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.

Sunday, July 3, 2016

Surviving Yet Another Detour to our Promised Land - Keppra drug reaction and weaning.

Are you as upset as I am? Dang it, she was doing so well and then we get thrown off track again. Another detour on our trek to the Promised Land of healing.

Do I sense a snicker? Ha! Yes, despite the long road and the constant "wandering" off course, I still believe she can fully recover. I know ---- for some its painful to witness such faith. I have plenty of people in my life whose body language screams uncomfortableness as I "cling" to something that is an impossibility in their mind. But that's the point. God gives us all faith to believe in the work he's doing in our own lives -- He doesn't necessarily give it to those outside of it. Not to get too offtrack, but what do you think the scene was for Abraham as he met his friends at the watering hole 16 years after his original announcement that he would be a father in his elder years?  Did they snicker and whisper to each other as he walked away? I'm sure they thought he had developed some sort of dementia!

I know my story isn't like Abraham's, the grandeur of his promise is too great for words - and my journey. I am just a momma......Standing in front of my God.......Looking for direction on how to heal my girl. I am willing to walk this out with you and share my journey, even if it doesn't make sense. Believe me --- I know it may look impossible. That's why God is in the drivers seat, and this time I cannot skooch him over when the need to control the situation overwhelms me. Trying to control, and actually thinking that I could reminds me of Natalie Grant's incredible song King of the World.

"I tried to fit you in the walls inside my mind, I try to keep you safely in between the lines, I try to put you in the box that I've designed, I try to pull you down so we are eye to eye

When did I forget that you've always been the king of the world?
I try to take life back right out of the hands of the king of the world
How could I make you so small
When you're the one who holds it all

Just a whisper of your voice can tame the seas
So who am I to try to take the lead
Still I run ahead and think I'm strong enough
When you're the one who made me from the dust

This kind of faith is almost childlike - right? Jesus said we need it (Matthew 18:2) and David had it when he defeated Goliath (1Samual 17:37). I was reminded of this "childlike faith" truth while listening to the "Grow Up" sermon series from Hosanna! church. God certainly wants to "grow us up". He wants strong, spiritually mature believers that retain faith that is similar to a child's trust.

My faith has drawn momentum from devotionals like this one from Streams of the Desert':

The "all things" do not always come simply for the asking, for the reason that God is ever seeking to teach us the way of faith, and in our training in the faith life there must be room for the trial of faith, the discipline of faith, the patience of faith, the courage of faith, and often many stages are passed before we really realize what is the end of faith, namely, the victory of faith.

Real moral fibre is developed through discipline of faith. You have made your request of God, but the answer does not come. What are you to do? Keep on believing God's Word; never be moved away from it by what you see or feel, and thus as you stand steady, enlarged power and experience is being developed. The fact of looking at the apparent contradiction as to God's Word and being unmoved from your position of faith make you stronger on every other line. Often God delays purposely, and the delay is just as much an answer to your prayer as is the fulfillment when it comes.

In the lives of all the great Bible characters, God worked this. Abraham, Moses and Elijah were not great in the beginning, but were made great through the discipline of their faith, and only thus were they fitted for the positions to which God had called them. For example, in the case of Joseph whom the Lord was training for the throne of Egypt, we read in the Psalms:

"The word of the Lord tried him." It was not the prison life with its hard beds or poor food that tried him, but it was the word God had spoken into his heart in the early years concerning elevation and honor which were greater than his brethren were to receive; it was this which was ever before him, when every step in his career made it seem more and more impossible of fulfillment, until he was there imprisoned, and all in innocence, while others who were perhaps justly incarcerated, were released, and he was left to languish alone. These were hours that tried his soul, but hours of spiritual growth and development, that, "when his word came" (the word of release), found him fitted for the delicate task of dealing with his wayward brethren, with a love and patience only surpassed by God Himself. No amount of persecution tries like such experiences as these. When God has spoken of His purpose to do, and yet the days go on and He does not do it, that is truly hard; but it is a discipline of faith that will bring us into a knowledge of God which would otherwise be impossible.

I've done several bible studies on the Israelites Wilderness/Promise Land journey and with each one I gain a deeper understanding of just how similar my modern day trek (16 years) is to the 40 year one detailed in the bible. Like them, I have been frustrated, grumbled, complained, struggled with humility, misunderstood His leading and regrettably let fear control my decision making.

Photo credit: Priscilla Shirer/Lifeway Press

I no longer get bogged down in the "whys" of God's choice for Olivia's life, just as the Israelites had to accept that God chose the wilderness for his "chosen". They could see it as they camped that first night in Etham. I, on the other hand, was blindsided as my perfect baby girl developed "complex" symptoms no doctor could explain, and then detour after detour as attempts were made to straighten her path.

The detours. Ugh! Some days I wonder how we can be so unlucky, when each treatment begins with promise only to end with a downward spiral as my mind would scream, "Why do you hate me so much?" Abiding in Him is the key to my promise land. If I am abiding in Him, then the darkness of fear, doubt, hopelessness and worldly (i.e. logical) thinking of impossibility cannot detour me. Again, sounds easy to do when opposition isn't running rampant, blowing the pieces of her complex puzzle here and there.

How do I continue to believe that God is leading me despite not having a visible "pillar of cloud by day and a pillar of fire by night (Exodus 13:21-22), as the Israelites did? By developing a personal relationship with Jesus, which ends up being a journey itself. Believing, faith, trust - so easy to type the words out, but to actually wholeheartedly adept the qualities of these words can be a long journey. At least for me it was.

Currently, I am weaning Olivia off the Keppra and it has gone smoother than I imagined, but she is still having some tough dips as each change is made. I struggle with the constant need to badger myself for allowing her to be put back on this dang drug - especially with the months of weaning in our future.  Wasn't it Albert Einstein who said "The definition of insanity is doing the same thing over and over and expecting different results". So. True. No wonder I feel on edge when talking with Neurologists about the next drug to try. Insanity.

But....as she comes down the original miraculous effects of the Medicinal Cannabis are resurfacing. The walking unassisted. Improved sleep and eating. 95% reduction in seizure activity. Calm. Peace. And more of this:

Smiles. Engaging....similar to a new born baby recognizing you for the first time. Fresh beginnings. Hope renewed. I could go on and on about her good days.

The more I study the Israelites path, the more I can relate, and it extends past their year long camping trip at the base of Mount Sinai where God pulled them close to solidify His covenant with them. We all know they wandered for 40 years, but as I dove into the details a bit further, I learned that 38 of those years were spent circling a city just to the south of Canaan called Kadesh-barnea - right on the edge of their Promised Land. They sent in 12 spies, they came back with a detailed description of how fruitful the land was, but all but 2 gave a bad report of the strong and powerful tribes that lived there. They were afraid and they chose to stay put.

Priscilla Shirer's "One In A Million" study and other commentators talk about these "spies" in a little more detail. Each tribe chose one leader --- 12 tribes = 12 spies. What's interesting is that these chosen "influencers" were the smart ones, everyone looked up to them and valued their opinion - they were the decision makers. And they were wrong. They were afraid and did not believe that God would do what He said He would do and they influenced nearly 2 million people to not believe for God's promise. Only 2 of the original two million Israelites made the trip to the Promised Land - Joshua & Caleb - the 2 spies that believed God, the rest died in the Wilderness, never receiving the bounty God had planned for them.

It made me think about the "influencers" in my own life, and in our situation. For 16 years I have taken Olivia to doctor after doctor, specialist after specialist, expert after expert and they all have been wrong. I've been circling around the same old information, trying the same set of drugs and/or supplements and have been stuck just outside her Promised Land of healing. I remember when I first heard of Charlotte Figi - the little girl with uncontrolled seizures in Colorado whose seizures miraculously stopped with Medicinal Cannabis, I was filled with a renewed hope. I talked with her Neurologist about possibly moving out there to give it a try, but she didn't believe it would help her ---- and she influenced me and I chose to stay put. And that was that. I believed the doctors negative report over the passion and belief God was working in me that she could in fact recover. My influencers tore down my hope and I wallowed for years in my own little Kadesh-barnea, just outside God's abundant fullness of health.

I have new "influencers" now......new experts to listen to and as we work through weaning issues and optimal dosages for the miraculous "new drug" called Medicinal Cannabis, I can officially kiss my Kadesh-barnea goodbye (and good riddance) and finally begin my walk toward the Jordan. Natalie Grant sings about how we put God in a box that we've designed, but in reality we all have people and "experts" in our lives that contribute to the box and actually help press down the packing tape. I just want to stop feeling foolish. Feeling foolish over decisions that at the end of the day were made "under the influence". I'm sure we have all experienced these regrets, but as I look into the eyes of my blue eyed beauty I can't help but cry myself to sleep because of the pain she has been in for her entire childhood.

I want her to be the One in A Million - and so does God!

"There are two ways to be fooled. One is to believe what isn't true; the other is to refuse to believe what is true". Soren Kierkegaard

Next on my list of study is........I definitely have the faith, but is it God's will to heal her? This is actually a question that a couple pastors I have talked with have asked --- hmmmm. That blog post coming up next.


1 comment:

  1. Keep the faith, I am praying for you and your daughter. I have epilepsy and the meds (keppra) are killing me. Fear has kept me from trying alternatives.