Food Challenge - By Abby

Abby had to write an "expert" piece at school and she chose to describe the process of going to a food challenge. She's been to four (I think, maybe five) and is a veritable expert! 

Do you know what an allergy food challenge is? In this piece you will find out what the food challenge is and how it works

First and Food

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  Starting a food  challenge is the most important part because it starts you’re dietary future. First of all, you have to go into the waiting room before you check in. If a you’re child is doing the food challenge he or she will have to get a bracelet that has his or her name and age and number thing, because you’re a patient there. After you get seated the nurse has to check the child up to make sure is not sick because if you were after you ate the food the nurses would think it was the food  but it wasn’t. They check your blood pressure, oxygen and make sure there are no rashes on the patient.

Then, they give you a little bit of food to start only like half a bowl or piece. It starts out with a tiny piece because it you’re first time eating it so you wanna start small.   

Again and More

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       After you've eaten a little you wait for 20 minutes before eating a bigger amount.  You have to wait 20 minutes because the food needs time to situate and time to make sure that it doesn’t disagree. If it does at any point in the challenge you will be sent home and can try again in a year if you’d like to. Usually, if you go through the whole challenge it's about 5-8 doses and 20  minutes in between.

After the Challenge

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  After you’ve finished the  food challenge you still have a while. You have 1 hour till you can eat and 2 ½ hours till you can go home.  You’re going to get truly bored so hopefully you brought toys. Also, there is a play area with a bunch of toys to play with. After a while, you have to have your final check-up. They do the exact same thing as they did in the beginning.

Indeed, this food challenge is long and yummy and something you’ll never forget. It’s really exciting to know that you might outgrow your food allergy or have. If it turns out that you haven’t  outgrown your food allergy, next year you can try again.  

A Word On Food Allergies

Food allergies can be incredibly limiting if they are severe enough. In Abby's case she has been unable to eat or touch egg, milk, tree nut and agave for her entire life. She was previously allergic to blueberries but had the opportunity to "food challenge" out of those allergies. So what exactly is a "food challenge" you ask?

Briefly speaking a food challenge is a way to investigate how the body will react to an increasing amount of the food in question. For instance, when abby tested for blueberries she ate a small amount of blueberries mixed with vanilla yogurt every 20 minutes until she had consumed a full serving. If her reaction was minimal she "passed" and can now consume that food. Her reaction to blueberries was very mild so it was introduced into her diet and as she consumes it more and more her reaction becomes smaller and smaller. These tests are conducted over the course of 6-8 hours at a medical day unit of the hospital with close monitoring from a nurse and doctor.

The next step in her journey is more of a leap than a step. We are moving into the baked egg and baked milk territory. Recent findings showed that even in cases of severe skin and blood testing, a high number of patients can tolerate small amounts of baked eggs or milk. In order to determine if you are a candidate you must complete a food challenge. If you are fortunate enough to pass these tests you can eat baked eggs and/or milk and the theory is that by consuming the milk and egg in the baked form you might be able to build a tolerance to different forms.

Abby went through the necessary blood and skin testing and despite her numbers and skin tests growing, her doctor has decided to move on to a baked milk challenge and hopefully baked egg if she passes the first.

The idea of her being able to include these items in her diet is both exciting and terrifying. As a parent of a food allergic child you live in fear of a slip up. Someone doesn't realize an ingredient slipped in, she asks if it is allergy friendly and someone doesn't know. There are so many things that can go wrong. However, the answer to this is strict avoidance. I make her lunch and her snacks. I send food when she leaved the house. It minimized the potential for a problem. However, if we move from strict avoidance to baked it poses all new dietary questions and issue. Any unchartered territory is scary and this is no exception.

For now she is just thrilled that the idea of non-vegan donuts might be on her horizon. 

Blueberries, check!

Food challenge number two was a whopping success. On Wednesday morning we had to be at CHOP by 7:30. Thankfully Abby is so cooperative about the restrictions (only clear fluids after midnight). We were early so we got checked in second. This also meant that we got a bed next to the window!

The test was started around 8:30 and she loved the blueberries immediately. The nurse and I thought things were going south when her stomach started to ache but it turned out she was just hungry. Her last challenge (pecans) yielded some itching of her tongue and face. This challenge came with NO SYMPTOMS!

So, now she can add blueberries to her safe list. The next challenge will be in July and that one will be walnuts.

I am so thankful and fortunate that despite all of these years of tests, appointments, surgery, etc. she remains the worlds best patient!

Posted by Kristen Fescoe

Rhombencephalosynapsis goes to Disney World

As most of you know we just got home from a week long vacation in Disney World. The short version of the story is that we were supposed to go last Christmas but ten days before we left my Dad was diagnosed with Stage IV lymphoma and almost did not make it. Thankfully he is kicking cancers sorry butt and so we went. It was a perfect "victory lap" for our family.

We thought a lot in advance about what this experience would be like for Abby. Disney is obviously exhausting for any five year old but what about a five year old who tired from a walk around the block? How much would we have to slow down to accommodate her?

To try to deal with it in advance we rented a double jogging stroller from a local rental place (not the uncomfortable Disney ones). This would give her a way to ride from attraction to attraction while getting some rest. We made sure to pack plenty of snacks and drinks to keep her filled up with energy. We even resigned ourselves to letting her have some good old sugar when necessary. ;D This worked for about the first three hours.

We got into what would be our first long line and quickly realized this was not going to work well. Even though it wasn't that hot (about 75) we was drained after standing for half an hour. I started to panic at the thought of either holding all 32 pounds of her her through line after line (and killing my back) or having to sit out of rides with her. Neither one seemed like a good option.

I then remembered on the Disney site that they outlines the measures they go to in order to accommodate people with disabilities. Although we don't tend to think of her as "disabled" these are the times that her "differences" are glaring. I found a young woman working there and asked her about how we might be able to work around this problem. They were SO helpful.

She outlined what they like to do and she sent us to guest services immediately to get started. We informed them that we have someone in our group with a "disability" and we were given a "red card". This gives you access to the rides through the Fast Pass lines so you generally wait about ten minutes for a ride instead of an hour or more. They usually only write them for a group of 6 but we got one for our whole group. So at each line we flashed our card and walked right on.

For one short moment I felt a pang of guilt (not sure if that is the right word) about getting a "reward" for her disability but then I thought how much she deserved it. Should she have to miss out or be too exhausted to enjoy herself? NO!

There were still small matters like her food allergies and her balance winding through lines and the park itself. But since we took care of the larger issue of the standing we were in good shape.

Posted by Kristen Fescoe

Even MORE allergies

For the past three weeks or so Abby has been a hot mess. Her face has been broken out in a horrible rash (that looks like a burn) and she has been itchy non-stop. The past week or so it has gotten worse and worse. She has bumps on her chest, arms and back. Her face looked like someone threw acid on her. Despite all of our efforts with Aquafor, Benadryl, oatmeal baths, hydrocortisone, and many other attempts NOTHING has helped.

**This picture doesn't even do justice to how bad it had gotten. 

We decided to sit down and go through her diet and see what has changed. It became clear that the one thing she has eaten WAY more of in the past three weeks to a month are an organic bar called a Halo bar. They are something we found at Whole Foods and they are vegan. They are also free of blueberry and tree nut. I took a look at the ingredient list and the second ingredient listed was Agave. For those of you following along with the food allergy soap opera that is Abigail we (and by we I mean Brian, but please don't tell him that I am admitting he *might* be right) suspected Agave to be on her list.

This morning we didn't give her a Halo bar (she has one for breakfast every morning and one in the afternoon) and her skin looked clear. When the bus pulled up this afternoon and she got off I held my breath a little... A CLEAR FACE and no itching!

So I think we might have found our culprit. They do not skin test for Agave as of yet so for now we will add this to the strict avoidance list. I am just thrilled that we figured it out before she started scarring!

More allergies

Last week I took Abby for her skin testing to confirm what caused the bad reaction a few weeks back. We know that she was exposed to raw cashews, walnuts and agave. I was suspicious of the tree nuts but the doc wanted to confirm. Thankfully the little chickie is pretty tough when it comes to these things. She knew she was getting skin tested but there was hardly a whisper of dissent about going. 

She got a little ornry when the nurse and doc came in but she wasn't too bad. We talked a little about how things have been going and he confirmed that her last round of blood work was too high for eggs and milk to bother testing for those yet. He ran the tests for four tree nuts and it was obvious she was positive for a couple.

He came back in and let us know that she is severely allergic to cashews and moderately allergic to walnuts (according to the skin tests). He will test for more tree nuts in six months but he doesn't like to test more than 4 for fear of a false positive. As of right now the only tree nuts she can have are hazelnuts and pecans.

She did, however, get an Ariel sticker out of the deal so she could have cared less that she can't have tree nuts. :D Good thing the kid is so resilient! 

Food Choices

My recent post on Abby’s allergies got me thinking about how we eat. When we had the girls we made some minor modifications to the way we eat and the way we feed the girls. I made almost all of their baby food myself and we made it all organic. We started eating more organic foods ourselves (dairy, some meats and the dirty dozen produce). When we discovered that Abby was severely allergic to milk, eggs and blueberries (anaphylaxis as well as blisters when she has external exposure) we quickly learned that a lot of our food choices would change.

Gone were the days of going out to eat easily or cooking ready-made meals. In the beginning of her allergies I often made separate meals. One that was dairy and egg free for Abby (and sometimes Grace) and one for Brian and I. As she got older we realized that this was not a long term solution. Having separate meals was a lot of work but it also wasn’t fair to Abby. Why should she have to have something different than the rest of the family.

So I started doing my research. We started making daily discoveries. We found vegan butter and cheese. We stumbled upon egg replacer and vegan desserts at Whole Foods. While absent mindedly reading the label on a pack of oreo’s (reading labels is something I have started to do religiously) I found that they were vegan. The more I read, asked questions and researched the more foods I discovered were vegan or could be made vegan. I learned to bake and cook vegan or at least milk and egg free.

It was not an easy process and A LOT of cooking mishaps came up. There was a wonderful side effect. We started eating healthier… a lot healthier. Brian and I were eating about 80% organic without even realizing. We started getting into the habit of eating less proteins from meat and more front plant sources. We cut out most junk food. Our diet was more local and we even started growing a lot of our own veggies in the summer. I learned to can and pressure can and one day we woke up and realize we had a fantastically healthy diet.

I wish I could sit here and say it’s easy but that would be a lie. Eating healthy takes effort, and money. Fresh food is expensive. A box of mac and cheese costs about a dollar while making vegan mac is at least double. We don’t really mind. We budget to accommodate for the food choices we make. And we DO eat junk sometimes. We go to McDonald’s occasionally. It isn’t my first choice but I feel like the kids need to eat like kids sometimes.

Posted by Kristen Fescoe