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
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?
Saturday, February 10, 2018
Can Wisdom be elusive for the wise?
So thankful for your prayers. Olivia continues to need them.❤️
Yes, we are still in the hospital. Three weeks today. Sigh.
Testing...scanning.....blood work....ultrasounds.....Echo's.....such sophisticated tests, all of which are mostly normal. High temps, no bacterial indications, high liver enzymes.......constant hand biting.
I'm not a doctor but the obvious (in my opinion) continues to get pushed off the table.
I can vouch for Olivia. Never have I witnessed her biting her hands for days and days, week after week. It's just never been part of her picture. Ever.
I remember vividly the day my wisdom teeth attempted their shenanigans in my mouth. I was a sophomore in college.....living without a care, day in and day out. It was an average day. Work, class, a little hang time with my friends, late night studying, then bed. All of a sudden, at 3:00 in the morning I woke up in extreme pain. A pain I had never felt in my mouth. I did what every other college student would do, I called my Mom. By 8:00 that morning I had an appointment with the local surgeon and by that afternoon they were out.
My baby girl has no voice. Her ability to explain her pain has been stolen. Can you even imagine?
What has complicated this hospitalization is a known fact......mouth pain and doctors do not gel. I've heard apology after apology from the hospital staff, this is definitely a hole in our current healthcare system. Dentists are a luxury at hospitals.
Most people are able to explain their pain when it first begins like I did in college. For those who are nonverbal, that option doesn't exist. So they suffer. They cry. Soon they have no choice but resort to behaviors they can no longer control. They lash out. They lose control. They bite themselves.....inside screaming silently at the top of their lungs. Help Me!!!!
And then. Then they are medicated. They are heavily medicated to end the struggle, with the root problem never addressed.
One analogy I recently shared with the rounding doctor -- Someone steps on a nail. They go to the doctor and they are prescribed antibiotics and pain medication and sent on their way. The pain continues to get worse.....the nail is still there....the root cause of the pain never addressed. He laughed and said that would never happen - but is that true? I think it happens more than we think. We have a symptom, it's not well understood and the only tool in their toolbox is a medicine that just deadens the symptoms, many times creating more problems from the treatment.
When we checked in here all of Olivia's blood tests were normal. Now, we are dealing with high liver and kidney tests and a host of other complications that happen to be "side effects" of potent medications that haven't resolved a persistent high fever that magically started after iv treatment.
I've been praying for wisdom for quite a while. I never dreamed it would be this literal.
The Bible teaches that wisdom is ours for the asking, He gives it generously (James 1:5) Even if we don't believe it.
I really like The Message translation on this 1 Corinthians scripture on wisdom and the wise:
The Message that points to Christ on the Cross seems like sheer silliness to those hell-bent on destruction, but for those on the way of salvation, it makes perfect sense. This is the way God works, and most powerfully as it turns out. It’s written,
I’ll turn conventional wisdom on its head,
I’ll expose so-called experts as crackpots.
So where can you find someone truly wise, truly educated, truly intelligent in this day and age? Hasn’t God exposed it all as pretentious nonsense? Since the world in all its fancy wisdom never had a clue when it came to knowing God, God in his wisdom took delight in using what the world considered dumb—preaching, of all things!—to bring those who trust Him into the way of salvation.
While Jews clamor for miraculous demonstrations and Greeks go in for philosophical wisdom, we go right on proclaiming Christ, the Crucified. Jews treat this like an anti-miracle—and Greeks pass it off as absurd. But to us who are personally called by God himself—both Jews and Greeks—Christ is God’s ultimate miracle and wisdom all wrapped up in one. Human wisdom is so tinny, so impotent, next to the seeming absurdity of God. Human strength can’t begin to compete with God’s “weakness.”
Take a good look, friends, at who you were when you got called into this life. I don’t see many of “the brightest and the best” among you, not many influential, not many from high-society families. Isn’t it obvious that God deliberately chose men and women that the culture overlooks and exploits and abuses, chose these “nobodies” to expose the hollow pretensions of the “somebodies”? That makes it quite clear that none of you can get by with blowing your own horn before God. Everything that we have—right thinking and right living, a clean slate and a fresh start—comes from God by way of Jesus Christ. That’s why we have the saying, “If you’re going to blow a horn, blow a trumpet for God.”1 Corinthians 1:20-31 The Message (MSG)
Another version of the most important verse here:
But God has chosen the foolish things of the world to put to shame the wise, and God has chosen the weak things of the world to put to shame the things which are mighty; 1 Corinthians 1:27 NKJV
Please don't get me wrong. I appreciate and am thankful for the hardworking doctors and nurses that have been taking care of Olivia for the past three weeks, but sometimes the simple answer is passed as illegitimate, common sense thrown out the window.
I know. I'm only a mom, but I'm seeking the Keeper of Wisdom. The Wisest of them all, and continue to pray that He guides them to the answer - simple or complicated - so we can get her back on her feet. Back to our healing mission.