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.

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!!)

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