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.
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Tuesday, January 31, 2012
Green Pastures Blue Ice Fermented Cod Liver Oil
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:/