By Victoria Fierro, MD, FAAP
Developmental Behavioral Pediatrician
Physicians might not usually recommend treatments that we consider “unconventional,” but it is important that we hear about any option that our patients are considering. These may include experimental, alternative, or complementary therapies.
We get most of our information from our medical journals,but nowadays there are innumerable ways of spreading information, and it is impossible to be always caught up with the latest news. That is why we ask our patients to open up to us, as the best plan of treatment is the one that we develop in partnership.
Once we have the information, we can discuss what our thoughts are, research if we need to, and evaluate if it is a valid option, and what are the pros and cons of a trial.
Experiments
Sometimes you may hear about new treatment for specific conditions and when you ask your doctors, they say that it is not available yet or it never will be, because it is experimental. This could be extremely frustrating and disorienting.
There are ongoing trials of medications or therapies all the time. Before considering them useful, they go through experiments. The research results need to be replicated several times.
Nowadays, magazines, TV, and social media access medical articles about the latest research. When publishing a review, they often don’t clarify that the treatment is only experimental. If the original publication was part of a research protocol, it would not be available to the public.
Complementary and Alternative Medicine (CAM)
Complementary treatments can be implemented in addition to the conventional treatments that western medicine offers. Alternative treatments are used instead of traditional ones.
There is nothing wrong with possibly using a treatment labeled complementary or alternative by your clinician, but it is essential to inform your care team. You should discuss what you expect of it. What are the goals and when should you expect to see that outcome. Especially when there are possible side effects, we need close monitoring and a contingency plan.
Diets
One of the most commonly used complementary treatments is dietary manipulations. I usually tell the families of my patients to be careful. Children are frequently picky, yet they need appropriate nutrition to grow and develop. It is challenging to restrict elements that make food tastier, even more so when dealing with a child who has a food aversion.
A common urban legend posits that sugar causes hyperactivity, but studies done in this area have failed to demonstrate that relationship.
Gluten and Dairy Free
Foods with gluten are tasty, rich in calories and usually supplemented with multivitamins. Dairy is an excellent source of calcium and comes supplemented with Vitamin D.
There is a hypothesis that gluten and casein (a protein in milk) can act as false neurotransmitters in the brain. For some people, the peptide may go from the intestine to the brain because they have a leaky gut. However, most of the information we have about these foods affecting behavior is anecdotal.
Survey-based research has reported improvement in sleep, bowel movements, language, and attention; but it consisted only in gathering testimonials and was not subject to experimental rigor.
If a family wants to try a particular diet, they should first disclose it to their clinician. Together they can make sure that the child is receiving the appropriate nutrition.
Gut Bacteria
Frequently children with autism have gastrointestinal symptoms. This has generated several studies evaluating the link between the intestine and autism.
Some studies suggest that the microbiota (gut bacteria) of children with autism is different from typically developing children. Several studies evaluate these differences using dietary manipulations or probiotic supplementation to modify the microbiota. Nonetheless, they have not proven any changes in the behavior.
Similarly, some practitioners have recommended antibiotics or antifungals to modify intestinal bacterial and yeast flora. There are no clinical trials that support this kind of treatment. In contrast, there are potentially severe side effects, such as overgrowth of resistant pathogenic bacteria or toxicity of the medications.
If you are considering a therapeutic option that has not been recommended by your physicians, don’t be afraid of bringing it up in a conversation with them. As physicians treating children with special needs, we want to collaborate and support families, and we have our hearts open to understand your concerns and hopes. We want to be your partners in this journey that is the life of our greatest treasures, our children.