Olivia's journey has been rough - to say the least. Born perfectly healthy, her declining health since the dreaded MMR shot has always been a mystery - at least to those in the medical community. Her story briefly -

At 18-months she developed little "shaking spells" in the middle of the night. The Neurologist called them "Generalized Myoclonic Seizures". In many cases this can be the beginning of a degenerative condition, but month after month Olivia “defied” this inaccurate diagnosis by continuing to develop normally. Several months later we were instructed to give the vaccinations we had put off. Within a couple weeks these little "shakes" became large jerks that would catapult her to the floor. She stopped talking, stopped responding to our voice and appeared to enter her own little world. The seizures continued to change. They soon became "drop" seizures and would come on with no warning and she would fall or crash into whatever was in front or below her. They continued to worsen into classic tonic clonic seizures that would last anywhere between 10 to 40 seconds.

Recently, we have made the decision to reevaluate the direction of the care she has received and go a different route. Complexity was the word often used to describe Olivia's condition. We've done our due diligence.....we tried all the medications, none worked. We tried the supplement route through a well-known clinic in Chicago.....nope, nothing. This blog will serve as an outlet for others to follow our next attempt at helping our darling girl. The route we have chosen is to put her on a medical diet called the Specific Carbohydrate Diet (SCD). The resource I will use is a protocol developed by Dr. Natasha Campbell-McBride. Her book is titled "Gut and Psychology Syndrome". It is a natural treatment for Autism, Depression, ADHD and it has had some success with uncontrolled seizures.

Our beautiful girl

Our beautiful girl

Unfortunately, we have been part of the growing Autism epidemic in the United States. According to the USA Centers for Disease Control (CDC) 1 out of 88 (as of 3/12) children are diagnosed in the autism spectrum and sadly these numbers are growing every day. As a parent to a severely autistic child who has weekly-uncontrolled seizures, the memory of her being "normal" has never been forgotten. The hope of helping, if not stopping her daily suffering has been an uphill journey.

Approaching her situation from a diet perspective is not an entirely new idea. Olivia was on a version of the SCD diet in 2005 with some success. The main difference between then and now is the knowledge base of Dr. McBride and her ability to share the wealth of information she personally gathered as she cured her own severely autistic child with the SCD diet.

This blog is really about our journey over the last 11 years. Although the focus is Olivia and her recovery, I will also include how this has affected our whole family and how we have dealt with this unexpected interruption in our lives. It is our story; therefore, the opinions expressed on this blog are mine alone. I am not advising and /or commenting on the effects of the treatment I am doing with Olivia for any other person. She is under the care of several amazing physicians and therapists and I follow their recommendations.

Although I have strong opinions on certain practices of the conventional medical community, I do respect and am thankful for the excellent emergency practices that literally saved Olivia's life. I, like many others, question the preventative and/or wellness approach offered by this institution. Alternative care has taught me so much about the power of your own immune system, and the tragedy that can follow when the immune system is damaged. Why these two worlds can't work together to shape and protect us all is a shame.

Hebrews 11:1 -

Now faith is confidence in what we hope for and assurance about what we do not see.

Have a question or comment for me?

If you have a question or comment for me feel free to leave it under the "comments" section on the bottom of each individual post. If you would like to leave a private comment you can email me at kellynjohnson94@gmail.com.

Sunday, July 1, 2012

Struggling faith

Courage doesn't always roar...
Sometimes courage is the quiet voice at the end of 
the day saying,"I will try again tomorrow" M.A. Radmacher

It's been a while - I know!  June was a crazy, icky month.

I think the end of June was the climax to a heavy, burdensome start to summer.  It really began with a disheartening meeting with school administrators on Friday, June 8th - literally the first day of summer.  What should have been a 15 minute meeting to discuss the final details of her move from the elementary school to the middle, soon became an hour and half of defensive lobbying for her right to stay in the "level" of classroom she was currently accustomed to.  This "administrator" felt her needs would be best served in a more "intensive" classroom with children confined to wheelchairs with high needs.  This is a classic example of people making decisions for another without a complete understanding of the whole situation.  This woman totally blew the seizure portion of Olivia's care into an unrecognizable animal that needed to be confined for supposed "safety" reasons.  I respectively waited, as she muddled and rambled through explanation after explanation of worrying about Olivia's care at 21, until I could no longer subject myself to what this woman was speaking over Olivia's life.  Seated along side Olivia's "core" team, the lovely women who have cared for Olivia for 7 years, I finally blew my top!  An hour and a half later, the paperwork was completed for her move to the school of my choice.  Later, I apologized to her teacher for my reaction, and to my surprise her team had gathered after the meeting and they all talked with excitement, seemingly impressed with my decision to stand up and stop the meeting's direction.

In addition to that POW WOW, the proclamation of my faith has been taking a silent beating.  Comments like, "oh, well, we think you should be realistic about how much Olivia could recover", spoken by a friend who frequently talks with others about the wonders and amazing miracles that can happen when you pray to God.  Seriously, isn't that what faith is? To believe in that "unseen"?  Where does the word "be realistic" get inserted?  What about Romans 8:24-25 :

"For in hope we are saved. But who hopes for what he already sees? However, we hope for something we have not yet seen, and we patiently wait for it.

Add to this, a hard month of taking her off a major supplement and I am certifiably crazy, or maybe just off my rocker (HA!) Sorry if I am a complainer!

I guess I didn't realize just how much I was struggling lately. Having a disabled child has it's financial pressures.  Treatments, supplements and expensive food top the list for financial burdens in an economy that has seen better days.  I am thankful for Marty's amazing ability to keep the finances rolling in ~ especially when it is extremely stressful at work.  Fear has a way of creeping in when financial uncertainties arise - don't you think?  :(  Big sad face that represents my fearful heart.  Certainly, I have been wrestling again in a way that is familiar, yet foreign to me.

Several Sunday's ago, I rolled out of bed and felt an immediate need to go to church. Olivia was up, so I had to get her stuff together and as always I was running out the door with a mere 5 minutes to spare.  Usually, when I run late Lauren will just come to "big kid" church with me, instead of going to children's church.  For some reason, on this particular day, she was adamant about going to children's church.  As I was finally seated, I made a big sigh and settled in.  The pastor's sermon was in a series called "APPS : powered by Proverbs".  He started with some really funny app jokes, but quickly moved into the main point of his sermon ------- Wisdom.  As I listened, I began to perk up and soon felt as though this sermon may have just been written for me and my recently acquired heavy heart.  He talked about Solomon - how, when asked by God what he would like, he chose wisdom on how to govern the people. Wisdom, the jewel I have been searching for.  The very thing I need in Olivia's situation.  I used to feel led.  I felt I was going somewhere.  Then, June rolled around, and nothing.  If you have checked my blog, my last entry was May 26th.  I felt like I lost that feeling of being led.....of knowing what to write, what to do next with Olivia.........and that familiar feeling of dread, of fear and hopelessness was present again.

The sermon opened my eyes to what could be my problem.  My heart had changed.  I was fearful (again?).  I apparently didn't trust God to take care of our financial situation (even though our past proves that he has over and over).  So, in a nutshell, I was overly focused on not wanting to lose the little bit of what we do have financially. There just seems to be obstacles, and then more obstacles.  The pastor talked about God giving wisdom to people who's greatest desire is for others. He asked, "Is it about you".  Solomon's heart was in the right place.  Mine, not so much.  I truly believe my faith was under attack and I was taken out by immense spiritual warfare.  I do not think I even knew I was going down.

It was communion that Sunday, and they had some special music.  One addition that stuck out for me was this beautiful young girl who played the violin.  For some reason, I just love the sound of a violin.  When Olivia was a baby, channel 2 had a special on young musicians and I remember seeing this beautiful girl with long blond hair playing the violin.  It may sound silly, but I thought that someday Olivia would do just that.  Seeing that young beauty and her violin on the Hosanna! stage brought me back to that earlier dream for Olivia.

As I looked up from the benediction my eyes rested on the group of prayer partners that had so graciously devoted their weekend to pray for others.  I was debating on whether I should go up or not? Do I have time with Olivia at home? Soon this questioning stream was cut off as I scanned the prayers partners....and my steps began as I spotted the angel that was put there for me - it was Jan!  She would soon be seeing me walking toward her in a desperate way, as I struggled to even say hi before I burst into tears.  I know she didn't know what to do.

I think she thought that something "serious" had happened to Olivia.  Finally, I was able to start talking with her, revealing what had just been revealed to me through the sermon.  She continued to lift my spirits until I told her my feelings about the violin dream.  She shifted gears and told me that Olivia will be playing the violin in heaven..........errrrk  wrong answer.  Again, I must remind myself that this jewel of wisdom, what He is teaching me is for me, not for others.  It would be easier if that were the case, but it isn't - it never has been.

She encouraged me to go home and stand in front of my bed and tell God that I trust Him with everything, that I trust He will catch me, and then fall back onto my bed.  I have to admit, when I finally did it, it did feel good.  She told me that the pastor met with the prayer partners on Friday evening and told them that he completely changed his original sermon - to the point that it did not match the sermon notes. It matched my needs perfectly!!! Thank You God!

So as I emerge from this darkness once again, I am overcome with thankfulness that God so patiently and graciously puts up with me.  That He alone can fill me back up with courage and suddenly I am brave again.  I feel as though I have humbly crawled back into his lap as he covers me with his Divine purpose for my life, if I can boldly claim it.  It reminds me of a song that currently resides in my head, the same lines repeating over and over:

Time stands still
beauty in all she is
I will be brave
I will not let anything
Take away
What's standing in front of me
Every breath
Every hour has come to this

One step closer

I have died everyday
waiting for you
Darlin' don't be afraid
I have loved you for a
Thousand years
I'll love you for a
Thousand more

I don't know if this song was written for two people in love, but how I hear it is a word from our loving Father who has indeed inspired me to continue to be brave in my beliefs of the precious gift awaiting my darling girl, and I will do so as long as He inspires me.

Thursday, June 14, 2012

Olivia & Lyme Disease - An unfortunate, inevitable diagnosis

I know what you are thinking.  Lyme disease? How on earth is this diagnosis possible? This kid really has bad luck ---- right? Luck definitely hasn't been on her side.

As I continue to learn how a normal little girl could essentially "fall apart" and completely lose her ability to talk, communicate and function as a human being, I continue to be amazed by the intricacies of the human body and their requirements for flawless function.

I first heard the words "Lyme Disease" as a diagnosis in May of 2010, and it was not for Olivia.  I had never thought of it, and neither had the doctors (both conventional and alternative).  What was even crazier was that I had never come across it in my research to find what went wrong and what could help. We have all heard about Lyme Disease in the news. I actually did know a child that had the disease, but in that instance he had those classic signs, mostly, I remember the severe joint pain.  He had to be around 7 or 8 and his legs hurt so bad he could hardly walk, all in a matter of weeks from the dreaded deer tick bite.  I think many of us think of Lyme disease as the debilitating joint pain with, of course,  the classic red bulls-eye rash that develops on the site.  What many people do not realize is that these classic cues to this disease only happens in 50% of the cases.  So, what's crazier is that 50% of people with Lyme disease have no idea that this opportunistic bacteria could be the cause of their health problems!

Neurological Lyme - no one really talks about the way this disease can effect people neurologically.  To many conventional doctors to  really "have" Lyme you must have the two major symptoms --- joint pain and a bulls-eye rash.  Not always, and what a shame, since the 50% that happen to go undiagnosed usually end up with some sort of chronic disease.

Neurological symptoms of Lyme disease are many and can vary from person to person.  These symptoms include:

Memory problems, poor reasoning, dyslexia, headaches, nerve pain, tremors, panic attacks, facial palsy, trouble swallowing, visual disturbance, mimic of neurological disorders such as MS or Parkinson's
In children -  behaviour changes, learning disabilities, headaches.

Other Lyme related illness'
Psychoses including hallucinations and delusions
Violent behaviour, irritability
Rage attacks/inability to control impulses/out of context crying spells
Anxiety/Panic attacks
Rapid mood swings that may mimic bipolar disorder
Obsessive-compulsive disorder (OCD)

With Olivia, I believe she was bit by a tick in the spring of 2005.  Out of no where, in 2005, she started having really bad headaches --- I mean really bad.  Walking, pacing, holding her head and crying,, sometimes screaming in pain. She had these debilitating headaches for a good year.  I had to give her ibuprofen and Tylenol every 4 hours and she still cried and held her head.  I took her to several doctors - even asked if they could be migraines but I was told over and over that people just don't have migraines every day like that.  She was in ABA therapy, progressing..... but then, all of a sudden she just spiraled down and lost everything.  The more I thought about it the more it made sense that Olivia could have contracted Lyme Disease.  The headaches just "started" one day --- and continued for what seemed like eternity.

When I first heard the diagnosis I admit I was skeptical.  On the long drive home from the doctor's office, I digested the information I learned from the doctor.  When I got home I hit the computer looking for any reputable resources and books to further my understanding.  This was just the beginning.  Confirmation after confirmation followed in the next several weeks.

A week later I had a college friend and her daughter over for lunch and she started telling me about a woman that used to sub for her (she is a teacher) that she reconnected with the last day of school.  When she saw her she asked where she had been.  "Oh Julie," the woman began.  "I think I have been to hell and back".  She went on to say that two years ago her 30 year old daughter was not feeling good --- they thought it was just the flu.  This flu just hung on, she felt as though she could not shake it.  About a year into it the mother asked the doctor to test her for Lyme disease --- it came back negative.  By April of this year the mother had to move in with the daughter because she could not even make it to the bathroom.  She was tested for everything under the sun and she progressively got worse.

Finally, she carried her daughter into the infectious disease department at Mayo and told them to figure out what was going on with her daughter.  She told them that she thought it was Lyme Disease, but she had several negative tests.  They just started treating her with the Lyme protocol and by June she able to walk normal!

Later that week, I dropped Olivia off at a babysitters house.  She told me of a friend of hers that had the infamous "bulls-eye rash", was treated with antibiotics but was never the same mentally.

In the last two years Olivia has acted like she has major joint pain/arthritis.  In fact, I remember my mom commenting that she walks like she's 70 years old.  Back when Olivia was five, we had to build a fence because Olivia would just take off and run ---- and boy could she run fast.  So fast, that if my mom was babysitting she could not catch her --- hence the fence:)

stimming ---- right on top of the mulch piles.  Since that time, Olivia could not keep weight on, she is so skinny --- which is another common characteristic of "chronic" Lyme disease.

I feel as though this may be another piece to her puzzle.  She was already immune compromised and at the time doctors did not test for Lyme disease like they do now, plus back then you were really only at risk and tested (so they thought) if you had the "bulls eye rash".

Minnesota ranks 8th in the nation for the number of Lyme cases.

We tested Olivia through the medical community - and it came back negative.  In the Lyme world that is of no surprise.  The medical profession uses a test called the ELISA test which is known to report false negatives.  And, as our doctor explained to me, unless you test within the first couple months of being exposed, the disease actually mutates and changes form so it no longer tests as an antibody in your blood.

We chose to take her to a Naturopathic doctor who specializes in Lyme Disease.  She ordered a more specialized test and a couple weeks later we got the results.  Olivia was POSITIVE for Lyme!  I knew something happened back in 2005.  The bad headaches came out of no where and she has continued to get worse and worse throughout the years.  2005 is when her seizures became big grand mal's  --- it's the year she was booted out of ABA ---- it was the year she started staying up all night, every other night.  In a nut shell she took a dive and I never knew why.

While talking with the Naturopath, she confirmed so many things, symptoms of Lyme disease that are soooooo Olivia  ------ like

Worsening seizures
Inability to gain and keep weight on
Losing her hair
Joint pain in her knees and ankles
Overwhelming fatigue and insomnia at the same time
Painful headaches
Weird breathing pattern that she developed a couple years ago

This bacteria wreaks havoc on your immune system. A weakened immune system isn't good for anyone, but for an epileptic it can be brutal.  Seizure thresholds are lowered when the body is sick, which generally results in more seizures.

Dr. W. Lee Cowden explains how he believes people get Lyme disease

In my opinion, Lyme disease is a condition that occurs because a person's total body load of toxins and other stressors has become conducive to the development of illness. As we go through life, we all accumulate a load of toxins from our environment.  That load includes chemical toxins, electromagnetic pollution, geopathic stress, heavy metals, as well as emotional traumas.   The sum total of all of these stressors finally creates a situation that makes a person susceptible to illness, so if that person gets bitten by a tick or mosquito that's carrying Lyme-related microbes, then it becomes easy for him/her to succumb to illness.

Dr. W. Lee Cowden is a board-certified cardiologist and specialist in Internal Medicine.  He has developed and refined treatment protocols for Lyme, cancer, autism, Parkinson's disease, fibromyalgia and chronic fatigue syndrome.  I enjoyed learning about the "beginning's" of the medical institution, starting way back with the "germ theory".  He explains:

Antoine Bechamp, was a contemporary of Louis Pasteur.  Bechamp said that when it comes to healing the body, the microorganisms are nothing, and that the body's environment, or terrain, is everything.  Pasteur, on the other hand, developed the germ theory, which is also called the pathogenic theory of medicine and which basically proposes that microorganisms are the cause of disease.  Bechamp was a very brilliant microbiologist, whereas Pasteur was a flamboyant chemist.  Even though Pasteur wasn't a microbiologist, he was more vocal and flamboyant, and his way of teaching practitioners at the time won out over Bechamp's.  On Pasteur's deathbed, he acknowledged that Bechamp was right in his theory and that he was wrong; however, by then it was too late, because Pasteur's ideas were already being put into medical literature and journals of the time.  Those ideas have been perpetuated in medicine to this day.

What's interesting is that the woman who developed the Specific Carbohydrate Diet (SCD), which is the basis of the GAPS protocol was a microbiologist, just like Antoine Bechamp.

In Olivia's case I tried many supplements, herbs and homeopathy - reaching out to the affordable treatment options offered in the alternative health arena.  But what I soon found was that the damage to her system was just too pervasive for a supplement or two to reverse.

I found Dr. McBride's opinion on Lyme very interesting.  She says:

Lyme disease is fashionable at the moment, as our medicine goes through fashions all the time; all sorts of problems are blamed on Lyme disease today.

Lyme disease is caused by bacteria of the family Borrelia which are transmitted by ticks. The natural hosts for ticks are wild animals, such as deer, squirrels, chipmunks, rabbits and other animals. Borrelia has been in existence for a long time, possibly longer than us, humans. Yet Lyme disease has become so common only recently despite the fact that contact with wild animals is very minimal in our modern urbanised populations. So, what happened? A very big thing happened in the recent few decades: our immune systems got compromised by our modern life-styles and the environment which we, humans, have created. A good demonstration of this is what is happening to the bee population in the
industrialised world: the bees are dying out. They are dying out from a couple of opportunistic infections, which they used to be resistant to only a few decades ago. Why? Because their immunity has been compromised by all the spraying of the countryside done by our modern agriculture. We, humans, are no different. When your immune system is not working properly, you become susceptible to all sorts of infections, which used to be harmless.

People who suffer from chronic fatigue, fibromyalgia, peripheral neuropathy, autoimmunity and other degenerative conditions, recently blamed on Lyme disease, are immune-compromised. The fact that Borrelia has been discovered by our science does not mean that it is the answer to these problems: when the immune system is disabled, all sorts of microbes can be at work, many of which we have not even discovered yet.  And indeed antibiotic treatment for Borrelia does not eradicate chronic degenerative
conditions, despite the fact that tests may show that this bacterium is gone. Very powerful antibiotics are used to treat Lyme disease, often intravenously and long-term. Antibiotics are not harmless! Healthy bodily flora is the most essential factor in keeping your immunity healthy. Antibiotics will destroy that factor very effectively, making your immune system even more disabled, making you even more vulnerable to Borrelia or any other pathogen.

So, if you suffer from a chronic degenerative condition and had a positive test for Lyme disease, don’t rush to have antibiotics. What you need to rush to do is to restore your immune system. Number one intervention is the food you eat! If you have digestivesymptoms, follow the GAPS Nutritional Protocol. If your digestion is OK, follow the Weston A Price-type diet. As your immune system starts working again, it will deal with Borrelia and lots of other microbes, which you don’t even need to know about. A good
percent of people, who test positive for Borrelia, have no symptoms and are healthy and well. Why? Because their immune systems are working properly! And make no mistake: well-functioning human immune system is infinitely cleverer, than any doctor or scientist!

What every one of us has to do is to find a balance, a harmony between the myriad of microbes living on us and inside us and our immune systems. So, focus on feeding, nourishing and nurturing your immune system, rather than killing,attacking or eradicating anything.

Her thoughts really line up with Olivia's journey.  Just like a small snowball let go at the top of a snowy hill, her condition started small but rolled and rolled out of control until it became bigger, more complex, and finally ---- out of control, much to big to be tamed by a "miracle" pill.

Something I find even more interesting is that Olivia finally did get that classic "bulls eye" rash, but not until I intervened with a radical switch in the foods that she was eating on a daily basis.  I may have mentioned earlier that I did have her on the SCD diet back in the winter of 2005, well, MY version of the SCD diet.  What I mean by this is that, I, like many parents in America believed that she, too, needed "treats" to feel good.  Why is it that as parents we feel bad if our kid doesn't have a sweet treat to enjoy?  Like we are depriving them of the good things in life to eat?  So, when she was on the diet she had plenty of nut muffins, fruit and vegetables, but none of the "mandatory" healing aids that are well described in the GAPS book.......namely chicken broth, fermented vegetables and homemade GAPS yogurt.  Is succumbing to that sweet tooth the only way to enjoy life?

Anyway, three weeks after I took Olivia off all grains and potatoes ------- WALLA she got the bulls eye!

The picture shows the first sign of the rash in the upper left frame.  In the following weeks, it spread out, and from the original bulls-eye small "shoots" went out, surrounding the circle.  From there, the "shoots" became small bulls-eyes of their own.  WOW is all I can say.  

I have learned that her getting the bulls-eye 6 years later happened because of the major shift I made in her diet.  More and more, people in the alternative health industry are talking about how grains and starchy foods cause inflammation to spread in a unhealthy body.  Taking Olivia off these grains and high starchy foods mobilized her immune system and it finally "recognized" the Lyme bacteria and set off the alarms (rash).  Getting the rash indicates a healthy system, unlike Olivia's which resulted in the organism spreading more and more, year after year.

Below is a news cast linking Lyme disease to autism.  If you are currently listening to the music on my blog, go to the grey bar at the bottom of the page and click on the "pause" button to listen to the following news video:

Autism linked to Lyme Disease

Now, take a look at the following video of Olivia - do you see the similarities between her and Mary Hendricks?


"We must never forget that what the patient takes beyond his ability to digest does harm." Dr. Samuel Gee

Saturday, May 26, 2012

More on seizures. It was an injury - not a genetic weakness.

injury /in·ju·ry/ (in´jer-e) wound or trauma; harm or hurt; usually applied to damage inflicted on the body by an external force.

I know what you are thinking..... How can seizures be a result of a damaged gut?

Abnormal gut flora, is present in anyone with digestive problems.  It starts out small, as many things do.  Sweet and starchy food feed pathogenic microbes, which in turn allows them to grow in number and damage the gut lining.  As I have learned, this damage is even escalated with antibiotic use.  Think Candida on steroids! Olivia had monthly ear infections which were treated with monthly doses of antibiotics.  In our modern day society (especially in the late 90's), ear infections = antibiotics. Antibiotics devastate the beneficial bacteria we all have in our bodies and it is not limited to our gut.  They change bacteria, viruses and fungi from benign to pathogenic, which allows them to cause disease. As I read Dr. McBride's information on antibiotics, I was shocked to read that they actually damage our immune system, which in turn makes us more vulnerable to infections, thus creating the "vicious cycle" of more antibiotics and more infections. Obviously there is a place for antibiotics, they can be a life saving drug. What about finding out WHY a child is getting ear infections on a monthly basis instead? Genius!

Dr. McBride says:
Proliferating pathogens in the gut start producing large amounts of toxins, which absorb through the damaged gut wall into the bloodstream and get carried to the brain. As the gut function deteriorates, the foods do not get the chance to be digested properly before they absorb through the damaged gut wall.  Once absorbed into the blood, these partially digested foods trigger very complex immune reactions (called food allergy or intolerance) which are capable of initiating seizures.  The combination of toxins and partially digested foods (being dealt with by the immune system) flowing from the gut to the brain, cause the epileptic activity.

This small paragraph does my soul a world of good! As I have mentioned in earlier posts, this is what happened with Olivia !!! At the beginning of this journey, and with the first appointment with an alternative doctor we ran all the tests that were suggested to run.  Allergy tests (IGE & IGG) included.  The results of these tests were good - she was only allergic to mold (IGE), and a couple foods on the (IGG) form. For those of you not familiar with allergy testing - IGE indicates a "true" allergy, which usually results in an immediate reaction.  IGG testing, on the other hand, is not a supported test in most conventional allergy clinics.  IGG is a "delayed" allergy reaction.  This type of allergy has been explained by several doctors as an allergy caused by the dreaded "leaky" or damaged gut (which Dr. McBride refers to in the above paragraph). IGG reactions are not immediate, but delayed, making them almost impossible to detect. Different foods break down at different speeds, causing different toxic reactions depending upon the food and your personal body chemistry.

Dr. McBride talks about one child's downward spiral, which ended with the development of a seizure disorder.  He was a normal kid, who at two was mentally and physically advanced for his age, was bright and well-coordinated. His  digestion was vulnerable - irregular stools and bloating. After he turned two, he began limiting his diet to sweet and starchy foods.  His digestion worsened, stools looked green and smelled of rotten fish. His outward appearance became thin, very pale with dark circles under his eyes.  By three he was lining up toys, becoming distant and became obsessed with things.  Just six months later he became clumsy and hyperactive, continuing to limit what he would eat. Then he started having absence seizures, he would roll his eyes up for a few seconds, then become unresponsive. Shortly thereafter, he had his first grand mal seizure.  Regression in his learning ability and development followed with all kinds of problems from the medication.  He started the GAPS diet, including the Introduction portion and was able to wean off the medications and the seizures reduced down to one or two very mild absences per week.

I love reading stories like this! I felt as though I was reading Olivia's story from the early years. I will never forget when she was going #2 15-20 times per day.  The smell did not smell human.  I know that because I am only giving you bits and pieces of her story at a time it may seem as though I sat back and watched these things develop in my child.  That is far from the truth.  I did what most moms would do.  I took her to my pediatrician (foul diaper in hand), who then referred me to a Pediatric Gastroenterologist.  I will never forget this appointment. Just thinking about it causes tears to well up in my eyes.  "No", he said, very confidently, "your daughter's apparent regression is not caused by these digestive problems." I explained the number of times she went #2 throughout the day, and pleaded with him to look at the contents of the diaper I conveniently had in my bag.  But he refused.  I really don't think he believed me.  I mean, who goes that much? He ordered a basic smear test, which eventually came back saying "conclusively" that everything was normal and told me there was nothing he could do.  Sadly, those were my trusting days, so I believed him.

Well, not surprisingly, one year later we repeated the allergy tests and within that year she had positive IGG tests for almost every single food! Her injured gut, which was first indicated by her foul stools and multiple stools/day, was worsening.  The damage was deep, and the "experts" of the day were blatantly uninformed, usually by choice.  This apparently was not taught when he went to school, therefore it did not exist.

Unfortunately, in Olivia's case the "injury" wasn't just once.  The second injury to her fragile immune system was the MMR vaccination (she is a registered VAERS child).

This song has been repeating itself in my head since I sat down to write this post:

Can't you see everything happens for a reason
There's a time, there's a place for every season
He knows what's best for you
So don't be afraid.

The same God who was with you then is with you now
The same God that led you in, will lead you out
So take all the fear and doubt
Go on and lay them down
The same God, the same God is with you now.

Just keep holding on
Oh keep holding on     (The Same God - Newsong)

That's my cue - I will keep holding on ;)

Monday, May 21, 2012

I don't despise small beginnings - She has gained 10 pounds!!!

Olivia has officially made it to the 70's - weight wise that is!  In the past, she consistently weighed between 62-64 pounds (since 2006).  This apparent stunted growth, or maybe even "failure to thrive" was, at times very frustrating.  Prior to 2006, she had always been in the 50% percentile at well child checks.

She has always had an amazing diet.  Although she was on a gluten free/casein free diet, she had an abundance of gluten free grains, fruits and vegetables, organic meat.  If someone witnessed how much food was going into her, they would usually comment that they wouldn't be able to eat that much in one sitting!

What I didn't realize then, was that it was all going in, and quickly coming out.  She was going #2 all day long.  The damage to her digestive tract was so severe that her body was unable to obtain the nutrients from the quality food she was eating.

I didn't know that you do not have to be thin to have a nutritional deficiency, but it sure does make sense. If an overweight child starts this diet, they will lose weight and gradually show the "masked" nutritional deficiency.

Dr. McBride explains that by following the GAPS nutritional protocol your digestive system starts absorbing foods properly and nourishing you; you will start building dense bones, healthy muscles and other tissues and organs and gaining weight as a result.  This is exactly what is happening with Olivia.  She is much "sturdier", less fragile looking.  Her limbs feel heavier, and her skinny little bird legs are finally looking a wee bit heavier. This is no coincidence!

I remember when she first started the GAPS intro diet, there were many "comments" like "what's with all the soup?"! I am sure people who have never heard of this diet may have questioned my choice of food for my VERY thin little girl.  To an outsider's view, the soup probably didn't look substantial enough for a sickly child. All I can say is looks can be deceiving!  You know when people are shocked when all of a sudden it takes 2, maybe three people to carry this 13 year old after a seizure, when in the past one was sufficient!

I am not being political in the least when I quote President Obama's statement from 2005.

"If you're walking down the right path and you're willing to keep walking, eventually you make progress."

I have walked down many treatment paths with Olivia in this journey ---- the drug path, the supplement path, the homeopathy path, the ABA path.   I know now that they were the wrong paths and that is exactly why I didn't make any progress.  This path, using food as medicine, not only feels right, it is right.  It's  undeniable progress - she was unable to gain weight for years - withing 5 months on the GAPS diet and she's not just a couple pounds heavier - but 10!!! Praise God!!

September 2011

May 2012

"Do not despise these small beginnings, for the Lord rejoices to see the work begin." Zechariah 4:10 

 I googled this verse for more understanding and started reading an entry from J.M. Farro's blog.  He says:

Several years ago, I read a true story about the humble beginnings of one of the most famous composers of all time. It told of how this composer rose to greatness, and ended up touching countless lives, by simply preparing music for the Sunday services at his church each week. At the time that I read this amazing story, I was feeling very discouraged and disheartened in my work for the Lord. Reading about this man's devotion and dedication inspired me and encouraged my heart. I had been laboring in the Lord's name for many years, and had received little recognition or reward. I often asked myself questions like, "Where are the blessings? Where are my rewards?" I eventually discovered that the thing that helped me most was to shift my focus from, "What's in it for me?" to "How can I help others?"

The Bible clearly states that God's people will be richly rewarded for loving and serving Him. But it doesn't say WHEN we will be rewarded, or even how. One reason for this is that God doesn't want us focusing on our rewards, but on doing the work He has assigned us to do while we're on this earth. And He expects us to perform our work faithfully. Jesus said, "He who is faithful in a very little thing is faithful also in much." (Luke 16:10 NASB) Before the Lord entrusts us with big assignments, He tests us in smaller ones. Some people aren't interested in doing seemingly insignificant tasks for God. What they don't realize is that God may never allow them to do great things for Him, unless they are first willing to do humble tasks, and to prove themselves trustworthy.

I really understand this man's discouragement.  I, too, feel as though I have "labored" for 11 long years.  I, too, try so very hard not to ask that question, "Where are the blessings".   So.....In my heart I know this news is representative of the "small beginnings" of a positive impact on Olivia's health and body.  In a sense I see this as a beginning of our entire family's transition out of this deep hole of despair to whatever God has planned for our story.  Olivia's story.  I always felt as though I needed to wait, to let it "play out", if you will, before I sat down and triumphantly wrote out each detail of her healing.  After reading Mr. Farro's enlightened opinion, it reminded me of how much her story may help others.  As I attempt to shift my focus away from "waiting for the healing", documenting our journey has become the focus. Those struggling with a sick child could benefit from the hope and faith filled journey I've been on, even if it doesn't play out the way I want it to. Focusing on and waiting for her healing is probably the reason I hadn't  started writing.  I wanted to make sure she was healed, because for some reason my heart felt as though the only way it could be a book, is if she were healed.  So maybe.....just maybe by stepping out with the faith He so graciously helped me develop, sharing our "raw" story is what I am meant to do for the time being - because reading someone's journey as it happens lends to the emotions that are sometimes forgotten when the moment has passed.

Saturday, May 19, 2012

Olivia's Health/Development Condition Statistics - Update

Weight - 72 pounds - she has gained 10 POUNDS !!!!!
Words - 0
Communication ability - pull someone to TV - now she actually sits down and watches the movie (before she used to just walk away and pace -  HUGE CHANGE
Favorite activity - stiming with string
Understanding ability - probably a 1 out of 10 maybe

Saturday, April 28, 2012

Is it Genetics?

Big news this month! Scientists believe they found a gene mutation for children with Autism. Click here to read one of the articles on the discovery:


This has always been a question people ask me ---- does Olivia's condition run in our family?  All I can say is that we have not seen this type of disability in either side of our families.  And although we took her to the U of M and had every available genetic test run on her (which she passed with flying colors), the genetic counselor ended our consultation with the comment, "Well, it's obviously a genetic error, we just haven't identified it scientifically yet." Hmmmmm.....

They didn't have the answers.....again.  Answers that made sense were not available.

I really liked how Dr. Natasha Campbell-McBride answers this, what she says does make sense, especially in Olivia's case:

"Now and then we see articles in various journals reporting that some part of some gene has been found, which may have something to do with autism....... We are assured that scientists are working on it and that the genetic cause of these conditions will be found! Not that it will help the patients or their families, but it will put our minds at rest in that our children were meant to be disabled and there was nothing we could do about it!

In our modern world, genetics is a popular concept.  Almost every health problem is commonly blamed on genetics.  We pollute the water we drink, the food we eat, the air we breathe with industrial and nuclear wastes and when we get ill we blame it all on genetics.  We deplete our soils of minerals and other nutrients and replace them with pesticides, organophosphates, weedkillers and lots of other chemicals, we grow our crops on these soils, we eat these crops, we get ill and blame it all on genetics.  We damage our children's immune systems with vaccinations and antibiotics and blame it all on genetics.  We regularly consume processed foods with virtually no nourishment for the body that are full of chemicals and detrimental to health, and when we get ill we blame it all on genetics. We regularly intoxicate ourselves with alcohol, tobacco and drugs and when we get ill we blame it all on genetics.

We have epidemics of cancer, heart disease, learning disabilities, psychiatric maladies, autoimmune disorders etc etc etc.  These are all conditions which doctors very rarely encountered 100  years ago.  Have our genetics changed so quickly to cause these epidemics? For the last few decades genetic research or molecular biology has received the most research money in the Western world.  A lot of laboratories which used to do basic science have been converted into genetic research.  Billions have been poured into this area in every Western country. So, if every other scientist works in genetics then that is what they know and that is what they are going to think about when it comes to identifying the course of any disease.  Obesity? Don't worry about your eating habits. Just wait, we will find a gene to blame for it!.

As with other modern epidemics, there is a conclusion that there may be a genetic predisposition to the GAPS disorder rather than a genetic cause.  This predisposition can be made of tens or even hundreds of various genes, nobody knows yet how many and in what combinations.  But what we do know is that before any predisposition materializes into a disease it has to have certain environmental conditions.  Diet is a major part of this environmental conditioning.

There is a large body of research showing that maternal diet during pregnancy and the diet of a baby have a major impact on the genetics of that baby.  Apparently, there are many genes in a child which never become active.  For a gene to become operational it has to have certain conditions to express itself. Environment: our diet, lifestyle, pollution, stress, infections, etc. has a profound effect on what happens to the child's health. By changing the environment (diet etc.) we can make sure that whatever genetic predisposition the child may have, it will not develop into a disease.

In conclusion: it is possible that there are some non-specific genetic predispositions to autism, and other GAPS conditions, which quite likely overlap with a predisposition for autoimmune and digestive disorders and some weakness in the blood-brain barrier.  It is very likely that this predisposition is very widespread and that modern environmental factors make it materialize into disease much more often than 100 years ago, when the environment was different.  A century ago people may have had this predisposition just as much, but it did not show itself because the environment for it was not right - the diet was more natural, there was less pollution, less stress, no vaccinations, no antibiotics etc etc.  One hundred years ago the majority of doctors did not see autism in their practice at all.  Today we have a growing epidemic.  Genetics just don't work this way.  This epidemic can only be due to environmental factors: modern diet, lifestyles, vaccinations, drugs and pollution. Rather than dwelling on genetics, which we can do nothing about, I see this conclusion as positive, because there is a lot we can do to change the environment to help our children.  And those who have done so know that it works!"

I love how Dr. McBride dives further into causes of this disorder, separate from genetics.  Family history and learned behavior are things that are passed down from generation to generation.  Abnormal gut flora, which is the cornerstone of this treatment, is passed from mother to child. She explains it with this scenario:

Another familial factor is learned behavior. What children learn from their parents - what to eat, how to cook, what foods to choose from, personal values & priorities.  As Dr. McBride explains:

"Learned behaviours can vary quite dramatically from family to family. This is something being passed through generations without any genetic involvement.  But it is as important as genetics if not more so, because it will alter the gut flora, the pH, the metabolism and the biochemistry of the body.  And if the grandmother, daughter and granddaughter follow the same family behaviour then they will predispose themselves to similar health problems.  For example, imagine a family where rich sugary deserts were always a tradition together with a lot of bread, pies, biscuits and cakes.  This diet will alter the gut flora and promote an overgrowth of pathogenic microbes in the gut, which always has an unbalancing effect on the immune system.  At the same time this a very house-proud family, so there is a lot of cleaning and polishing with domestic chemicals, air fresheners, deodorants, personal care products and perfumes - all highly allergenic and toxic substances and another onslaught on already compromised immune systems.  We did not even come close to genetics here, but already you an see how the family can make us immune-compromised simply through learned behaviours."

How does this not make sense?  I feel as though my generation was the beginning of using processed food.  Casseroles made with pasta and cream of mushroom soup gained popularity for ease and economic reasons.  Thankfully, my mom did not like things from a can (and did not like pasta) so I escaped that sort of "processed food addiction".  Lunch and dinners at our house consisted of the same menu's over and over - meat, vegetable, vegetable, and my mom only had goodies like cakes and brownies for special occasions, never every night.  Boring yes, and at the time I grew tired of the same old thing.  But as I am learning, those meals preserved my immune system quite nicely.  It also confirms to me why Olivia was completely normal at birth until the little shakes started at 16 months.  Monthly doses of antibiotics, in addition to other factors took out her gut flora and set the stage for a very compromised immune system. I remember filling an antibiotic prescription once and the pharmacist said, "This is a pretty hefty dose for that little babe's body, I will call to check the accuracy." This memory makes me shudder. These words should have caused me to question, but I didn't - I trusted. Why did the doctor prescribing all these antibiotics think they were benign to the rest of her little body?

So, this is my answer to the people who have wondered about the genetic component of this tragedy.  I'll never forget the comment an acquaintance said while I was pregnant with Lauren.  She said, "Aren't you worried that your baby will turn out like Olivia?" The old me would have been extremely irritated by such an insensitive comment, but I was at peace.  In no way was I worried, because deep down I knew the truth and I knew that we would make different choices with our unborn daughter  -  choices I wished I would have made for Olivia.  Those choices, which included no vaccinations, have indeed produced a healthy child with a robust immune system.  Her diet has always consisted of low amounts of sugar and processed foods, and lots of fresh organic meat and vegetables and freshly pressed juice.  She may be one of the few six year olds that enjoys salmon, kale chips and kombucha tea!

To those reading this post whose future includes getting pregnant - get healthy yourself first!  There is an entire chapter in the GAPS book on this very subject.  You (and your future bundle of joy) will be thankful!

Wednesday, April 25, 2012

Close call! Olivia almost hit by a car!

Whew! Close call today.  An appliance repairman was leaving our house through the front door this evening.  As he approached the door, he thought Olivia wanted to go outside.  He opened the door and she took off down the lawn and darted right into the street.  This is what I was told anyway.  I was busy making dinner at the back of the house and did not realize anything was going on until my neighbor burst through the back door saying, "Kelly, your dau" - that's all she got out and I immediately raced past her thinking that Lauren got hit by a car (since Olivia is never outside without supervision).

As I approached the street I saw Olivia in our neighbor's arms and the poor gentleman who almost hit her pulled over and shaking.

I am posting this because although Olivia looks pretty normal (despite the seizure helmet she was wearing), she is not safe without supervision.  I know the service man's heart was in the right place, but she seriously was almost killed because of a gesture that was grossly inappropriate.

I am simply pointing out another anomaly of this autism epidemic.  When I was a kid, I don't remember any "normal looking" kids with such a serious development delay.  Sure, I knew kids with Downs Syndrome and Mental Retardation, but you could tell they were disabled because of their appearance.  Think about it.  In 1990, the autism rate was 4 or 5 in 10,000 -- now it is 1 in 88.