My son, Wyatt, began having symptoms at age one when he had his first seizure. It was diagnosed as 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. I 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. Since he didn't shown symptoms of demyelization, we came to realize he had a secondary seizure disorder, not related to the ALD.
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.
Immediately following Wyatt's diagnoses at age 7, we starting giving him Lorenzo's and mustard oil. Wyatt's very long chain fatty acids, (VLCFA) did not normalize (.22), but they did come down 62% from 1.31 to .50. My level as a carrier without the oil was .52. Since Wyatt already had a natural diet, we did not implement too many new restrictions. However, we've kept him from hydrogenated fats and fried foods. Wyatt took the oil a couple years, at which time we saw not benefit and allowed him to stop. No one knows why the oil does not work on all boys, but if he were to become more symptomatic, we would certainly try it again.
What we found more beneficial to him, was 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. When we let him have artificial additives, he inevitably had an aura. Too much sugar also proved to break down his immune system.
Our acupuncturist helps keep Wyatt from getting sick. Keeping him healthy is our first priority because many boys start the downward slide after becoming ill. While he often goes weeks without seizures, he seems to have them in clumps, and often with the onset of a virus.
We have used many alternative medicines on Wyatt to boost his immune system and in hopes of preventing ALD symptoms. We have consistently used homoepathy, herbs, nutrients, and acupuncture. Here is a number that may be able to refer you to a good acupuncturist in your area: Nationwide AAOM 866-455-7999. My acupuncturist has had success with Wyatt and others who suffer from demyelinating diseases including MS. We have also used Cranio Sacral Therapy, a light using (Rife technology http://www.crossoverroad.com/beamray.htm), Total Biology (http://www.totalbiology.ca/main/ateliers_e.htm)
Wyatt also takes Cortef now to support his adrenal glands. His dark skin had been the only noticable ALD symptom, since the seizures are from something else.