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.

Tuesday, January 31, 2012

Green Pastures Blue Ice Fermented Cod Liver Oil

Today, I added the recommended Green Pastures Blue Ice Fermented Cod Liver Oil.  For years, Olivia took Nordic Naturals EPA/DHA fish oil pill.  It seems as though I am learning more and more how most GAPS patients actually are incapable of breaking down most food, much less supplements.  This point really hit home for me since Olivia has not gained weight since 2008.  She was getting the best of nutrients in a compounded vitamin from Pfieffer, but seemed to not benefit from it.

Cod liver oil has been used as medicine since the 18th century.  Parents used to give it to their children daily to help maintain good health - remember Nana the dog in Disney's Peter Pan giving it to the children at bedtime!

Cod liver oil provides Omega-3's, natural forms of  Vitamin A & D and cholesterol.

Confirmation is an awesome feeling.  For years I was told that Olivia is getting the best of the best.  She was on an amazing diet....whole gluten-free grains, fresh organic vegetables and fruits, high quality pharmaceutical grade vitamins and supplements but her health continued to decline. All this didn't matter because all these nutrients had to pass through a very compromised digestive tract that could not digest, metabolize and convert any of these nutritional foods into nutrients for her body.

In the case of vitamin A, Dr. McBride describes how in a GAPS patient it is "virtually impossible to obtain Vitamin A from fruits and vegetables".  Olivia was surely deficient in many vitamins, including Vitamin A.  She goes on to explain that "digestive system problems and vitamin A deficiency are in a 'chicken and egg' relationship.  Poor digestion causes vitamin A deficiency, but vitamin A deficiency can cause digestive problems.  In fact, gut disease is one of the symptoms of Vitamin A deficiency, because the gut lining is one of the most active sites of cell production, growth and differentiation.  Leaky gut and malabsorption are the typical results of vitamin A deficiency."  No wonder her gut has never healed.  The many stool tests that were performed on Olivia always came back with dysbiosis, it never really went away.  Hence the inability to break the vicious cycle.

I did not know that vitamin A plays a huge role in the strength of your immune system.  Dr. McBride mentions that the earliest name for it was "anti-infective vitamin.  The ability for the body to respond to bacterial, parasitic and viral infections is compromised.  Could explain the Olivia's Lyme disease, since the vitamin A deficiency would have made her more prone to infections since her immune system was not functioning properly.

Apparently, correcting this deficiency may take some time, and her body will need to adjust to finally getting these nutrients that probably have been missing for 10 years:/ Olivia's hypersensitivity to change is still a factor to consider.  We will see how it goes:/

Saturday, January 28, 2012

GAPS Diet Class - Second One

Today I was nervous for the day to begin.  Yesterday was a really tough day - 4 seizures to be exact.  When we started this,  I knew we were in for a rollercoaster of ups and downs.

Fortunately, I was lucky to find Dr. Carrie Clark.  She is a certified practioner of the GAPS diet in the Twin Cities area.  She offers GAPS diet classes where she shares a wealth of information.  I am so very thankful!

What I learned today:

There are four pieces to healing a chronic illness through the GAPS diet:

1.  Remove offending foods
2.  Replace nutrients that are missing
3.  Repair the damaged gut lining - with the Bone Broth
4.  Reinoculate - with lots of probiotics - mainly with homemade fermented vegetables and homemade

Olivia ended up having an ok day - no seizures.

Tuesday, January 10, 2012

Dr. McBride Explains Seizures in GAPS patients

She has a full chapter in her book about epilepsy.  In her opinion and her experience about 30% of delayed children suffer from various "fits".  These "fits' can range from crying and tantrumming on up to grand mal seizures.  She talks of one of her patients who's parents say when their child starts tantrumming, there is nothing the parent can do to stop it ---- it's almost like it is a seizure. I could really identify with much of this chapter, especially the part where parents of patients with seizures talk about seizure meds and the feeling that if you do not have your child on them you may get in trouble with the authorities!  Even when they did not work.  She confirmed much of the information I have read about seizures; that medical science still does not know what exactly makes the "electrical storm" that has been labeled as an epileptic seizure, and how it is still a mystery how anti-convulsant drugs work (when they do -  that is).  I found it interesting that turn of the century medical doctors had a 95% seizure control rate when introducing "seizure diets" to patients.  This research was abandoned by most doctors in 1938 when the first anti-convulsant drug was discovered. The Ketogenic and MCT Oil diets were created for just this purpose, but are extremely restricting.  Olivia was on the Ketogenic diet and did not do well.

Dr. McBride offers her explanation on why and how these diets work for many who suffer with uncontrolled seizures.  The one aspect between the above mentioned medical diets and the GAPS diet is the low carbohydrate content, especially the exclusion of high starch complex carbs.  Refined sugars and heavy starch vegetables feed pathogens in the body, not only in the gut, but everywhere.  When restricting carbs, the pathogen activity is also severely restricted.

Dr. McBride believes that the majority of epileptic seizures are the result of two factors, which work in combination:

1. Damaged gut wall.  A damaged "leaky" gut wall lets in a plethora of very toxic substances that reach the brain and trigger the seizures, fits, tics, spasms, involuntary movements, etc.  The toxins are produced by the abnormal gut flora, and the mixture of toxins can be quite individual, depending on what kind of pathogens the person has in the gut.  The damaged gut wall also lets through partially digested foods, activating immunity and creating food allergies and intolerance, which in themselves can manifest as seizures, fits, tics, spasms and involuntary movements.

2. Nutritional deficiencies.  In a person with abnormal gut flora the gut is in no fit state to digest food properly and to nourish the body.

Unfortunately, these two factors explain Olivia to a tee. The GAPS diet has been designed to take control of pathogens in the gut and to heal the gut.  As the gut wall heals, the level of toxins and partially digested foods getting through drops dramatically, so the brain has a chance to start functioning normally.  At the same time the GAPS diet provides highly nutritious foods, while making the digestive system fit enough to digest them; these factors quickly remove nutritional deficiencies which could have been contributing to seizure activity."

It makes so much sense to me now.  Olivia's seizures, I believe, are an unfortunate result of her body being toxic.  It is probably why she had so many severe side effects to any medication she was on.  With her damaged gut, any and all of the medications went directly into her blood stream, since there was no filter.  It also really explains why the Lyme treatment was so detrimental for her.  Many doctors characterized Olivia as a "full glass of water", meaning that any change, illness, or bump in the road upsets her sensitive system resulting in "major spilling".

In her book, Dr. McBride quotes Dr. John M Freeman, MD, a world-renowned expert in treating epilepsy from prestigious Johns Hopkins Medical Institution:  "We do not understand much about epilepsy.  Little is known about the mechanisms by which seizures spread throughout the brain.  We do not understand why seizures occur at one moment but not at another, or why one child's seizure threshold is lower that another's.  To be truthful, little is known about how various anti-convulsants work either."

Friday, January 6, 2012

Putting her on the Introduction diet

Over the years I have been given the "seriously, just accept it" face whenever I begin talking about a "new" treatment option.  Believe me, talking about this diet intervention has made many eyes glaze over.  Faces and comments like that don't even faze me anymore.  God put this seed of hope in my heart, not the worlds;) I have to admit, I do feel different at the start of this.  There is increased knowledge and understanding of what I did wrong the first time I wandered down this path.  A second chance.  That is what this is.  God is giving me a second chance to try the diet.  A second chance to get it right. It just reminds me of the Patricia Shirer Jonah study I did last fall.  She talked about how God loves to give people that second chance, even when they run 500 miles away to avoid the assignment he has given!  I don't think I so much ran away, as much as I was lost in confusion mixed with desperation. Whatever ----- his timing is perfect, right?

So, I started the into diet slowly the first week of December.  I first started giving her a cup of broth a day.  I took away some of the foods that are recommended in a stage further down and took a "wait and see" position.   I don’t know why I am so nervous.   In addition to the broth, meat and well cooked vegetables, I will be putting her on homemade fermented vegetables.  I know this may seem odd, but it is well studied and documented.  Thank God I have my mother!!! She is making the broth, and soon will start making the homemade fermented vegetables.

She went through many different phases -

            REALLY weak and could hardly pull herself up from a laying position.

            Overly congested.  Having a hard time breathing - SOOOO stuffed up.

            Walking around like she was drunk, running into walls, tripping.

The whole month of December was pretty hard.  She was so sick, so congested and so very out of it.  Her and her string – that is the only thing she could focus on.  She hasn’t been able to be present and do something as simple as open a gift for 11 years.  Unable to think, unable to participate…..unable to live her life without a constant feeling of something miss firing in her brain.  I will never forget that first Christmas after this happened to her. The heaviness hung in the air as we sat down to open gifts and all she wanted to do was stim on the ribbons. Marty and I went to bed and we both just laid there crying softly to ourselves.  The despair was overwhelming and laying there in the dark of the night just sealed that hopelessness even more intently. It seems so weird it was 11 years ago!

One day over Christmas break, we were running up to Brooklyn Park to meet with a salesman for an adapted stroller for Olivia.  She had a really big seizure in the car.  Lauren was in the back and she just started screaming “I hate those seizures…..I want to punch them out of her….I hate watching her throw up.....I finally pulled over and looked back to see her curled up with the biggest alligator tears that just kept rolling down her chubby little cheeks.  It's hard for all of us to watch them.

Since Olivia went through the initial "die-off" stages of the Intro diet, her seizures have been kept to a minimum.  We even took her off all of the Pfeiffer morning compound all at once (5 capsules), and she seemed to handle it pretty well.  I know this was due to the diet.  In the past, if we took her off 1/2 of a capsule she would go through a weeks worth of seizures as her body adjusted to the new dosage.  The hypersensitivity is down for sure!!!  She has also GAINED 3 POUNDS!!!!!!

Further explanation of the GAPS diet

Dr. McBride summarizes what a GAPS patient has to avoid:

  • All grains and anything made out of them: wheat, rye, rice, oats, corn, maize, sorghum, barley, buckwheat, millet, spelt, triticale, bulgar, tapioca, quinoa, cous-cous. This will remove a lot of starch and all gluten from the diet.
  • All starchy vegetables and anything made out of them: potato, yams, sweet potato, parsnip, Jerusalem artichoke, cassava, arrowroot and taro.
  • Sugar and anything that contains it.
  • Starchy beans and peas: soybeans, mung beans, garbanzo beans, bean sprouts, chick peas, faba beans.
  • Lactose and anything that contains it: fluid or dried milk of any type, commercially produced yoghurt, buttermilk and sour cream, processed foods with added lactose.
I want to point out that this diet is a healing diet, therefore, it is not meant to be followed for a lifetime.  Most people need to be fanatically strict for two years.  After the two year period, grains and starchy vegetables are introduced slowly.

The GAPS Introduction diet is limited to homemade bone broth, meat and vegetables and is broken down in stages.  People move through these stages at individual rates.  This movement is based on how much healing has happened and if they can handle the addition of the next food item.

A list of the recommended/allowable foods on the full GAPS diet can be found at:

Thursday, January 5, 2012

Putting her on the diet - Explanation of the GAPS diet

In November I purchased a book called "Gut and Psychology Syndrome, Natural Treatment for Autism, Dyspraxia, ADD, Dyslexia, ADHD, Depression & Schizophrenia" by Dr. Natasha Campbell-McBride, MD.  It is written by an English doctor who cured her severely autistic child with the SCD Diet.  I had known about this book for several years, in fact, Dr. Hruby even sent it home with me after one of Olivia's appointments.  I don't think I even cracked it open since she was under the care of Pfeiffer, who did not believe in the SCD diet.  I bought the book because Wendy had actually been reading it and I was curious as to a couple things she had talked about.  I finally broke down and bought it and can't put it down! In a nut shell its the most AMAZING book, and it speaks to our situation - specifically to Olivia's story - including her seizures!

 I had Olivia on the SCD diet way back in January of 2005.  I started it and the psychologist who ran her ABA therapy said, "Whatever you are doing, keep it up, she is like a different kid!"  So, that was winter 2005....I think she was bit by the tick in the spring of 2005 and by September 2005 she had regressed so far  that she was "dismissed" from therapy.  The psychologists last words to me were, "We don't know what happened, she was learning and then she just lost it ---- fast."  From there, we had our first appointment with Pfeiffer Treatment Center and the doctor told me to take her off the diet.  They didn't believe in, or support the diet.

How sad.....I really felt like I had finally found something during that winter of 2005.  I even got a hold of the SCD biologist and author, Elaine Gottschall, of the SCD book (Breaking the Vicious Cycle) through email and she emailed me back ---"Kelly, You are on the right track, keep going!".

I didn't keep going though.  I believed that Pfeiffer knew more than me and I followed their instructions and took her off the diet. That was the beginning of the worst 7 years for sweet Olivia.  Within this time period her seizures increased, her sleep worsened (at the worst she was up every other night all night long), she hit her permanent front tooth out of her mouth, broke her left femur bone and her left arm, she slit her lip wide open and she had a prolapsed rectum.

After reading this book I feel as though I understand the SCD diet more thoroughly than I did the first time around because Dr. McBride goes deeper into the explanation of the gut damage and the cascading effects to the body.  I also feel as though she explained how important the introduction portion of the diet was, which wasn't really talked about in the Breaking the Vicious Cycle book.

Gut and Psychology Syndrome (GAPS) essentially is a digestive disorder.  Dr. McBride explains that the diet used to treat this damage is the Specific Carbohydrate Diet (SCD), which has been around for 60 years.  The diet itself was invented by a pediatrician, Dr. Sidney Valentine Haas.  He spent years researching the effects of diet on celiac disease and other digestive disorders.  He found that patients with digestive disorders could tolerate dietary proteins and fats fairly well. But complex carbohydrates from grains and starchy vegetables made the problem worse.  He treated over 600 patients with excellent results.

Elaine Gottschall's daughter suffered from severe ulcerative colitis and seizures. They went to see Dr. Haas in 1958.  After two years on the SCD diet her daughter was completely free of symptoms.  Since the success of SCD with her daughter, Elaine Gottschall over the years has helped thousands of people, suffering from Crohn's disease, ulcerative colitis & celiac.  But the most dramatic and fast recoveries she has reported were in young children who, apart from digestive problems, has serious behavioral abnormalities, such as autism, hyperactivity and night terrors.  She has devoted years of research into the biochemical and biological basis of the diet and has published Breaking the Viscous Cycle.

I read Elaine's book and felt as though I implemented the diet correctly in 2005 - WRONG!  Dr. McBride STRONGLY encourages doing the Introduction Diet because this stripped down version of the diet is the only thing that heals and seals the gut lining - which has always been Olivia's issue.  When her seizures started, she was going #2 20+ times/day.  It really didn't even smell human. And even though the number of stools/day has significantly dropped, she was still going #2 between 4-6 times per day.  In fact, my mom just commented about this very thing last summer - that her going #2 so many times hasn't changed at all throughout all treatments/changes with supplements etc.  I talked with her Pediatrician about this at her well child visit in September.  He pulled out her growth chart and showed me that Olivia has weighed between 62 and 64 pounds since 2008!  Is that crazy or what!  She has grown 3 inches since 2008, but has not gained any weight.  We both agreed that this darling girl was getting amazing food, but her body was unable to absorb any of the nutrients.  There was lots going in, but even more coming out.

I have to admit. The Intro diet made me a little nervous.  It consists of lots of HOMEMADE meat broth, well cooked non-fibrous vegetables and meat, and meat fat, that's it.  Fear was my companion as I started introducing this change in her food.  I mean, really, she looks a wee bit healthier than someone who has been in a concentration camp and something had to change.  She eats very high quality and a high quantity of food and so far it hasn't gotten her anywhere on the growth charts.  The thought of cutting back on her food made me very nervous. But, as I learned and studied the diet more, I realized that most of the food Olivia was eating was probably irritating her gut lining which was just continuing the vicious cycle in her gut wall.  The allergy tests we had done on Olivia stated she was allergic to almost everything. Dr. McBride completely explained this in a way that I was like - Daaaaa - makes complete since.  She says:

"The reason for allergies and food intolerance is a so-called "leaky gut", when the gut lining is damaged by abnormal micro flora.  Foods do not get the chance to be digested properly before they get absorbed through this damaged wall and cause the immune system to react to them.  Many people try to identify which foods they react to. However, with damaged gut wall they are likely to absorb most of their foods partially digested, which may cause a immediate or delayed reaction.  As these reactions overlap with each other, you can never be sure what exactly you are reacting to on  any given day.  Testing for food allergies is notoriously unreliable:  if they had enough resources to test twice a day for two weeks, they would find that they are "allergic" to everything they eat.  As long as the gut wall is damaged and stays damaged, you can be juggling your diet forever, removing different foods and never getting anywhere.  It is best to concentrate on healing the gut wall with the Introduction diet.  One the gut wall is healed, the foods will be digested properly before being absorbed, which will remove many food intolerance's and allergies."

She says she has seen cases where people have skipped the Introduction Diet and it leads to long-term lingering problems, some difficult to deal with. (OLIVIA!!)

Tuesday, January 3, 2012

Olivia's Health/Development Condition Statistics

Weight - 62 pounds
Words - 0
Communication ability - pull someone to TV if she wants a movie, otherwise we do not know what she wants/needs
Favorite activity - stiming with string

Sunday, January 1, 2012

Thinking about starting the GAPS diet

My life has led me down this path that's ever winding
Through every twist and turn, I'm always finding
That I am lost again
Tell me when this road will ever end

Give me a revelation
Show me what to do
'Cause I've been trying to find my way
I haven't got a clue
Tell me should I stay here
Or do I need to move
Give me a revelation
I've got nothing without you  (Third Day - Revelation)

I am sure I am not alone, wanting a revelation about what to do in a situation that seems to be going nowhere.  For 11 years this was a daily plea. It seems we had tried everything for Olivia. With each intervention, it seemed as though Olivia was always the kid that it didn't work for.  In the beginning, the anti-seizure drugs to control the small jerks..... The high doses of steroids that were a miracle for some children with myoclonic seizures......The Ketogenic diet.........MCT Oil Diet.......Gluten & Casein Free Diet.........Homeopathy........Pfeiffer Treatment Center Supplements.......Allergy Associates Sub-Lingual Drops.........Antibiotics for Lyme Disease.......Miraculous Instant Healing through Prayer.............

Always searching, not accepting, anxiously starting the new intervention with a fear that this one will fail too.  Living through failed treatment after failed treatment.  So many times I tried  to "make" the treatment work.  I followed the instructions flawlessly, no matter which intervention it was. Sometimes I wonder if this is just hard wired in to a mother's brain, perhaps her soul. Giving up, stopping the search has never came to mind.  As long as there is hope why give up? To some that may be easier, but is it really?

This marks the beginning of the GAPS diet.  Once again, the "Thrill of Hope" leaves me restless.  After reading the book, the website and any other information I could read, the hope has returned.