Five Things I Learned at My Son’s First MAPs Appointment
As my husband and I are learning more about our two-year-old son with NF1 and autism, we’ve seen a lot of doctors. Many comorbid health issues can tag along with autism. Some doctors believe that if you can improve those health issues, you can improve the quality of life for the child. For example, my son suffers from debilitating constipation. This is common in people with autism. He also has an absurd number of food allergies, ear infections, and a poor immune system in general.
I’ve been trying to solve my son’s complex health issues for almost a year now. It’s awful to see him constantly sick or in pain. We have seen a Pediatric Gastroenterologist, Allergist, Neurologist, Ear Nose and Throat Specialist, and more. These doctors have been very helpful in guiding us with treatments and solutions, but there are many symptoms my son has that they can’t figure out. Some doctors won’t run labs that I’ve asked for because they don’t think it will shed any light on our situation.
I do a lot of research on my own. Some may call me a “Google Mom” but I believe that knowledge is power. I’ve read a lot of books on Autism, and I’m also in several parent Facebook groups where I find support and advice. It did not take long for me to find out about MAPs doctors. MAPs stands for The Medical Academy of Pediatric Special Needs. These doctors use more of a “functional medicine” approach to help patients with GI issues, mitochondrial dysfunction, nutrition, etc. After reading about other parents’ experiences with a MAPs certified doctor, I knew I wanted my son to be seen by one right away.
After asking around for recommendations, we finally found one out of state, about five hours away. There were options closer to us but they either had long waiting lists or did not accept insurance. We found a doctor that we could get into right away AND accepted our insurance so we decided to make a little, inexpensive trip out of it. We stayed in a hotel with a pool because our little guy LOVES water. We left our other son at home with my parents, which is always hard for me to do, but he had a blast with “Mimi and Papa” and I’m always looking for ways to enjoy one-on-one time with my twins so it was a win-win.
Our experience at the hotel wasn’t awesome. Routine is huge for our little guy, so he was not crazy about spending time in a strange new place. In fact, our entire routine was off. We don’t eat out much, so a noisy restaurant overwhelmed him. We ended up eating takeout in the car to keep him calm. The only time he was happy was when he was in the pool. He was a different child the moment his toes touched the water.
Sleeping was the worst. I think we got maybe an hour of sleep collectively between nonstop crying sessions. I could tell right away that his ear was bothering him, and the next day we noticed both of his ears were draining (he has tubes). It’s so frustrating as a parent when all you want to do is help your child but they can’t tell you what’s wrong. When the sun came up I was so ready to get out of that hotel and get to our appointment.
Our appointment started at 10:30 and we didn’t leave for home until close to 1:00. This appointment was different than the rest of our appointments in the way that our doctor focused on our son as a “whole child”. He cared about every problem we were struggling with. He even had his nurse stay in the room to take detailed notes. It was the most thorough appointment we’ve had to date and here are five of the major takeaways we left with:
I want to start off by saying not all traditional western doctors are close-minded but I have had some difficult situations come up with some that we have personally seen. For example, after doing a lot of research on candida and how it can affect those with autism, I brought it up to my son’s pediatrician who simply told me I was barking up the wrong tree. I’ve also asked about running labs on vitamins, specifically vitamin d and b12. My reason for wanting these labs is because my son has a very limited diet. My pediatrician’s response was, “Try to remember that most kids are picky eaters and they are still thriving.” This made no sense to me because my son is NOT thriving. Our MAPs doctor really listened to all of my concerns and was open to running these labs. He told me I wasn’t barking up the wrong tree, I was just talking to the wrong person. For the first time, I felt like all of the concerns were valid and I was being heard.
2.) Most people in the Midwest are deficient in vitamin D.
One of the biggest concerns about my son is that he gets sick all the time. He’s had Influenza A two years in a row, Pneumonia several times, Hand Foot and Mouth, and lots of viral colds and stomach bugs. It seems like he is sick more often than not. When I brought this up to our MAPs doctor he said he was very curious about our son’s vitamin D level. He predicts that most people in the midwest are deficient because the best way to get vitamin d is to absorb it from the sunlight through your bare skin and we some harsh winters. Vitamin D is an easy solution to some big problems but immunity is one of the big ones! It all made sense to me when I thought about how cold and flu season takes place in the winter when nobody is getting good vitamin D from the sun.
3.) B12 can help with speech.
Our Maps Doctor’s first line of defense for speech delay is the b12 protocol. He explained that b12 is not absorbed very well from oral supplements or food, and the best way to get it is through injections. This made me very nervous at first, but when he showed us how tiny the needle is, I relaxed a little. He even let us practice on a fake pad of skin. My husband was really good at it, so it might just become his permanent job ;). Our Maps doctor told us that b12 is a water-soluble vitamin so it really can do no harm. He said we don’t necessarily use b12 injections because we are deficient in it, but extra b12 can help detox the body and lower inflammation. He said 75% of patients see improvement in speech with this protocol. There are also some side effects like increased stimming and mouthing of objects. I’m cautiously optimistic to get started with b12 injections. I don’t want to expect a miracle, but I would be so happy with some gains in my son’s speech. My attitude is, if it can’t hurt, why not try it?
4.) Candida is a real thing.
Back to the Candida topic, or in other words “yeast”. Gut dysbiosis is huge in kids on the spectrum. The human gut is full of good and bad bacteria. It becomes a problem when the bad outnumber the good. We lose good bacteria in many different ways and my son is the poster child for gut bacteria problems. He was born via c-section, so he missed out on all of the good bacteria in the vaginal canal. He was breastfed for a few months but I couldn’t keep my supply up much longer than that with my twins so he was mostly formula-fed. Most importantly, his constant ear infections lead to round after round of antibiotics. The problem with antibiotics is that they kill not only the bad bacteria but also the good. When all of the good fighters are gone, yeast comes in takes up all of that space in the gut. After three rounds of antibiotics, he had thrush, which is a yeast infection of the mouth. That was all the evidence I needed that this is a real issue. Our MAPs doctor told us that yeast is sometimes impossible to tackle. Several medications and supplements fight yeast, but the body can get too used to the medicines and they become less effective. We ordered a stool and urine test which will give us more information on how to treat any yeast my son may have.
5.) There is Hope.
I refuse to believe that there is nothing I can do for my son. Speaking with this doctor made my husband and I realize that there are SO MANY things we haven’t tried yet to help him. We’ve left other doctors appointments feeling defeated and hopeless but with this one, we felt excited and hopeful. Again, knowledge is power and any information we can learn about our little guy is revealing another piece to the complicated, beautiful puzzle we are slowly putting together. I strongly recommend MAPs doctors for any parent looking to help their child with autism or other neurological disorders.