My son is now 13 years old. He is officially a teenager, although I still can’t understand how that happened so soon! It feels like he just learned how to speak, read, write, ride a bike, and just got through all of the childhood milestones that we, as parents, eagerly look forward to & document. Among those milestones is a child being able to eat on his own. This is one that we have struggled with and he is still working on to some extent. However, it is not because of a developmental disability. It is because of a gastrointestinal disability.
My son has had a feeding tube for the past 6 ½ years and has been consistently trialing foods for over 6 years. Most have been successful, and he has been fortunate enough to keep the majority of the foods he has trialed. We have been able to pinpoint most, if not all of the foods that trigger his Eosinophilic Esophagitis. We still have a handful of foods left to trial, but for the summer, we decided to have him trial a medication (swallowed Flovent) and eat everything that would otherwise make him sick.
While the long-term goal is to have him control the disease with a safe diet, he also needs to know what options he will have going forward into adulthood. As an adult, he will likely be going on vacations, out to lunch with friends or co-workers and, dare I say it…(gulp) DATES! He needs to know if there is a medication that will work and, if so, how well it works, what the side effects might be, and so on.
Flovent (fluticasone) is one of the medications that are used as off-label treatments for Eosinophilic Esophagitis (EoE). It is an inhaled steroid medication that is commonly used for asthma, but for the purposes of treating EoE, it is swallowed instead of inhaled. He takes 2 puffs in his mouth (one-at-a-time), swallows, and then waits 30 minutes before eating or drinking. He does this once in the morning when he wakes up and once at night before bed. So far, so good!
He has been taking the medication and eating a normal diet since the end of May. He was able to enjoy a week at Boy Scout Camp without worrying about getting enteral feedings at the nurse’s cabin or having to wait while I warmed up the safe foods that I brought with us. He is able to enjoy “Pizza Wednesday” with everyone else at school (he is going a few days a week during the summer). He was able to eat out during field trips, too. We have been exposing him to a variety of different types of foods. He is still getting used to the flavors and textures, but he’s adapting quickly and enjoying the ability to eat all of the things he has been avoiding for the past 6 ½ years.
Not all medications work the same for everyone, and thankfully there are now a few options. Some people find that Flovent works well, but for others it doesn’t work at all or only works for a short time and then becomes less effective. Budesonide is another medication that is being used to treat some patients. It is mixed with Splenda to form a slurry, which is then swallowed. Both Budesonide and Flovent are steroid medications. Budesonide is also known as Pulmicort (for asthma) or Rhinocort (for nasal allergies).
There are clinical studies being done with another medication, an anti-IL5 medication that is delivered via IV infusions. That has reportedly been used rather successfully in many patients with eosinophilic gastrointestinal disorders. Thankfully, it doesn’t seem that my son will need that particular medication, but it is good to know that one day it may be an option for patients who do need it.
So far, the major downside of this whole process has been the length of time it has taken to determine the trigger foods, the method of delivering the safe medical food (the formula, which tastes so bad that he couldn’t drink it and needed a feeding tube) and the invasive nature of the procedures needed to confirm whether or not he is reacting to a particular food. Having an endoscopy with biopsies is currently the only way to be sure whether or not the eosinophils have infiltrated the esophagus and what they are doing in there (whether or not they have degranulated and caused damage, etc).
Of course, there’s also the affect it has had on him socially and emotionally, as he can’t normally eat what his friends are eating and that has limited his ability to socialize during lunch, parties, and so on. When he had fewer safe food options, he couldn’t handle being near others who were eating. He also understandably feels a bit self-conscious about having a g-tube in his stomach, although it has been much better than having an NG tube in that it is not easily visible.
I have always taught my kids that everyone has their individual struggles in life; some more than others, and some are more obvious than others, but everyone has them. We can allow those struggles to limit or even incapacitate us, or we can choose to overcome them as much as possible and not let them define us. I hope they do remember that through their lives, because our struggles will vary and change throughout our lifetime.
My hope for those with eosinophilic esophagitis and other eosinophilic gastrointestinal disorders is that, one day, there will be a safe and effective, yet less-invasive way of diagnosing the disorders and then determining if a reaction is taking place with food elimination and food trials, medications, etc. While I am obviously hoping for a cure, as is EVERYONE who is dealing with it personally or in a loved one, I am also hoping for cures to other autoimmune disorders like celiac, diabetes, vitiligo, alopecia, Hashimoto's disease (thyroid) and so on. I would also love to see a cure for asthma. Maybe one day, enough will be known about all of them to prevent the body from having the inappropriate immune reactions that occur in these disorders. I would love to see that in my lifetime.
As for Eosinophilic Esophagitis specifically, I am hoping that what my son has gone through will no longer be necessary in the not-so-distant future. I hope that there will soon be methods to more easily diagnose, determine the particular allergens responsible for each person, and treat the disease. I am very thankful that there is the knowledge and understanding to treat it at all, because it has helped him to become very healthy as a result, but he has gone through a whole lot to be healthy. At least he will have the knowledge to make informed decisions about his own care as an adult.
Just as when the mother birds kick their babies out of the nest, they hope those babies will fly, I hope and pray that my son will make good decisions as an adult and will be able to remain healthy throughout his life so that he will not just simply able to fly, but SOAR and accomplish whatever he attempts to do.
This is the 2nd annual Feeding Tube Awareness Week (February 5 - 11, 2012). There are NG (Naso Gastric) tubes, NJ (Naso Jejunal), ND (Naso Duodenal), G (Gastric), GJ (Gastric Jejunal), J (Jejunal) and TPN (Total Parenteral Nutrition). No one wants them and no one wants their children to have them, but when they are necessary, they can be a Godsend! 
If you see someone with a feeding tube, please don't make a face, stare, or ask "What's WRONG with YOU?" They don't have "cooties". It is an alternative, yet necessary way for them to "eat". Please give that person (especially a child) a smile and know that whatever the reason, that feeding tube IS a medical necessity and it is providing medical benefit to them. If your own child knows someone with a feeding tube, please reiterate your lessons of tolerance and understanding, just as you would with all other differences. They likely feel left out enough as it is, and we can never have too many friends who care.
