Zmrzel Family Progress, written by Diane Zmrzel

Our son, Wyatt, began having symptoms at age one when he had his first seizure.  At the time, it was thought to be a febrile seizure, but it lasted an abnormally long time, ten minutes, followed by a ten hour coma.   He went for almost a year without other symptoms and then began having “episodes” that could not be diagnosed by anyone.  We video taped him to show doctors how he appeared to be choking or seizing, but no one could come up with an accurate diagnoses.  A gastro intestinal specialist suggested we put him on Zantac or do surgery for acid reflux.  My intuition told me this wasn't the problem, so I didn't take the doctor's advice.  Meanwhile, I was taking him to two different naturopathic doctors who tried treating him with a restricted diet and calcium supplements.

These episodes went on for a couple years, and I kept a log of them along with everything he ate and did to try to figure out what triggered them.  They usually lasted about 15 seconds and occurred both while he was awake or sleeping.  We now believe these were seizures and the milder ones were auras that didn't get to the seizure stage.

Then a month before his 5th birthday, Wyatt had a forty-minute febrile seizure, followed by many tests and four nights in the hospital intensive care.  He was diagnosed with Viral Menengital Encephalitis.  The doctors did many tests including an MRI that revealed he has Chierre Type I, a hole at the base of the brain where the stem goes into it a little where it should not.  The doctors said it could be nothing and something a lot of people have, but it could also be related to headaches later in life or lack of coordination of the legs.  At this time there was no mention of demyelination or ALD.

 A year later, we began treating Wyatt with acupuncture because he continued to have small seizures similar to the episodes he previously experienced.  We came to call these auras because usually they were more like he felt one coming, but it didn't realize.  This same year, at age 6, Wyatt had his third grand mal seizure and we put him on seizure medication for just under a month.  By that time we had realized no benefit  to medicating him, but a few drawbacks, so weaned him off of it.  At the same time we began giving him Chinese herbal formulas prescribed by our acupuncturist. 

Because of this third seizure, the doctors diagnosed him with Epilepsy.  Accordingly, we had him start wearing a medic alert bracelet, which led to his diagnoses by a new friend and founder of the JordonFund, Marguerite Crespillo.  Upon meeting Wyatt, she asked many questions about his condition that the doctors had never asked.  DNA tests have confirmed that the ALD gene mutation started with me.

Since starting the oil, Wyatt's very long chain fatty acids, (VLCFA), have not normalized (.22), but they have come down 62% from 1.31 to .50.  My level is .52.  Since Wyatt already had a natural diet, we haven't had to implement too many new restrictions.  However, he cannot have peanuts, hydrogenated fats or fried foods.  So while we don't let him indulge in McDonald's french fries, we can still make him natural fries in the oven.

We also do our best to restrict him from processed sugar and grains.  Again, while most conventional food contains white sugar, white flour, corn syrup, or artificial ingredients,  we were already avoiding these at home, and only getting them at parties or restaurants.  Wyatt is incredibly good about avoiding these foods.  In a moment of weakness and guilt, I gave him the option of ordering something with sugar in it, and he decided himself that it wasn't worth getting sick.

While we are hopeful that Wyatt will remain healthy and the oil has helped,  we are by no means calling this answer good enough.  No one knows why the oil does not work on all boys.  Wyatt's adrenal glands are still holding up without steroids, but we'd like to have the Addison's disease completely arrested.