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.

Friday, June 10, 2016

Thank You for the Prayers - Olivia is home from the hospital!

I ran into my cousin today at a memorial service for our great aunt Verona and she asked me for an update on Olivia. I realized I left you hanging ----- I am so sorry I have not updated you sooner. After our 10 day stay, we arrived home just before Memorial Day Weekend. In between catching up from being gone and my younger daughter slamming her thumb in the car door (2 hour ER visit)---- and of course the last week of school ----- I haven't had a chance to sit down and write. The good news is  ----- she caught the last week of school (not happy to have her picture taken though):


Although we are still in recovery mode. I was excited to meet with a new type of specialist --- a Genetics Doctor who specializes in Pharmacogenetic testing. He explained to me that Olivia probably lacks the enzymes necessary to breakdown the Keppra medication properly. This makes complete sense in her case. Instead of reacting to the medication negatively immediately, it took several months for the toxic effects to build --- little by little everyday.

In the hospital they decreased the Keppra by a large amount and after adjusting to this major change she has stabilized and is gaining more and more strength everyday. Each week, I have been instructed to decrease the Keppra until she is completely weaned off. 

I am SO thankful for the Medicinal Cannabis! It has been keeping her stable and we are back to the seizure-free weeks --- the only time she has had one (just one!!!) was 3-5 days after I decreased the medication. For now, we are not putting her on another medication (against the neurologists advice), but in our opinion, medications typically cause more problems then benefits for her. We would like to see how she fares with the Medicinal Cannabis on it's own.

In other news, we have received the results from the metabolic testing and everything has been coming out normal. Our next step would be a Whole Exome Sequencing which I believe looks at 32,000 genes. 

I have so much more to say! I have been working on a separate post. I am grateful for you and your prayers. They mean the world to me!

xoxo  

1 comment:

  1. YYEEESSS!!!!! I don't know what else to say! Just feelin your joy!!!!

    ReplyDelete