Letters
"Healing Autism: No Finer a Cause on the Planet"
| The
Schafer Autism Report Letters |
"Healing Autism: No Finer a Cause on the Planet" |
Letter continues below shaded text Today's issue of the Schafer Report had both an abstract and parent letter on the gastrointestinal problems seen in children with autism. If the abstract is correct, at least 24% of our kids are suffering. And the author of the letter is right: As a parent, you suspect that the GI issues are either causing or exacerbating behavior problems, lack of attention, anxiety and a host of other symptoms we chalk up to part of our day-to-day battle with autism. For what it's worth and in case it helps someone else, here are the nauseating details of our story: In our case it was chronic constipation. When he was 4-and-a-half, our HFA son, Brian, just stopped moving his bowels. If you think this is impossible, let me assure you that, for what ever reason, in some children with autism it's not. Despite many trips to pediatricians and specialists through the years, there seemed to be nothing we could do about it. Laxatives, Enulose, mineral oil, liters of mixtures that my son could not tolerate taking. We either couldn't get it down him or if we could, it didn't do any good. By around six, he began to "leak", meaning he had lost muscle control and had become bowel incontinent. He smelled and had to wear a pull-up at all times. Letter continues here By second grade Brian began vomiting almost everyday, sometimes multiple times a day. At the suggestion of a specialist we finally took him to the hospital and had a nasal gastric tube inserted so that we could "clean him out" with enema solution. It took days, and since Brian couldn't be sedated for this, he was sick and terrified. At that point, an interventional radiologist surgically inserted a tube and a "trapdoor" into Brian's colon (a procedure known as a cecostomy). Almost every day for a year after that, we would spend about two hours in the bathroom every night injecting enema solution into his colon and waiting for him to be cleaned out. It was exhausting and degrading for him. There was no time to do homework and because of anxiety issues, increasing aggression and non-participation in school, we pulled him and homeschooled him for the rest of the year. Despite our specialist's hopes, our son never regained muscle control and couldn't move his bowels without the help of the enema solution. Now we get to the good part: In December of last year, prior to his 9th birthday, and 8 months after his cecostomy, we started neurofeedback therapy to relieve some of the stress and anxiety Brian was obviously dealing with in the classroom. We can't say that neurofeedback really did the job of removing the stress, but-- lo and behold -- it had an almost immediate side-effect: Brian began having regular bowel movements on his own in the toilet. For that reason alone we figured the neurofeedback -- not covered by insurance -- was worth the money. At one point the psychologist administering the neurofeedback moved the electrodes away from the sensory placement that we had been working on to try to achieve a calmer demeanor, but instead Brian became even more agitated and again stopped going to the bathroom. After a couple weeks of this, we pointed it out to the psychologist and he moved the electrodes back to the original placement. Ta da! Brian was able to go again, which gave us proof that that particular placement of the electrodes seemed to be the answer to our prayers. Brian had 40 sessions of neurofeedback over the course of the next five months. It's now mid-summer and he's still going regularly. Sometimes he'll go 4-6 days without moving his bowels and we begin to get nervous, but then he'll go again. Unfortunately, probably due to the many years that he had the problem, Brian continues to be incontinent. We don't know if he'll ever regain muscle control, but at least he has bowel control and is healthier as a result. The nasal gastric tube was a horrible necessity; the cecostomy bought us time; but it's the neurofeedback that's been the most helpful. Essentially, neurofeedback, which is a form of bio-feedback, monitors the electrical activity in the brain and "trains" the brain to operate at faster or slower frequencies, depending upon what's needed. Unfortunately, because of the electrode placement and the need for the patient to sit at least somewhat calmly in a chair for 30 minutes at a time, it's probably most feasible as a therapy for higher functioning kids or those with Asperger's. Interestingly, our 12-year-old daughter, who does not have autism but who was diagnosed with obsessive compulsive disorder last summer, is now starting neurofeedback too. Brian will probably begin more sessions in the fall. Through the years, we've spent thousands of dollars on medications, therapies, doctors and, especially, XL Goodnites (which he's rapidly growing out of), wipes and rash ointments. To all the other parents out there doing the same: If you think your child can tolerate it, you might investigate neurofeedback. (For a start, read the book Symphony in the Brain, by Jim Robbins). It's not a cure: it's a complementary therapy to address specific issues. And, like everything else out there, it's not going to help every child, but if we can help a few families and keep them from going through what we experienced, then maybe sharing all the embarrassing, gory details is worth it. - Anne Higley |