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.

Saturday, October 17, 2015

Olivia only had 1 seizure in 21 days!!

For still the vision awaits its appointed time;
It hastens to the end—it will not lie.
If it seems slow, wait for it;
It will surely come; it will not delay. (Habakkuk 2:2-3)

Believing for this vision - waiting for it, hoping for it, and finally seeing it.

Olivia was fortunate enough to finally start Medical Cannabis in late July of this year. In Minnesota, Epilepsy is one of 7 qualifying conditions a person must have to receive treatment with this life changing medicine. The other conditions are Cancer, Glaucoma, HIV/AIDS, Tourette Syndrome, Amyotrophic Lateral Sclerosis (ALS), Severe and persistent muscle spasms, including those characteristic of Multiple Sclerosis, Crohn’s Disease, Terminal illness, with a probable life expectancy of less than one year.

Olivia receives her prescription from Leafline Labs located in Eagan, MN. This medicine comes in the form of a medicinal suspension homogenized with coconut oil. There is some confusion for the lay person on what it consists of and if the patient receives a "high" when taking it. The specific medicine that Olivia is taking is part of the "Cobalt" line at Leafline Labs. The Cobalt line of medicines are high in Cannabidiol, or CBD, which is an ingredient that does not cause psychoactive effects, and low in Tetrahydrocannabinol, or THC, which causes the psychoactive effects of "getting high."

Medicinal Cannabis is, among other things, anti-inflammatory, anti-convulsant, anti-anxiety and can improve sleep. I will be doing more research for further posts. If interested, you can read about general Medicinal Cannabis information for Epilepsy at the Epilepsy Foundation.

For 15 years, Olivia did not respond to any anti-seizure medications. Like many of the patients who receive Medicinal Cannabis, we tried approximately 10 drugs throughout those years. Many people assume that seizures can be controlled through medication. This has not been the case with Olivia, and apparently with many, many others who live in the United States. I just read an article recently that states there are 3 million people who have epilepsy in our country ---- and 1 million of them live with seizures that are not controlled. I have always felt so alone in this journey, but according to those numbers, too many people suffer like Olivia - a large percentage on a daily basis.

Leafline Labs listened to Olivia's story to provide an individualized treatment plan from the very beginning. Because she is extremely hypersensitive to changes in her body, the pharmacist developed a "weaning up" schedule with the Cobalt, titrating her up slowly while keeping a journal, detailing what her days were like. Almost immediately I noticed her sleep was better. For many years, Olivia would be up most of the night regardless of any medication we tried. Inevitably, she would not only respond poorly to the medication, but eventually it would start causing problems. We would put her on a medication only to start weaning her off a few months later.

Our first month on the Cobalt she had 15 seizure free days, followed by a cycle of seizures and an illness which landed her in the hospital. Her hospital stay was lengthened due to an adverse effect of a medication - this girl is so sensitive to medications! Time will tell what her therapeutic dose will be.

Night time was the worst. Each and every night her suffering would begin. As she drifted off to sleep in her hospital bed, I would lay my head down on my pillow knowing I would be up moments later.

The seizures would ravish her throughout the night, sometimes stopping for a bit. But, inevitably, the awful sounding morning "alarm" would begin as her screams could be heard throughout the early morning quiet. Our whole family suffered along with Olivia. Every. Single. Night. The Cobalt changed all this. The quieter nights came all at once, approximately 4 weeks after starting the medication. I relished in having to use a regular alarm clock by 6 weeks in --- the morning tonic clonic had disappeared into the night. "Could this really be working?" is all I could think as I climbed out of bed each morning without the old familiar heavy heart.

She could never gain weight......ever. She was so thin and frail, her wrists and ankles felt as though they could be snapped at any moment. Within 6 weeks on the Cobalt, her bones felt and looked heavier - she had gained 6 pounds in 4 weeks. For those of you who have followed our story, I still believe that the GAPS diet will be the long term solution for her. The GAPS diet is an anti-inflammatory diet. Many of the children who have seizures and have responded to the diet were fortunate enough to have success with an anti-seizure medication while their bodies healed. Within a couple years on the diet they were able to discontinue the medication. Natural healing is hard. There are many ups and downs, healing crisis's and metabolic changes that happen as the body heals naturally. Olivia's system has been so screwed up for so long making any change (even for the better) would send her into a tail spin. Having something that could stabilize her nervous system became mandatory - but no drug offered this kind of success. I am hopeful that the Cobalt will offer her this stability so we can proceed to introduce the GAPS healing protocol.

While looking through my journal, I came across this writing from two years ago when Olivia was in the hospital. I thought I would include in this post to provide a frame of reference on what I learned about waiting ----- waiting for her miracle.


Written October 2013......
I truly feel as though I have had a "front row seat to the longest wait", as Francesca claims in her song "Strangely Dim", and I am sure there are others out there that may feel the same way. What I didn't realize, as I laid down on my hospital pull out bed for the night, was how much this book "WAITING: Finding Hope when God Seems Silent by Ben Patterson" I purchased on a whim would change my waiting and ultimately change my hurting heart. What's interesting is that the content and/or idea's presented in this book are not new to me. In fact, I have read many books that talk about the concepts he describes, but for some reason the way he explained it with the stories of two bible greats, it resonated deep to the questions I have had for 13 long years,

Ben Patterson raises the questions that any good "waiter" has mumbled under the pangs of despair...."Can I trust You? Is there any meaning in all this? Why me? How much more do you think I can stand? What are You doing Lord?" His central conviction centers on what God is doing with us while we wait. The character He is forging - "because we know that suffering produces perseverance, perseverance character; and character, hope". Yeah, yeah, yeah - I have heard it and read it before and intellectually I can wrap my head around it, but at the end of the day my heart was still flailing and continued to ask  - "Why her, and why me?"

He explains that, "To wait with grace requires two cardinal virtues: humility and hope. Humility comes from being very clear on the fact that God is God and we are merely His creatures. Humility recognizes that we exist for God's sake, not He for ours. Only the humble can wait with grace, for only the humble know they have no demands they can lay on God and his world. We believe we have the right to be happy - now. Hope is also essential to waiting. Why wait unless there is something worth waiting for? To wait with humility and hope is essential for graceful waiting." He dives into the lives of two bible greats who had to wait ---- Job and Abraham. Job's struggle was with humility, while Abraham's was with hope. I felt comforted when I read that waiting with these two virtues rarely comes to us naturally ---- most need to cultivate this perspective.

We all know the story of Job ---- A wealthy, God-fearing man who loses everything - his children, his health, his wealth. Even Job wondered why it had happened to him and why was God so silent? But as Mr. Patterson states, "Our waiting will remain intolerable until we get clear on who God is and who we are before God". Job had this going for him....he knew that he had nothing when he arrived on this planet and he would have nothing when he left. He viewed everything he lost as a gift - his famous words, "The Lord gave and the Lord has taken away". He never thought that his rights had been violated or that he was the victim of a great miscarriage of justice..... unlike me. I have a 5 disc cd set all about Job and for some reason I did not get this jewel of information from it. Totally missed this virtue as I submerged myself in resentment and injured pride. "How dare He" were the words that floated around in my head, as the fairy tale of entitlement encased my heart. Why is it that I believed that I deserved happiness? Job was thankful, even with his monumental loss - me I was angry, because gosh darn-it Olivia deserved a good life - that is what many Americans are taught. I like how he says it:

"There is no single area where the faith of the Bible is more sharply at odds with twentieth-century American culture that this. We all seem to believe we have certain rights: the right to be happy; the right to a culturally acceptable standard of living; the right to health and pleasure; the right to a happy marriage and a fulfilling job. But if we are to think as people of the Bible, then we must never think in terms of our rights. We have no rights! We came into this world with nothing and will leave this world with nothing. Whatever we have, we have because God in his grace and generosity has given it to us." I felt I had always been thankful, but to retain that thankfulness while my heart was breaking with grief became the real challenge. So I did as any mother in my shoes would do, I forgot about this important ingredient and instead focused on my baby girl - to fight for her "rights".

One of the first books I read during those "crazy" years was "When Bad Things Happen to Good People by Harold Kushner. For years, Rabbi Kushner cares and helps his parishioners hold onto God as they deal with tragic life altering situations. Just another day at the office for him until tragedy hits his own family. His 3-year-old son is diagnosed with Progeria, a rare disease in which a person ages rapidly. Watching his son suffer, he began to think why God would allow such an awful thing to happen to an innocent child (hmmmmmmm...... sounds familiar). His conclusion is that God is good and God is compassionate but not even God can be everywhere at once. We live in a random universe, God can do nothing to prevent our suffering - i.e. He doesn't have control. When I first read Mr. Kushner's book, this kind of thinking actually was comforting ---- see I am not a victim of God's. He loves Olivia as much as he loves other children, he just couldn't protect her. Mr. Patterson has a different view:

"This is not the God of the Bible nor the God of Job! That is why Job's faith, rather than giving him comfort in his loss, instead is the cause of his greatest agony - at least at first. Job loved God and was convinced of his absolute goodness and his absolute power. Job knew he had done nothing to deserve what had happened to him. Then why? To use the words of Archibald MacLeish, from his play J.B. "If God is God He is not good. If God is good he is not God." For Job and the Bible, Harold Kushner's good God is not God. Neither is Macleish's. Job's faith will survive this great trial, but not without a monumental struggle."

As we know, Job had friends that came and reasoned and conversed with him about why this terrible thing had happened to him and the detrimental downward spiral of the pages and pages of "dialog". In the end God finally spoke and "shatters" Job's egotism by reminding him of the limits of his intellect.  I love how Mr. Patterson says it:

"Job's egotism is more than intellectual; it is the unique kind of egotism that often comes with great pain. The effect of pain is claustrophobic: it has a way of making the sufferer implode upon himself. The great temptation of suffering is to let your pain become the whole world and to start believing that all that ever was, is and will be, is your private hell. As hard and as brutal as it may seem, God's frontal assault on Job's egotism really liberates him from the notion that his suffering is the whole world. It tells him that there is a great big world out there, a world that is infinitely greater than his suffering."

Olivia's tragedy became my whole world and was the vehicle that drove me to try and figure it out - but I obviously have limits to my intellect, and so do the professionals that treated her. It reminds me of the day that someone close to me told me that I "am not smart enough to figure out what happened to Olivia." That there are "medical scientists and doctors that can't even figure it out." As focused as I was, I never saw that limitation. Soon I clung tightly to Philippians 4:13 -- "For I can do all things through Christ who gives me strength." Why I strangely thought I could google my way to a cure was in a sense being the egotist that Mr. Patterson talks in further depth about. My My My.... My strength, My intellect, My reasoning. There was no room for God's opinion or God's leading.

Bad things do happen to good people, and I happen to be one of them. Olivia is one of them. I finally found comfort in the sovereignty that is all God. As Mr. Patterson says, "With the departure of Job's egotism came a wise agnosticism. He didn't know why everything happened, and he didn't have to know why. All he had to know was who was in control. Job concluded that what puzzled him was no puzzle to God, and that was enough. That is what the word agnostic means --- one who doesn't know. There are some things in this life that we cannot know, and the sooner we come to terms with that fact the happier we will be. Usually it is our egotism that feels it must know everything." And here I thought I had no ego ---- ha - just kidding.  Basking in His sovereignty I can lay claims to Romans 8:28 "And we know that in all things God works for the good of those who love him, who have been called according to his purpose." I still have that going for me. God knows I love Him -- and at this point that is all that really matters.

It's ironic how I thought I had grown so much, but in an instant God sends me deeper still. I love how He reveals all that may not be right in the exact dosage. The true journey for me as I poured over Job's life with a new perspective is that indeed my ego must depart to make room for the trust that is long over due. To understand that "we serve a God who can be trusted even when his ways transcend our intellects."

Finally, I am humbled. I can acknowledge the pain as I watch Olivia have seizure after seizure, but I can also now see and accept that our lives are just a "vapor". There is freedom in clarity. Clarity as to my (and Olivia's) place in this vast universe. And as Mr. Patterson explains that "Until we are absolutely clear on the fundamental truth that God is indeed God, our imperious egos will forever be clamoring for God to explain himself to us. And if He chooses to remain silent, we will conclude he is incompetent or malevolent or uncaring or simply absent. And our acute, intense waitings will embitter and destroy us. That clarity is nothing more nor less than the virtue of humility."

I do not know the reason  ---- why have we been waiting so long? But I now know that although God is aware of my "warrior" capabilities, He is looking for the humble reverence that He knows I need in order to wait with PEACE - that 5 little letter word that I use a lot, but had such little understanding of it's soul quieting power.

Waiting gets to the best of us. I can't stand it - they couldn't stand it. He continues to say, "(Waiting) demands persistence when common sense says, "Give up." It says, "believe" when there is no present evidence to back it up. Faith is forged in delay. Character is forged in delay. The forge is the gap between the promise and the fulfillment."

"Humility and hope are the essentials of waiting. But it is humility that makes hope possible. Until you are clear that it is God, not you, who is the master and you, not God, who are the servant, you will feel your rights have been violated whenever you are forced to wait. You will resent your waitings and find every rationalization to take matters into your own hands. In other words, you cannot hope in God until you have ceased to hope in yourself." Even Abram second-guessed God, more than once. Does he remember Egypt and his poor decision-making? Apparently not because he got together with Haggar to "help" God along.

But God is patient with us, him...... me. After reading this book, I was hit with one of the big "Ah Ha" moments that could come across as common sense to someone who has never been in a pit as large as the one I have been living in. That, in the end, God is actually the one waiting --- waiting on us that is. "However long it takes, he can wait until we open our eyes. If we wait it is because God is waiting for us to become the people he wants us to be. Part of the waiting God does for us is to see us through the consequences of our bad choices." This is where we are at this point of time --- I feel it, I know it. God is so incredibly gracious to my family. He is there as we work our way out of the bad choices that were made in several different areas. Haggar called out as God told her to return to Sarai, ----- "You are the God who sees me" (Genesis 16:13). I know now he continues to refine me, and that He does see Olivia. In fact, He has been coaxing me over and over throughout the last thirteen years to just give her to Him. It was apparent to Beth McDonald when so many years ago I told her of the vivid dream I had. I was sitting on a grassy hill and all of a sudden this hand came out of the sky and was sort of cupped like it was holding water. I interpreted it as --- God is giving me information ---- he is leading me on this journey. Beth saw it differently, and I believe she is right. She thought it was God's way of saying - "Give her to me". Shamefully, I really thought I had some control.


More on waiting later......I don't want this post to get too long. ;)

I think what Ben Patterson's book taught me in simple terms is that first I need to have humility in order to seek Him  --- once there He can teach me how to believe and have hope --- so that my prayers can be powerful.

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