Enter Dr. Compart, our Defeat Autism Now doctor! When we finally had our appointment for the final part of Might’s autism evaluation, we met with Dr. Mennon at CARD. She gave us a series of recommendations that included ABA, PECS, floor time, sensory, speech and OT, but nothing regarding diet, supplements or other biomedical intervention that I had been reading about. I mention that we had removed gluten and dairy from his diet but wanted further guidance about nutritional testing, so as an aside, she mentions Dr. Compart, a developmental pediatrician who works in the world of functional medicine and specializes in developmental disorders like autism. I’m interested.
Because of my insurance tug of war (see previous post), it took me a few weeks to call her practice for an appointment. I’m told that there is a several month wait and that there will be three appointments. Everything in our medical autism world takes months in terms of getting appointments so I’m unphased. I set up the string of three appointments over a three week time period, and then I proceed to research/stalk her on the internet. I stumble upon a taped talk at an autism conference. She speaks for an entire hour about the importance of a thorough evaluation of a child on the spectrum. She talks at length about a child that she helped recover, and specifically what tools were used. And it was here that I first heard of PROMPT speech therapy and learned what apraxia was. (insert link for apraxia)
She talks about a child that had a conversation with her about what it was like to have had autism before. Here we have a child who remembers being autistic, is no longer and is now articulate and aware enough to describe in detail what it was like. I’m just hoping that Mighty will some day say “mama”, so I’m dumbfounded by this potential outcome.
We meet with Dr. Compart for the first time without Mighty. The fact that I get to give her a complete history of my son without having to say “no mouth” and “no spinning” is beyond exciting to me. Ike and I meet with her and describe everything from my pregnancy, the birth, nursing, infancy, milestones, physical issues, medical history, lab work, scans and behavior. It’s refreshing to hear her use the word “organize” when referencing his treatment plan and care. Up until now I had been flying solo with regard to coordinating his diet and therapy.
We mention his excessive ear wax and scales on his scalp (see how thorough?) and immediately she responds with her hunch that he may have a deficiency in fatty acids. Huh. Interesting. She asks me about what I’ve read and for the first time I rattle off all of the autism books that I’ve digested. And as I detail each title, she’s nodding and even commenting that she’s met some of the authors of these books.She’s either being nice or she seems genuinely impressed in my reading consumption. She mentioned that Dr. Bock’s book, “Healing the Four A’s…” is particularly difficult to digest because of all the science included. I agree and mention that I made several notes based on my reading that we would most likely discuss in our final appointment. This book will come into play after our second visit.
Dr. Compart explains another biomedical doctor’s approach by using the analogy of a person sitting on several thumbtacks. You remove one thumbtack, and the person is still obviously in pain because there’s several other thumbtacks remaining. This seems like a pretty obvious statement but when referencing approaches with autism, the water gets a little murkier. So her sentiment was that we would try to find and remove the thumbtacks one by one. Sometimes she gets lucky and finds a really big thumbtack, and after removing it, for example, dairy or gluten, the child improves dramatically. For other children, the puzzle and process of finding and removing these thumbtacks, is much more intricate. Our job was to identity the thumbtacks. We left this appointment and Ike used the words “hero” to describe her. She is my hero! Finally a physician who has a holistic approach and a genuine interest in helping our son.
Enter Mighty. This is the appointment where we get to bring our little superhero along. In the waiting area another little boy, most likely on the spectrum, attempts to interact with him. Mighty is more interesting in taking a dump truck and banging it on top of an infant toy. I wonder how long this other little boy, who seems curious and interested in Mighty, has been coming and what sorts of intervention had he received. I haven’t found a tactful and sensitive way to ask other parents about their journeys when I’m a complete stranger. I’ll work on that…
Dr. Compart comes out in the waiting room and instead of inviting us back to her office, she sits down on the floor and studies Mighty while excitedly playing with him. Eventually we tempted him back into her office with the same two toys that had captured his fixation. Once there he began to flit from toy to toy in her office, playing with no function or purpose, just toting objects around the room with joy. He spun in circles a few times and displayed some ocular pulling where his eyes shift to the far left corner, but otherwise, he was incredibly engaging. He made excellent eye contact and seemed to visually check in throughout our time there. Dr. Compart even comments on his excellent eye contact even saying that there’s definitely someone in there who has something to say. I agree, wholeheartedly and I’m thankful she sees it too.
She inquires about his sounds and as I begin to rattle off his sounds, he begins to make them too… “yeah yeah yeah” “boo…. kkk” “ka ka (verbal stim more than a sound), “ha…”, “goo… uy” (sounds like good guy), and “ike”. Of course he can say “Ike”, the Bean said “daddy” first, so obviously our son would find a way to say his name. Sigh.
She studies his ears, his face, his back, stomach, arms, legs and feet. We discover he’s flat footed. Interesting. I find it all comforting knowing that she is combing over things carefully and intently. Again, I love her.
At one point during her developmental portion of the evaluation, she rings a bell in his ear, and he turns to look to see where the noise came from. This is a first. When we had this same evaluation done last September, Mark appeared deaf, as if he had not heard anything, let alone a loud bell being rung next to his ear. He displayed the same reaction when a smoke alarm went off one afternoon at home. Nothing. No response, but today, he noticed.
Then she reviews his labs. At our previous appointment I had given her a ream of paper that included all of his labs, MRI, EEGS, ABR and all other evaluations. She combed through them and had discovered that Mighty’s carnitine level was very low. She asked who ordered the labs and I explained that our local pediatrician did. She questioned me on this because this was a pretty sophisticated test and most doctors are not apt to check it. I later discovered that our local pediatrician did in fact order it and it was partially at my request after I had read Dr. Kenneth Bock’s book on Healing the 4A’s. I had noted several different levels of things that I wanted tested and I added that I was concerned regarding his low muscle tone and delayed gross motor skills. It turns out that the lab work that was ordered returned and never scrutinized. Thankfully Dr. Compart took notice.
There was some concern regarding the impact that this level had on his heart function so we were encouraged to contact Kennedy Krieger’s neurogenetics department to determine next steps.
I begin googling “carnitine deficiency” and I found several articles and studies detailing that children found to have low levels have demonstrated a whole list of autistic symptoms. Supplementation improved these behaviors and in some cases reversed the autism that had set in and prevented symptoms in other children. I’m excited by this possibility and incredibly interested to see what would happen if we began giving Mighty carnitine.
I reached out to our genetic counselor who’s a saint and she inquired to the mitochondrial disorder physician in Kennedy Krieger’s neurogenetics department. Upon review of the labs they determined that we need to do a repeat of the Organic Acid Urine test and a renal function test that involves urine and blood work. They want to make sure that his kidneys are functioning thus ruling out a tubular problem. I’m assuming the OAT will further check his cardiac function but I’m not totally certain. I’m just trying to keep up!
The purpose of this appointment was to bring all of the pieces together. Dr. Compart gave us an incredibly detailed 15 page report detailing her findings based on all of the labs, tests and her developmental assessment of Mighty. One of the most remarkable things I walked away with was that she noted the incredible progress he has made from December to now. She referenced his first speech pathologist evaluation at CARD. That was such a horrible day. Less than a week before Christmas we visit CARD for the first time and are lead to a tiny dark room with several different toys on the floor. My little buddy made no eye contact, and spun for about 80% of the time. We just sat there helplessly watching our boy spin on the floor in circles while the speech therapist tried to elicit some type of interaction or shared interest. Nothing. Fast forward to today, Mighty makes excellent eye contact and though we still have a long way to go until we reach meaningful or purposeful play, he is much more aware of others in the room and only occasionally spins in circles. BIG PROGRESS.
As per usual, I was armed with a long list of notes on my phone to ask her about. Dr. Kenneth Bock’s “Healing the 4 As…” book was my guide. I had several different therapies, supplements and tests that I wanted to explore. Dr. Compart, also as per usual, was often one step ahead of me explaining different approaches and their appropriateness in Mighty’s case.
We discussed phenols at length and determined that this may definitely be an issue for Mark since he demonstrates a bright red left ear after consuming certain things, like fruits, and he has bouts of inappropriate laughter, along with night wakings and hyperactivity after meals. She may recommend that we do an epsom salt lotion that’s rubbed into the skin multiple times throughout. It’s thought that this is much more effective than epsom salt bathes, whose detoxifying properties are very temporary.
Though we don’t have a plan yet for his supplements or biomedical treatment, we have been given a variety of tests that have to be done first. We have to collect a urine sample while he’s sleeping to obtain “first morning urine” to send off to Genova Labs to be tested for everything under the sun, including yeast, vitamin levels, toxins and how his cells are performing. This test will take four weeks and when it returns, we will review and create a plan.
Now to get his pee… and not totally screw up his sleep….