In the past few months, although my presence here has been quiet on my blog, our lives have been anything but. I realized I had over scheduled myself/ over volunteered this year and became overwhelmed. In the midst of my craziness though, Colin had a medical development that totally caught us off guard.
Day to day with Colin had been fine for so long that we took it for granted. We’ve been eating/cooking/Living with MSPI for so long that we don’t notice it that much. It is just another part of our lives we roll with. And as we became comfortable with all of his sensitivities and found a diet that worked, we assumed that the toughest days were behind us and Colin would probably grow out of this. Or if not, we were ok with it since he and the rest of our family knows to plan and accommodate for what he needs.
At the end of this winter however, food again became the focus of every day. We had noticed Colin had some troubles with food, specifically chewing and swallowing. Eating had never been easy due to his open bite so we didn’t think too much about it. He seemed to be spitting out more food though over the last 6 months to the point where I wondered if it was time to get an outside opinion. We talked with our pediatrician and then we made an appointment with an occupational therapist in our school district for 2 months out. While waiting for this appointment to come, one weekend suddenly Colin stopped swallowing any food. He would move food to the back of his mouth like initiating a swallow, but it would go no further. Water, smoothies and oatmeal thinned to a liquid would go down but that was it. I figured it was a sore throat or a tonsil issue, but he wasn’t sick and the pediatrician was very concerned. The pediatrician couldn’t see any physical problems and got Colin to see a GI two days later.
In the meantime I was buying baby food, pureeing food and making smoothies for every meal, wondering if we were headed back to our Neocate days. I was really wishing I hadn’t given away my baby food mill. Colin was so desperate for food that wasn’t a smoothie that he suggested I put his sandwich through the potato ricer. So I did. Cue lots of laughing, mess and the conclusion that turkey sandwiches aren’t meant to go in a potato ricer. (He and I still giggle about this cooking experiment.) We got into a great GI who heard his history and said it was either Eosinophilic Esophagitis (EOE) or reflux (GERd) and that we should start Prevacid. So we gave him prevacid capsules (opened and mixed into yogurt) but there was very little improvement over the next 5 weeks. Colin could eat some very soft solids like cream of wheat but he would constantly clear his throat and then sometimes he would start to panic when his throat felt clogged. He would cry and beg to go to the hospital. He was moving air and not choking, but these were scary moments for all of us while we waited for the painful feeling to pass.
During meal times I stayed with him while he ate to make sure he was okay. Meals took 45 minutes or more and he would eat tiny tiny pieces, spit out half of it but still have problems. Sometimes liquids would come back out. I thought that it was like having a baby again. My days were making soft food, feeding time, clean up a huge mess (from all the pieces and things spit out) and then repeat. Since Prevacid didn’t help Colin, the GI requested an endoscopy with biopsies to check his throat, stomach and the beginning of his small intestines. The doctor expected to find EOE cells based on Colin’s food history.
The scope went way easier than I expected. I had made a book of his sister’s trip to the hospital from a year before and we read it to Colin several times so that the places and procedures at the hospital were familiar to him when we were there. It also helped that Colin actually wanted to go because he was distressed about his food situation. Lastly, the hospital was awesome. It had a children’s wing so everything is kid friendly. The nurse gave him Versed before the IV and anesthesia, so he was feeling relaxed and sleepy before it began. He doesn’t remember much of it. After the procedure he had no pain or issues other than working the Versed out of his system. He was like a drunk kid, wanting to run around and race cars but if I let go of him, he’d run into a wall. I couldn’t leave him alone for a second and I hadn’t anticipated this part. It was kind of funny but I was glad my husband was home since I couldn’t even leave Colin for a second to use the bathroom myself. The immediate results of the endoscopy was everything looked ok but there were white plaques at the top of the esophagus. The doctor said it looked like EOE but usually you see them at the bottom of the esophagus as well. So we had to wait for the biopsy results for a conclusive diagnosis.
Ten days later the biopsy came back negative for EOE cells. A huge part of me was relieved, since EOE is not a diagnosis that has easy answers. But we were disappointed in that we were nowhere closer to figuring out what was wrong with Colin. By this time he was looking so skinny from his limited diet.
The doctor started Colin on Levsin (hyoscyamine sulfate tablets) to calm his throat at mealtimes. Her theory was that it was an esophageal spasm. So we gave the tablets a try. They were tasteless and dissolved easily and quickly under his tongue. Within a week we saw major improvement. He could eat a larger variety of textures and we had no more clogged throat-panic episodes.
So here we are today, about 3 months from when this started (It feels so much longer). Colin is still eating a limited diet of soft foods. He loves hardboiled egg whites, raisin toast with lots of his butter so it is soft, bananas, a few types of cereal and some crackers. He can eat a jelly sandwich now but his favorite food, peanut butter, is too hard to swallow. He has been eating often and has put weight back on.
The GI said 50% of the time these spasms are caused by a virus that irritates the nerve endings in the throat. The Levsin helps calm it and eating is the way to retrain the throat to handle food. So we’ve got to keep eating and trying new textures. (Easier said than done with a stubborn and 4 year old.) Over the next 2 months we are supposed to taper down the doses of Levsin and hopefully it will be something he just takes as needed in the future.
Thankfully making Colin his own meals and packing food for him when we leave the house is not new to me but it makes my heart heavy that he has more food challenges. Hopefully this one will be a speedbump, not a mountain, and resolve itself soon.