Olivia's journey has been rough - to say the least. Born perfectly healthy, her declining health has always been called a mystery. Fifteen years have come and gone, with no change to the daily seizures that have held our hearts hostage..... until now. Finding HOPE and healing for our girl began with the introduction of Medicinal Cannabis - A controversial treatment for untreatable seizure disorders.

Her story briefly -

At 18-months she developed little "shaking spells" in the middle of the night. Olivia's journey has been rough - to say the least. Born perfectly healthy, her declining health has always been called a mystery. Fifteen years have come and gone, with no change to the daily seizures that have held our hearts hostage..... until now. Finding HOPE and healing for our girl began with the introduction of Medicinal Cannabis - A controversial treatment for untreatable seizure disorders.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, after a medical procedure, the little "shakes" became large jerks that would catapult her to the floor. She stopped talking, stopped responding to our voice and appeared have entered 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 40 to 90 seconds.

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. We then tried the Specific Carbohydrate Diet (SCD), to which the Gut and Psychology Syndrome (GAPS) diet is developed from. We saw such amazing results from this diet we decided to take her off the many supplements she was taking because we didn't think she needed them. Well, we were wrong, and she crashed. Apparently, the supplements were helping her --- it was not a coincidence. It made sense that to get her back (at least to the place before pulling the supplements away), we should just put her back on the supplements -- but it didn't happen that way. The complexity often used to describe her was now ten fold, any change we made "upset" her fragile hypersensitivity to change and her path became even more confusing and "crooked". The Medicinal Cannabis has finally given us a mechanism to control the extreme Neurological Inflammation racing through her little body -- something every anticonvulsant medication failed to deliver on.

Our beautiful girl

Our beautiful girl

As a parent to a severely autistic child who has daily 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 because I never introduced the homemade yogurt, which is the main healing modality. 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.

I do respect and am thankful for the excellent emergency practices of the conventional medical institution. Their services have literally saved Olivia's life on numerous occasions. 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.

This blog is really about our journey over the last 15 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.

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.

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