Asking for Support

Hi all. This post is a bit more personal than you're used to on here (and a bit long) but I hope you won't mind. I'm having a hard time with something at the moment, and I'm hoping I can rely on all of you for prayers, support, and possibly even knowledge.

You all know about my wonderful Kiddo (who, by the way, thinks it is VERY cool that he is featured on my blog), about his love of ice hockey and Irish Step dance, about his struggles with reading and his all-around cuteness. And if you have been reading for a while you also know that Kiddo has severe food allergies and a condition called Eosinophilic Esophagitis (EE for short). What that means is that eosinophilis - cells that belong in the intestines - are present in his esophagus. The cause of this condition is unknown but doctors suspect it is triggered by food in some way, sort of like an internal allergy. If left untreated, the eosinophils increase exponentially and over time cause furrowing and hardening of the esophagus, making it difficult or impossible to swallow. Only about 20,000 people in the US have this condition, and very little is known about it.

Kiddo has been treated for EE for the past 3 years or so. Treatment is really the wrong word though, because they are still figuring out what is the trigger in his case. Every 3-4 months he undergoes an endoscopy (under anesthesia they put a camera down his throat and do biopsies of his stomach and esophagus) to determine if the eosinophils are increasing or decreasing based on the changes made to his diet in the previous months. He also regularly has allergy testing (blood tests and scratch tests) to try to clarify what the triggers are. So far the results have been mixed.

We know beyond a doubt that he is allergic to milk - if it even touches his skin, he starts breaking out in hives, and if he ingests it he vomits uncontrollably. Beyond that, the following nine items have been removed from his diet as possible EE triggers: eggs, wheat, soy, fish, shellfish, peanut, tree nuts, beef, and pork.

Yesterday Kiddo had another scratch test. He tested positive for an allergy to barley. That is one of his favorite foods so he is very disappointed to have to give it up. They also removed oats from his diet. In addition, we got the results of his latest endoscopy. His endoscopy results from March were good. The April test ... not so good. We made absolutely no changes to his diet between the two tests but the eosinophils doubled in that time. Plus Kiddo has been on Prevacid for about 2 years, and on an extra high dose for the last month (Prevacid is supposed to get rid of many eosinophils). The doctor is baffled - she has no idea what is causing this.

In order to get a better idea of the trigger foods, Kiddo is currently undergoing a patch test. In this test, small samples of each food item are put onto a metal disk which is then taped to his back. They have to stay on for 48 hours. His little back is covered with 19 samples at the moment, as you can see in the picture. It is uncomfortable but Kiddo is being a real trooper. No tears, no whining, just sporadic comments about the tape pulling his skin or certain spots being itchy.

Based on the results of this test, more foods will likely be removed from his diet. They will do another endoscopy in 2 months. If the results are not good, the next step is to put Kiddo on an elemental diet ... basically that means that he'd only be able to drink a protein liquid for his meals for several months. No food, period. You can imagine how painful that is for me to even think about - Kiddo is only 7 years old, and he will be miserable if he isn't allowed to eat. And if he doesn't drink it (please God, let him drink it!) they will have to put in a feeding tube to get it into his system.

The doctor wants to rule out possible environmental triggers so she put Kiddo on a daily nasal spray in addition to the Prevacid. At this point, all we can do is wait and pray. The patches come off Wed. morning and we get the results Thurs. morning.

Of course, all these appointments mean that Kiddo is missing school - all day on Mon. and Tues., half days on Wed. and Thurs. And you know that he is struggling with his reading so missing these days could have a huge impact on his learning.

If you made it to the end of this incredibly long post, I'm very grateful. Thank you for your concern and your support. If any of you are familiar with EE or have heard of anything that might help us, please let me know. And please keep Kiddo (and Hubby and I too!) in your prayers. Thank you.

(And just so you know, those two pictures were taken within minutes of each other. Even with all the junk on his back Kiddo is still smiling!)