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.

Sunday, January 1, 2012

Thinking about starting the GAPS diet



My life has led me down this path that's ever winding
Through every twist and turn, I'm always finding
That I am lost again
Tell me when this road will ever end

Give me a revelation
Show me what to do
'Cause I've been trying to find my way
I haven't got a clue
Tell me should I stay here
Or do I need to move
Give me a revelation
I've got nothing without you  (Third Day - Revelation)

I am sure I am not alone, wanting a revelation about what to do in a situation that seems to be going nowhere.  For 11 years this was a daily plea. It seems we had tried everything for Olivia. With each intervention, it seemed as though Olivia was always the kid that it didn't work for.  In the beginning, the anti-seizure drugs to control the small jerks..... The high doses of steroids that were a miracle for some children with myoclonic seizures......The Ketogenic diet.........MCT Oil Diet.......Gluten & Casein Free Diet.........Homeopathy........Pfeiffer Treatment Center Supplements.......Allergy Associates Sub-Lingual Drops.........Antibiotics for Lyme Disease.......Miraculous Instant Healing through Prayer.............

Always searching, not accepting, anxiously starting the new intervention with a fear that this one will fail too.  Living through failed treatment after failed treatment.  So many times I tried  to "make" the treatment work.  I followed the instructions flawlessly, no matter which intervention it was. Sometimes I wonder if this is just hard wired in to a mother's brain, perhaps her soul. Giving up, stopping the search has never came to mind.  As long as there is hope why give up? To some that may be easier, but is it really?

This marks the beginning of the GAPS diet.  Once again, the "Thrill of Hope" leaves me restless.  After reading the book, the website and any other information I could read, the hope has returned. 

No comments:

Post a Comment