Olivia's journey has been rough - to say the least. Born perfectly healthy, her declining health since the dreaded MMR shot has always been a mystery - at least to those in the medical community. Her story briefly -

At 18-months she developed little "shaking spells" in the middle of the night. 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 we were instructed to give the vaccinations we had put off. Within a couple weeks these little "shakes" became large jerks that would catapult her to the floor. She stopped talking, stopped responding to our voice and appeared to enter 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 10 to 40 seconds.

Recently, we have made the decision to reevaluate the direction of the care she has received and go a different route. 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.....nope, nothing. This blog will serve as an outlet for others to follow our next attempt at helping our darling girl. The route we have chosen is to put her on a medical diet called the Specific Carbohydrate Diet (SCD). The resource I will use is a protocol developed by Dr. Natasha Campbell-McBride. Her book is titled "Gut and Psychology Syndrome". It is a natural treatment for Autism, Depression, ADHD and it has had some success with uncontrolled seizures.

Our beautiful girl

Our beautiful girl

Unfortunately, we have been part of the growing Autism epidemic in the United States. According to the USA Centers for Disease Control (CDC) 1 out of 88 (as of 3/12) children are diagnosed in the autism spectrum and sadly these numbers are growing every day. As a parent to a severely autistic child who has weekly-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. 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.

This blog is really about our journey over the last 11 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. It is our story; therefore, the opinions expressed on this blog are mine alone. I am not advising and /or commenting on the effects of the treatment I am doing with Olivia for any other person. She is under the care of several amazing physicians and therapists and I follow their recommendations.

Although I have strong opinions on certain practices of the conventional medical community, I do respect and am thankful for the excellent emergency practices that literally saved Olivia's life. I, like many others, question the preventative and/or wellness approach offered by this institution. 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.

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, September 30, 2015

Why Believe?

I am sure many people who have familiarized themselves with our journey wrestle with this very simple question ----- "Why on earth does she still believe her daughter will be healed?"

It has been 15 years. 15 years of searching, striving, reaching, trying, clinging (to hope), pursuing (and perfecting faith); and failing (miserably along the way). Who do I think I am anyway?

Failing is inevitable when no one seems to know what is going on. Therefore, believing can be difficult when left up to ones self to accomplish it. Believing can take us out of our comfort zone and propel us to where the magic happens. More often than not, this is easier said then done; especially when your kid is having seizures everyday and nothing seems to stop them. How is it I continue to believe?

This wouldn't be one of my writings if it didn't include one of the amazing songs that feels like it was written for me. Laura Story's "I can just be me" fits nicely.

I've been doing all that I can 
To hold it all together, piece by piece 
I've been feeling like a failure 
Trying to be braver 
Than I could ever be 
It's just not me 

So be my Healer, be my Comfort Be my Peace 
‘Cause I can be broken 
I can be needy, Lord, I need You now to be, be my God 
So I can just be me 

I've been living like an orphan 
Trying to belong here 
But it's just not my home 
I've been holding on so tightly 
To all the things that I think 
That satisfy my soul 
But I'm letting go 

So be my Father, my mighty Warrior 
Be my King 
‘Cause I can be scattered, frail and shattered 
Lord, I need You now to be 
Be my God so I can just be me 

‘Cause I was lost 
In this dark world 
‘Till I was finally found in You 
So now I'm needy, desperately pleading 
Oh Lord, be all to me 

So be my Savior, be my lifeline 
Won't You be my everything? 
‘Cause I'm so tired 
Of trying to be someone 
I was never meant to be 
Be my God, please be my God 
Be my God so I can just be me 

This song resonates deep within. I identify with its entirety. For so many years I have felt so alone in my belief that she could recover - feeling kind of like an "orphan" trying to belong in this wilderness place I have been living. I now know that the work the Mighty Warrior has completed in me over the last several years makes me able to finally achieve the meaning of my name, which happens to be Warrior. I would think that a warrior at heart is able to believe in a worthy battle, with impossible odds - don't you? All I know is that He makes me want to be brave. You need to be brave when immersed in the dark world of mental/neurological illness. It's dark. It's confusing. It's a mystery, it doesn't make sense and even the "professionals" do not have a handle on it. It literally sucks the belief right out of you.

be·lieve (biˈlēv/)
1.     accept (something) as true; feel sure of the truth of. To be convinced by, trust, have confidence in the truth, existence, reliability or value of something, consider honest, consider truthful, to have religious faith

2.    hold (something) as an opinion; think or suppose.

Believe, or........better yet believing.

I've been thinking a lot about the word believe. In order for the epileptic boy in scripture to be healed, believing was not optional for the boy's father. True believing........deep down.......absence of mistrust....hiding in there behind the fear, kind of believing. The kind that is sought after by those who suffer deeply, those who try to believe the concept that true hope is born in suffering. I needed to remind myself of that boy, and his father, for whom has taught me:

"Teacher, I brought you my son, who is possessed by a spirit that has robbed him of speech. Whenever it seizes him, it throws him to the ground. He foams at the mouth, gnashes his teeth and becomes rigid. I asked your disciples to drive out the spirit, but they could not." "O unbelieving generation, " Jesus replied. "How long shall I stay with you? How long shall I put up with you? Bring the boy to me." So they brought him. When the spirit saw Jesus, it immediately threw the boy into a convulsion. He fell to the ground and rolled around, foaming at the mouth. Jesus asked the boy's father, "How long has he been like this? From childhood, he answered. It has often thrown him into fire or water to kill him. But if you can do anything, take pity on us and help us. "If you can?" and Jesus. Everything is possible for him who believes." Immediately the boy's father exclaimed, "I do believe; help me overcome my unbelief!" When Jesus saw that a crowd was running to the scene, he rebuked the evil spirit. "You deaf and mute spirit," he said, "I command you, come out of him and never enter him again." The spirit shrieked, convulsed him violently and came out. The boy looked so much like a corpse that many said, "He's dead." Bus Jesus took him by the hand and lifted him to his feet, and he stood up. After Jesus had gone indoors, his disciples asked him privately, "Why couldn't we drive it out?" He replied, "This kind can come out only by prayer and fasting." Mark 17-29

My little one, Olivia's sister was fascinated this summer with Helen Keller. She read her books, watched the movie and did a bit of research on the Internet. She was spellbound to the point that she and her bestie, Summer, began to role play the characters of Helen and Anne Sullivan (Helen's teacher). As I watched them march around in our backyard, I instantly realized that Lauren was playing the part of Helen. She was stomping away, refusing to be held, refusing any help or direction that Summer (Anne Sullivan) was offering. Lauren acted out the fear, uncertainty and unbelief that one would expect from a little girl who was both blind and deaf. Complete darkness. As I watched this adorable free show, I soon felt as if God was bending my ear to whisper that I am much like Helen - only spiritually. The last three years had led me to a spiritually darkened place of confusion and uncertainty. Because Olivia's health had quickly deteriorated, I was blind-sided and began entertaining the fear again. He went on to show me how I was refusing to grasp what He wanted me to hear because my ability to ask Him to help me believe was slowly slipping away.

I have read and reread the Charles Spurgeon sermon 'The Secret of Failure' over and over. It speaks life into my questioning heart and keeps me focused on that very powerful word ------- believe.  Mr. Spurgeon says, "There was faith, even though it was mixed with unbelief. It was a faith that made him pray, as I have already told you, and the Lord Jesus Christ found out where the faith was. He had, as it were, broken the great black lump of dead coal that looked to be nothing but unbelief, and there was the living light of faith burning in the very center of it."

God has had me in the wilderness lately, even with my strong desire to "believe". Living it.......enduring it, learning from it and about it. The Beth Moore Deuteronomy study is timely and deeply educational for my wilderness encamped soul. This study details the Israelite's as they are poised on the east bank of the Jordan River, preparing to finally leave the faithless generation in their wilderness graves, and courageously fight for and possess their Promise Land. The ever-faithful Moses reviews their parent’s failures and gives them courage to fight for the land that God swore to give to their fathers. It calls them to remember who God is and what He has done for them. The mistakes made by their parents should not be repeated. I can imagine how anxious and expectant they felt and the thrill they must have had bubbling out of them at the prospect of finally leaving the wilderness of unbelief for their promise land. "And He brought us out from there, that He might bring us in and give us the land that He swore to give to our Fathers." Deuteronomy 6:23

Have you ever thought about Joshua and his time in the wilderness with all the unbelievers? He was one of two of the spy's, sent to scope out this so called "promise land" that actually believed they could defeat their enemies and take hold of it. He believed; yet he was left to wander in the wilderness for 40 years, right along side the unbelievers. I often wonder if he had any "human moments", like maybe deep down he was angry, even bitter at the rest of his contemporaries for their inability to trust and believe God. Have you ever wondered why we, like Joshua, seem to get pulled into other people's wildernesses? To believe, yet not receive.

God called Joshua to believe and he continued to, even when he was left in the wilderness. It is within these scriptures that I ultimately find the strength to believe --- even though it has been 15 years. The father of the epileptic boy encourages my heart. He teaches me as I fiercely cry out "I believe"; but humbles me in the next breath as my heart is sent after the One that can banish the unbelief that hides in the corners of my suffering. It took me years to figure this gem of a lesson out, but then again I was watching this everyday. And many times they didn't stop:


Always thankful for His guidance, and even more thankful for His love and protection over Olivia as we have navigated this painful journey.

"He brought us out from there that He might bring us in and give us the land that He swore to give our fathers." Deuteronomy 6:23

Monday, September 21, 2015

We are home! - Thank you for the prayers!!

Thank you so much for your prayers for my girl!

We were finally able to leave the hospital after a long 10-day stay. She is still not recovered from this huge setback and unfortunately lost a bit of weight, but we are home. Olivia is very fragile and extremely hyper sensitive to any upset in her system - especially when she gets sick.

If you choose to continue reading her story, you will learn my opinions on what I believe caused the decline in her health. It involves the wellness care she received as an infant, and subsequent advice during different stages in her life.

Today, though, I want to celebrate the amazing emergency medical treatment she received while she was at Minneapolis and St. Paul Children's hospitals. I am truly thankful for the caring, wonderful nurses that took care of my girl during that stressful and confusing 10 days and the open minded doctors at St. Paul Children's. They saved her life and I am forever grateful.

Tonight I thought I would share an entry to my journal originally written in August of 2013. We were well into the second year of her health crisis. These were very stressful days.


I’m tired...I’m worn...My heart is heavy...From the work it takes..To keep on breathing (believing) ...I’ve made mistakes....I’ve let my hope fail...My soul feels crushed...By the weight of this (my) world...And I know that You can give me rest...So I cry out with all that I have left...Let me see redemption win...Let me know the struggle ends...That You can mend a heart that’s frail and torn....I wanna know a song can rise....From the ashes of a broken life...And all that’s dead inside can be reborn...'Cause I’m worn...

I know I need to lift my eyes....But I'm too weak, life just won't let up.....I know you can give me rest....I cry out with all I have left...I'm worn....My prayers are wearing thin....I’m worn.....Even before the day begins....I’m worn....I’ve lost my will to fight...I’m worn.....So Heaven come and flood my eyes (Worn, Tenth Avenue North).

Worn - Tenth Avenue North Video

How symbolic this music video is for me. If you haven't taken the time to watch this 4 minute video please do. God has given me so much insight to my own struggling journey through this amazing song. I love how they use the "tree of life" which is barren and worn --- all the leaves dead and laying on the ground. In my rendition, Olivia is the tree, seemingly lifeless and consequently fruitless.  As I watch the sun's brilliance shine upon the tree causing the dead leaves to rise as they turn a healthy gorgeous green, I feel as though it's Him rebuilding her "leaf by leaf". While watching the leaves rise, my mind's eye sees an added scene take place behind the blinders of my heart. 

In this scene, God shows me the leaves being blown here and there as they desperately tried to stay on course to their proper home on the branches. As I watched this, I felt the nudge from Him saying that this 'wind" really represents the things that may have delayed His intent for Olivia's life. The wind, which has blown her leaves around, really represents the fear and anger I have entertained, the fighting Marty and I have partaken in, and of course the plan of the enemy's to stop her restoration. Add to this impatience, pride, unforgiveness and, of course, faithlessness. I've always been so focused on "chasing the wind". The wind is fast and that's how I wanted it to be  ----- hurry up, figure it out, move on with life. Unfortunately, in hind sight I now know I was too focused on entering my promise land with the wind instead of chasing His love, His will and His ways.

I want Redemption to win. Most think redemption means "the action of saving or being saved from sin, error, or evil: "God's plans for the redemption of his world"." For me and my purposes, and what I see and feel about redemption lies within a couple other definitions, namely, an act of redeeming or atoning for a fault or mistake or better yet - "Recovery of something". Redeem, Recover, Rebuild the three R's that are on my heart as I write about my hope for my girl.

Olivia is not doing well. Hasn't been for a while. Sometimes as I try to go to sleep at night, I often think to myself, "What is the point of this?" Really, what is the point? Laura kindly reminded me of the meaning of my name: warrior & defender. I have been a warrior, fighting for my baby girl, but what has the fight produced? I will say it again ---- What is the point? I love the three verses she included with the email:

Isaiah 61:3 To all who mourn in Israel, he will give a crown of beauty for ashes, a joyous blessing instead of mourning, festive praise instead of despair. In their righteousness, they will be like great oaks that the Lord has planted for his own glory. 

Isaiah 61:4 They will rebuild the ancient ruins, repairing cities destroyed long ago. They will revive them, though they have been deserted for many generations. 

Isaiah 61: 7 Instead of shame and dishonor, you will enjoy a double share of honor. You will possess a double portion of prosperity in your land, and everlasting joy will be yours. 

I love these words from her ---- "Faith is the "substance" - like actual weight and matter - your faith for Olivia & your family is not wishful thinking, it's faith - which is assurance! You know, that you know, that you know God is bringing healing. You can't not because it feels wrong or off whenever you entertain that because you already have the substance of faith (which is more than hope)."

I started a new study this past January ---- Beth Moore's The Law of Love - Lessons from the pages of Deuteronomy.  Unfortunately, this study started when Olivia was going downhill on the Phenobarbital and consequently, I was unable to participate in the video showings. Even when I did go, I was either late and/or I was so checked out due to Olivia's condition, I wasn't able to "soak" in the truth that Beth is able to deliver so easily. This summer I decided to buy the CD set and I am now doing a private study with this incredible teacher.

I love soaking in her knowledge. Deuteronomy is the inspired word of God, written by Moses. It is about a generation of people who had been in a long-term rebellion. They were the definition of faithlessness and because of their refusal to believe God; an 11 day journey to their promise land took 40 years. Wandering in the wilderness. Sounds familiar. I see now, I personally spent the last 13 years there.

For many the theme of this book is "Remembering what God has done for us in the past - how he brought us through". For the Israelites, the 40 years of desert wandering comes to an end in this 5th book of the Pentateuch (The first 5 books of the bible).

Moses retold the story of the spy mission that originally happened 40 years ago (numbers 13, 14) the spies were sent out determine where they should enter the land that God had given them. 'See, The Lord your God has given you the land. Go up and take possession of it as The Lord, the God of your fathers, told you. Do not be afraid; do not be discouraged.'

But, they were afraid. They grumbled...'the Lord hates us; so He brought is out of Egypt to deliver us into the hands of the Amorites to destroy us. Deuteronomy 1:27   This idea was delivered by the 12 spies - the majority of the spies were afraid of the giants. But there were two spies - Joshua and Caleb - that had a different report. They said the land was fertile - the enemy was vulnerable and God was on their side. When we focus on the negative we become fearful and immobile. We could choose to believe that God has brought us this far, why on earth would he leave us now? God's direction and promises are the positive that we could focus on - it sounds so easy, like a no brainer - but then feelings and negative circumstances enter the picture and we lose direction.

In the Israelites case, God had already promised their victory, fear that He wouldn't pull through left them stuck. They did not remember the signs and wonders they experienced in the wilderness - or the exodus, for that matter. In my situation, I believe the direction for Olivia is the Gaps diet while being supported by the Pfeiffer supplement therapy until the healing takes place. I have read over and over that when we are confronted with these important decisions we need to move out in faith. The stumbling block for me lies not in failing to focus on the positives, rather, trusting that God will overcome the negatives flips me downward. Maybe because there have been so many intense negative situations in such a short time ----- one after another.


This is so hard for me to read. Especially since I am still in my own personal wilderness. It also begs the question - why did Olivia spiral down in 2012?

When I first put her on the GAPS diet, she was doing amazing!!! She gained 10 pounds in 2 months and things finally felt like they were going in the right direction. It was then that we decided to take her off the supplements she was taking from Pfeiffer Treatment Center. Within a month of being off, she crashed and it's been an extremely hard road to get her back on track. Although I received a lot of "opinions" about the supplements and why I was giving her so many, it now appears that they were actually keeping her body stable.

This blog is really about my Wilderness Experience. I am hopeful that as I write you will see me walk into my Promise Land of healing for my girl and our family.

Do you feel as though you have been in the Wilderness lately?

Do you feel God's leading?

Friday, September 18, 2015

Happy Birthday Beautiful!

I am sitting here at the hospital on my sweet girls 17th birthday. What on earth has happened? Never in a million years would have I guessed this is where we would be at this stage of her life. Never.  It is almost as though her life has been suspended in time. The years go by and her generation has grown up, yet she is still in that hedged off space. A place that I haven't been able to reach her. In many ways I am still back here:

Here she is 10, before significant regression. This is before my heart was broken beyond repair. Now, she lay in a hospital bed recovering from what started as an infection and worsened by a bad reaction to a medication. 

As I am sitting here listening to the radio, Morgan Harper Nichol's song Storyteller comes on and tears start flowing down my face. Why? Because I know I need to tell her story.

On a Sunday evening I'm
looking back over all the years
and where I've been
Looking at old photographs
I'm remember
you were right there,
and you have been ever since

With every page that turns
I see your faithfulness

Oh the mountain where I climbed
The valley where I fell
You were there all along
That's the story I'll tell
You brought the pieces together
Made me this storyteller
Now I know it is well, it is well
That's the story I'll tell

There were some nights that felt like
They would last forever
But you kept me breathing
You were with me right then
And all that you have done for me
I could never hold it in
So here's to me telling this story
Over and over again

Take a listen to this wonderful song:

If you are listening to the music I have running, scroll down and hit the pause key so both songs don't play at once. :)

Thursday, September 17, 2015

Olivia is in the hospital :(

Hi everyone. Welcome to Olivia's blog. I actually started this blog in January 2012 and subsequently abandoned it in July of that same year when Olivia took a dive for the worst. I decided to resurrect it today as a sort of "Caringbridge" tool because so many amazing people have been reaching out with their support and prayers. Many of you have questions as to what exactly is going on with her. That question has been the journey of a lifetime; unfortunately, not in the good sense of the word.

I have renamed my blog www.restoringolivia.com. I tried to get www.oliviasrecovery.com (the former name) but it was unavailable. The more I thought about it though, the more I felt like it was time for a new beginning. My hope is that God will be restoring her in this new season; a season brimming with new knowledge, new treatment options and new hope.

Recovering and restoring are very similar, but I began thinking of the word recovery differently. I think of "recovery" in relation to recovering from a drug or alcohol addiction, an action of regaining possession of something, or "recovering" a body. It no longer feels right. With 'restore' I feel it's more about God's restoration of ones health. One source defines 'restore' as "to bring back to a state of health, soundness, or vigor", or better yet "to bring back to or put back into a former or original state".

When I googled "God Restores" I knew it was right because this verse popped up and filled my heart with confirmation:

"God, your God, will restore everything you lost; he'll have compassion on you; he'll come back and pick up the pieces from all the places where you were scattered. No matter how far away you end up, God, your God, will get you out of there and bring you back to the land your ancestors once possessed. It will be yours again. He will give you a good life." Deuteronomy 30:3-13 (The Message)

I claim this verse for Olivia.

This blog is intended to document her healing journey as well as my spiritual journey. For those of you who are interested in her story, feel free to read my past postings. This is our story - Olivia & my family. This is what has happened to our lives and in no way do I want to debate the controversial information I talk about throughout my blog. If you don't agree with it or like it you can choose to not read it. It is my family's reality and the story of a Momma fighting for her girl.

Sunday, July 1, 2012

Struggling faith

Courage doesn't always roar...
Sometimes courage is the quiet voice at the end of 
the day saying,"I will try again tomorrow" M.A. Radmacher

It's been a while - I know!  June was a crazy, icky month.

I think the end of June was the climax to a heavy, burdensome start to summer.  It really began with a disheartening meeting with school administrators on Friday, June 8th - literally the first day of summer.  What should have been a 15 minute meeting to discuss the final details of her move from the elementary school to the middle, soon became an hour and half of defensive lobbying for her right to stay in the "level" of classroom she was currently accustomed to.  This "administrator" felt her needs would be best served in a more "intensive" classroom with children confined to wheelchairs with high needs.  This is a classic example of people making decisions for another without a complete understanding of the whole situation.  This woman totally blew the seizure portion of Olivia's care into an unrecognizable animal that needed to be confined for supposed "safety" reasons.  I respectively waited, as she muddled and rambled through explanation after explanation of worrying about Olivia's care at 21, until I could no longer subject myself to what this woman was speaking over Olivia's life.  Seated along side Olivia's "core" team, the lovely women who have cared for Olivia for 7 years, I finally blew my top!  An hour and a half later, the paperwork was completed for her move to the school of my choice.  Later, I apologized to her teacher for my reaction, and to my surprise her team had gathered after the meeting and they all talked with excitement, seemingly impressed with my decision to stand up and stop the meeting's direction.

In addition to that POW WOW, the proclamation of my faith has been taking a silent beating.  Comments like, "oh, well, we think you should be realistic about how much Olivia could recover", spoken by a friend who frequently talks with others about the wonders and amazing miracles that can happen when you pray to God.  Seriously, isn't that what faith is? To believe in that "unseen"?  Where does the word "be realistic" get inserted?  What about Romans 8:24-25 :

"For in hope we are saved. But who hopes for what he already sees? However, we hope for something we have not yet seen, and we patiently wait for it.

Add to this, a hard month of taking her off a major supplement and I am certifiably crazy, or maybe just off my rocker (HA!) Sorry if I am a complainer!

I guess I didn't realize just how much I was struggling lately. Having a disabled child has it's financial pressures.  Treatments, supplements and expensive food top the list for financial burdens in an economy that has seen better days.  I am thankful for Marty's amazing ability to keep the finances rolling in ~ especially when it is extremely stressful at work.  Fear has a way of creeping in when financial uncertainties arise - don't you think?  :(  Big sad face that represents my fearful heart.  Certainly, I have been wrestling again in a way that is familiar, yet foreign to me.

Several Sunday's ago, I rolled out of bed and felt an immediate need to go to church. Olivia was up, so I had to get her stuff together and as always I was running out the door with a mere 5 minutes to spare.  Usually, when I run late Lauren will just come to "big kid" church with me, instead of going to children's church.  For some reason, on this particular day, she was adamant about going to children's church.  As I was finally seated, I made a big sigh and settled in.  The pastor's sermon was in a series called "APPS : powered by Proverbs".  He started with some really funny app jokes, but quickly moved into the main point of his sermon ------- Wisdom.  As I listened, I began to perk up and soon felt as though this sermon may have just been written for me and my recently acquired heavy heart.  He talked about Solomon - how, when asked by God what he would like, he chose wisdom on how to govern the people. Wisdom, the jewel I have been searching for.  The very thing I need in Olivia's situation.  I used to feel led.  I felt I was going somewhere.  Then, June rolled around, and nothing.  If you have checked my blog, my last entry was May 26th.  I felt like I lost that feeling of being led.....of knowing what to write, what to do next with Olivia.........and that familiar feeling of dread, of fear and hopelessness was present again.

The sermon opened my eyes to what could be my problem.  My heart had changed.  I was fearful (again?).  I apparently didn't trust God to take care of our financial situation (even though our past proves that he has over and over).  So, in a nutshell, I was overly focused on not wanting to lose the little bit of what we do have financially. There just seems to be obstacles, and then more obstacles.  The pastor talked about God giving wisdom to people who's greatest desire is for others. He asked, "Is it about you".  Solomon's heart was in the right place.  Mine, not so much.  I truly believe my faith was under attack and I was taken out by immense spiritual warfare.  I do not think I even knew I was going down.

It was communion that Sunday, and they had some special music.  One addition that stuck out for me was this beautiful young girl who played the violin.  For some reason, I just love the sound of a violin.  When Olivia was a baby, channel 2 had a special on young musicians and I remember seeing this beautiful girl with long blond hair playing the violin.  It may sound silly, but I thought that someday Olivia would do just that.  Seeing that young beauty and her violin on the Hosanna! stage brought me back to that earlier dream for Olivia.

As I looked up from the benediction my eyes rested on the group of prayer partners that had so graciously devoted their weekend to pray for others.  I was debating on whether I should go up or not? Do I have time with Olivia at home? Soon this questioning stream was cut off as I scanned the prayers partners....and my steps began as I spotted the angel that was put there for me - it was Jan!  She would soon be seeing me walking toward her in a desperate way, as I struggled to even say hi before I burst into tears.  I know she didn't know what to do.

I think she thought that something "serious" had happened to Olivia.  Finally, I was able to start talking with her, revealing what had just been revealed to me through the sermon.  She continued to lift my spirits until I told her my feelings about the violin dream.  She shifted gears and told me that Olivia will be playing the violin in heaven..........errrrk  wrong answer.  Again, I must remind myself that this jewel of wisdom, what He is teaching me is for me, not for others.  It would be easier if that were the case, but it isn't - it never has been.

She encouraged me to go home and stand in front of my bed and tell God that I trust Him with everything, that I trust He will catch me, and then fall back onto my bed.  I have to admit, when I finally did it, it did feel good.  She told me that the pastor met with the prayer partners on Friday evening and told them that he completely changed his original sermon - to the point that it did not match the sermon notes. It matched my needs perfectly!!! Thank You God!

So as I emerge from this darkness once again, I am overcome with thankfulness that God so patiently and graciously puts up with me.  That He alone can fill me back up with courage and suddenly I am brave again.  I feel as though I have humbly crawled back into his lap as he covers me with his Divine purpose for my life, if I can boldly claim it.  It reminds me of a song that currently resides in my head, the same lines repeating over and over:

Time stands still
beauty in all she is
I will be brave
I will not let anything
Take away
What's standing in front of me
Every breath
Every hour has come to this

One step closer

I have died everyday
waiting for you
Darlin' don't be afraid
I have loved you for a
Thousand years
I'll love you for a
Thousand more

I don't know if this song was written for two people in love, but how I hear it is a word from our loving Father who has indeed inspired me to continue to be brave in my beliefs of the precious gift awaiting my darling girl, and I will do so as long as He inspires me.

Thursday, June 14, 2012

Olivia & Lyme Disease - An unfortunate, inevitable diagnosis

I know what you are thinking.  Lyme disease? How on earth is this diagnosis possible? This kid really has bad luck ---- right? Luck definitely hasn't been on her side.

As I continue to learn how a normal little girl could essentially "fall apart" and completely lose her ability to talk, communicate and function as a human being, I continue to be amazed by the intricacies of the human body and their requirements for flawless function.

I first heard the words "Lyme Disease" as a diagnosis in May of 2010, and it was not for Olivia.  I had never thought of it, and neither had the doctors (both conventional and alternative).  What was even crazier was that I had never come across it in my research to find what went wrong and what could help. We have all heard about Lyme Disease in the news. I actually did know a child that had the disease, but in that instance he had those classic signs, mostly, I remember the severe joint pain.  He had to be around 7 or 8 and his legs hurt so bad he could hardly walk, all in a matter of weeks from the dreaded deer tick bite.  I think many of us think of Lyme disease as the debilitating joint pain with, of course,  the classic red bulls-eye rash that develops on the site.  What many people do not realize is that these classic cues to this disease only happens in 50% of the cases.  So, what's crazier is that 50% of people with Lyme disease have no idea that this opportunistic bacteria could be the cause of their health problems!

Neurological Lyme - no one really talks about the way this disease can effect people neurologically.  To many conventional doctors to  really "have" Lyme you must have the two major symptoms --- joint pain and a bulls-eye rash.  Not always, and what a shame, since the 50% that happen to go undiagnosed usually end up with some sort of chronic disease.

Neurological symptoms of Lyme disease are many and can vary from person to person.  These symptoms include:

Memory problems, poor reasoning, dyslexia, headaches, nerve pain, tremors, panic attacks, facial palsy, trouble swallowing, visual disturbance, mimic of neurological disorders such as MS or Parkinson's
In children -  behaviour changes, learning disabilities, headaches.

Other Lyme related illness'
Psychoses including hallucinations and delusions
Violent behaviour, irritability
Rage attacks/inability to control impulses/out of context crying spells
Anxiety/Panic attacks
Rapid mood swings that may mimic bipolar disorder
Obsessive-compulsive disorder (OCD)

With Olivia, I believe she was bit by a tick in the spring of 2005.  Out of no where, in 2005, she started having really bad headaches --- I mean really bad.  Walking, pacing, holding her head and crying,, sometimes screaming in pain. She had these debilitating headaches for a good year.  I had to give her ibuprofen and Tylenol every 4 hours and she still cried and held her head.  I took her to several doctors - even asked if they could be migraines but I was told over and over that people just don't have migraines every day like that.  She was in ABA therapy, progressing..... but then, all of a sudden she just spiraled down and lost everything.  The more I thought about it the more it made sense that Olivia could have contracted Lyme Disease.  The headaches just "started" one day --- and continued for what seemed like eternity.

When I first heard the diagnosis I admit I was skeptical.  On the long drive home from the doctor's office, I digested the information I learned from the doctor.  When I got home I hit the computer looking for any reputable resources and books to further my understanding.  This was just the beginning.  Confirmation after confirmation followed in the next several weeks.

A week later I had a college friend and her daughter over for lunch and she started telling me about a woman that used to sub for her (she is a teacher) that she reconnected with the last day of school.  When she saw her she asked where she had been.  "Oh Julie," the woman began.  "I think I have been to hell and back".  She went on to say that two years ago her 30 year old daughter was not feeling good --- they thought it was just the flu.  This flu just hung on, she felt as though she could not shake it.  About a year into it the mother asked the doctor to test her for Lyme disease --- it came back negative.  By April of this year the mother had to move in with the daughter because she could not even make it to the bathroom.  She was tested for everything under the sun and she progressively got worse.

Finally, she carried her daughter into the infectious disease department at Mayo and told them to figure out what was going on with her daughter.  She told them that she thought it was Lyme Disease, but she had several negative tests.  They just started treating her with the Lyme protocol and by June she able to walk normal!

Later that week, I dropped Olivia off at a babysitters house.  She told me of a friend of hers that had the infamous "bulls-eye rash", was treated with antibiotics but was never the same mentally.

In the last two years Olivia has acted like she has major joint pain/arthritis.  In fact, I remember my mom commenting that she walks like she's 70 years old.  Back when Olivia was five, we had to build a fence because Olivia would just take off and run ---- and boy could she run fast.  So fast, that if my mom was babysitting she could not catch her --- hence the fence:)

stimming ---- right on top of the mulch piles.  Since that time, Olivia could not keep weight on, she is so skinny --- which is another common characteristic of "chronic" Lyme disease.

I feel as though this may be another piece to her puzzle.  She was already immune compromised and at the time doctors did not test for Lyme disease like they do now, plus back then you were really only at risk and tested (so they thought) if you had the "bulls eye rash".

Minnesota ranks 8th in the nation for the number of Lyme cases.

We tested Olivia through the medical community - and it came back negative.  In the Lyme world that is of no surprise.  The medical profession uses a test called the ELISA test which is known to report false negatives.  And, as our doctor explained to me, unless you test within the first couple months of being exposed, the disease actually mutates and changes form so it no longer tests as an antibody in your blood.

We chose to take her to a Naturopathic doctor who specializes in Lyme Disease.  She ordered a more specialized test and a couple weeks later we got the results.  Olivia was POSITIVE for Lyme!  I knew something happened back in 2005.  The bad headaches came out of no where and she has continued to get worse and worse throughout the years.  2005 is when her seizures became big grand mal's  --- it's the year she was booted out of ABA ---- it was the year she started staying up all night, every other night.  In a nut shell she took a dive and I never knew why.

While talking with the Naturopath, she confirmed so many things, symptoms of Lyme disease that are soooooo Olivia  ------ like

Worsening seizures
Inability to gain and keep weight on
Losing her hair
Joint pain in her knees and ankles
Overwhelming fatigue and insomnia at the same time
Painful headaches
Weird breathing pattern that she developed a couple years ago

This bacteria wreaks havoc on your immune system. A weakened immune system isn't good for anyone, but for an epileptic it can be brutal.  Seizure thresholds are lowered when the body is sick, which generally results in more seizures.

Dr. W. Lee Cowden explains how he believes people get Lyme disease

In my opinion, Lyme disease is a condition that occurs because a person's total body load of toxins and other stressors has become conducive to the development of illness. As we go through life, we all accumulate a load of toxins from our environment.  That load includes chemical toxins, electromagnetic pollution, geopathic stress, heavy metals, as well as emotional traumas.   The sum total of all of these stressors finally creates a situation that makes a person susceptible to illness, so if that person gets bitten by a tick or mosquito that's carrying Lyme-related microbes, then it becomes easy for him/her to succumb to illness.

Dr. W. Lee Cowden is a board-certified cardiologist and specialist in Internal Medicine.  He has developed and refined treatment protocols for Lyme, cancer, autism, Parkinson's disease, fibromyalgia and chronic fatigue syndrome.  I enjoyed learning about the "beginning's" of the medical institution, starting way back with the "germ theory".  He explains:

Antoine Bechamp, was a contemporary of Louis Pasteur.  Bechamp said that when it comes to healing the body, the microorganisms are nothing, and that the body's environment, or terrain, is everything.  Pasteur, on the other hand, developed the germ theory, which is also called the pathogenic theory of medicine and which basically proposes that microorganisms are the cause of disease.  Bechamp was a very brilliant microbiologist, whereas Pasteur was a flamboyant chemist.  Even though Pasteur wasn't a microbiologist, he was more vocal and flamboyant, and his way of teaching practitioners at the time won out over Bechamp's.  On Pasteur's deathbed, he acknowledged that Bechamp was right in his theory and that he was wrong; however, by then it was too late, because Pasteur's ideas were already being put into medical literature and journals of the time.  Those ideas have been perpetuated in medicine to this day.

What's interesting is that the woman who developed the Specific Carbohydrate Diet (SCD), which is the basis of the GAPS protocol was a microbiologist, just like Antoine Bechamp.

In Olivia's case I tried many supplements, herbs and homeopathy - reaching out to the affordable treatment options offered in the alternative health arena.  But what I soon found was that the damage to her system was just too pervasive for a supplement or two to reverse.

I found Dr. McBride's opinion on Lyme very interesting.  She says:

Lyme disease is fashionable at the moment, as our medicine goes through fashions all the time; all sorts of problems are blamed on Lyme disease today.

Lyme disease is caused by bacteria of the family Borrelia which are transmitted by ticks. The natural hosts for ticks are wild animals, such as deer, squirrels, chipmunks, rabbits and other animals. Borrelia has been in existence for a long time, possibly longer than us, humans. Yet Lyme disease has become so common only recently despite the fact that contact with wild animals is very minimal in our modern urbanised populations. So, what happened? A very big thing happened in the recent few decades: our immune systems got compromised by our modern life-styles and the environment which we, humans, have created. A good demonstration of this is what is happening to the bee population in the
industrialised world: the bees are dying out. They are dying out from a couple of opportunistic infections, which they used to be resistant to only a few decades ago. Why? Because their immunity has been compromised by all the spraying of the countryside done by our modern agriculture. We, humans, are no different. When your immune system is not working properly, you become susceptible to all sorts of infections, which used to be harmless.

People who suffer from chronic fatigue, fibromyalgia, peripheral neuropathy, autoimmunity and other degenerative conditions, recently blamed on Lyme disease, are immune-compromised. The fact that Borrelia has been discovered by our science does not mean that it is the answer to these problems: when the immune system is disabled, all sorts of microbes can be at work, many of which we have not even discovered yet.  And indeed antibiotic treatment for Borrelia does not eradicate chronic degenerative
conditions, despite the fact that tests may show that this bacterium is gone. Very powerful antibiotics are used to treat Lyme disease, often intravenously and long-term. Antibiotics are not harmless! Healthy bodily flora is the most essential factor in keeping your immunity healthy. Antibiotics will destroy that factor very effectively, making your immune system even more disabled, making you even more vulnerable to Borrelia or any other pathogen.

So, if you suffer from a chronic degenerative condition and had a positive test for Lyme disease, don’t rush to have antibiotics. What you need to rush to do is to restore your immune system. Number one intervention is the food you eat! If you have digestivesymptoms, follow the GAPS Nutritional Protocol. If your digestion is OK, follow the Weston A Price-type diet. As your immune system starts working again, it will deal with Borrelia and lots of other microbes, which you don’t even need to know about. A good
percent of people, who test positive for Borrelia, have no symptoms and are healthy and well. Why? Because their immune systems are working properly! And make no mistake: well-functioning human immune system is infinitely cleverer, than any doctor or scientist!

What every one of us has to do is to find a balance, a harmony between the myriad of microbes living on us and inside us and our immune systems. So, focus on feeding, nourishing and nurturing your immune system, rather than killing,attacking or eradicating anything.

Her thoughts really line up with Olivia's journey.  Just like a small snowball let go at the top of a snowy hill, her condition started small but rolled and rolled out of control until it became bigger, more complex, and finally ---- out of control, much to big to be tamed by a "miracle" pill.

Something I find even more interesting is that Olivia finally did get that classic "bulls eye" rash, but not until I intervened with a radical switch in the foods that she was eating on a daily basis.  I may have mentioned earlier that I did have her on the SCD diet back in the winter of 2005, well, MY version of the SCD diet.  What I mean by this is that, I, like many parents in America believed that she, too, needed "treats" to feel good.  Why is it that as parents we feel bad if our kid doesn't have a sweet treat to enjoy?  Like we are depriving them of the good things in life to eat?  So, when she was on the diet she had plenty of nut muffins, fruit and vegetables, but none of the "mandatory" healing aids that are well described in the GAPS book.......namely chicken broth, fermented vegetables and homemade GAPS yogurt.  Is succumbing to that sweet tooth the only way to enjoy life?

Anyway, three weeks after I took Olivia off all grains and potatoes ------- WALLA she got the bulls eye!

The picture shows the first sign of the rash in the upper left frame.  In the following weeks, it spread out, and from the original bulls-eye small "shoots" went out, surrounding the circle.  From there, the "shoots" became small bulls-eyes of their own.  WOW is all I can say.  

I have learned that her getting the bulls-eye 6 years later happened because of the major shift I made in her diet.  More and more, people in the alternative health industry are talking about how grains and starchy foods cause inflammation to spread in a unhealthy body.  Taking Olivia off these grains and high starchy foods mobilized her immune system and it finally "recognized" the Lyme bacteria and set off the alarms (rash).  Getting the rash indicates a healthy system, unlike Olivia's which resulted in the organism spreading more and more, year after year.

Below is a news cast linking Lyme disease to autism.  If you are currently listening to the music on my blog, go to the grey bar at the bottom of the page and click on the "pause" button to listen to the following news video:

Autism linked to Lyme Disease

Now, take a look at the following video of Olivia - do you see the similarities between her and Mary Hendricks?


"We must never forget that what the patient takes beyond his ability to digest does harm." Dr. Samuel Gee

Saturday, May 26, 2012

More on seizures. It was an injury - not a genetic weakness.

injury /in·ju·ry/ (in´jer-e) wound or trauma; harm or hurt; usually applied to damage inflicted on the body by an external force.

I know what you are thinking..... How can seizures be a result of a damaged gut?

Abnormal gut flora, is present in anyone with digestive problems.  It starts out small, as many things do.  Sweet and starchy food feed pathogenic microbes, which in turn allows them to grow in number and damage the gut lining.  As I have learned, this damage is even escalated with antibiotic use.  Think Candida on steroids! Olivia had monthly ear infections which were treated with monthly doses of antibiotics.  In our modern day society (especially in the late 90's), ear infections = antibiotics. Antibiotics devastate the beneficial bacteria we all have in our bodies and it is not limited to our gut.  They change bacteria, viruses and fungi from benign to pathogenic, which allows them to cause disease. As I read Dr. McBride's information on antibiotics, I was shocked to read that they actually damage our immune system, which in turn makes us more vulnerable to infections, thus creating the "vicious cycle" of more antibiotics and more infections. Obviously there is a place for antibiotics, they can be a life saving drug. What about finding out WHY a child is getting ear infections on a monthly basis instead? Genius!

Dr. McBride says:
Proliferating pathogens in the gut start producing large amounts of toxins, which absorb through the damaged gut wall into the bloodstream and get carried to the brain. As the gut function deteriorates, the foods do not get the chance to be digested properly before they absorb through the damaged gut wall.  Once absorbed into the blood, these partially digested foods trigger very complex immune reactions (called food allergy or intolerance) which are capable of initiating seizures.  The combination of toxins and partially digested foods (being dealt with by the immune system) flowing from the gut to the brain, cause the epileptic activity.

This small paragraph does my soul a world of good! As I have mentioned in earlier posts, this is what happened with Olivia !!! At the beginning of this journey, and with the first appointment with an alternative doctor we ran all the tests that were suggested to run.  Allergy tests (IGE & IGG) included.  The results of these tests were good - she was only allergic to mold (IGE), and a couple foods on the (IGG) form. For those of you not familiar with allergy testing - IGE indicates a "true" allergy, which usually results in an immediate reaction.  IGG testing, on the other hand, is not a supported test in most conventional allergy clinics.  IGG is a "delayed" allergy reaction.  This type of allergy has been explained by several doctors as an allergy caused by the dreaded "leaky" or damaged gut (which Dr. McBride refers to in the above paragraph). IGG reactions are not immediate, but delayed, making them almost impossible to detect. Different foods break down at different speeds, causing different toxic reactions depending upon the food and your personal body chemistry.

Dr. McBride talks about one child's downward spiral, which ended with the development of a seizure disorder.  He was a normal kid, who at two was mentally and physically advanced for his age, was bright and well-coordinated. His  digestion was vulnerable - irregular stools and bloating. After he turned two, he began limiting his diet to sweet and starchy foods.  His digestion worsened, stools looked green and smelled of rotten fish. His outward appearance became thin, very pale with dark circles under his eyes.  By three he was lining up toys, becoming distant and became obsessed with things.  Just six months later he became clumsy and hyperactive, continuing to limit what he would eat. Then he started having absence seizures, he would roll his eyes up for a few seconds, then become unresponsive. Shortly thereafter, he had his first grand mal seizure.  Regression in his learning ability and development followed with all kinds of problems from the medication.  He started the GAPS diet, including the Introduction portion and was able to wean off the medications and the seizures reduced down to one or two very mild absences per week.

I love reading stories like this! I felt as though I was reading Olivia's story from the early years. I will never forget when she was going #2 15-20 times per day.  The smell did not smell human.  I know that because I am only giving you bits and pieces of her story at a time it may seem as though I sat back and watched these things develop in my child.  That is far from the truth.  I did what most moms would do.  I took her to my pediatrician (foul diaper in hand), who then referred me to a Pediatric Gastroenterologist.  I will never forget this appointment. Just thinking about it causes tears to well up in my eyes.  "No", he said, very confidently, "your daughter's apparent regression is not caused by these digestive problems." I explained the number of times she went #2 throughout the day, and pleaded with him to look at the contents of the diaper I conveniently had in my bag.  But he refused.  I really don't think he believed me.  I mean, who goes that much? He ordered a basic smear test, which eventually came back saying "conclusively" that everything was normal and told me there was nothing he could do.  Sadly, those were my trusting days, so I believed him.

Well, not surprisingly, one year later we repeated the allergy tests and within that year she had positive IGG tests for almost every single food! Her injured gut, which was first indicated by her foul stools and multiple stools/day, was worsening.  The damage was deep, and the "experts" of the day were blatantly uninformed, usually by choice.  This apparently was not taught when he went to school, therefore it did not exist.

Unfortunately, in Olivia's case the "injury" wasn't just once.  The second injury to her fragile immune system was the MMR vaccination (she is a registered VAERS child).

This song has been repeating itself in my head since I sat down to write this post:

Can't you see everything happens for a reason
There's a time, there's a place for every season
He knows what's best for you
So don't be afraid.

The same God who was with you then is with you now
The same God that led you in, will lead you out
So take all the fear and doubt
Go on and lay them down
The same God, the same God is with you now.

Just keep holding on
Oh keep holding on     (The Same God - Newsong)

That's my cue - I will keep holding on ;)