I’ve written this story in my head a thousand times. I’ve thought about how I could possibly even begin to explain such a long, bizarre situation to anyone that would care to read it. I’ve told the full story only a handful of times because it’s quite frankly exhausting to explain. I’m either met with one of two scenarios: a deer in the headlights look and a quick change of subject, or a quick interruption and comment such as…”Tommy looks like such a big, healthy boy! Give it some time, he’ll grow out of it.” It became too much for me to handle at times so Rob and I just continued to power through this with the support of our family and moved forward with our search for answers for our son. Throughout the years I’ve written dozens of emails to his pediatrician begging for reassurance to my constant pleas for help. “Something is wrong with Tommy…He’s not eating…He’s not eating…He’s not sleeping…I feel like he’s sick all the time…I think something is wrong with Tommy.” Every single time I was met with the same response, “He’s growing proportionally. He’ll grow out of it. Your giving him too much milk, reduce it to one cup a day. Have you tried eliminating food all together? He’ll eat when he’s hungry.” Same song, different verse every single time.
In retrospect I always knew something was off. He was never a good eater. Ever. Nursing was such a struggle, but I stuck with it as long as I possibly could while working full time. Tommy was never a good sleeper. Ever. We tried to introduce foods around 8 months and although we were consistent, he was never interested. We believe around the 18 month mark was possibly the point where he started to show some signs of what was to come. His food intake dwindled at a point where most toddlers were just beginning to grow to love food. He narrowed down approximately 5-10 foods he would put in his mouth, if we were lucky. His patterns have always been very cyclical. He will go days with nothing but chocolate milk (16-24oz heated for exactly 40 seconds in the microwave) with a little bit of Hershey’s sugar free syrup, and water. Milk is his primary fuel. Maybe a few berries, or a banana. Some crackers or goldfish. He’s also had really good days. He may eat one Eggo brand blueberry waffle with some raspberries for breakfast; and if we’ve won the lottery, he’ll eat a cheeseburger.
His only source of protein in his entire life has been milk and McDonald’s Happy Meal cheeseburgers with meat, cheese, and bread only. It is literally the only meat he has ever had in his life. I’ve been judged beyond belief for it, but until you have a child that doesn’t eat, you have no idea. It’s called survival. I cannot tell you how many times a week I drive through McDonald’s praying that maybe he’ll eat a burger. There have been countless days where he will tell us he wants a burger several times and then when we hand it to him he cries and throws it on the ground. About three weeks ago, Tommy was starting to spiral again and he hadn’t eaten anything but some berries Wednesday morning. It was now Thursday morning and he had gone almost 24 hours with basically nothing but a couple of glasses of milk and water. He was exhausted. He didn’t sleep well, because he was starving. His eyes were heavy, and I knew I had to get something in his stomach. I put him in the car and raced to McDonalds at 10:00 am praying he would eat some pancakes. As we were pulling in he started to cry and became hysterical because he was asking for a hamburger and they didn’t have any available. I begged the attendant with no avail. My three year old son, was in the back, screaming for a hamburger at 10:00 am and I just lost it. He eventually ate a tortilla in the car, but not much else the rest of the day. This is just one piece of the bigger puzzle that was beginning to take shape.
In October, our precious Claire came in to this world and Tommy couldn’t have been more loving and excited to greet her. She, thank God, has always been a very easy baby so, while the first few months were hard…they were nothing like what you experience with your firstborn. Aside from the expected regression and adjustment in the weeks following Claire’s arrival everything seemed to be going smoothly. He was, as usual, not eating much. He had good days, and bad days. His sleep was minimal, but consistent. He usually would wake up in the middle of the night but if it was early enough, we could usually get him back down with, of course, a cup of chocolate milk.
Tommy’s routine of school each day helped a lot in the first few months after Claire was born. His precious teacher supported him so much this past year. She was one of his strongest advocates and we worked very closely with her as different flags started to raise. He would VERY rarely eat during their snack time. He started to regress long after Claire’s birth. He became anti-social. He struggled with even the slightest changes in routine. He would easily break down in tears and had a lot of trouble getting back to a calm state. He would cry the minute we told him we were going to a restaurant and beg us not to go because he didn’t want to eat. Everything was a struggle.
Then, what seemed like overnight, the first week of March of this year our three year-old baby boy and our little world as we knew it shifted. Tommy’s usual 10 (+/-) foods dwindled to just about 3-5 things (including milk) he would actually eat. He would usually eat breakfast only each day. He would have milk for lunch and dinner and I would force water often. He started waking up every two hours in the night and often would wake up at 2:30 or 3:00 am and not go back down until 5:00 or 6:00 pm the following evening, without a nap. He was exhausted and emaciated. He had nothing in his body. His skin was pale, he had deep bags under his eyes, and he was sluggish beyond words. I remember holding him one afternoon and rubbing my hands over his forehead and as I moved my hands through his hair it felt brittle. I honestly don’t know how Rob and I did it. He would come home after a long work day and leave for graduate school at night twice a week. I was nursing a 5 month old baby, working part time, trying to be a supportive mom and wife and I was broken.
I remember several very early mornings between 2:30 – 6:00 am sitting in my bed Googling anything and everything I could think of to try to find some answers for my baby boy, as he sat next to me wide awake in the middle of the night. I came across a segment that ABC Nightline had done on children with severe eating problems related to Food Neophobia and Selective Eating Disorder. When I watched the video I cried thinking maybe this is what my son is struggling with. You can watch the video below.
I called Duke University the following morning to get more information and placed Tommy on a two-year waiting list for their food neophobia (fear of food) program for children. Although two years of waiting seemed excruciating at the time, it gave me some sense of relief to have something to fight toward. The following morning after another miserable day of no food and a night of no sleep I sent this email to our pediatrician one morning at 4:00 am as a final desperate plea for help…
We have had an excruciating week with Tommy and I’m writing to you as a friend and a mommy desperate for a helping hand. I know this may run beyond your expertise but I’m asking for an opinion or thoughts on how you think I should go about researching additional treatments for him. I feel like I am constantly walking on egg shells worried about saying or doing something wrong as it relates to food that may increase his anxiety or harm him mentally even more. I feel like his anxiety, body, etc is slowing spiraling out of control and I am so incredibly worried for him.
He hasn’t slept past 3:00 am every day this past week, and between Tommy and Claire, Rob and I are averaging about 4 hours of sleep a night if we’re lucky. Wednesday night I got 1 hour. I am a mess! Tommy is still suffering from the same congestion he had when he came in to see you the last time. I feel like he has absolutely no immunity to any sort of illness because he doesn’t have any nutritional substance in his body. His usual food intake over the past week or so consists of chocolate milk and if we are lucky he will eat maybe 1 or 2 chips. This is every single day. He will occasionally drink the equivalent of probably 5oz of water a day, again, if we’re lucky but it’s usually because I force him to drink some water. He is miserable, exhausted and quite frankly just a different child. My child is wasting away before me and I am crying out for help.
I’ve done some research and came across two things that I think describe Tommy EXACTLY as it relates to food and anxiety: Selective Eating Disorder and Neophobia. I am wondering if we need to seek counseling with a specialist specifically relating to eating disorders in children. I keep researching but can’t seem to find anywhere that deals specifically with children. What is the best way to research specialist in the medical community?
My mommy gut instinct tells me we are putting a band-aid on his anxiety and not treating the right thing. I think it’s helping a bit but my gut is that we are still not yet at the root of the problem.
Again, I know this is beyond your realm of expertise but I’m seeking help from you on how I might go about researching alternative treatment options for him. We would hop on a plane and go across country if it meant him getting the treatment he needs to become the child that I know is inside of him. Bottom line is…Rob and I are exhausted mentally and physically and don’t know where else to turn but you. I’m so sorry to unload this on you but you are my only hope for help.
I got a call the next day. In addition to everything else I had emailed her about, I asked if there was any way to test Tommy’s blood for a possible problem internally and the response I received was, “No, there is nothing we can test him for specifically, but I really think you need to see a nutritionist.” I kindly thanked her for her time and ended the call. I felt totally deflated and defeated.
The next week, a dear friend of mine who knew Tommy well and had seen his struggles first hand, recommended I have Tommy evaluated by a friend of one of her mutual friends who was an Occupational Therapist. I called her the next day and broke down in tears over the phone. I was crying on the phone, unloading all of my fears to this woman I had never met, begging her to help us. She assured me she could help and I believed her. We arranged for her to evaluate Tommy the next day. It was the best decision we ever made.
Tommy’s occupational therapist, Mandy, arrived the following day and after a very thourough evaluation she immediately knew Tommy was deeply struggling with Sensory Processing Disorder (SPD). The most clear definition of SPD comes from The STAR Center website: “Sensory processing refers to the way the nervous system receives messages from the senses and turns them into responses. For those with Sensory Processing Disorder, sensory information goes into the brain but does not get organized into appropriate responses. Those with SPD perceive and/or respond to sensory information differently than most other people. Unlike people who have impaired sight or hearing, those with Sensory Processing Disorder do detect the sensory information; however, the sensory information gets “mixed up” in their brain and therefore the responses are inappropriate in the context in which they find themselves. Pioneering occupational therapist, psychologist, and neuroscientist A. Jean Ayres, Ph.D., likened SPD to a neurological “traffic jam” that prevents certain parts of the brain from receiving the information needed to interpret sensory information correctly.”
We were so relieved to finally have some answers, and the more we learned about SPD the more it all made sense. This disorder has been lurking and reeking havoc on our family for so long and we would have never know had we not continued to fight for Tommy. SPD is silent, that’s one of the scariest things about it. There are so many subsets of it that I could go on and on about; but only after peeling the onion and really digging deep did we begin to piece the puzzle together.
We knew Tommy had severe struggles with eating; but after her evaluation Mandy informed us of several other things he was struggling including: low muscle tone, hyper-mobile joints and decreased strength which causes him to work his muscles twice as hard to do every day tasks. Mandy continued to work with Tommy over the course of several weeks and literally brought him back. He started to make slow baby steps of improvement. We knew we had a very, very long road ahead for Tommy but we had so much hope for improvement.
On Easter Sunday, I was speaking with a family member who knew of Tommy’s situation and she mentioned a friend’s daughter how also struggled with severe feeding issues resulting from SPD. She mentioned her friend took her daughter to a place called the STAR Center and she had seen tremendous success. I researched the STAR Center immediately when we returned home and I had them on the phone at 9:00 am the following morning. That week we completed hours upon hours of paperwork and Rob and I had several conference calls with the feeding and occupational therapy teams to make sure Tommy would be a fit for the program, and thank God, he was. We arrived for our 8-week intensive therapy program a week ago today and we couldn’t be in a more perfect place. This week has given me the hope that this place will truly save Tommy’s life.
As I sat in the waiting room on our first day I looked over and stared at my precious boy. We had come so far and been through so much and we were finally here…I had to hold back tears. There were a few other families waiting as well. Children that looked just like Tommy but all seemed to have different struggles that had led them to the same moment we were all sharing. I looked at each of the parents and smiled. You could see it in their eyes, they were beyond exhausted. They had made it through the door with their precious babies and they were at the end of their rope, desperate for help. Desperate for answers. These parents are warriors for their children and without even saying a word, I felt a deep connection with each of them.
The past few days have been filled with intense evaluations each day with the feeding and occupational therapy teams. Tommy has been observed by a huge team of specialists all with years and years of expertise in SPD and feeding problems. We’ve learned so much about SPD, more than I could have ever imagined. Toward the end of the week we had a three hour feedback session with the head of the feeding team and a two hour feedback session with Tommy’s occupational therapist and sadly we learned Tommy has been struggling with so much more than we originally anticipated. He has a very long road ahead of him and we will have to make several adjustments in our life but ultimately our hope is that he will one day become a successful eater and we can learn to manage his specific struggles with SPD. We will do everything in our power to make that happen and we are in the best possible place to ensure a bright future ahead.
Tommy will have therapy every day for eight weeks (1.5 hours of feeding therapy in the morning and 1.5 hours of occupational therapy in the afternoon). It is my hope to photograph different moments each day so that we will never forget these moments in Tommy’s life. I hope that one day he can look back and read my thoughts and know in his heart how much we fought for him. I am still a very young mom but I have learned the hard way that everyone must advocate for their children. I sat back and listened to and believed one opinion for three years, knowing full well that my gut was telling me something was not right.
If you’ve made it this far and are still reading, thank you. I hope you will share this information if you know of a friend that may need to hear it. I would have never known about SPD or the STAR Center had it not been for me sharing Tommy’s story with those that I trusted would listen. I’ve learned to continue to ask questions and never be afraid to ask for help. I would encourage everyone, in any situation they may be experiencing, to get second and third opinions; and most importantly, trust your gut…always.