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, April 11, 2018

Assumption's Can Be Deceiving

I haven't been able to share with you lately. I've been in that pit again....unable to see the light. Caught up in the darkness.....you know, where deception runs rampant.

I'm trying to decide which Bible story is similar to my last couple months. Have I been in the lion's den? The fiery furnace? In an ash-heap? In prison? Fighting Goliath? Or simply walking further out into this man-made wilderness? Which is it? It's seriously up for debate in my head and it's been making me crabby.

Just being real.

Thus the reason I haven't been writing to you. Who wants to listen to a crabby person vent (other than my mom, jk 😂)? Certainly not you, and I respect that.

That said, I have good news for you by the end of this post. I promise.

What I'd like to share is the truth about my experience with Olivia over the last couple months. One word was king......Assumptions.

We've all heard the expression, right? Don't assume.....it makes an a** out of u and me. Silly...right? Or might this just be dead on?

Most of Olivia's really bad days have begun with assumptions, and the last several months have proven this to be true.

Assumptions are all you have when your child is non-verbal and not able to communicate with you. On January 20th we assumed she was having a "rage" adverse reaction to the medication Keppra since she has experienced it before. Just ask her elementary teacher and aides....scars from her gouging their arms probably still exist. It was a sensible conclusion, but this time her rage was directed at herself. Self-harm. Gouging of her face. This post explains the details.

We assumed and we started weaning in the hospital, but the self-harm continued. A CT scan was done and it revealed that she actually had an abscess in her mouth that was hidden from our sight. We assumed  the root canal an ENT performed a couple years ago had worked. She was in pain and could not tell us, that is, we didn't think she could tell us. In reality, though, she was. She was screaming at the top of her lungs, eventually having to intensify her message because we just weren't getting it. She upped her game.......with the clawing of her face....the constant biting of her hands and the constant writhing in pain.

At the time this CT finding was a blessing, I sighed with relief. The surgery to remove the abscess (and unfortunately 2 of her front teeth) was done and I was anxious for her to recover so we could return home.

I assumed wrong.

When she returned from surgery I was met with members of the pain and palliative care and infectious disease teams, and this is where the assumptions ran wild.

Standard of care for pain. Opioids+.

I was told she would be getting the following medications:

IV Tylenol
Unasyn for the "possible" abscess infection.

I told them. "Olivia does not do medications well! Her body does not break them down properly." "This is too much for her." "She had an abscess in that exact same spot before - she did 7 days of amoxicillin and OTC Advil ---- that's it!"

If you get me, you know I am a fierce advocate for Olivia. But, unfortunately that didn't matter. They are the experts - I am nothing. In an instant, I'm reminded of a clip from the movie "Matilda" I've shared on my blog before - "Listen you little wiseacre. I'm smart, you're dumb --- I'm big, you're little. I'm right, you're wrong, and there is nothing you can do about it."

And that there is truth. There was nothing I could do about it, and that's where things took a turn for the worst. 

High fevers, every day for a month. Liver enzymes elevated. Pancreatitis. She needed enema's and catheters to eliminate. Visits from other specialists due to other elevated blood tests. Endocrinology, Gastroenterology, Radiologists, Pharmacogenetics and towards the end, the Physical Medicine experts. 

I'd like to invite you into her hospital room  -  number 5020. This small room where I ate, slept and sat for 8 weeks..... watching my daughter slip into a world I had never seen before. In a sense, I likened it to a "lion's den" and daily I was thrown into the "fiery furnace" of despair and worry as they checked off the testing of one horrible and critical disease after another. Scans and X-rays repeated over and over. Waiting for test results became excruciating. "Goliath" visited me on a daily basis as he became more and more frustrated with normal test results as the "fire" of her daily high fever became ever so intimidating. They exhausted all the causes ---- except for one. Drug reaction. Multiple drug reactions. DRESS (Drug Reaction Eosinophils Systemic Syndrome). 

aka - poisoning.

When we checked in on January 20th she was sitting up, eating and drinking real food --- walking to the bathroom and so strong with the self-harm they had to put "No-No's" on both of her arms. They even considered putting her arms in restraints. The darkness hid the abscess, but even with the unknown infection, she did not have a fever. The fevers began after the onslaught of the medications. Can you even imagine taking all of those medications at the same time for days on end? Can you imagine losing your ability to control your bodily functions and not be able to tell anyone? Excruciating to think about. Excruciating to be a parent and to have to witness it, unable to do anything. You know why? Never once did they believe that their standard of care was responsible. They assumed that her fragile body could handle all those medications, and because of this assumption it then became her fault. It was her "underlying" condition that caused it all. It had to be because their "superior knowledge" is infallible.  Period.

This elusive "underlying" condition. What exactly is it? They tested her for everything under the sun, including every known autoimmune test....every cancer panel. Everything came back normal. The real cause became the elephant in the room. Each morning the "team" would file in, carefully slipping past that darn elephant that grew larger by the day. Towards the end of our stay, I watched them closely as they entered the room. My minds eye saw them sheepishly squeeze by the room full of truth and pridefully announce the following assumptions:

  1. Olivia's fevers were/are a result of her "underlying" condition and it's a defect in her brain (even though they did not see anything on an MRI.)
  2. Olivia's newly acquire hypertonia (which she did not have at admission) is a result of her "underlying" condition and it is her new normal. (To me it looked like severe Charlie Horses).
  3. Olivia's inability to use her left arm (which became floppy and unusable) is a result of her "underlying" condition and it will be her new normal.
  4. Olivia's inability to sit up or hold her head up is a result of her "underlying" condition and will be her new normal.
  5. Olivia's extreme weakness and inability to eat and drink is a result of her "underlying" condition and will be her new normal.

And soon I began falling.....falling into that pit that I've crawled out of time and time again. The pit of wondering where God was, the pit of feeling forsaken, the pit of grasping at and clinging to mere shoestrings of faith that I've spent years building up in my heart. I was alone. All the time. Listening to these lies about my baby girl. My vision for her was fading....quickly. What about his plans for her life? Are they no longer good? Remember? I had just figured out some big pieces to her puzzle before this whole mess started. This is the absolute worst condition she has ever been in.

Finally, one morning I thought about everything that had happened and the rush of emotions crashing down on me. Daily. Isolation...confusion....condemnation.....discouragement....fearfulness. In an instant I'm reminded that these feelings....these emotions are liars. This liar was wearing me down, leaving me frazzled, stripping away my courage. From that point on I redirected my attention to God's word ferociously to remind myself what comes from Him. He stills me. Reassures me. Calms and comforts me. He enlightens me. Intimidation was not His way.

This situation was not Olivia's "underlying" condition. This team's gross assumptions about medications and the benefit/risk ratio were undeniably skewed. These doctors have an uncanny belief that drugs are only good. The more the better. Side effects? What is that? Especially the "experts". The pain expert appeared to have memory lapses when I correctly pointed out that the constant vomiting and drench sweat fits were not part of Olivia's picture, but were meticulously detailed in the side effect profile of benzo's. Her daily comments of how "wonderfully" Olivia was responding to the potent opioid's and benzo's painted a grossly unprofessional picture of an expert who clearly only saw blur after the words "side effects". The infectious disease experts were all over the board. Even with a negative culture, fevers were their specialty and while one said the course of antibiotics was enough for the "what ifs", the director of the department charged in one day like chicken little demanding a pic line with a 6 month iv antibiotic course, only to completely recant this hysteria the following day.

Finally, the insanity was made complete when the aloof Physical Medicine doctor and his lovely assistant swooped in like vultures to render their final and prideful opinion about Olivia and the poor prognosis they had for her future. No time to listen to what she was doing 8 weeks prior. Her muscles were not tight when admitted. Her arm was strong. Her back used to straighten. She was walking.
No rehabilitation. She didn't qualify. Drugs. That's what she needs.

I tell you this not to berate anyone, but to only tell the truth of what happened. Assumptions regarding powerful medications, incomplete knowledge, prideful ignorance with absolutely no wisdom.

And then they sent her home. A new version of disabled. The weakest I've ever seen her. Her "new normal" according to the Children's experts. All because of a simple, run of the mill abscess that was not systemic. The same exact procedure was performed in an ENT office a couple years ago.

She used to walk up the stairs to her bedroom. Not anymore. We have a mattress on the floor in our office. She used to walk up the stairs to take a bath. Not anymore. Sponge baths on the floor.  She used to eat with her adapted spoon. Not anymore. NG tube feeding. She used to walk to the bathroom. Not anymore. She used to sit up on her own. Not anymore. We need a Hoyer Lift.

It has been extremely trying. I've tried to recount and claim the many times she has gone backwards and recovered her lost skills.  One night while laying next to her as she drifted off to sleep I realized that it's been her that has been in the lion's den. Seizures have been her fiery furnace. She fights Goliath daily. 18 years she has lived in an ash-heap. Her entire life she has lived in a prison, which is sadly her own body. Together we've been traveling in this man-made wilderness and in that darkness I again entertained the idea that we were and are total and complete victims. Especially with this last hospital stay. It was like one last kick to the curb. That's it. I was up all night.

Wallowing in victimhood.

But then.........I got up and started moving in the new day and I heard an incredible song ---- "I am no victim" by Kristene DiMarco and I knew it was just for me.❤️

I'm reminded...... with God.....

I am no victim. I live with a vision
I’m covered by the force of Love. Covered in my Savior’s blood
I am no orphan. I’m not a poor man
The Kingdom’s now become my own
And with the King I have a home

He’s not just reviving. Not simply restoring
Greater things have yet to come

He is my Father.I do not wonder
If His plans for me are good. If He’ll come through like he should
Cuz He is provision. And enough wisdom
To usher in my brightest days. To turn my mourning into praise

I am who He says I am. He is who He says He is
I’m defined by all His promises. Shaped by every word He says

If you're like me and like live worship video's, here's her live video:

This live version is my favorite. I crank it up so loud I lose myself in the message. That's just what I do to crawl out of the pit of unbelief and darkness. Music. Loud. My mom always says "Why do you listen to it so loud?" Until this round of adversity I always assumed that I need it loud to release my sorrow. As I sit here tonight, the clear whisper I hear is that I need it loud to blast past my head.....past my thinking....past my logical determination of the dire circumstances I am living in with Olivia. I need it loud for it to bypass the "intellectual arrogance that opposes the knowledge of God. (2 Corinthian's 10:5). It's the only way for that much needed God sized Hoyer lift to lift my heart and the rest of my earthly baggage out of this deep, dark pit I find myself in when Olivia tumbles down.

I've realized that I don't have to assume God's promises for Olivia's recovery from this assault...I just need to continue to believe. Like the song says....I am who he says I am.....Olivia is who He says she is......Healed.....Abundant Life....Christ Like.....Wonderfully Made.....A New Creation.....An Overcomer......

My faith says she'll come out of this and she won't even smell like smoke. (Daniel 3:26-27)


p.s. I would like to send a shout out to the amazing nurses, csa's and several doctors who were champions with Olivia during this very difficult hospital stay. I'm grateful for your love and compassion.


  1. Dear Kelly...My heart just aches for you and Olivia and for your other children too. This latest ordeal has been so long and so difficult. You get knocked down and you get back up over and over again. Your faith continues to inspire me. I think of you feeling helpless as you watch Olivia suffer and I can't help but think of Mary feeling helpless as she watched Jesus suffer. I hold you close in prayer and wish I could do more. Sending much love to you. God bless and take care...

    1. Thank you so much Jeanette. I am so thankful for your powerful prayers❤️

  2. Dear Kelly,I follow your blog for a long time hoping for better news, that at least someone will help your child. As the mother of twins with disorders very similar to your daughter, I meet up with the same disagreement doctors and therapists. Drugs, drugs and only drugs. I intervened a few times and turned down the proposed therapy and I was right. But it is impossible to take responsibility for the complete treatment of my daughters. Today it is one of my own daughters reacted after several days of nearly all of reaction cancelled -walking, sitting, swallowing, sleep ... All of that as a consequence of the infection that ended ten days ago. It happened the second time, and I just sat there, cried. The first time it happened I was freaking out, running to the emergency, and they send me home because didnt find anything. This time I knew I was alone and that only I can hope for. I know how you feel ...

  3. Prayers for your daughters and especially for your mothers heart❤️ thank you for following our story