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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Sunday, March 4, 2012
Ear Infections & Antibiotics - The road to becoming a GAPS patient
I remember when Olivia started getting ear infections one after another, after another. I always knew when she had one because she could not (would not) lay down for bed, or she would wake up in the middle of the night screaming. As parents of kids with ear troubles know, the pain would always increase when in a horizontal position. My mom would say, "What exactly is an ear infection?" My mom had six children who never experienced that sort of ear pain. Dr. McBride attempts to answer the question, "Why do we have this ear infection epidemic?"
As she explained the structure of the ear and how ear infections develop it really made sense why Olivia struggled with them as a baby/toddler. She further explains:
"The mouth, nose, throat, Eustachian tubes and middle ear of a newborn baby are sterile. Fairly soon after birth, mouth, nose and throat get populated by a varied mixture of microbes, coming from the environment, mum, dad and anybody else who is in contact with the child. Just as it happens with the gut, due to various factors which we have discussed, many children develop abnormal flora in that area. This will do two things. First, the epithelium of the Eustachian tubes will start producing too much mucus in order to protect and clean itself. Second, the tube tonsils will be in a chronic state of inflammation, blocking the entrance into the tubes and not allowing the mucus to drain out. Fairly quickly the middle ear fills up with mucus. This situation is called glue ear. Mucus will not allow appropriate passage of sound through the middle ear, impairing the child's hearing and hence development. A lot of children with glue ear do not become autistic, for example, but their general learning abilities suffer. Speech delay is very common. The mucus which fills their middle ear would provide a good growing environment for any infection which may come along from the back of the nose through the Eustachian tube. When that happens the child gets the typical symptoms of ear infection - pain and fever, when antibiotics are usually prescribed. Antibiotics clear away the infectious agent, but do not remove the glue ear. In fact, in the long run, they make the situation worse by altering the bacterial flora in the nose and throat even further. So, with the middle ear still filled with mucus, a good medium for growing bacteria, predictably the ear infection happens again and fairly soon." Which is exactly what happened with Olivia. She would get an ear infection, be put on antibiotics for 10-14 days only to repeat the cycle one week later.
We were living at my mom's house when Olivia's seizures started. I clearly remember driving up to my mom's house and seeing Olivia in the large picture window. I remember thinking to myself - "What shirt is she wearing?" This question may seem weird, but as I looked at her it appeared as though she had a white shirt on with polka dots on one whole side of the shirt, but not the other (sleeves and all). As I entered the house and she ran to give me a hug, I realized that the shirt was a basic white shirt, the "dots" that fueled the question in my mind were actually blood drops from her ear. Her right ear was so badly infected so often, that many times the infection would cause her ear to bleed continuously. My poor little baby!
Reading Dr. McBride's chapter on ear infections was confirming, especially when she talked about a contributing factor to constant ear infections - ALLERGY TO MILK. Approximately 9 months after this incident I took Olivia off milk and she hasn't had an ear infection since. But, unfortunately, the resulting damage from the antibiotics had in a sense sealed her fate.
Dr. McBride further explains the damage done by antibiotics:
"A prescription of antibiotics. It is the routine response of the medical profession pretty much everywhere
in the Western world. We have discussed in detail what antibiotics do to the bodily flora (in the gut, on the skin, on all mucous membranes, including the nose, throat and ears). Though the course of antibiotics will clear that particular ear infection, it will also lay the ground for the next one to come. Apart from destroying the beneficial bacteria, antibiotics are usually given to small children in a syrup, which provides concentrated amounts of sugars and starches to encourage growth of pathogenic microbes in the throat, many of which are resistant to the antibiotic in that syrup. As a result these pathogens start growing, even while the antibiotic is being administered. "
How I wish I knew this then!!