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.
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?
Tuesday, January 10, 2012
Dr. McBride Explains Seizures in GAPS patients
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."