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
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.
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Friday, January 6, 2012
Putting her on the Introduction diet
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!!!!!!