This past week we clocked plenty of time with Doctors for Jonah. We first worked with a new, highly recommended Allergist who is was concerned about a couple of different things with him. One of the most pressing issues was the nutrition aspect of things since he has so many multiple severe food allergies established on top of vomiting and refusing to eat or drink. He put Jonah on an amino acid/protein powder that I will attempt to add to things I will offer him so when he does eat, he is getting the most nutrition rich-brain healthy stuff he can get. He also suggested testing him for delayed allergic responses from foods he commonly eats that he may be having a reaction to internally that don’t necessarily show up overtly that we may be missing that could be a culprit in making things not easily digestible for him. We’re examining our thoughts on this before we subject him to more allergy testing given his diagnosis.
It’s quite the puzzle, these food allergies.
The big day was the morning spent at the local Children’s Hospital getting a full GI X-ray study done. It was half a day spent where they had to force down barium and restrain him down on the table and take a quick series of pictures of it going down. Ugh…this was not fun nor easy. Then TJ and I had to force down more barium in a separate room and wait 45 min so they could take a picture further down his digestive track, and then wait more time for another picture further down, and so on.
Jonah was so brave through it, especially because he can’t stand being put on his back. Drinking barium when you can’t eat anything anyways was so sad, but he was such a champ.
His GI Specialist called us on Friday and said his anatomy looked fine and his Esophagus had no damage, but he has a hefty case of GERD (Gastroesophageal Reflux Disease). This is when acid from the stomach pushes up into the esophagus, causing pain. His gagging has most likely been his way of telling us something hurts, and his vomit episodes most likely have been because of the acid. He’s also probably had a lack of appetite because of the pain.
Hopefully this is a condition he will eventually grow out of and it can be treated with finding the right dosage of medication to control what comes up.
His Doctor is still recommending we work with an Occupational Therapist to get him up to speed in eating and to be comfortable with other textures that he hasn’t been able to get down, but is confident we will get there when things are under control.
There is still a chance there is something else going on in addition to this diagnosis, but for now this is what we are going with until there is some more cause for concern.
WHAT WE THINK:
To be honest, we are so incredibly relieved. We were bracing ourselves for something so much more serious and complicated. Doctors start throwing around “developmental delays” and “severe rapid weight loss” and dealing with multiple severe food allergies on top of seeing your kiddo screaming for hours on end writhing in pain and you immediately go to the worst place. And there is no greater pain for a parent to see their child struggling and not know why or how to help them. The great news is that in reality, this is something very treatable and common.
The very best news is that the past 3 days have been so amazingly wonderful when it comes to food consumption for Jonah. He went from eating 2 pureed fruit/veggies totaling in about 8 ounces for the day to eating an entire bowl of oatmeal, two homemade breakfast cookies, turkey, veggie puree, a rice bar, and 3 meatballs in one day. This is more food than he has had in months and it’s been like this all weekend.
His demeanor as a result has been so much more energetic, he’s happier, and he looks so much healthier in his coloring. It’s an amazing transformation when the boy eats something!
Although there are still things that need to be worked on and worked out, I have to say thank you so much to each and every one of you who have lifted our family up in prayer, offered encouragement, meals, time, daily text messages of positive thoughts and prayers, and an ear to listen as we have dealt with Jonah’s declining health in the past few months. It’s been such a scary and pragmatically difficult time for us and I cannot say how much appreciation we have for the people who have stood by us. I’m so looking forward to getting back to normal soon and winning at all of the things I have been failing miserably at lately (set my alarm for 5:30 am to workout as an example). So, thank you!!!