Alright, so in the world of EoE as we have always known, things can change and they can change quickly. We were blessed to have such a smooth couple of months in a row with Nathan.
Shortly after my last post, which was on September 1, Nathan began coughing and lost his appetite. At first we chalked it up to being a cold, but when 4 weeks had gone by and it wasn't improving, so I decided to give Nathan's GI doctor a call. He suggested that we start Nathan back on the Pulmicort slurry once a day. This was a bit upsetting considering that he had been off it for nearly 12 weeks at this point and had been doing great until now. I knew that there was a chance that he would need to go back on it, but had been so hopeful that avoiding the top 8 allergens would be all the treatment he would need.
It's a hard choice to make, either take away all of Nathan's food and feed him his EleCare formula only and stay off of the steroid, or put him back on the steroid so that he can have a handful of foods that he can eat without a reaction. Mark and I discussed it and we do want Nathan to eat food, so we are continuing with the steroid for now, although, it's such a frustrating feeling. I hate the thought that we may still be feeding Nathan foods that are hurting him, yet this steroid acts as a "band-aid" and keeps the inflammation down and symptoms at bay. But the thought of taking his food away from him again, is heartbreaking as well. Nathan LOVES to eat!
Nathan has been back on the steroid since October 5, his appetite returned after being on it for about 2 weeks, but his coughing has continued. It's not as bad as it once was, but it's still there. On October 19, I took Nathan in for his 18 month well visit ( 2 months late :o/ ) and Dr. Terry said that he heard a slight wheeze when listening to his lungs, so we started doing a combination of Xopenex and Pulmicort nebulizer breathing treatments with him once a day since then. This has helped with his cough a bit, but it's all too much of a reminder of his chronic cough that he had before we had a diagnosis for him. So I am still worried that the Pulmicort steroid isn't quite doing the trick and something is still irritating him.
We have a follow up appointment with Dr. Williams on December 2 and I am imagining that if his coughing is still present we will be scheduling yet another scope and biopsy to see what things look like in his esophagus. Before I get too carried away with the what-if of what all that could tell us I will just be patient and wait for the appointment to see what Dr. Williams thinks.
Yesterday we finally had our Feeding Therapy evaluation appointment for Nathan at the Children's Hospital. It was a long 3.5 hour appointment, but we feel it was very informative. We met with a Nutritionist, Dietitian, Psychologist, Feeding/Speech Therapist, and their Nurse Practitioner. It was nothing short of overwhelming, but we felt that they truly have Nathan's best interest in mind and they also are very familiar with Eosinophilic Esophagitis, which makes me so happy! They all evaluated Nathan together and individually so that they could put their minds together on the best approach to help Nathan.
They determined that he has a very weak jaw and tongue, which is causing him to fatigue easily during meals, and stop chewing his food and start swallowing it whole. This is why Nathan chokes so easily on foods that we do not cut into small enough pieces. We have been shown some chewing exercises to work on with Nathan to help him get stronger and learn to chew with his back teeth, right now he uses his front teeth to chew and his tongue to mash food up on the roof of his mouth. We are hopeful that these exercises will help him become stronger so that he can chew food correctly. Along with the chewing exercises, we are to offer Nathan table food in small pieces first at meals, and as he shows signs of fatigue, take the table food away from him and offer pureed foods to him. They want us to do a minimum of 6 ounces of pureed food a day right now, while removing 6 ounces of his EleCare volume for the day. The goal is to get Nathan to get his calories and nutrition from food and not formula, it will be a slow process, but any progress is good progress with that. This is an exciting thought, as I had no idea when this time would come for us to try this, but at the same time it's scary because we know that if we need to remove food from his diet again due to high eosinophil counts on a biopsy, we will need to rely on the formula again for his nutrition. For this reason, we are certainly not finished with his g-tube, and that will remain in place for times when it's needed. We do not want to go through that surgery again!
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| Nathan working on his chewing exercises. |
Unfortunately, the waiting list for weekly feeding therapy is 6-9 months from now. Mark and I will work with Nathan daily doing these chewing exercises 3 times a day before meals, until we can get him in to the weekly program at the Children's Hospital . They are also having the Early Intervention program for our state contact us, as they may be able to come to our home and begin working with Nathan now, instead of waiting 6-9 more months. We are praying that this will work out and be a good starting point in getting Nathan's chewing to improve.
Another concern is his speech, which they think is attributed to his weak jaw and tongue as well. Nathan's mouth and tongue can't do what they need to do to make the proper sounds to say some words correctly. They think these same exercises will improve this as well.
I apologize for the lack of posts here lately, I will work on keeping things more up to date on the blog. It's much easier for me to post as we go than to try to squeeze so much information into one post like I have done today.
We are headed to Mark's parent's church annual Trunk or Treat tonight, Nathan will be going as Mickey Mouse! I will be sure to post pictures in the next day or two!
