She has a full chapter in her book about epilepsy. In her opinion and her experience about 30% of delayed children suffer from various "fits". These "fits' can range from crying and tantrumming on up to grand mal seizures. She talks of one of her patients who's parents say when their child starts tantrumming, there is nothing the parent can do to stop it ---- it's almost like it is a seizure. I could really identify with much of this chapter, especially the part where parents of patients with seizures talk about seizure meds and the feeling that if you do not have your child on them you may get in trouble with the authorities! Even when they did not work. She confirmed much of the information I have read about seizures; that medical science still does not know what exactly makes the "electrical storm" that has been labeled as an epileptic seizure, and how it is still a mystery how anti-convulsant drugs work (when they do - that is). I found it interesting that turn of the century medical doctors had a 95% seizure control rate when introducing "seizure diets" to patients. This research was abandoned by most doctors in 1938 when the first anti-convulsant drug was discovered. The Ketogenic and MCT Oil diets were created for just this purpose, but are extremely restricting. Olivia was on the Ketogenic diet and did not do well.
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."
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.
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.
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Hi Kelly, our family is also engaged in the GAPS protocol… primarily to heal my 26 year old son of epilepsy. My husband and I have been doing Full GAPS for almost five months. My son has been about 80% GAPS, but still drawn to sweet things and raw milk. Lately I believe he is making the connection between what he eats and when he has seizures. What has your experience been?
ReplyDeleteAnnie
Can you explain further why your daughter did not do well on the ketogenic diet? Was it just too restrictive for her? Or did she experience adverse side effects? Was she getting enough electrolytes and optimal protein?
ReplyDeleteHi Kelly,
ReplyDeleteOur family has been in the intro stages of the Gaps diet for 3 weeks now but my daughters absence seizures are getting worse. They are both diagnosed with celiac disease and epilepsy. Have you ever heard of the symptoms getting worse before they get better. They have not cheated at all on the diet.
Thank you,
Yes! Olivia frequently goes through an increase in her seizures as I increase the probiotics and yogurt. Some refer to them as healing crisis'
DeleteMy grandson is obviously a GAPs person. He has been on the Gaps diet for two months. He has had a couple of occasions when out with other family members where he was given potatoes. Last weekend he had a very frightening seizure, fitting and being sick but my daughter could not open his mouth and she thought he was going to die. He has never had a seizure before but he may have been having absences for some time. Anyway he was taken to the hospital where he had 3 more seizures, each happened upon falling asleep and every time they were shorter than the previous. All the tests came back nothing wrong and healthy. He was given baked potatoes twice in hospital. My daughter wants to continue the Gaps diet and is continuing but only giving him some yeo valley yogurt twice a day instead of kefir. She is so scared of him having another seizure and is staying awake watching him at night because he had all 4 seizures upon falling asleep. I know the gaps diet very well so I dont need any general advice just some advice about how to proceed after this frightening occurance and maybe a bit of reassurance.
ReplyDeleteKind regards Julie