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!    

To parents of a newly diagnosed child

In this journey of healing autism, I have met some absolutely incredible people.  These are the parents of children with autism.  They are a brave, determined and educated lot.  And they never fail to amaze me with their strength and willingness to do anything for their children.  Since my journey with my daughter began, I have met with several (probably over one hundred) newly diagnosed families to talk to them about my experiences with Marley.  In our conversations, there are always some overriding themes.  They always want to know what they should focus on with their child.  In my opinion, there are six points to cover.

Support:

This includes spousal or significant other support and other parent support.  For the significant other in your life – be kind to one another.  Everyone reacts to this news differently.  Life is hard enough right now without being at odds with each other.  Respect the others person’s view and try to use kind words when communicating.  If you have a strong relationship, it can pull you through the hardest of times. 

As for other parents—this is very important.  I personally put this off for the longest time, throwing myself into my daughter’s therapies and everything I thought she needed.  But this was a mistake because the best knowledge I gained about autism was from other parents.  Parents who have been in the trenches and witnessed what worked for their child.  You certainly won’t get it from most doctors.  However, other parents will give you the best recommendations for the best doctors.  They will tell you the truth about the good, bad and the ugly.  And the best part is…they understand.  They have lived it.  There is no judgment there.  They have nothing to gain other than helping another parent because they have been there too.  So join the local Autism Chapter.  Go to local meeting.  And my personal favorite….network through social media.  Facebook is my favorite place to ask my local and national autism friends about the latest treatment, ailment or behavior.  

Find a Good Doctor:

I have been to my share of stinky doctors with my daughter.  But every once in a while, you run into a really good one.  Most of these doctors are DAN! (Defeat Autism Now) doctors.  DAN! doctors focus mainly on the true underlying cause of the autism-like behaviors.  Unlike a traditional pediatric developmental pediatrician, they are not interested in diagnosing your child.  Only seeing the symptoms of the child and what medical problems could be causing these behaviors.  This involves lots of blood work and testing, but it well worth it. 

One way to find a great DAN! Doctor is by going to an Autism One conference.  They are held annually in Chicago.  I have personally been to several DAN! conferences, a NAA (National Autism Association) conference and an Autism One conference.  They were all wonderful but the Autism One conference had the best selection of presentations in a warm, supportive environment.

Find the underlying medical problem:

Children with autism have several medical problems that go undiagnosed and untreated simply because they have an “autism” diagnosis.  The diagnosis is almost used as an excuse to not treat the child’s true medical problems.  ASD kids can suffer from seizures, asthma, allergies, GI problems, food sensitivities, mitochondrial dysfunction, MTHFR gene mutation, toxicity, oxidative stress, low glutathione, vitamin deficiencies and so many others.  Finding out your child’s true medical problems and treating them helps to alleviate the autistic symptoms.  The key to finding these medical problems lies in finding a good DAN! doctor.   

Diet change is a huge part of finding the underlying medical problem.  It must not be dismissed as it is critical to at least try diet alterations.  They can be life-changing for some children.  

Therapy:

Occupational Therapy, especially sensory integration therapy, is crucial in teaching your child to deal with real world obstacles.  It will either “sensitize” or “desensitize” them to make things more bearable in their world.  Behaviors change and children can find coping mechanisms that help them deal with overwhelming situations.  And of course, a great speech therapist is a MUST.  We love ours!!  She has been with us for 8 years.

Vaccines:

This, of course, is a controversial one.  And it is not a topic I take lightly.  But it is my true belief after talking to so many parents, and witnessing it myself with my own kids, that too many vaccines cause a toxic overload in our kids.  I absolutely do NOT want any kids to get sick.  But it seems to me that they are already ARE sick.  So if your child has a recent diagnosis of autism, I would recommend stopping vaccinations.  I am NOT a doctor.  I am a mom.  And it is my personal belief that continued vaccination will only make the child worse.  Enough said.

Get to work:

Be good to yourself.  Let yourself be scared, sad, whatever…then get over it because there is work to be done.  Read everything you can get your hands on.  Always consider the source.  Do they have something to gain?  Go to pubmed and do your own homework.  You are your child’s best advocate.  You know your child best.  Do not believe a doctor that says there is no hope.  Do not believe a doctor that says there is no treatment.  Do not believe a doctor that says there is no chance at recovery.  Because I am here to tell you that recovery is real.  It does happen.  But it takes a lot of work.  A lot of dedication.  A lot of love.  And you can do it.  I know you can.

Best of Luck as you embark on this journey of healing.  Please know I am here cheering you on!

My Beef with Autism Speaks

Some people find it hard to believe that I…a huge autism advocate…am not on board with Autism Speaks and their initiative.  This has been a long time in the making.  In the beginning, I was all about anything autism.  After all, they have our best interests at heart, right?  But the more I learned, the more I realized they do not.

But ever the optimist in trying to persuade others that our ASD kids are truly sick, and we need to promote wellness first and foremost, I attended an Autism Speaks Community Forum where the regional director and the North & South Carolina director came in to tell us about what they do and to ask us what we want from them.  “Here is your chance”, said my husband. “Go and tell them what you want.  How else will they know?” he persuaded me. 

So off I went, to speak my peace.  That we need studies of vaccinated vs. unvaccinated kids, we need biomedical research, and we need help because our kids are sick. The ladies from Autism Speaks were very nice.  They were compassionate and understanding, but neither has a child on the spectrum.  And neither really has a clue about what is going on in our children’s little bodies.  It is probably not their fault.  I have lived and breathed this stuff for seven years.  I read daily about cutting edge treatments.  I have to, if I am going to give my daughter the chance to heal.  I consider it my job.  The ladies at Autism Speaks are too busy coordinating walks and wearing their puzzle piece pins to get a chance to really find out what ails our children. 

As I sat there during their presentation talking about  “success stories”, I nearly fell out of my chair when I heard the AS representative say, that a mom volunteered her son for an autism medication study and that medication worked well for her son…so wasn’t that just great?  It made me want to vomit.  How is it great that a mom is putting toxins in the form of medication into her already toxic child to cover up the symptoms of Autism but not really figure out what is CAUSING these behaviors.  And it is a new medication…no studies for side effects, no idea of what the long term effects will be.   But okay…as long as my kid stops having meltdowns, who cares how we get there, right? 

Then there was a question about the science (from someone other than me) and the other Autism Speaks lady spoke up and said “Well, we recently appointed a former scientist at Pfizer to help with all that so it is really great…”  REALLY?  That is good?  I consider that a huge conflict of interest.  But then again, when you are an organization that lists the TWO interventions for autism as behavioral therapy and/or medication, I guess you need a pharmaceutical insider to promote the anti-psychotic medications for our toxic kids.  See:  http://www.autismspeaks.org/what-autism/treatment .  It just feels so wrong.  To appoint a big pharma insider to the AS board when so many parents feel like it was big pharma that took our children away from us. 

In defense of these AS ladies, one of them called me the next day to speak more about my qualms with Autism Speaks and was genuinely concerned.  She is a very good lady.  She just has a lot to learn.  She asked me if I have spoken to Geri Dawson, Autism Speaks Chief Science Officer, about my science questions.  I didn’t have the heart to tell her that just last year, her very highly paid chief science officer admitted in public that she had no idea about the role of glutathione in autism.  Seriously?  I am a mom and I have known about this for years.  It doesn’t help that AS even funded one of the studies done on this and still she didn’t know.  See:  http://adventuresinautism.blogspot.com/2011/11/does-geri-dawson-know-what-glutathone.html  .  Then the lady said to me that she will e-mail Geri Dawson my question about doing a study of vaccinated vs unvaccinated kids to show the real dangers of our vaccination program in the US and I thought to myself…good for you.  I’m glad you are going to ask her.  Then you will see where she stands.  Because she doesn’t stand for my kid.

My last request to this very kind lady from Autism Speaks was for her to attend an Autism One Conference held each year in Chicago.  A place where parents go to learn about methylation cycles, problems with sulfation in their children’s bodies, oxidative stress, toxicity, food allergies and sensitivities and the gut brain connection.  To learn how to heal our very sick children.  I am a realist.  I know Geri Dawson would not be caught dead there…although it is the first place she should be every year.  It is the place where parents go to get hope.  And my family is living proof that hope is real.  My daughter is recovering…slowly but surely.  Without either of Autism Speaks’ recommended treatments…behavioral therapy or medication.  Because we are healing her from the inside out.  Dealing with the true causes of her disorder.  In my house, autism speaks the truth.  Our kids are sick, and they need true healing.  

I truly hope that one day, Autism Speaks will wake up to the reality that we are losing our kids and medication is not the answer.  After all, AS was formed because one little boy, Christian Wright, regressed into autism after his vaccinations.  Just ask his mother.  

 

Tribute to an autism dad

There is just something special about the father of a special needs child.  

I remember being newly married to my husband and negotiating with him as to when to have our first baby.  It went something like this:

Me: “I want to have my first baby before I’m 30.” 

Him: “I just want to see how it goes and enjoy life for a while.” 

Me:  “Before I’m 30.” 

Him:  “How about we try in five years?’ 

Me: “Two years”. 

Him: “Well, I am not going to make any promises, but we can settle on three years for now.” 

So indeed, 3 years later, I was pregnant and I had my first baby at 29.  Life was to be spectacular.  I had a great husband.  We had a cute little house in a great city.  I was in love.  What could go wrong?  Such is the thinking of a 29 year old. 

I always loved my husband.  Dearly.  But I never really needed him until we had Marley.  Everything changed in an instant.  The blows just kept coming.  She was premature.  She had a bout of apnea.  She was in the NICU for a month.  She was diagnosed with a severe brain bleed.  I could hardly breathe I was so scared.  Then the therapies started.  And the medical tests. The MRIs.  The EEGs.  And the list goes on…

And there was a new part of my husband emerging.  This man held me up when I could barely stand.  He let me cry on his shoulder endlessly.  He kept positive when all could talk about was how scared I was.  He reminded me of how much we love her and how it would get us through.  I truly don’t know how he tolerated me in those early years.  But the truth is that, things would get much worse before they would get better. 

As Marley grew, we were starting to feel a bit better because she was an adorable, sweet, attentive, active baby.  But at the same time, her sensory system was in overdrive.  She didn’t like to be held.  She barely slept.  She always had gastric distress.  We found out at 7 months old, that she had a severe allergy to dairy and eggs.  We did everything we could think of to help her.  So we plugged along, enjoying this sweet, attentive child until everything changed at about 18 months old.  

She received her shots…and well, you know the story.  Downhill from there.  We were told to get her into the TEACCH program.  Get her started in OT, in speech therapy, in developmental therapy.  She has a pervasive developmental delay.   (Now, we know that was just code for Autism.)  And again…here came the tears.  The dread.  The fear. 

I read about how usually it is the mom who has to convince the dad that something is wrong, and the child needs to start therapy.  But my husband…ever the realist…was right on board.  “We will get her whatever she needs.”  Then he would smile and say…”Just look at her….she is beautiful.  She will have it easier in life than you think.”  I know he was doing whatever he could to make me not hurt so badly. 

He was then and still is a wonderful daddy.  He played with her.  He danced with her.  He read her stories.  He gave her baths.  He tucked her in at night.  (over and over and over again.)  His patience was unwavering.  

And he did the not so pleasant things too.  The things that come with being an autism parent.  The parent of a sick child.  He changed lord knows how many horribly messy diapers.  He cleaned the poop off the walls.  He held her down when she tantrumed for over an hour at a time.   Several times a day.  And in his rare spare moments, he helped me research what to do about all of it.  He was the one who found the DAN! (Defeat Autism Now!) website and the news about their annual conferences..  And when I said, “I don’t know if we can afford for me to go”, his response was “I don’t think we can afford for you NOT to go.” 

My love for my husband was growing, as was my determination to heal my child.  I had a partner in all things autism.  He would not let me do it alone.  If I ever doubted, he would bring me right back to reality. And when I wanted to introduce yet ANOTHER biomedical intervention, he was right there to support me.  He had my back.  The cost was no matter.  He would do whatever it took to bring her back to us.  And his positive outlook is something I still look forward to each day. 

We have since had two more children together.  Our children bind us together.  They make us realize what is important in this world.  They make us laugh.  They make us cry.  They teach us daily.  They force us to be patient.  And they make us shake our head in disbelief sometimes.    

Today, Marley is thriving.  As are her sister and brother.  We do not live a typical life.  We have special diets and daily supplements and therapies galore.  But we are fighters.  (Each in our own way.) And we know there will be more battles to fight.  But we will do it together. 

So here’s to Chris…We love you.  And we need you.  Thank you for everything you do. 

Like I said, there is just something special about the father of a special needs child.