Isaiah is a 12 year old boy with regressive Autism, having been born perfectly normal, and actually progressed ahead of schedule until a series of ear infections, oral antibiotics, immunizations, and an exposure to the wild virus strain of chicken pox caused Isaiah to suffer a loss of language, eye contact, joint attention, behavioral self-modulation, and a general ability to verbally communicate his needs, problems, and pain. He developed a severe and persistent gastrointestinal overgrowth of yeast, alternating constipation and diarrhea, food allergies, seasonal allergies, Autistic Enterocolitis, and lymphoid hyperplasia, that can be so painfully debilitating that it causes him to cry and scream, try to find physically comfortable positions, and miss many days of school.
Isaiah has been maintained on a strict casein and gluten free diet for the past 6 years, with variable and minor improvement. He continued to battle chronic yeast overgrowth, clostridia, and alternating diarrhea and constipation, abdominal pain, gas, bloating, and failed to progress in terms of acquisition of social and language skills, to the degree it seemed he should. His tantruming, mood changes, and behavioral outbursts, in retrospect, were essentially all related to his state of bowel function and discomfort.
In a practice of treating well over 100 children with diagnoses of Autism Spectrum Disorders, I must say that despite rigorous implementation of the casein free and gluten free diet (or free from any identified IgG allergens), as well as informed supplementation, I have not seen children improve to the extent and in the fashion in which one would anticipate. These children cannot implant normal flora, eradicate clostridia or yeast. We see continuing deficiencies in nutrients, fatty acids, and amino acids, as well as on-going bowel problems, again, despite nearly heroic interventions to correct these problems, and heal the gut.
Since starting the Specific Carbohydrate Diet 6 months ago, Isaiah has demonstrated impressive progress. He has had a normal stool every day since the 3rd day on the diet. On the one occasion that he was exposed to birthday cake and ice cream, he developed diarrhea for two days, and cried for the entire time. When he resumed the SCD, the diarrhea and crying stopped, and have not returned.
Not only does Isaiah have a normal, formed stool each day, he has made significant rapid progress in developing considerably more language, and utilizing much more complex sentence structure, appropriate pronouns, and spontaneous conversation. He has developed an interest in football, forsaking more juvenile interests, such as Thomas the Tank Engine.
He is now included for the full day in a sixth grade classroom, with supports, and in fact, he has become a champion speller. Last year, he spent 50% of his school time , alone with an individual teacher, because he could not stay in the classroom without crying, performing almost constant obsessive-compulsive routines and rituals, and being totally distracted. He missed over 50 days of school last year due to severe abdominal pain,
crying, pacing, and screaming. Learning is difficult, at best, under those circumstances.
Other treatments have been helpful, such as oral immunoglobulin, B12 injections, complex supplementation, which were thoughtfully and knowledgeably implemented by Jacquelyn McCandless MD, as well as social and educational supports implemented by a very supportive Special Needs Director, Ralph W.Tripp III, but nothing has brought my child so far, so fast as the SCD.
Although many things seemed to help him over the years, Isaiah was still so variable from day to day, that we had no real idea of what was working, and what wasn't. Now, he wakes up happy each day, ready to go to school, and his mood remains stable throughout the day. His mood is so consistent now, we know immediately if something is wrong with him. As I mentioned, he is able to participate in classroom activities daily, and even though the school year has just begun, all indications are that this will be a much smoother and productive. Also of note is the fact that his sense of humor has blossomed; something that
apparently is also difficult when one is in pain and struggling with gas, bloating, and knife-like stabbing sensations.
When Isaiah was exposed to one teaspoon of homemade goat's milk yogurt, he reacted in a very negative fashion. He cried for a day and a half and was totally miserable, and had loose bowels for two days. This may have been because he was not following the SCD long enough for GI healing to have taken place. The other possibility is that when Isaiah was exposed to the cake and ice cream, we should have started from square one. The lesson in this experience however, probably is that children with ASD should take their time and not start the casein exposure prematurely, or parents may come to the erroneous conclusion that the "diet does not work." If the gut is not adequately healed, children on the Autism spectrum may have problems adding in the yogurt.
Elaine Gottschall continues to make major contributions to the health and well-being of people; this time by introducing the SCD to the ASD community. This may well be the missing link for the many children, and perhaps adults, who have not adequately responded to the casein free and gluten free diet, and vigorous and informed supplementation. It seems to be having a very beneficial effect on Isaiah, and hopefully, will have the same effect of healing the gut, relieving the pain, and maximizing the developmental potential of children with ASD.
Christmas Update: We had the best holiday of our lives. For the first time, we were able to go to family parties with Isaiah calm and happy! In the past, this was impossible, as he was reticent to attend, and would scream and cry if we did attempt to include him.This was probably due to sensory integration problems, overstimulation, anxiety, pain, change of routine, and many variables.This was always a difficult time for my family since we are all very social people. Isaiah and I would need to stay home alone during the holidays, or leave a party after a very short time. This was at least as difficult for my older son, who enjoyed the parties immensely, as he either had to leave early or stay there with only his father, but without Isaiah and I. This created a lot of distress for the family, and a lot of turmoil for me, in particular, having to miss a lot of holiday time with my older boy.
This year, however, was quite the opposite. Isaiah joyfully attended a round of parties, and brought his own delicious SCD food. Things that would have previously sent him into a house-shaking tantrum no longer bothered him. Noises, lights, new people, different routines were not at all difficult for him. He still set limits on how many parties he was willing to attend, but we were able to fully participate in all the important family events of Christmas and New Year. Quite the change!
Isaiah's ability to benefit from the academic and social environment in middle school has improved immeasurably. He actually requested to transition to middle school, despite our attempts to keep him in elementary school. We thought he needed to stay with the "little kids in a safer environment", but he would have none of it. He is doing very well in school, and no longer spends any time in the "sick room" with abdominal pain and screaming.
Although it takes a tremendous amount of time and commitment to be fully SCD compliant, for the first time I feel good about the food that I am giving my family. Not only has Isaiah benefited from SCD, but so has my typically developing 15 year old son, Marcus, as have I. Isaiah can now tolerate butter used in cooking SCD cookies, crackers, and cakes. Right after the holidays, we will again attempt the goat's milk yogurt.
We have also implemented the SCD as the diet of choice for the children in our practice, and we have observed many positive effects. I am sure as we come to understand more about the individual metabolic issues of people on the Autism Spectrum, and more about the workings of the SCD, even greater benefit will be derived.
With love, respect, and gratitude,
Pamela J. Ferro