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.

Wednesday, February 14, 2018

Valentine Fever? When loving the broken is this year's plan 💔

Love. What a crazy, exhilarating, powerful word.......feeling......calling.

Past Valentines for my family have been filled with excitement, tenderness with little's, cute heart underwear as gifts and of course flowers and chocolates.

But. Not. This. Year.



Going on 4 weeks in the hospital and we are stuck. Like, somewhere between a rock and a hard place. Ever been there?

For those who've been following our recent hospital experience, the complications appear to be endless. I explained in my last post Can Wisdom be elusive for the Wise that Olivia was in a lot of pain from her wisdom teeth, which continues to be overlooked as painful. We checked-in the end of January for a drug wean, and since then each day continues to morph into unbelievable complication after complication.

Now, for today. In addition to the mouth pain, this poor girl has had high fevers for over 10 days. We've had all the blood work to find a source of infection and they've come up with diddly squat. So here we are with a diagnosis of FUO - Fever of Unknown Origin --- aka a mountain of hurdles. You see, there will be no surgery with this mysterious fever. In addition, fever medications haven't been working -- maybe 50% of the time and she is getting weaker by the day.

Sometimes I just don't get it. Why do the hurdles have to be so high? My conversations with God seem to get shorter during these intense moments, I don't know..... my mind goes blank and I can't think....I don't like it.

From the fever's early beginnings my mommy instinct kept going back to the day after the abscess surgery when she was put on 6, yes 6 medications all at once. Many of these medications were major pain narcotics and for a mom with a kid who doesn't process drugs the way others do, I was a bit concerned. Within two days of starting these medications her fevers started.....and never stopped.

Ten days later, they now have a theory. Drug fever. Hmmmmm.....yes, a reaction to a drug, exactly what I was concerned about. But hey, I'm just a mom.

New meds, high, unexplained fevers = drug fever. Here's a news flash.......medicines have side effects and actually can cause problems. Benefits do not always outweigh the risks.

So, we wait. We wait for her little body to deal with whatever it could not handle. We all know the waiting is the hardest. This song. "Take Courage" is incredible. Words so spot on for my weary valentine heart and painful days of waiting. If this post catches you on a vulnerable Valentine's Day lean in....you won't be disappointed.

Slow down, take time
Breath in He said
He'd reveal what's to come
The thoughts in His mind
Always higher than mine
He'll reveal all to come

Take courage my heart
Stay steadfast my soul
He's in the waiting
Hold onto your hope
As your triumph unfolds
He's never failing



I am so thankful for your prayers. Holding onto my hope that she'll pull through this. Once she does, her wisdom teeth will have to come out. Praying these days shorten up quickly.❤️

xo




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