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, February 19, 2018

Faithfully Waiting for that "Suddenly" Moment. Can We Bounce Back?

Wishing I had some better news....or any news for that matter.

We are still here and the relentless fevers are her constant companion, unwilling to just melt away within the perspiration that pushes through her pores several times a day.

Where have we been since my Valentine's Post?

I can't help but be in waiting mode, right? Trying to learn more, sit still and listen more...trying not to question and simmer too long in the "wonder" stage.

Wondering.....how a kid with a history of very few fevers can fall into such a rare position of chronic fevers.

Wondering how we could go from eating, drinking and walking to the bathroom to tube feeding, extreme weakness and a strange inability to even hold her head up.

Wondering, and waiting for what God's going to reveal from this odd setback.

Wondering why I can't ever be consistent with my faith. You know, that believing without seeing thing.

I have to say that we've traveled down some rocky paths in the last four weeks and have seriously been pushed to the edge of several cliffs. Scary cliffs. She has been tested for a plethora of major syndromes, infectious diseases, AutoImmune Diseases,  HIV, Tuberculosis, and many other obscure conditions they needed to rule out. Praise God they all have been negative. 🙏🏼

As of today, the team continues to scrap the bottom of the barrel looking to check off any other "one in a million" conditions as her current condition continues to baffle them.

Even the current "semi diagnosis" of "Drug Reaction with Eosinophilia and Systemic Symptoms"(DRESS) isn't conclusive. Phenobarbital is one of the bad guy drugs with this mysterious syndrome. Unfortunately, the phenobarbitol has been keeping those dang seizures in check. Check out the pictures below though. With every single hospitalization, I explain Olivia's extreme hypersensitivity to medications, and the uncharacteristic nature of her weak, damaged immune system. Every. Single. Time.

After days of testing the scary stuff, it comes back to this. Hypersensitivities to drugs.....accumulation of drug metabolites (i.e. toxic). You really can't make this stuff up.

Reflecting on the last four weeks and watching her get a tiny bit better each day, I'm reminded of God's Grace while actually simmering in that unwanted arena of the unknown. Auto Immune conditions, infectious diseases, and even cancer --- that's a heavy load. What this uncertainty did do is catapult me further into learning about His character and the obedience He requires while we are sitting in that dreaded waiting room.

I've learned that Olivia has a book written especially for her in Heaven. Her destiny before the injury.

Your eyes saw my unformed substance; in your book were written, every one of them, the days that were formed for me, when as yet there was none of them. (Psalm 139:16)

His Grace gives me the strength to continue fighting for that reality instead of this painful one. We can come "boldly to the throne of grace, that we may obtain mercy and find grace to help us" Hebrews 4:16.

A friend of mine shared a podcast to listen to and it knocked my socks off. Exactly the words I needed in this confusing season.

Graham Cooke - God gives us the Upper Hand in Places of Defeat.

So many confirmations I needed here:

"Perfecting the art of bouncing back......we can't be 100% all the time........consistency.......God's Grace in allowing you to bounce back to a higher place than where you fell from.......going to a higher place of victory."

So incredibly good.

I continue to proclaim her future:

For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future. (Jeremiah 29:11)


p.s. this is a really good one too:

Graham Cooke - Turning Your Setback into a Comeback

1 comment:

  1. Oh, Kelly! Thinking of you, Olivia and your family! Please let me know if there is anything I can do! Amy