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.

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.

1 comment:

  1. I found your blog while googling for info about fermented cod liver oil, and now have read through almost your whole blog. I'm a mom of a 4yo with ASD, and were using SCD too. We're seeing good results, but I get impatient sometimes. :) I understand in some degree the heart ache you feel, and not forgetting what things were like before my daughters system was damaged. Sometimes it is so easy for me to feel alone. I do take great strength from my relationship with God, but I also really appreciate you being willing to share your experiences, as it makes me feel less alone.