 weeks premature) and had an in-uterine stroke that left her with brain damage in two quadrants of her brain.  Seven doctors could not determine why it happened….but it did.  Yes, she was premature, but a stroke is not common for a baby at this gestation. 

A year later, I had a miscarriage.  And six months after that I had an ectopic pregnancy that ruptured, requiring emergency surgery and I lost one of my fallopian tubes.  I could have lost my life.  At the time, I chalked it up to bad luck and went on fighting my daughter’s severe autism. 

Then, when my daughter was about 2 ½, I brought her to a kinesiologist who found that she needed methyltetrahyrafolate or folinic acid (NOT folic acid) because she could not break down folic acid.  We started giving it to her but I still was not connecting the dots.

Shortly after that, I got pregnant yet again with my second daughter and was again deathly ill at only 5 weeks.  The kinesiologist saw me right away and found that I too needed methylfolate (L-5MTHF) acid.  He likely saved my second daughter that day.  I started taking it and my sickness was not as bad as it was with the first.  Although I did go into premature labor at 34 weeks, and was required to be on bed rest, she was born at 39 weeks, a very healthy baby.  She later developed sensory processing disorder and was also found to have a MTHFR mutation and needed supplementation with folinic acid.

And years later, I took methylfolate, the broken down form of folic acid when we became pregnant with my third child.  However, I was not very good about taking it when I got sick, and I went into preterm labor at 29 weeks.  I was required to be on bed rest for the rest of my pregnancy.  I delivered a beautiful, healthy boy at 39 weeks.  

With the ease of genetic testing, I have found that my own problem does not lie with MTHFR as it does with my children and husband, but with the DHFR gene of which I have several mutations.  The DHFR gene mutation is directly related to not being able to break down folic acid into L- methylfolate. The DHFR gene is responsible for the first two steps of the transformation of folic acid into folate that the body can use.  Since I have mutations on this gene, I cannot break down folic acid (the synthetic form) at all and need to supplement with methylfolate and eat lots of folate in my diet.  

Most recently, with genetic testing, my husband has been found to have both MTHFR gene mutations (A1298C +/- and C677T +/-) as well and he too needs supplementation with methylfolate.  With my husband affected with MTHFR....and me, affected with DHFR, it is no wonder my kids have problems with breaking down folic acid and detoxifying.  In fact, my daughter with autism has a MTHFR A1298C (+/-) gene mutation, several DHFR (+/-) gene mutations among many other mutations that affect methylation pathways. 

However, we know now that it is possible for a gene mutation to be “turned on” and “turned off” with environmental factors.  So what can you do if you suspect a MTHFR gene mutation?

#1 – Get a geneticist to run the tests to look for a MTHFR gene variation. Or www.23andme.com tests for methylation SNPs.  You download your 23andme results into genetic genie to get methylation information. It is only $99 and is a spit test. This is what I did.  LiveWello can also interpret your raw data from the 23andme test for you.  Or, you can order a testing kit through mthfr.net 's site.

*And please be advised that testing levels of folic acid in the blood does NOT tell us anything.  Most ASD kids have normal or high levels of folic acid in the blood.  This is because they cannot break it down.  The only true measure of your child’s folic acid is measured with a spinal tap and that is very invasive.

#2 – Treat the Yeast.  Eat a low sugar diet with more healthy fats like coconut oil, olive oil & avocado and less grains and carbs.  Yeast feeds on sugar & carbs.  Use Grapefruit seed extract (GSE) and Oil of Oregano to kill the yeast, then replenish the good flora with probiotics. Give probiotics at LEAST 4 hours apart from the anti-fungal.

#3 – Take Methyltetrahydrafolate.  I like FolaPro by metagenics.  Often it is very good to supplement MethylB12 in conjunction with Folinic acid because of the folate trap.  Seeking Health makes a great one that dissolves on your tongue so it is great for kids! http://www.seekinghealth.com/active-b12-lozenge.html  .  Some kids with autism will improve significantly when put on a broken down form of folic acid.  My daughter certainly did.

#4 – Consider AC Chelation.  This is extremely low dose chelation that is safe and is given on a time schedule per the half-life of the chelator.  For more information on this, see www.recoveringkids.com .   Removing the heavy metals from the body and brain is the only way to possibly reverse the effects of the gene mutation.

#5 - Most importantly....please know that this mutation makes detoxification difficult for the body.  So, go green and keep toxins away!

So, there it is….Will you hear this from your child psychologist?  Likely no.  Will you hear this from your child’s pediatric neurologist?  I sure hope so, but likely not yet.  However, the studies have been coming fast and furious this past year on MTHFR….so hopefully, awareness is on the horizon.

I have included some of them below along with some great sources for information on MTHFR.  Happy Healing!

UPDATE: 

Many of you have asked how taking methylfolate with methyl B12 has helped my daughter.  This was not an over-night "wow".  It takes some time for the folate to build up to an acceptable level in the body.  We saw slow and steady gains with speech and cognition and socialization.   I see more irritability in her little sister when she does not get her methylfolate and B12 in the morning.

Sources:

Benjamin Lynch, ND of www.MTHFR.Net

http://mthfr.net/mthfr-and-methylation-presentation-pdf-version/2012/06/06/

http://ghr.nlm.nih.gov/gene/MTHFR

https://www.facebook.com/mthfrsupport?ref=ts&fref=ts

Association of MTHFR Gene Variants with Autism 

Journal of American Physicians and Surgeons Volume 9 Number 4 Winter 2004

the compound 677CT/1298AC

heterozygous mutations were more prevalent in the autistic

population, 25%, than in controls, 15%

http://tonydunford.me/Autism/pdf/boris.pdf

MTHFR C677T polymorphism and recurrent early pregnancy loss risk in north Indian population

Reprod Sci. 2012 Feb;19(2):210-5. Epub 2011 Dec 2. http://www.ncbi.nlm.nih.gov/pubmed/22138544

MTHFR C677T and A1298C polymorphisms and cerebral stroke in two twin gestations. 

Childs Nerv Syst. 2011 Apr;27(4):665-9. Epub 2010 Nov 27. http://www.ncbi.nlm.nih.gov/pubmed/21113717

The association between first trimester micronutrient intake, MTHFR genotypes, and global DNA methylation in pregnant women.
 J Matern Fetal Neonatal Med. 2012 Feb;25(2):133-7. Epub 2011 Mar 28.http://www.ncbi.nlm.nih.gov/pubmed/21443409
 
Meta-analysis of MTHFR gene variants in schizophrenia, bipolar disorder and unipolar depressive disorder: evidence for a common genetic vulnerability?
Brain Behav Immun. 2011 Nov;25(8):1530-43. Epub 2010 Dec 24. http://www.ncbi.nlm.nih.gov/pubmed/21185933

Bramble Rose

The cool night air of the last day of summer.  The moonlight shining down onto the large open space in small town USA.  A small stage and a crowd of people, all ages that have come to see their hometown singer who has made a living of singing her songs to adoring fans….

My husband and I were lucky enough to get a sitter and head to an outdoor concert and watch Tift Merritt sing.  We have been fans since before my first daughter was born.  At the concert, she made a comment that “Bramble Rose”; one of my favorite CDs is now ten years old.  This struck a cord with me, as my oldest child with autism will celebrate her tenth birthday next month.  

In those early years, I listened to Tift’s music as I battled my daughter’s autism and found inspiration in her words.  I think back on those days and realize that I had no idea what I was doing, and just learning as I went and hanging on for dear life.  Staying up late researching, discovering horrifying truths…my heart was ripped wide open and I felt the only way to heal it was to heal her.  I was toughened by truths that are hard to swallow and I found a determination in myself that was unparalleled.

I spent my days wrestling a child to the ground and keeping her in bear hugs so that she wouldn’t and couldn’t hurt herself or anyone else.  I spent my nights planning my next steps and reading pub med journals. I learned how to read amino acid tests.  I learned the signs of yeast overgrowth.  I learned how to communicate with a non-verbal child.  And I learned the signs of vaccine damage. 

From Tift Merritt’s song, Bramble Rose…..

“Do you think I'll be happy out on the wind?

Do you think I'll get halfway before it's rainin' again?

Will I find that I'm true when it's hardest to be?

Or will the notions I follow have all turned on me?

So my love has, grown as sharp as, a bramble rose
Like a real good woman nobody knows

Once my love has, blown as far as, a bramble rose
Just a real good woman nobody knows”

So last night, I wept as I heard I heard Tift Merritt sing.  Just the sound of her sweet voice brought back the gut wrenching pain of Marley’s early childhood.  I remembered myself, about 7 months pregnant with Skylar and on the ground with Marley, trying to settle her from yet another wild meltdown…trying to talk calmly to a child who could not talk back to me.  Daily…for hours…several times a day…this would happen.

So, like the smell of the hand soap from Duke hospital brings tears to my eyes every time…..those memories are etched into my being.  They have made me who I am today.  Passionate about healing environmentally damaged children.  Determined to tell every pregnant mom not to get vaccines.  Begging young mothers not to feed their babies GMO formula or feed their young kids GMO foods.  Spending my free time meeting with moms and dads of newly diagnosed kids to tell them there is hope….and how to get to the land of happy, healthy children.

Because my daughter will be 10 next month.  The same age as Tift Merritt’s Bramble Rose album.  And in those ten years, she has gone from a child with severe autism where the doctor told me not to have any more kids and not to get my hopes up, to a child that now has friends and is fully mainstreamed for third grade.  It has been a hell of a battle, and I was certainly toughened significantly by the experience.  I have lost friends.  And gained new ones.  New friends that understand that my “bramble” comes from a place of pain that I never want anyone else to experience.   I can't bear to hear someone else's baby has slipped away.  And that my journey won't end until she is fully healed.

Food Allergies - Xander's story

Here I sit....crushed again.  I feel like I live on a rollercoaster.  And I hate rollercoasters.  Lately, I can’t seem to shake the feeling that we are so different than most families.   How our family lives our life.  How we live with autism.  How we live with a different diet than most out of necessity.  How we live with severe food allergies.  And how this affects the relationships in our lives.

School has started for my older girls and knock on wood….all is well so far.  My oldest with autism is being fully mainstreamed for the first time ever, and doing wonderfully, thanks to the Brain Balance program we did last year.   And before I can even celebrate her success, I get a call from the preschool where my son is enrolled and will start next week to talk about his food allergies.

I remember the day he tested positive for a peanut allergy…and a rice allergy….and a dairy allergy….and an egg allergy.  He was only 7 months old.  And he sat there sweetly while huge welts showed up on his back during skin prick testing.  Showing allergic to foods he had only ingested via my breastmilk.  Tears welled up in my eyes as the welts grew bigger and bigger because I knew this was a game changer.  Peanut allergies are life threatening.  And the child typically does not outgrow them. 

I am no stranger to food allergies.  My first-born daughter was also diagnosed with food allergies when we gave her formula for the first time and her eyes swelled almost shut and she had hives all over her body.  But Xander’s symptoms were different.  He was a very colicky baby and at 5 months old, a rash around his mouth showed up that looked like impetigo.  But it was clearly from the solid foods I was giving him, which consisted of rice cereal mixed with breastmilk and a few purred vegetables.  He also had eczema, cradle cap, nightly crying due to tummy distress, gas, and he refused tummy time.

*Notice the red cheeks, the cradle cap, the crusty wound above his lip and the red bumps on his forehead.....all symptoms of a food allergy that not even the pediatrican picked up on.

*This happened after I ate almonds when nursing him.  It took a steroid cream and 3 weeks to heal.

Now that I had a diagnosis, I knew how to fix his problems, and sure enough his symptoms disappeared with diet change (and MY diet change because I was nursing him.)  A few months later, I had blood drawn at Duke to see his actual levels and when the results were in, it was frightening.  His allergy to dairy, nuts & eggs were sky high with lower levels for rice and avocado.  And a year after that, we discovered yet another allergy – wheat.  Although he was eating wheat with no rash or hives…he had chronic diaper rash and he had nightly waking until we took the wheat out.  Poor guy was likely in distress from the gluten. 

So today is the first time….of many I am sure….when I am realizing that living with a life threatening food allergy is no cake walk.  The director of Xander’s preschool called this morning to say that she got my e-mail sent to my son’s preschool teachers outlining all of Xander’s food allergies and the possible reactions.  Then she asked me…”Are you sure you want to send him as a 2 year old?  We will do our best to protect him, but with 10 kids and 2 teachers, we cannot have eyes on him at all times, and I fear he may eat something off the floor that he shouldn’t and then we would have a situation on our hands.” 

Let me first say that I love this preschool.  They are so wonderful and protective of our kids but it hit me as she was talking, that she could not protect him no matter how hard they tried.  She told me that she could make the classroom peanut free, but they share a room with another class that is not peanut free.  And what if something from that class ended up on the floor, in the corner where only curious toddler eyes could find it.  What then? 

And they could have Xander bring his own snack, not to partake in community snack time, but they would likely have to put him at a different table, by himself at snack time so he wouldn’t sneak the other child’s dairy-gluten laden goldfish. 

The scenarios that she was concerned about went on and on.  She finished by telling me that she is NOT telling me that he cannot come, but if it were her child, she is not sure she would send him.  And I knew then, that she was right.  My sweet boy could not attend preschool for at least another year…until he knew enough not to eat “forbidden food”.  For his own safety.  He is being excluded for his own safety.

It breaks my heart.  I want him so badly to have social interaction, especially because he is so verbal and bored with me at home while his older sisters go to elementary school.  But I suppose there are lessons learned.  The preschool director said that from now on, when a parent mentions a food allergy, she will ask more questions, like “to what and how severe?”

And I have learned that I need to keep fighting.  For advocacy, for awareness, and for healing.  Yup…the fight must go on.  And in the meantime, my 2 year old is stuck with his mom for the school year.  I guess that’s not so bad. 

Keeping the Faith

In exactly 5 days, my 9 year old daughter will be starting 3^rd grade in a fully mainstreamed setting without an aid, with only the assistance of a resource room teacher.  This accomplishment has been years in the making and is proof positive that she is on the road to recovery.  Unfortunately, this transition comes with great anxiety for me.  I wonder how she will cope with a new setting, new teacher, new “friends”.  Will the kids be good to her?  Will she be disruptive?  How will she adjust to days of school and nights of therapy and homework?  There are so many worries.

When my mind begins to get frightened by the unknown, I find myself having vivid memories of when Marley was a baby.  These were the days before an autism diagnosis, but scary days all the same.  She had received a diagnosis of a Grade 4 brain bleed (the worst grade) when she was only 2 weeks old.  She was born 7 weeks early.  Those were the scariest days of my life.  But they were also the days that were extremely enlightening for me.  Until then, I lived in a state of blissful ignorance. 

In my current state of anxiety, I find myself slipping back in time, to a place where a 3 month old baby cried through the night and slept in 20 minute increments and only when placed on your chest.  Chris and I would take shifts staying up with our new beloved tiny baby.  He took the 9pm-1am shift and I would take the 1am - 7am shift.  These shifts consisted of sleeping in 30 minute increments and rocking and consoling an incredibly colicky baby (which we later discovered was due to food allergies). 

Thank goodness for a glider purchased for me by my mom.  We lived in that thing.  During my shifts, I often found myself doing my best to console a baby with soft adult words.  “Everything will be okay, Marley.  I promise.  I will make sure of it.  You can trust me.”  Then my tears would stream right alongside hers because I had no idea how I was going to keep that promise.  It was a nightly routine.  Singing to her, both of us crying, the feelings of helplessness and my unwavering commitment over and over to her that I would make everything okay. But I was scared.  I am a do-er, but I had no idea how to “do” this.  I promised her in the dead of night that I would always be there for her.  No matter what.  Always. 

Then one night, at about 2am, I was weeping quietly as I held my crying baby close to my heart in my favorite glider when suddenly I felt a sense of calm come over me.  There was nothing but a small nightlight on in the room, but I felt a presence with us.  And oddly, it was as if I knew who it was.  It was Chris’ much-adored grandmother who had passed years ago, when my husband was only 12.  This woman is revered in my husband’s family for her sweet and generous nature and although I never met her, I feel as if I know her from the stories that are told about her.  The baby I was holding is her namesake.    

My crying baby settled suddenly and I felt as if I was holding my breath.  My tears stopped and I was in wonder about what was actually happening.  I could not see her presence but I knew where she was in the room.  Somehow, I knew she was diagonally across the room from me, yet I could only feel her.  Why was she here? My exhausted mind was racing.  Was this actually happening?  Was I hallucinating?  Was I really THAT tired? 

I just sat there with my awe and peace and bewilderment until suddenly, I snapped out of it and started to become scared of what was happening.  My heart started to race wildly and at that very moment, my husband walked into the baby’s nursery.  This was very odd, because he had no reason to come in. He should have been sleeping.  The crying had stopped and he and I always took advantage of our allotted sleep time.  Yet, there he was and he asked “Is everything okay?”  I said, “I’m a little scared because I think your grandmother was just here.”  Then, my skeptic of a husband said, “Well, there’s nothing to be afraid of because she would never hurt you.” 

I realize now, that when things get scary, there are people looking out for us.  Those that have passed and those that are still here.  And I know they are there to help me keep the faith that everything will be okay.  They will guide me and help me through the rough patches.  I have since vowed to follow my instincts and watch for their signs because they are all around us.

Incidentally, a few months later, I was searching high and low for a light purple / lilac colored dress to match Marley’s for our mother-daughter baby photos.  After scouring the mall and on-line for a week, I finally gave up and ordered a plain white dress on-line.  And wouldn’t ya know it?  It showed up in lilac color.  It wasn’t even offered in lilac color, but who was I to question such a wonderful gift.  And it turns out that Chris’ grandmother’s favorite color was…. drumroll, please….yup....Lilac.

On being a Biomed Mom

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I have always been the type to ask “why?”  I was a quiet, pensive child with two younger siblings that were louder and more outgoing than I was.  Being the oldest sister, I was also the caregiving type (much to my younger sisters dismay.)

When I was confirmed in the Presbyterian Church at age 16, I pestered the minister constantly with why and how questions during our confirmation classes.  Luckily, the minister was a progressive lady that was amused by my interest and questions.   She answered many of my questions with questions of her own.  I liked her very much.  The other kids didn’t have much time for the classes and wanted to simply get it over with to please their parents.  Not me.  When confirmation day came, I was coined “The one who asks questions” by the minister.

Sixteen years later, when my first-born child was diagnosed with autism, my natural instinct to ask questions kicked in.  There were so many questions.  How does a normal child go from making eye contact to ignoring you? Why is she always so sick?  Why does she have constant long-lasting meltdowns over seemingly nothing?  HOW did this happen?  I didn’t have much spare time but when I did, I stayed up late into the night reading pub med studies on autism.  On GI illness and autism.  On food and how it is related to autism.  On toxins and how they affect the brain.  And on vaccines and autism.  I talked to moms who were just as curious.  Then it happened.  I met a mom that had recovered her daughter and her son was well on his way to being recovered as well.  A real live mom that had done this on her own….despite what the doctors had told her.

That was it.  I had to learn more.  I recruited one fabulous autism mom and friend to join me in a trip to Boston for a conference where we immersed ourselves in Autism research and healing.  It was an eye opening experience.  There was science….real science behind the causes and the healing being done for these kids.  I was hooked.  I never looked back.

That’s the thing about becoming a biomed mom.  Once you are hooked, you become jaded.  You become hyper-aware. It is disconcerting.  It is disturbing.  It is downright appalling what is happening to our children.  It literally makes your heart ache for all the babies out there suffering because we have no laws that govern the chemicals being put in the air and land and water.  Because we allow more and more vaccines to be approved without appropriate efficacy and safety studies.  Because we continue to allow GMO foods to enter our grocery stores when GMOs clearly affect the gut flora which directly affects our immune system. 

Over the years, I have been much too busy to pay attention to anything except my family and their health.  Everything else has suffered.  My friendships have all but vanished.  My social life is null.  It has been almost a year since I have had a haircut for God’s sake.  I am too busy treating Marley’s very REAL medical problems.  She has food allergies.  She has Eosinaphilic Esophagitis.  She has chronic constipation problems. She has low glutathione, high oxidative stress, a MTHFR gene mutation, which affects the methylation cycle, low folinic acid, candida overgrowth and amino acids that are ALL over the charts.  She has high levels of lead confirmed with a chelation trial.  And if you think these are uncommon for a child with autism…think again.  All of her ailments have been discovered with very REAL lab work and medical tests that were deemed unnecessary by the pediatric developmental neurologist.  Add to this list, the syrinx in her spinal cord, her 2D vision and the brain damage in her right brain due to a bleed at birth and you have BIG mess to clean up.  (And this doesn’t even take into account my other two children and their health issues.)

So now you see why there is little time for anything other than understanding what is ailing my child and how to fix it.  Because not fixing it has never been an option.  Letting it just be autism and treating with a behavioral plan is not an option.  Because in truth, autism is really just a bunch of medical problems that are unaddressed.  Autism is toxicity.  Autism is a sick GI tract.  Autism is food sensitivities.  Autism is unbalanced Th1 & Th2.  Autism is low glutathione.  Autism is parasites.  Autism can even be thyroid dysfunction.  And Autism is other things that are waiting to be studied and discovered.  Autism is a complex illness and needs to be treated as such. 

Now I know better.  I know that Autism is NOT a psychological disorder, as many would have you believe.  It is an immunological, metabolic and neurological disorder.  And I will never stop asking questions. 

Curing Chronic Canker Sores with a Necklace

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In my blog, I usually write about my eldest daughter, but today I would like to share our agonizing journey in healing my husband’s chronic canker sores. 

My husband has always suffered from canker sores, but in recent years they have progressively gotten worse.  Years back, we changed his toothpaste to one without SLS (Sodium Lauryl Sulfate) and that seemed to keep them at bay for a while.  He was pleased with the results until they started coming back….this time with a vengeance.  He would get more than one at a time (sometimes up to six at once), suffer through their painful two week cycle of healing only to have them re-emerge a week or two later.  It was making him miserable!  Living in pain is no fun and eating which once was enjoyable was no longer. 

I am the designated healer of the family and I took to my new job of healing these sores quickly.  (Nobody wants a grumpy man around!)   He was told by his dental hygienist that it is a Lysine deficiency.  L-Lysine is an amino acid that is not produced in the human body but can be obtained from protein, legumes, wheat germ and dairy products.  So off I went to get a high quality L-Lysine supplement which he took religiously.  NO RESULTS.  So I bought him a combination amino acid supplement which he took after working out to replenish his body.  NO RESULTS. 

Next, I read that it may be due to celiac disease, so he went off gluten for a month.  NO RESULTS.  So we had him tested for food sensitivities.  Turned out, he is extremely sensitive to dairy.  When you have a food sensitivity, it causes inflammation in the body.  I was sure I had it.  This had to be it!  But he has been off dairy for six months, and STILL NO RESULTS. 

Next, I read it could be a sign of candida overgrowth.  This sounded VERY familiar.  My eldest daughter suffers from this.  So I started my husband on probiotics and kept his sugar levels down and started him on 5000 mg of a quality garlic supplement per day.  STILL NO RESULTS. 

He also takes a quality Omega 3 supplement to make sure he has proper essential fatty acids and a zinc supplement to keep his immune system strong.  But neither has worked for his canker sores.  I feed the family, so I know he eats all natural, whole foods with no hydrogenated oils or additives.  I was stuck and he was still suffering.

Finally, I caved and sent him to an integrative medicine doctor.  She said his canker sores are simply due to the Herpes Virus and sent him home with a prescription for Valacyclovir which he was to take twice per day for the rest of his life.  What?  I asked him….”Did she even test you for Herpes?”  So at my insistence (and my husband’s…he didn’t want to take it either), she ordered the Herpes test, saying it was completely unnecessary.  As I suspected…..It was negative.  So the doctor called the house and talked to me about her surprise and shock that his test was negative.  I explained to her that most cases of canker sores are not Herpes related, but instead, related to a food sensitivity, an autoimmune disease like celiac, overgrowth of candida or simply pH levels in the body are off.  As I listened to her amazement of all my research on the subject, I was listening to myself speak too.  I am used to doctors being wrong and just writing a prescription without trying to find the real cause…but I was realizing that I had missed something.  I had treated all the above except his pH levels.  The doctor told me that she would continue to do some homework on canker sores (I have yet to hear back from her) and hung up.  And I got to work.

I started researching balancing pH levels.  I learned as much as I could.  Knowing his diet was already pretty darn good I finally came across Hazelwood.  Hazelwood is an alkaline wood and has the natural property of absorbing and neutralizing the body's acidity through contact with the skin.  I figured it was worth a try.  After all, we were now officially desperate.  I ordered him a Hazelwood necklace (with amber beads which can help the immune system and also relieve pain) from Canada where Hazelwood Trees are indigenous.  It was his Father’s Day present. 

Normally he scoffs at jewelry but he was game.  I think he thought the idea of a necklace helping his canker sores was bit silly, but he knows my passion for natural healing and put it on to show the kids.  Then he forgot about it.  Until about three hours later when he said, “I feel really tired and weak and I have this acidic taste in my mouth.  Do you feel okay?”  I told him I was and then he realized it could be the necklace he was wearing that was drawing out the acid.  He had one current canker sore that was on the mend and a new one emerging.  He asked me for clarification on how these necklaces work because he was officially freaked out that a necklace could be making him feel this way.  He rested and then took a shower and about 5-6 hours later was feeling better.  He wore the necklace all day and through the night. 

The next morning he awoke to say, “My mouth feels very dry this morning and it feels oddly tingly.  I also have several little bumps all over my mouth, like I am about to have an explosion of new canker sores.”  He was convinced enough to wear his new necklace to work and let it do it’s job.  Later that day, the dryness went away but the little bumps were still there.  The next day, the little bumps were gone.  And so was his emerging canker sore.  Hmmmm….Can we be on to something?  I think so. 

He is officially happy because he is not in constant pain.  I will be sure to post an update in a few weeks to tell you his progress with the hazelwood. 

Happy Healing!

UPDATE #1 - Still canker sore free at one week into wearing it.

UPDATE #2 - He is now 2 months into wearing the necklace.   Although it has not been perfect, it has certainly been a marked improvement.  He has gotten a few canker sores, but they have not been multiple ones at a time, and they have healed faster.  Until this past week, when suddenly, he got 3 at once and another one on the way.  He took off the necklace and inspected it.  Sure enough, the hazelwood was shrunken and darker on the inside.  We compared it to our son's who also wears his everyday for teething.  Our son's still looked almost new.

So, now we know that the necklace was indeed absorbing his acid and my husband needed a new one.  My husband changed out his worn necklace with mine which I rarely wear.  His 4th canker sore has not progressed any further in a few days and seems to be waning.  I will be ordering him another hazelwood necklace of his own and hopefully, he will not go through subsequent ones so quickly.

UPDATE #3 - He is now 3 months into wearing his necklace.  He is on his second one.  The new necklace is working well, but it has not eliminated the problem completely as there is another canker emerging now.  So today I sent my husband to a chiro & kinesiologist who found that my husband has an IgA food allergy to corn and removing corn will likely get rid of the canker sores completely.  We shall see.....we will start today.  I will keep you posted.

UPDATE #4 - He is about 8 months into wearing his necklace and yes, he still wears it.  Eliminating corn did seem to help, but not fully.  He still gets canker sores every so often.  We can usually trace it to eating out and ingesting some food that likely had HFCS.  Corn syrup is HARD to avoid when you eat out!  The necklace still seems to help.  And he has now been through several.  He averages one every 2 months or so.  After that, the hazelwood is shriveled up and very dark on the inside indicating it has absorbed lots of acid.   

My favorite improvements seen with the Brain Balance Program

I met with the doctor at Brain Balance yesterday to go over my daughter’s final results.  After six months of the program, the doctor had many technical things to tell me about Marley’s improvements…but for me, while all that stuff is really awesome to see on paper, what we are seeing at home means the most. 

When Marley started out in the program, she was considered a “moderate functioning” nine year old girl with autism.  She was in a self-contained classroom at her elementary school.  Her level of anxiety, which stemmed from sensory overload, kept her out of a mainstream classroom.  In fact, she would kick and scream to leave the mainstream classroom after only about ten minutes.  And sometimes she would just up and leave the mainstream classroom by herself.  Her way of telling us…this is way too much for my nervous system to handle. 

And now, just a short six months later, here is a list of her functional improvements, which are my personal favorites:

1.  She occupies herself without a television or computer.  Before the program, her life revolved around waiting and longing for TV time or even more cherished, computer time.  If she wasn’t doing one of these things, she was begging me for it.  She never wanted to go outside to play.  Even if I was taking her siblings.  She would play games with me inside, but only if I sat down with her to do it.  She needed my undivided attention which is hard when you are the mom of three.  Now, I will walk into the room to find she and her sister playing a board game.  Or having a princess tea party.  Or playing a game of make believe.  Or even interacting with her 22 month old brother whom she formerly ignored.  Now she gets a kick out of him.  She tells him jokes and laughs and then he laughs when he sees her laugh.  It’s hysterical. 

But her favorite pastime has become reading.  Before we started Brain Balance she did not have the confidence to read a chapter book by herself.  But once she started, we couldn’t stop her.  She has found a love for books which is immense.  When I can’t find her, I know to go to our bookshelves and I will find her reading a book with her headphones on.  Listening to music and reading a book at the same time.  (Sometimes it’s even the Brain Balance music which she listens to without my prompting.)

2.  She is being mainstreamed next Fall for third grade.  This awesome news came in the fifth month of the program.  See my post titled, “I Think I can.  I Think I Can.” for more on this story.  But needless to say, this one was huge for us.  My goal has always been to get her mainstreamed but in the beginning of the school year, it seemed that dream was slipping away.  Now…it is a reality. 

3.  She has a new ability to transition without adverse behaviors.  For the last month of second grade, she was fully integrated into the mainstream classroom and did very well.  She actually enjoyed it.  At the end of the school year, there was a second grade carnival that Marley was looking forward to.  But that day it rained.  And the carnival needed to be moved inside.  So we started the day with a change in plans, which had always been so hard for my daughter to handle.  But she rolled with it.  My fear didn’t end there.  That day, she would also have to face a change in regular schedule, an echoing loudness in the atrium which was almost deafening,  face painting which she had never allowed before, new rules for lunch, new foods for lunch, hanging out with new kids from the other second grade classrooms and more.  So how did it go?  The teacher called me.  I saw her number on the caller ID and my heart dropped.  Would I have to go pick her up?  No.  The teacher called to say she was doing wonderfully.  Much better than they expected.  She was happy and having her lunch with new kids and getting her face painted.  I teared up.  There was no reason to worry.  Now there’s a new feeling for me.

4.  Her independence has grown.  This was one of the very last things to fall into place.  We got this in the sixth month of Brain Balance.  She now takes pride in doing things herself and she has a few chores that she alone is responsible for.  Her teacher had warned me that this was going to be a big part of third grade and we were going to have to work on this.  Then just a few short weeks later, I got a note home from her saying that Marley is becoming very independent in the classroom.  (This was a child that just 6 short months ago had to be walked to her mainstream class if she went.)

5.  She has a willingness to try new things.  She was always stuck in rut…likely out of fear of her sensory system being overwhelmed.  But now, she will try new activities.  She is even excited to go new places and do new things.  Today, she rode a scooter that her sister has “owned” for the last six months.  And not just once.  They scootered away for over an hour.  And loved every minute of it!  

6.  Lastly, I can breathe.  My anxiety level is down enormously.  People who don’t live with autism don’t quite realize that the parents live in fight or flight mode.  You have to be ready to leave a party in an instant or leave a cart of groceries because your child is melting down.  You have enormous strength because you have to be able to pick up a screaming child and buckle them into the van.  And after a while, you just give up and don’t take the child anymore.  And everybody suffers.  The siblings who have to witness it.  The child who eventually misses out on things for fear of the unknown and the parents who adapt to living in a constant state of panic. 

But we are in a new place.  We are happier.  Not just Marley, but all of us. I take my girls to the grocery store each week.  Without fear of meltdowns.  Without fear that if I say, “no…we can’t buy that”, it will mean screaming until I give in.  And let me tell you….this alone made the Brain Balance experience worth every penny!  I never knew if I would see the other side. You know… how normal people live.  But I am capturing glimpses and it is heavenly!