Achieving an Optimal Medical Outcome
A Play in 3 (very short) Acts
By Brian D. Udell, MD
||Medical Director of Pediatric Special Needs Practice. Forty years of experience. Doesn’t take any crap. Prone to voicing his opinion.
||A great mother who tries to listen to all the professionals, research the ‘net, and get the best care for her child. Seeking another opinion from Dr. Udell.
|Bobby – the kid
||Beautiful 4 year-old child with autism. Speech apraxia and social isolation are the most significant problems.
The Child Development Center of America, in Davie, Florida. Typical tropical rainstorm on the outside. While the child is being observed via cameras in the playroom, a discussion ensues in Dr. Udell’s medical office.
I came to see you because the doctors over at the hospital want to put a gastric feeding tube into my child. He got sick with intestinal blockage 3 months ago, then pneumonia 2 months ago, and now he won’t eat anything but Pediasure. Also, we have to give Miralax all of the time, or Bobby won’t poop for 3 or even more days.
Do any of the doctors know that Bobbly has autism?
Well, I guess so. But they are all worried about his nutrition. Without the Pediasure, he won’t eat anything. He wasn’t growing and we are all scared. But, I don’t want to put a tube into my child.
(Dr. UDELL performs a physical examination and goes over the chart containing information from previous visits.)
I see here that the child is really intolerant of casein. Also, our notes reflect that there was some variable response to biomedical protocols. What happened with that?
We did everything that we could to get him to eat. Especially after he got sick recently, this was the only was to make sure that he was fed. At least now, he drinks the Pediasure – just won’t eat anything else.
Bobby enters. He makes pretty good eye contact with his mom, mostly ignores the doctor, says some words that make sense and are very clear (“go home”), and others that are unitelligible. Echolalia and scripting. Then, back to the playroom. The staff interacts with him, but mostly he wanders by himself, with occasional hand flapping.
Is he getting Speech and Language Therapy?
The insurance… we’re waiting for that.
(Dr. Udell seems upset. He closes the door, slowly raising his pitch, and pointing his fingers.)
Everything that you have told me, and everything I know about your child tells me that all his problems are really one problem – Autism. Somehow his immune system and his gut are involved. Nutrition is surely a factor.
(Dr Udell’s voice more sympathetic now.) You are a great mom. What these doctors are suggesting is not only un-helpful, it could lead to permanent problems. Where does this cycle of Pediasure and Miralax for constipation lead to? Abilify for stimming and Adderall for hyperactivity.
(Dr. Udell sounding more authoritative.) The main deficit is speech. At this crucial time in your child’s less-than-5-year-old development, whatever you do from this point forward, ought to be focused on improving communication, especially producing useful speech. And, Bobby even exhibits occasional flashes of that skill… he’s in there!
To the extent that addressing gut and nutritional issues advances that goal, we should capitalize on our ability to pursue. But… THE BRAIN TRUMPS THE GUT. The child will reach the age of ten or twenty – either bigger or smaller. But, will he talk?
(Dr. Udell’s right finger pointing in the air). To prove my point, I offer the following scenario: A doctor says, “I have a pill that will definitely increase the chances that useful language will emerge, but it may result in a loss of a few pounds in weight or inches in final height. Otherwise, there are no other significant risks. And, it will take time, effort, and resources. It may seem that the child is starving, but we will make sure that doesn’t happen.”
Or, the family could be satisfied with a rubber tube that pumps fake milk into a child’s stomach, assuring nitrogen balance and optimal growth. The child’s autism? That’s not their problem – and, anyway, there’s little that can actually be done, other than conventional therapies and take your chances.
(Dr. Udell seems really upset.) There really is no in-between. ASD is associated with gastrointestinal issues, including oro-motor functioning, sensory processing, GERD, and constipation. And, there are no pickier eaters than those who suffer from restricted interests and repetitive behaviors.
Whatever it takes to achieve some minimal nutritional support, a way can usually be found to address the lack of interest in real food. And, it starts with a speech and language professional who understands that feeding therapy is the most basic part of the patient’s issue. If it takes 3 or more months of slowly introducing necessary supplements, medications, and yes, even foods, that’s OK. Because communication – not nutrition – is the paramount issue of that period in the child’s recovery. (Dr. Udell is standing, and breathing rapidly).
Nearly 30 years ago, as a practicing neonatologist, I introduced the first computer program for feeding tiny babies. As a pediatrician treating infants who were suffering from cocaine addiction, poor prenatal care, and even HIV/AIDs, our NICU was responsible for working with nutritionists, nurses and parents to best address dietary needs in very sick newborns.
So, as the epidemic of signs and symptoms that are presently called Autism Spectrum Disorder evolves, my perspective on the topic of achieving optimal nutrition has advanced and adapted to meet the needs of each individual patient.