Challenges

I spoke with our allergist today about Jacoby's lab work. On the food allergy side, it confirmed that he's definitely allergic to the things that we already know about (nuts, peanuts, eggs, seeds) but also showed that he's allergic or at least sensitive to soy, coconut (even though the skin test came out negative on this one), and oats. It also showed that he might have a slight wheat allergy.

For the concerns we have about his growth, the results showed that he has low levels of growth hormone. The allergist and our pediatrician were going to discuss this and determine if we need to see a pediatric endocrinologist. He also has high levels of eosinophils in his blood count which could indicate eosinophilic esophagitis, a gastrointestinal disorder that can occur as a result of or in conjunction with food allergies. He's not presenting with the typical symptoms of EE, so we're going to put him on a pretty strict diet, keep a food diary, watch for certain symptoms, and then have his blood tested again in about a month. They don't diagnose EE unless they can do an endoscopy and take biopsies, and since that's pretty invasive our allergist wants to watch things closely for another month before we make the decision to do the procedure.

So, that's the latest. I think we're going to start sending Jacoby to school with his own food since we're way past the point now of being able to expect the school to manage all of this for us. The low growth hormone and EE are both very treatable, but I feel like we still have some missing pieces to the puzzle to figure out before we can get hopeful about our course of treatment.

I can't really put into words what it's like to have something wrong with one of the most precious little people in your life, something that I can't see and can't fix. We have tons to be thankful for--all of this is being caught very early, our medical team in Boulder is amazing, he's otherwise healthy in all other areas, etc. etc. I know all of that in my head but processing it all in the heart is a completely different story.

Allergy Update

This is a crazy week of birthdays, pediatrician and allergy appointments, a picture appointment, and a visit from Grandma Pam & Grandpa Bill. But for now, I'm enjoying a cup of coffee while the boys nap and thought I'd post a quick update on Jacoby's allergies.

Overall, I think we've been doing great with managing the allergies and life has gone on fairly normally for us. We made it through the holidays without any problems and our families were very gracious to us as we learned how to navigate eating in situations outside of our home.

Last Thursday we had a bit of a close call at school. When I arrived to pick Jacoby up the afternoon teacher expressed concern that Jacoby had napped for 3 hours (very unusual under normal circumstances!) and then was quite lethargic when he woke up and didn't want to participate in the activities or have a snack. I happened to glance up at the board where they post the daily class information and noticed that they served fish sandwiches for lunch. After a few questions, it was clear that Jacoby was served the fish instead of an alternative. Bummer. So, I took him home and we gave him Benadryl just as a precaution. I wasn't angry but instead was so relieved that the reaction hadn't been more than what it was, especially since we weren't really sure how he'd react to fish since that was a surprise allergy. Anyways, I spent most of that night and the following morning trying to figure out how I should respond. Thankfully, Jacoby's lead teacher called me the next morning and she was very upset over what had happened and claimed full responsibility for the miscommunication among the subs. They were taking steps to ensure that everyone who comes into the class be made well aware of the food issues among the students and she had also informed the school directors about the incident. We had a long conversation, and I felt good about their response. I'm going to be more mindful of the menus, and we also agreed that I would provide them with a stash of treats for Jacoby to have when birthday/celebration treats are brought in by other parents. She was generally upset and concerned about Jacoby. They have developed a good relationship, and she actually picked him to observe and use as part of a project she's doing for school this semester (she's getting her degree in early childhood ed).

Today Jacoby and I went in for a follow-up appointment with our allergist. Jacoby was tested for 3 more items: coconut (not technically classified as a tree nut yet, but just wanted to be safe), apricot, and beets. Sure enough, we're adding beets and apricot and other stone fruit (like peaches, cherries, etc.) to the allergy list. We've learned that when environmental allergies are in play like what Jacoby has, there is sometimes a cross-allergy with stone fruit! Wierd. He did great at the appointment, and I was able to ask her a lot of questions. Our next task is to get blood work done to confirm allergies, make sure we haven't missed any, and look for indicators that might suggest he'll be outgrowing some, etc. It also provides a lot of information on what's going on in his system.

I take Morgan in next week to be tested for dairy before we start feeding him those things. So far, he's handled cheese just fine but I haven't braved anything else until we're cleared. Keep your fingers crossed for us!

When life tosses you lemons...or a food allergy

The week Jacoby came down with H1N1 is also the week he had a couple of serious reactions to some food. We made an appointment with an allergist and our pediatrician armed us with Benadryl and epi-pens to have on hand until food allergies were confirmed.

The Appointment

We had our appointment on Wednesday this week, and I first just have to say that we are so blessed to live in a community with such excellent medical care. Our allergist is wonderful. She spent about 30 minutes with us discussing our observations on Jacoby and the foods that seem to bother him. After our discussion, he was tested for about 25 different allergies.

The Allergy Test

I'll be honest, the testing portion of our appointment was awful. Jacoby was scared and upset and throughout the test he tried to come up with every way of saying "No", "Stop, please", "No thank you" he possibly could. I think in his little mind, he must have thought he was getting 25 different shots. It did not take a trained eye to see that he had allergies. Over the course of the 20 minutes that we had to wait until they would come back in and "read" the results on his back, Justin and I watched nearly all 25 marks fill up with hives and redness. Now, we both knew that some type of allergy would be confirmed at the appointment, but it was still very distressing to see just how many we might be dealing with. Jacoby finally settled down a little but when they came back in to read the test, he got upset all over again. The only way I was able to distract him somewhat was to talk with him about our upcoming visit to Zoo Lights. We talked about the animals we'd see and which ones might be sleeping while we're there (it's a night time visit to the zoo to see a fabulous array of christmas lights throughout the zoo).

The Results

Jacoby is allergic to peanuts, tree nuts, sesame and sunflower seeds, fish, and eggs. It was no surprise about the nuts and seeds, but we were surprised about fish and eggs. As I've been trying to process all of this over the past couple of days, I've been thinking about both the positive and negative implications. In some ways, I think Jacoby has been trying to tell us that some foods bothered him. We all know how picky toddlers can be about food, but I think we interpreted pickiness (like with eggs, some baked goods, peanut butter) when really Jacoby was trying to say "Mommy & Daddy, this stuff makes me feel really icky!". As a result of his "pickiness", he hasn't consumed a lot of the things that would make him sick. Looking back over the past year, there are situations that have come up that I can now attribute to a reaction to food. Another thing that I think has been a blessing, is that Justin and I for some reason have never been completely comfortable feeding Jacoby nuts. He was exposed to peanuts and nuts sometime after his first birthday, but I think Justin and I both felt like we still needed to be really careful. And because of that, we have really kept our home nut-free for the most part. Back to the results, Jacoby developed a hive that measured a little over 5 cm to pistachios (a nut we've never given him, thank goodness) and a hive right around 5 cm to peanuts. The other biggies were sunflower seeds (which is what he reacted to in October) and sesame seeds. Fish was surprising to us because he generally enjoys tuna if I bury it in casserole. Eggs were also surprising but also somewhat less worrisome because he'll likely grow out of this one by age 5. He is able to tolerate eggs if they are really well cooked. A few environmental allergies that he tested positive for were cottonwood trees, cat hair and dander, and dog hair and dander (although not has much as cats). He was given Benadryl after the test because they were worried about the strong reactions he had to pistachios and peanuts.

One Step At A Time

Since the appointment I've been busy filling out paperwork, making follow-up appointments, getting prescriptions filled, and talking with his teachers, the school program director and health liason about our situation. Another huge blessing is that his school is nut and seed-free, and they provide an alternative for Jacoby when they serve eggs or fish. On Thursday they served quiche for breakfast and gave something else to Jacoby. I talked to him about why he couldn't have what the other kids were having. A little while later while he was playing trucks, he stopped and looked at me and said "I'm allergic to eggs. They make me sick". And thus begins the process of teaching Jacoby about his allergies and the foods he'll have to avoid. He can now list off everything he's allergic to. We've cleaned out our cuphoards and have a few things to give away to friends and the food bank. We're doing a lot of reading and research and are quickly becoming experts on food allergies and how to read food labels. It's amazing how well-disguised some things are that we're going to have to be careful with. For example, his favorite cereal bars are made with sesame seed flour. And sunflower oil is often found in the ingredients list of things we have in our house. We also have to stay away from things that say they are processed in a plant with tree nuts or peanuts, which will be really challenging since that's on almost every label you read. We'll be ordering him a medical bracelet to wear when he's not with us. Morgan has to be tested for dairy when he turns 1 before he starts consuming dairy. He'll be tested for the rest of the things when he's a little older.

That's where we're at right now. For the most part, we're doing ok with all of this and know that it's manageable, and we're hopeful that there might be new treatment options on the horizon by the time Jacoby enters kindergarten. I've probably felt the whole spectrum of emotions from sadness, being overwhelmed and fearful to relief that we know what we're dealing with and determination to handle this as best we can and live a normal life with it. There are a whole array of life-threatening, chronic illnesses we could be facing, and we actually feel really thankful that food allergies are what we've been given. And we also know that Jacoby is going to be able to manage this as well. He's very verbal and very smart, so we're going to be able to teach him about his allergies and how to help us manage them. Jacoby is still Jacoby, and he's still a very healthy, smart, caring little boy.

Our sweet, sweet boy