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.

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