I don’t know why I even plan out what I am going to write about for these posts because that’s rarely what I actually end up writing about. Yesterday, Facebook reminded me that six years ago we received a diagnosis for my youngest daughter after a very long trying few years. This post is for all you moms out there who have a child or children with special needs. Guys, it is hard! Can I get an amen? Man, I can’t even begin to describe the difficulties we’ve had with her since the day she was born, actually more like the day she was conceived. With my oldest daughter I had a very easy pregnancy, gained very little weight, no morning sickness, and had a quick easy birth. With my youngest daughter I gained a ridiculous amount of weight, was sick pretty much the whole nine months, and had a much worse labor. I basically had a very difficult pregnancy where I ended up on bed rest for an entire month before she was born. Did I mention that I did most of the pregnancy, birth, and first three months of her life while my husband was deployed??? It was probably the most difficult time of my life. From the very beginning she was an extremely fussy baby. She cried all the time. In fact, the witching hour was more like the devil’s hour, and there were times that I just had to put her down screaming and walk away. There were even those days where I had to leave her in the crib crying while I sat down on the floor and cried myself. Anybody else ever been there? Exhaustion is a word that doesn’t even begin to describe how I felt in those first 3 months. On top of all of the crying, she threw up constantly. My older daughter had GERD as an infant so they just assumed that it was the same for this one. They said she was colicky, had GERD, put her on an antacid, and sent me on my way. Y’all, that medicine didn’t make one bit of difference because that’s not what was wrong with her. She continued to cry and vomit ALL THE TIME.
When she hit 6 months old, we started to introduce baby food. Well that didn’t go very well at all. She gagged at the sight of most of it and refused to eat 80% of it. She also threw up a lot of what she did eat. This continued month after month. Every doctor said, “She’ll eat when she is ready.” Really? “She’s just going to be a picky eater.” Really? “Just keep offering it to her.” Really? I knew that what we were experiencing was not normal. She was not a normal picky eater. I knew there was something wrong but NO ONE would listen to me. Everyone kept brushing it off or offered advise on how to get her to eat. None of it worked! By the time she was two years old, the only foods that she ate were applesauce and yogurt. Oh, and not just any applesauce and yogurt, it had to be a certain brand and flavor. I’m not kidding! I would buy cinnamon flavored applesauce in a different brand. I would dump it out of the package so the wouldn’t see and give it to her, and she would instantly know the difference just by looking at it and would refuse to eat it. She did eat things like goldfish, cheerios, and puffs, but that’s it. At every appointment I would tell this to the doctor and every time I got the same responses. This continued until she was four years old. She still only ate applesauce and yogurt for EVERY SINGLE MEAL! We couldn’t go anywhere without packing applesauce and yogurt for her. Otherwise she just wouldn’t eat.
At her 4 year old checkup, the doctor FINALLY took notice. Her BMI dropped from the 75th percentile to the 25th percentile. Suddenly they were concerned. At this point, they decided to refer her for feeding therapy. We started with feeding therapy once a week, and it quickly switched to 2 times a week when her therapist realized how bad it was. Then we had the addition of occupational therapy because they thought it might be a sensory issue. They quickly learned that the sensory issues were only related to food and nothing else. She could touch all kinds of gooey stuff as long as it wasn’t food. She was dismissed from OT after a few months and continued with feeding therapy twice and sometimes three times a week. She did begin to eat a few new foods with therapy but not many. In the meantime, I had a good friend working behind the scenes to get me in to see a feeding specialist. She had experience with feeding disorders and actually believed me that something else was wrong. That, along with the help of her feeding therapist and my persistence with her pediatrician, finally paid off. We were expedited to see not only the feeding specialist, but we also got bumped up to see the whole feeding team. That appointment would change everything.
We met with a team of 7 specialists including a GI, allergist, feeding specialist, speech pathologist, occupational therapist, nutritionist, and a behavior specialist. We were in a room with them for 2 hours while they, watched her eat, offered her non-preferred foods, watched her swallow, and asked me a million questions. It was very intimidating and nerve wracking. At the end of the 2 hours they all went outside and conferred for a few minutes. Then they came back in and the GI doctor said he knew what she had. He said he needed to do a test to confirm but that he was fairly certain that she had something called Eosinophilic Esophagitis (EOE). What the what???? I couldn’t even pronounce it let alone know what in the world it was. How he knew that just from what I said was pretty incredible and a credit to what an amazing doctor he is. Although this isn’t exactly his name, my daughter always called him Dr. Suess. It was so cute! He was our lifesaver! Anyway, we scheduled an upper and lower endoscopy with him for a few weeks later as well as an appointment for allergy testing to confirm the diagnosis.
In the meantime, I was looking up everything I could find about EOE. I will say at the time, there wasn’t a whole lot of information out there. There is much more now. This was a newly discovered disease (within the past 10-20 years or so at the time) and very little was known about it. Basically EOE is an inflamed esophagus usually caused by a allergen typically related to food. If you are curious about more of what this disease is, you can read more about it here and here. Some of the symptoms of EOE include reflux that doesn’t respond to usual therapy, dysphagia (difficulty swallowing), food impactions, failure to thrive, abdominal or chest pain, poor appetite, malnutrition, food aversions, eczema, and difficulty sleeping. My daughter has had all of these symptoms and more, and they can come and go at anytime. The day of testing finally came and it was confirmed almost immediately just by the look of her esophagus that she did in fact have EOE. The biopsy results came a few days later to officially confirm the diagnosis, and she began what would become a large list of medications.
At this point we began looking for what foods were triggering the EOE. Initial allergy testing showed sensitivities to corn (which is in EVERYTHING), peas, and squash. The last two weren’t a big deal since she wouldn’t eat those anyway. We just avoided trying to introduce them in therapy. Further allergy testing revealed a sensitivity to eggs. We began avoiding all of those foods, but she wasn’t getting better and introducing new safe foods was still a challenge. At this point her allergist decided to also remove all dairy, as this is a typical trigger for many EOE patients. You will remember that one of the only two foods that she would eat at that time was yogurt. Taking that away was very hard to do but it was the key to her getting better. Now we were not only limited in what she would eat, but we were also limited in what she could eat.
We have spent years in feeding therapy to get her to eat new foods. It has been a long, hard road. I would say that even 6 years after the diagnosis, it is still a daily battle. Her list of foods that she will eat is still very limited. We can’t go anywhere without thinking about whether or not there will be foods she can eat. I never realized how much this world revolves around food until now. Birthday parties, camps, school activities, holidays, celebrations, and more all revolve around food. She has wanted to go to a sleep away camp before, and I just can’t let her because I can’t trust that she will eat enough while there. Sending her to a sleepover at a friend’s house is also very difficult. She has actually only ever slept over at one friends house because that mom took extra lengths to make sure my daughter had safe foods that she would actually eat. I am super grateful for that. My daughter has set backs constantly where she starts loosing weight and the doctors threaten with feeding tubes and intensive inpatient therapy, but thankfully it has never reached that point. She has been labeled as failure to thrive because she is so small and doesn’t gain weight like she should. To see her compared to her classmates is shocking. She is so much smaller than most of them. She doesn’t look healthy sometimes. Her eyes are often sunken in; she is pale; she tires easily; and she is so skinny. She is literally afraid of food. She has developed an anxiety disorder, eating disorder, severe migraines, and a lot of anger all as a result of the EOE. The anger is mostly directed towards me because I am the one that is in control of the food. I am the one that has to make her eat. I am the one that forces her to go to therapy. I am the one that forces her to try new foods. I am the bad guy. I literally feel like she hates me most of the time. I have to be the bad guy, though. If I don’t worry about it and make her eat, who else will? What will happen to her if I just let it all go? I am afraid to find out. I blame a lot of it on the doctors that didn’t listen to me all those years ago. If we had gotten the diagnosis sooner, we maybe could have had avoided all of the anxiety, anger and fear of food. She has also been diagnosed with ADHD. She currently takes 6 medications a day. That number has been higher than that at times. She has to have the upper and lower endoscopies at least once a year (more if she develops more symptoms). It. Never. Ends. Even though she is in what they consider as remission right now where she is back on all foods and her EOE is under control with the help of medications, it is still a daily battle to get her to eat and trying new foods is pretty much out of the question.
I am telling you all of this to let you know that it is hard. For all of you moms out there with kids with special needs, I feel you. I know how much of a struggle it is every single day. I know how much you worry. I know how many nights you lay awake thinking about it. I know how many tears you have shed over your child. I know how many prayers you have offered up. I know how many times you have begged God to make it all go away. I know how many times you have wondered what you did wrong for this to have happened. I know how many times you have blamed yourself. I don’t know if or when this battle will ever be over. I don’t know if or when I will stop worrying about what she eats, how much she eats, if she is gaining weight, or how much the anxiety and anger she has will affect her long term. I don’t know what all of these medicines are doing to her little body. I don’t know how many schools or how many times I will have to fight to get her the 504 accommodations she needs in school. That has been a battle so many times that I have lost count. I am a special education teacher. I know the laws and I know my rights and what my child needs to live, yet they continue to try to pull the wool over my eyes to not give her what she needs. Eating is LIFE or DEATH people!
I am here to tell you that YOU know what is best for your child. No one knows them like you do. YOU have to be your child’s biggest advocate. YOU have to fight the fight, whether it is with your child’s doctors, their school, with your family that doesn’t understand, or with your child . YOU never give up. Even when you feel like you can’t do this anymore, you can. You will find the strength to get up and make it through the next day and the next. You have to take it one day at a time, step by step. It has taken me a long time to learn that. It will be hard. It will be crushing. There will be days, weeks, or even months when you feel like you are drowning. In the words of Dory, “Just keep swimming.” You may be swimming upstream for a long time, but it will get better. I have to believe that and you should too. We have to have faith and hope that things will turn around, that our kids will grow up to be well-functioning adults, and that life will become easier. One day! One day at a time! .One day it will be better! One day you will wake up and realize that the fight and struggle was worth it. Look for the positives. Look for the good in your child. I know that my child has a kind heart. She is a social butterfly. She is independent. She is resilient and strong. Focus on those things instead of the bad. We’ve got this! You’ve got this! I’ve got this!
Anchored and Swimming Upstream,