Pediatricians. Gastroenterologists. Neurologists. Psychiatrists. Psychologists. Allergists. Dermatologists. It’s no wonder families are confused.
At one time, Sam had a provider from each of these different modalities. Each only interested in their specific area of expertise.
About a year ago, I “fired” our Psychiatrist. Last week, I “fired” our Gastroenterologist. Yesterday, we saw the Neurologists regarding Sam’s seizures. I’m ready to fire them, too. Sam has partial complex (focal) seizures. They are not controlled, meaning, we still see them. They started when he was 14 years-old. It’s quite common for kids on the autism spectrum to develop seizures around the time of puberty and for them to disappear as quickly as they appeared, once the child reaches adulthood. Because of this, I have taken a, relatively, conservative approach to managing his seizures. We made dietary changes, added in supplements, reduced his stress level, and he takes daily Onfi and Lamotrigine. When we see a change in his seizure activity, aka. two or more in a row, we introduce the rescue protocol, which for him means another medication in the same family (Benzodiazepine), Klonopin, which he then takes twice a day for three days. On the whole, this has kept him down to about two episodes a month. Do I like the medications? Hell no. I’d love to get him off them. But as much as I hate the meds, I hate the seizures more. So until I find a better way, I’ll need to make peace with these seizure meds.
We haven’t seen the actual Neurologist since our intake appointment over a year ago. Instead, we see his Medical Assistant, Sally. So Sally comes in and begins to get an update on Sam’s seizures. She doesn’t want to hear about his gastrointestinal issues, leaky gut, nutrition, compromised immune system, the mutation on his MTHFR gene that disrupts his methylation (detox) pathways, or other supplements/medications he’s taking. She remains solely focused on his seizures, what they look like, how long they last, how he behaves afterwards. I’m no doctor, but it seems to me that these things are interrelated. Couldn’t his toxic burden lower his seizure threshold triggering seizures? What about a food intolerance? How about adding L-Taurine or Vitamin K2? Never mentioned it.
She mentioned another EEG. No thank you. We’ve endured several inconclusive EEGs. You don’t need an EEG, I’m telling you exactly what they look like, how long they last, and how his recovery period is after the seizure. And I did it without sedation, sleep-deprivation, or additional stress. You’re welcome.
She mentioned bringing in another “specialist” on the team who can talk about alternative treatments, including switching medications, Vagus nerve stimulation, and surgery. She skims over the possibility of a diet change as being too difficult. She never mentions medicinal marijuana or Charlotte’s Web, which are hot topics in the seizure world right now. These natural herbs have been known to stop debilitating seizures in kids, and several states are currently lobbying to make them legal. But don’t mention this. Focus on surgery instead. Why?
Two things are wrong with having these “specialists” on your autism team. First of all, they only look at the area they specialize in, not the whole child. Second, their first treatment choice seems to always be medication (or surgery). Am I grateful to the GI team who addressed Sam’s mega-colon and impaction and got him cleaned out a couple of months ago? Absolutely! Do I think their long-term treatment plan of Miralax and X-Lax is satisfactory? Absolutely not.
Enter the DAN! or MAPS trained physician. DAN! stands for Defeat Autism Now. MAPS stands for Medical Academy for Pediatric Special Needs. MAPS is the new DAN!. Dr. Deborah Nash is the only MAPS trained physician in Ohio and happens to be Sam’s biomedical doctor. Why do we need a biomedical doctor? Because when she looks at Sam, she doesn’t see an ear ache, constipation, seizures, or eczema. She sees the whole child. She bases her treatment on lab work, experience, and personal knowledge. She has a son on the spectrum. Most of these specialists do, which is why they got into this field of study to begin with.
This is what I thought a Pediatrician did but I was wrong. We have a pediatrician for the occasional sore throat, ear ache, or upper respiratory condition. They understand the typical illnesses all children get. They don’t understand the complicated medical issues children with autism face. This became clear to me at our last “well child” visit to Sam’s pediatrician. He offered Sam the Gardasil vaccine. Gardasil is supposed to protect FEMALES from Human Papillomavirus (HPV) that can cause cervical cancer. They recently began offering it to boys, supposedly to protect the females in their lives from the virus. There is a lot of controversy surrounding this vaccine and the vaccine injury associated with its use. There’s no way in hell my typical daughter, let alone my autistic son, is getting this vaccine. His offering this vaccine to my compromised and vaccine-injured son only proves how little he “gets it”. Maybe I need to “fire” him, too.
Autism parents have to be specialists in EVERY field of study related to their medically-ill child. So now I guess it’s time to research seizure diets (Ketogenic, Modified Atkins, etc.), and supplements to support Epilepsy, and give it a try. It can’t hurt and it might help. And it certainly beats surgery.
I’ll leave you with an encounter I had yesterday with another “specialist”. For some reason during our Neurology appointment, Cincinnati Children’s Hospital thought I needed a visit from a Psychologist. Maybe they think I’m crazy. Anyway, this poor little thing comes in looking all of twelve years old, and introduces herself. “Hi, I’m Nicole, and I’m a Psychologist here at Children’s. I wanted to see if there’s anything behaviorally with Sam that we might be able to help with.”. She stares at me with her too-big eyes, expectantly. Exhausted from trying to manage Sam’s anxiety throughout the hour-long drive to the hospital, and the visit itself, I sigh deeply. She’s not leaving without a problem to solve so she can feel like she’s done something. So I give her one. Sam’s anxiety causes him to pick his fingernails and toenails off, especially at bedtime. Her suggestion? To dress my 6′, 145 lb. son in footy pajamas, with the feet sewn on backwards, and zipped up the back, so he has no access to his feet at night. She seems pleased with herself. I’m sad. Sad that she thinks her suggestion was helpful. I muster the energy to thank her as Sam drags his dog down the hallway, headed for the exit. He’s done with these people and so am I. You’re fired.