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Post-Neocate News

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More than a month ago I posted about what was almost our last full day of Neocate.  That’s right – almost.   Nothing is ever easy and straightforward, right?  Here is the update…

Right after I wrote about my mixed feelings about giving up Neocate I got sick.  I had an awful head cold and being the selfless person that I am, I was kind enough to share this cold with E.  It was a weird cold, it came on pretty slowly but then hit me really hard.  Luckily the worst of it was over a weekend and my wonderful husband allowed me some sick time so that I was able to recover and he focused on keeping E as happy as possible.  It’s really hard for a rambunctious little boy to be sick and tired.  Jonathan is a saint and took great care of us!

One of the side effect of E’s cold is that he wanted his comfort food – Neocate.

Let me back up a bit.  I have to admit that I didn’t really have a plan for weaning him off of the Neocate.  I had no idea how it would go, but kind of assumed that he would be happy to drink almond milk or hemp milk and leave the formula behind. I hadn’t really decided how I was going to substitute the Neocate so I started to give E the choice of what he would drink in his cup.  He drinks 3 cups a day and they had always been Neocate.

So  here’s how it went:

Me:  ” Do you want Almond Milk or Hemp Milk in your cup?”

E: “mesin cup”

Me: “Almond Milk?”

E: “NO, mesin cup”

Me: “Hemp milk”

E: “NO, MESIN CUP”

Me: “you want your regular cup?”

E: “uh huh”

And there you have it.  I have no idea what he was actually trying to say.  E is still perfecting the whole talking thing and we are currently at a stage where context clues are critical.  It sounded kind of like “medicine cup,” which makes sense because Neocate is kind of like a medicine.  But we’ve never called it a medicine.  In fact, Jonathan and I actually had conversations about what to call his Neocate.  We didn’t want to call it “milk,” because it wasn’t milk and we didn’t want him to think it was ok to drink milk.  We also didn’t want to call it “formula” or “Neocate” because it sounded too clinical.  So we settled on just calling it his “cup.”   Regardless of what we called it, he made it perfectly clear to me that he wanted his Neocate cup.  We had this conversation three times a day for about a week.  If I tried to slip him almond milk or hemp milk, he made a face, handed it back to me, and reminded me that he wanted his “mesin cup.”

I decided not to fight it for several reasons.  One, he was sick.  I know that when I am sick I like to indulge in comfort foods and don’t want to have to explain myself.  Two, I was sick and I didn’t really want to, or have the energy to, fight with him.  I knew that we had enough Neocate stockpiled to last a couple more weeks and so there was no reason to push the issue while we both had low resources.  Third, and most importantly, I didn’t want the transition to be traumatic.  I didn’t want him to view this as an him vs. me issue.  I didn’t want him to have negative feelings about the other types of milk or just resist them because I was pushing so hard.  So I let it go for about a week.  I still asked each time what he wanted to drink and still presented two options: almond milk and hemp milk.  And he continued to request the old favorite.

Once we were both feeling better I started to push a little harder.  I actually wanted to do a trial of shelf stable almond milk. Blue Diamond makes individual servings of the shelf stable almond milk, which I wanted to be able to keep on hand for when we are out of the house or in a pinch but  E had only ever had the refrigerated version.  The shelf stable version had at least one different ingredient (tapioca starch) and because I wanted to know this safe to drink when we were away from home, I thought a full food trial was in order.   I was feeling a little brave, so I did make one change to our normal food trial protocol and decided to give him a full serving starting on day one.

I started to replace his morning cup with the shelf stable almond milk.  The first day of the trial I didn’t give him a choice.  I just handed him a cup of almond milk in the morning.  He tried to resist but I explained to him that we had to try a new almond milk so he had to drink that cup in the morning and he could have his regular cup later in the day.  For the first couple of days we did our almond or hemp milk dance for the next two cups.  He ended up getting Neocate for both.

Then I started to bargain with him a little bit and we compromised on one cup of Neocate a day.  He had to have his one cup of shelf-stable almond milk, then he got a cup of hemp milk, and then he could have one cup of Neocate.  He could choose when he had the Neocate but was reminded that he was only getting one.

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Finally we had a breakthrough!  One day he had his shelf-stable almond milk in the morning.  Then after his nap he chose hemp milk.  At bedtime I asked him if he wanted almond milk or hemp milk and he said “mesin cup.”  I said, “how about if we do another cup of almond milk or hemp milk?”  He thought about it and said “ummm, almond milk.”  I ran to kitchen and poured the almond milk before he could change his mind!  He drank it with no complaints!
The next night we went to my mom’s for dinner and I only took hemp milk, so he didn’t get a choice, but he didn’t complain and he drank it all!

That was a couple of weeks ago, and we haven’t had a cup of Neocate since. Three times a day I give E the choice between hemp milk and almond milk and he usually chooses one or the other. Sometimes he chooses neither but he hasn’t asked for his “mesin cup” since. It’s a little weird to not push his cups on him. The Neocate used to be the only way I knew he was getting the nutrients he needed, so there were days when I practically forced him to drink his cups. Now the cups are just extras. We offer them to fill the cup void and to help boost his calcium intake but his diet is complete and varied enough that he doesn’t need it. It’s crazy that I still feel a twinge of anxiety when he refuses a cup, but that goes away when the end of the day arrives and there are far fewer dishes 🙂

Goodbye Neocate!

So, it looks like we are actually finished with Neocate.  After this long process it is less bittersweet and much more sweet.  Part of me still mourns the loss of my little baby but I am so proud of the little boy he is becoming!

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Oh, and we are WEEKS away from our dairy challenge! So this may all change again…

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Got (Non-Dairy) Milk?

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As we are in the process of saying good-bye to Neocate, one must ask the next logical question: “Now what?”

My son is a creature of habit.  I have always worked hard to provide him with a predictable routine that I think he really appreciates.  Even before he could walk, when Dinosaur Train ended he would crawl over the stairs and start making his way to bed.  Although even E eventually got tired of rewatching the same episodes of Dinosaur Train over and over and over and over, he is still very much enamored of his three “cups” a day.  So, what should we put in those cups?

A couple of months ago E’s dietician told me that when children have to avoid dairy she typically recommends soy, followed by oat or hemp milk.  She said those are the “milks” that are most like dairy milk.  She was specifically referring to amount of fat and protein, which support growth and brain development and are the most important components of milk for one to two-year-olds.  Unfortunately we didn’t get around to trying hemp milk until last month, which wasn’t a big deal because E was still getting everything that he needed from the Neocate.  But I was curious about whether hemp milk would still be best now that E is over two years old, an age when pediatricians recommend switching to 1% or nonfat milk anyway.

I found surprisingly very little about which type of “milk” is the best substitute for dairy milk in toddlers. I actually couldn’t find anything in the medical literature! (Admittedly I am not a nutritionist or dietician and may have been looking in the wrong places, so if you know of any published papers, please share!).  There are several websites and blogs that discuss the merits of various “alterna-milks,” but most are written with the assumption that an adult will be using them.   There were two sites that seemed to give good information about milk alternatives for children (KC Kids Doc and Amazing and Atopic ) and I encourage you to read what they have to say.

For my own edification I wanted to compare all of E’s “milk” options side by side (have I mentioned that I tend to over-research?).  And because this question comes up all the time among parents of children with milk allergies, I even included the “milks” that aren’t safe for E right now.  I’ll admit that this is a quick survey of some of the most common “milks” on the market.  I just chose one brand for each type, so it is possible that the nutrition information can change from brand to brand.  It is also important to always check the ingredients.  For example, the Tempt Unsweetened Original Hemp Milk is the only rice-free version of hemp milk that can find!

The chart below includes the basic nutrition information for each of the major types of non-dairy milk, as well as whole and 1% cow’s milk, to give you some perspective.  All of the information is based on a serving size of 8 fluid ounces.  The daily recommended values (DVR) are the ones provided by the manufacturers, so remember that they are based on the recommendations for adults.

Non-Dairy “Milk” Comparisons

Click on the picture to open a more readable .pdf

milk chart

Most people think of calcium as milk’s most critical component. The companies that make “alterna-milks” are well-aware of this and are happy meet that requirement.  It seems that all types of “milk” are fortified to ensure that they have at least as much calcium as cow’s milk, often more.   So, I don’t think it makes sense to base my decision on calcium content alone and looked closer at the rest of the nutrition information, like ingredients, calories, sugar, sodium, fat, and protein, as well as the nutritional “perks” provided by some of the “milks.”

The plant-based “milks,” tend to have fewer calories than whole cow’s milk. However, the alterna-milks require more ingredients to achieve a cow’s milk-like taste. This often includes sugar or another sweetener (like brown rice syrup). So, watch out for sugar (rice milk and oat milk have way more sugar than others). The plant-based milks also require some sort of thickener, like carrageenan or xantham gum. I’ve heard of these additives causing reactions in some FPIES kids so make sure you keep that in mind if you fail a milk trial (i.e., it might be the carrageenan not the almonds that are the allergen). Carrageenan is pretty controversial but that is beyond the scope of this post. As far as I’m concerned, there isn’t enough evidence that food-grade carrageenan is harmful and it’s so pervasive in alterna-milks that trying to avoid it isn’t worth the aggravation. We already avoid so many things that we know will hurt E, I’m not interested in adding poorly supported “maybes” to the list.  We’ll just hope that future research doesn’t come back to point out that I’m an awful mother for poisoning my child with carrageenan. Obviously, this is a personal decision so please do your research.

If you are looking for a beverage that has a nutrient makeup similar to milk, soy is the way to go. It has the same amount of protein as cow’s milk.  The calories are similar to 1% milk and it has approximately the same amount of fat as 2% milk (not shown on the table).  All this with less sugar, cholesterol, and sodium.  But soy is controversial too. I’m not well-versed in the GMO and phytoestrogen issues related to soy. E is clearly allergic and so we generally keep it out of the house. Again, do your research, talk to your doctor and/or dietician, and decide for yourself whether the benefits are enough to outweigh any possible risks.

       

While we are on the topic of “milks” that aren’t an option for E right now, let’s look at rice and oat milk. These two have almost as many calories as whole milk with the about the amount of fat as 1% milk.  They have more sugar and significantly less protein (though oat milk’s 4g of protein is pretty high compared to the other options).  They do not boast any additional nutrients, either.  Another no-no for us, coconut milk, has far fewer calories but more fat and less protein.  I’ve gotta say, the stats here do not make me sad that they aren’t options for E right now.

We’ve been drinking almond milk for about a year. It’s been really helpful as a milk substitute in recipes (I’ve used it in everything from cupcakes to mashed potatoes) and I like it in my cereal. It has a mild and slightly nutty flavor and I never notice a difference in recipes but would rather skip a latte than use almond milk (yuck!). We tried it as a way to test a tree nut and get a milk substitute.  I never cared much about the nutrition stats because E was still getting everything he needed from Neocate and almond milk was never meant to provide him with everything he missed out on in cow’s milk.  But now I wondered how it stacked up.  It’s really low in calories and fat. It has no sugar but only 1g of protein and is higher in sodium than the other options.  It does include bunch of vitamins and minerals including 50% of the (adult) daily recommended value of vitamin E. I feel pretty good about using it daily (for E and me) but I don’t think we can rely on it solely and, because of the low protein, I definitely wouldn’t have been comfortable using it in his cups before his second birthday.

We’ve recently added hemp milk to our repertoire. I think it’s creamier than almond milk but also has a stronger flavor. Even the unsweetened original flavor has added vanilla. Vanilla is one of E’s favorite flavors, making hemp milk an automatic winner in his book. As I mentioned before, it was recommended by E’s dietician so I expected it to compare well to the other milks. And it does. It has more calories than almond milk but not as many as cow’s milk. It is the alterna-milk with the most fat, actually the same amount as whole milk!  This is good for the brain development of one-year-olds but I’m not sure that my 95th percentile-for-weight two-year-old needs all that fat. The good news is that it’s supposedly “good fat” and has a lot of omega 3 and omega 6 fatty acids.  It has no sugar and a respectable amount of sodium but just an ok amount of protein (2g).  My favorite thing about the hemp milk is that it’s safe for E and he loves it.  The other stats make me comfortable serving it to him on a daily basis but I’m still happy that he had the protein of the Neocate until age 2.  It’s vanilla flavor makes me hesitant to try it recipes.  I assume it will be ok in sweet recipes but I don’t know how it will hold up in savory ones.  Oh, and it also failed the latte test 😦

           

Out of curiosity I added cashew milk and flax milk to the list.  E passed a cashew trial this summer so I know the milk would be safe for him.  However, that seems to be one of its few positives.  Another one is that it is low in calories, but it is on the high side for fat and has no protein.  Flax milk, on the hand looks like a winner!  It’s low in calories and fat (which might make it a poor choice for the under-two crowd) as well as sugar and sodium.  BUT it has 5g of protein!  That’s higher than any of our other options.  It also contains omega 3 and omega 6 fatty acids.  I haven’t tasted it so I can’t report on that.  However, flax milk really does seem like the best option.

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So, what will be in E’s cups? We decided to let him decide – between almond milk and hemp milk.

These are the two that are safe for him and I feel comfortable with the stats. They each have their pros and cons and I don’t feel like one really wins in the nutrition field.  As far as taste, hemp seems to have E’s favor but almond will be better to have around for recipes.  The hemp milk is sold in smaller containers that are about half the size of the almond milk and the same price, so the almond is easier on the wallet.  They are both available in shelf-stable versions, which is nice for stocking up.  I’m also really excited that the shelf-stable almond milk is sold in 11oz containers.  This will be great when we are on the go!  I like the idea that E gets to choose, I try to allow him autonomy as much as possible and this is one more way that he can feel in control of his diet.  We’ve only been doing this for a couple of days but so far he doesn’t seem to favor one or the other.  I think it really depends on his mood, just like what you drink depends on how you are feeling at the time.

I’m kind of bummed that we tried hemp milk instead of flax milk.  I really think that would be the best version and if E passed it (and the taste was ok) I might consider that as our primary milk.  However, as my husband so eloquently said, “we don’t really need him to have another weird milk right now.”  He’s right.  We have two good “milk” options and other foods to try.  I don’t really see a compelling reason to push another version of milk.  Also, we are just over a month away from E’s cow’s milk challenge (eek!).  If he passes milk and likes it we’d likely just switch over to cow’s milk anyway.  If he doesn’t pass maybe we’ll give the flax a try, but I’m really trying to be optimistic about a pass

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                                        I love seeing this little boy with a (hemp) milk mustache!! 

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So, what are your thoughts? What “alterna-milks” do you use?  Have you tried flax milk?

Remember, this is just my analysis.  I’m not qualified to make recommendations but I hope that sharing this information will help to give you an idea of what’s out there and how we made our decision.  Please talk to your child’s pediatrician, allergist, gastroenterologist, and/or dietician so that you can make the best choice for your child.  Good Luck! And (as always) please share any additional information in the comments section.
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Banana Chocolate Chip French Toast Casserole

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My mom makes the world’s best banana chocolate chip pancakes and they have become the centerpiece all of our best family celebrations, especially holidays such as Christmas or Mother’s Day.  As we approached last Christmas I started to feel sad that E wasn’t going to be able to eat the pancakes.  I had tried to do a dairy free version the year before (when I was avoiding dairy while I was still breastfeeding) but they didn’t come anywhere close to my mom’s and that was before we were eliminating soy and egg, which are of course major players in the deliciousness.

As I scoured the internet trying to find an allergen-free substitute I came across Strawberry Banana French Toast Casserole on C Mom Cook.  It wasn’t too hard to make it a little less healthy by switching out the strawberries for Enjoy Life Chocolate Chips.  And it was amazing!  It’s definitely not the same as pancakes but it provides the right flavors and the proper amount of carbs to serve as a base for any good celebration.

This recipe also holds a special place in my heart because our trial of it was E’s first taste of chocolate.

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December 2013: E’s first taste of chocolate!

It is also a really easy recipe to put together.  E helped me make it for the Mother’s Day Brunch that we hosted this year and we both had a ball.  He was able to help me put everything into the blender and loved watching it get pulverized. The sneaky little boy also stole tastes along the way, which was fine because it was completely safe for him!

The casserole held its own on a table that was covered in quiches and pastries, which is a testament to its yumminess and E had something that he could enjoy with the rest of the family.  I hope that you and your family enjoy it as much as we do

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E was not interested in waiting until the end of the photo shoot to enjoy this breakfast treat!

Banana Chocolate Chip French Toast Casserole (Egg-Free, Dairy Free, Soy-Free)

Ingredients

  • Approximately 4 cups safe bread cubes
  • 1 1/2 cups almond milk (or any other safe milk, coconut milk would be awesome)*
  • 1 banana*
  • 1/2 tablespoon ground chia seed*
  • approximately 1/4 cup enjoy life chocolate chips
  • 2-3 tablespoons light brown sugar (to taste)
  • Soy Free Earth’s Balance Buttery Spread to grease the casserole dish

Directions

Place the bread cubes in a large bowl.

In a blender, combine the milk, banana and ground chia until smooth and creamy.

Pour the milk mixture over the bread and gently mix to coat all of the bread.* 

Fold in the chocolate chips.

Grease a casserole dish with Earth’s Balance and carefully pour the mixture (and any of its extra liquid) into the baking dish, cover and set it aside.

Allow the mixture to rest at least 15 minutes, but, if you wanted, you could prepare this the night before and put it into the refrigerator at this time.

When you are ready to bake, preheat the oven to 350 degrees. If you refrigerated your casserole overnight, remove it from the refrigerator about half an hour prior to baking.

Sprinkle the top with light brown sugar and bake for 30 minutes.

*Depending on the type of bread and amount of bread that you use, you may want to double or triple the milk mixture part of the recipe.  I recommend making it a batch of liquid at a time and then adding more if it looks dry.  We prefer it a little on the wet/mushy side so I tend to use more of the liquid mixture.

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The pictures really don’t do this recipe justice 🙂

This recipe was (very slightly) adapted from the Strawberry Banana French Toast Casserole on C Mom Cook.

 

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Out of the Blue – Acute FPIES Reactions!

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After we eliminated grains from E’s diet (along with dairy and soy) things were great!  He had stopped vomiting, was gaining lots of weight (maybe too much), was sleeping well, and we were successfully introducing fruits, vegetables, legumes, and even meats.  The three of us had made it to his first birthday and celebrated with a big Curious George-inspired party and a safe cake made of coconut flour and lots of eggs.  Life was predictable, which is just the way I like it.  We were settling into a nice routine and starting to relax a little.

After the party we had a ton of bananas (I used bunches of bananas to anchor balloons for the centerpieces on the tables).  As they started to turn brown it occurred to me that I could turn them into coconut flour banana bread.    I found a recipe that contained a couple of new foods but I decided to make it anyway, with the intention of freezing it for when we were ready to do a trial. So I made two loaves.  They were just ok, but E wouldn’t know how good it could be so I hoped he would think they were delicious (I use this line of reasoning way too often).

Meanwhile, our allergist had given us the ok to start trying wheat.  About a week after his birthday, I gave him one piece of whole wheat rotini with his breakfast.  We didn’t notice any problems but wanted to take this trial nice and slow so the next morning I also gave him one piece of rotini with his breakfast.  We had a normal morning, he took a normal morning nap, and when he woke up it was time for lunch.  I can’t remember the circumstances but for some reason I didn’t have enough food to give him for lunch.  He ate some prepackaged diced mangoes and I felt like he should have something else.  I didn’t have anything to give him…except for the banana bread.  The new foods were unlikely to be allergens and it was right there, so I figured a small taste wouldn’t hurt.  Interestingly, E didn’t want to eat it.  I was perplexed.  How could he not be interested in a sweet, cake-like version of bananas? I practically forced him to eat a few bites, thinking that he was just thrown off by a new texture.  It was clear that he wasn’t enjoying it, so I cleaned up and moved on with our afternoon.  I had a big outing planned for that day – we were going to buy him his first real pair of sneakers and make quick stop at Whole Foods.

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How cool are those shoes?

I loaded him into the car and we were off to the children’s shoe store.  He was great and we scored an awesome pair of yellow Adidas that were on clearance.  Next was Whole Foods for some E-safe foods.  Honestly, it was a fairly big outing for us.  We still weren’t getting out much, so two stops in one window of wakefulness was pushing it.  By the end of the shopping trip I knew I was approaching nap time, so I was preoccupied with getting him into the car and getting home before he passed out in the car and all chances of a real nap were destroyed.  As I lifted him into the carseat, he spit up a little.  This was weird, I couldn’t remember the last time he had spit up. But it was just a tiny bit, it was actually more like bad reflux.  So I strapped him in and started the car.  We were barely out of the parking space and he really threw up.  I pulled into another space and got out of the car to check on him.  He seemed fine (except for the vomit on his shirt).  I was a bit concerned, this was unusual.  But now I really wanted to get home so I wiped him up and left the parking lot.

We made it to the first major intersection.  I was waiting for the green arrow to make a left turn, was the first car at the light with a growing line of cars behind me, and E threw up again.  And he started choking.  I couldn’t tell if he was having trouble breathing or not.  I pulled over as soon as I could.  I turned around to look at him and determined that his breathing was fine.  The carseat was at an angle that I think prevented him from getting the vomit out.  He was choking on his own vomit.  This was really sad and upsetting, but not as upsetting as the thought of his throat closing. He seemed ok so I kept driving.  He threw up again.  And now I was driving through a farm! The road was narrow, there was no place to pull over, and there were a bunch of cars behind me.  I was panicking.  When I finally pulled over, he had stopped vomiting and seemed ok.  I was really shaken up.  I tried taking some deep breaths and wrap my head around what was going on.  I was pretty sure this was an allergic reaction.  Did I need to use the epi-pen? What was he reacting too? Should I go the hospital?  It was all so stressful for me but E handled it like a champ.  He didn’t seem to be very distressed and wasn’t struggling to breathe so I decided to continue home, where I could safely get him out of the car and better assess the situation.

We finally made it home.  As I pulled into the driveway he started vomiting again.  This time I was able to get to him fast enough, rip him out of his carseat and stood in the driveway holding him so that he could get all of the vomit out and know that I was there for him.  It had been a while since I held my baby close while he puked all over both of us. It wasn’t necessarily something I had missed but I so relieved to have him in my arms that I didn’t even care.  He was relatively calm but really sleepy.  I was a mess – emotionally and physically.

I took E inside, stripped the pukey clothes off of him and noticed that his eczema was flaring.  By this point it was quite clear to me that this was reaction.  He had stopped vomiting and was breathing ok, so I didn’t think I needed to use the epi-pen, but I did give him a dose of Benadryl, put fresh clothes on him, and put him down for his nap.  He fell asleep right away.   Then I got changed, cleaned the carseat, left a message for the allergist, and tried to process what had just happened (all while staring at him on the video monitor to make sure he remained ok).

What was the cause of the reaction? We were in the middle of a wheat trial, but it had been about 6 hours since he had wheat.  And it was the same dose as yesterday – he hadn’t had any problems yesterday.  Could it be a reaction so long after the exposure?  Then there was the banana bread.  I went back to the recipe: coconut flour, bananas, eggs, Earth Balance, honey, sea salt, cinnamon, baking soda, and vanilla.  The only new things were cinnamon and honey.  Everything else had been passed in 4-7 day food trials.  When the allergist’s nurse returned my call it was decided that it must have been a delayed reaction to the wheat.  The likelihood of reactions to cinnamon or honey were low.  We also knew that he had trouble with other grains so there was a higher likelihood that all grains were going to be triggers (105).  She was also a little suspect of the coconut flour (despite the fact that he had coconut milk and coconut flour many times with no problems) so she recommended holding off on all grains for a while and doing a separate trial of coconut just to be sure.

I wasn’t completely satisfied with this answer.  It didn’t make sense that the reaction was so long after the wheat.  I remembered back to his last skin prick tests and a very small reaction to egg.  It was so small that it wasn’t considered positive, but it was enough for the nurse to mention it.  Could he be allergic to eggs even after eating them in his birthday cake?  Or was it something else?  Maybe he had been exposed to something else while we were at the shoe store or Whole Foods.  I just didn’t know.  I was still shaken up from the drive home and I continued to beat myself up for confounding the wheat trial.  I was also sad that wheat was off the table for a while.  But E woke up from his nap as though nothing had happened.  He seemed fine and we moved on, avoiding wheat and coconut.

A couple of weeks later we started an almond trial using almond milk.  E was doing great.  He drank the almond milk with no problems and showed no sign of a reaction.  Over about 5 days we worked up to replacing one of his formula cups with almond milk, which was about 6 ounces.  I wanted to give him more but didn’t want him to miss out on the nutrients in the formula and didn’t think he would drink much more milk on top of the formula.  So I decided to add almond flour to the trial.  When I had been searching for coconut flour banana bread, I had found a couple of recipes for almond flour banana bread so I decided to try one.  The taste and texture were much better than the coconut flour version so Jonathan and I were really excited at the prospect of a better grain-free flour.

However, E was not impressed.  I gave him the banana bread and almond milk for breakfast on a Sunday morning.  He played with the bread, put some in his mouth, and spit it out.  Weird.  I thought for sure he would love it.  Maybe he remembered that the last time he had banana bread he got sick? It seemed unlikely, he had gotten sick hours after eating the bread.  Maybe he just didn’t like his bananas in bread form.  It didn’t really matter.  I needed him to eat it so I could move on with the trial.  I also didn’t have a lot of time to spend on breakfast because we were going to a family reunion picnic that day and needed to finish getting ready and get into the car.  I practically shoved it down his throat.  We cleaned up from breakfast, dressed him in an adorable little outfit and strapped him into the car around nap time so that he could sleep on the way to the picnic.

shirt on ironing board

My wonderful husband even took the time to iron E’s tiny shirt for the picnic.

He surprised us by waking from his nap early and unhappily.  We had just gotten off of the highway and were about 10 minutes from the picnic when the vomit started.  It was a little bit of de ja vu, but this time wasn’t as bad – mostly because there were two of us and I wasn’t driving.  Jonathan was able to quickly pull into a parking lot and we got to him much faster than the time before.  His breakfast hadn’t included diced fruit so he didn’t seem to have as much trouble getting the vomit out (it was actually quite projectile) and so there wasn’t any choking.  He seemed fine after he threw up.  Luckily, we were still in the habit of traveling with an extra set of clothes for E.  Unfortunately the backup outfit wasn’t as fashionable and I wasn’t as prepared – my white shirt now had some unintentional “decoration.”  Jonathan and I were pretty shaken up by the time we got to the picnic but E acted like nothing had happened.  His eczema flared again so we gave him some Benadryl and tried to go about our day.

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E had a blast while we did our best to clean his carseat with baby wipes.  
Does this look like a little boy who just coated the backseat in vomit?

I tried my best to enjoy the picnic but I was already playing detective.  Maybe it wasn’t a reaction.  Maybe he was carsick.  That didn’t make sense though, we had taken other, longer car trips without any problems.  The vomiting and the eczema, along with the timing (about 2 1/2 hours after eating) indicated a reaction, but to what?.  Was it an almond fail? Was it something else?  Cooked bananas were a common denominator between this time and last time, but he ate a raw banana almost every day with no problem.  It would be almost unheard of for a cooked food to  cause a problem when a raw food didn’t (though it is not as unusual for it to be the other way around).  I went back to the recipe.  There were other similarities: eggs, baking soda, Earth Balance, sea salt, and vanilla.  I substituted the honey for sugar this time since I still wasn’t positive that the honey hadn’t been a problem last time.  All of the ingredients were in his birthday cake that he had enjoyed without any problems.  Ugh.  It was looking like an almond fail.  But again my gut said maybe it’s the eggs…

When I spoke to E’s allergist the next day, she wasn’t convinced it was the almonds either.  She thought that it was more likely that he was reacting to eggs on both occasions.  It was significant to her that he didn’t want to eat either version of banana bread.  She said that kids who are allergic to eggs tend to reject them.  This can happen with all food but her experience had demonstrated that it was almost always the case with eggs.  They were a common denominator in both banana breads and the most likely allergen in both.  She didn’t know why he had done ok with his birthday cake trial but said that sometimes it takes several exposures before a reaction occurs.  I had already been thinking it could be the eggs so I was glad we were on the same page.

We went back to the drawing board.  We did pure food trials of wheat and almonds, which E passed beautifully.  Much to my surprise he failed the controlled trial of coconut milk.  It didn’t make sense because he had been exposed to coconut on multiple occasions with no sign of reaction.  But the fail was clear.  I gave him a cup of coconut milk in the morning and he wasn’t interested.  He managed to drink maybe an ounce before he pushed it away.  When I gave it back to him he tried to hide it.  He was clearly not going to drink it.  By this point I knew that he somehow knows something we don’t when it comes to his allergens, so I didn’t push it.  About 2 1/2 hours later he was vomiting.

So within about two months E had his first three acute FPIES reactions.  Completely out of the blue and to foods that we considered to be safe.  These reactions were a game changer to me.  They were terrifying and they made us question everything we thought we knew.  I later learned that they were pretty much “classic” FPIES reactions, which typically occur 1-3 hours after ingesting the food and consist of profuse vomiting that is sometimes followed by lethargy and ashen color.  Sometimes diarrhea occurs within 2-10 hours (4, 111).  Like E, most children recover fairly quickly, within a couple of hours of the reaction.  However, up to 20% of reactions lead to shock that requires IV fluids (111).  Epinephrine and antihistamines are not generally helpful for FPIES reactions (111), so I don’t give him Benadryl anymore.  I learned some other important lessons: FPIES is completely unpredictable, reactions hit when you least expect them, it is possible to react to food after a number of exposures, food trials had to be treated like controlled experiments, and that I hope I never have to deal with an anaphylactic reaction (the FPIES ones are scary enough, thank you).  Most importantly, these reactions removed any doubt that E had FPIES.  And the list of allergens was getting longer…

 

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Fruity Quinoa Porridge

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I’m trying to psych myself up to wake up to a scene like this tomorrow morning (again).  This winter has totally taken all the fun out of snowstorms.   We’ve already had nearly 60 inches of snow, making it Philadelphia’s third snowiest winter ever.  We are pretty much over it.  And we are expecting another 4 to 8 inches tonight along with near record lows.  Our charming old stone house with its original windows is not up for the challenge.  Tomorrow morning will be like many others this winter – really, really cold.  The kind of morning that makes you long for a nice, steamy bowl of hot oatmeal that warms you to your core and leaves you with that full, happy feeling.

But, alas, E is allergic to oatmeal 😦

This actually doesn’t bother him because he’s never really had it (except to thicken his bottles, but that’s a whole other post) and he doesn’t know what he’s missing.  I, on the other hand, feel awful as he submerges his chubby little fingers into a bowl of Corn Chex smothered in cold applesauce.  So you can only imagine how excited I was when I stumbled across a recipe for Apple Cinnamon Quinoa on Pinterest.

I’m not sure why I hadn’t thought of it.  Quinoa was one of E’s first safe foods, back when we were still pureeing everything.  In fact, my unscientific observation is that many FPIES kiddos do well with quinoa and it’s often one of the first safe foods, perhaps because it’s actually a seed, not a grain (who knew?).   Anyway, as we added more safe foods and moved onto finger foods, we kind of abandoned quinoa.  It hadn’t even occurred to me to use it for breakfast.  Another bonus was that the recipe cooked the quinoa in almond milk instead of water.  Another lightbulb moment.  I’ve been trying to get more calcium into E’s diet and almond milk is a great safe source for him.  It’s just difficult to get him to drink more milk on top of his Neocate formula, so cooking with it is an excellent option.  I couldn’t wait to try it!

The recipe (with a couple tweaks to fit E’s diet) was a huge success (you should definitely check it out at FitnessRx for Women)!  More exciting, it got me thinking about other ways to prepare quinoa.  I happened to have a bunch of strawberries on hand, so I started experimenting.  I pulled out my new favorite toy, my electric pressure cooker, and threw the strawberries in with the quinoa, almond milk, vanilla, canola oil (to prevent foaming) and brown sugar.  I thought the result was delicious and E agreed!  It’s so wonderful to find a fast (3 minutes at pressure!), easy, healthy, and safe way to give E that warm, full, happy feeling.

I also love the versatility of this recipe!  We use almond milk because that’s safe for us, but I’m sure you could use soy, cow’s milk, or even water.  Right now I can sometimes get Plant City (FL) strawberries at our local supermarket so I love throwing them in the cereal, but I’m sure you can use any fruit.  In fact, I had a bag of frozen sliced peaches on hand that I used the other day and it worked great.  I’m a pretty big fan of brown sugar, but use whatever sweetener works for you. This is a perfect pressure cooker recipe but I assume it would work on the stove top too, it’ll just take longer to cook.  This recipe makes about 4-6 servings, which lasts us several days.  I store it in the fridge and then reheat it in the microwave.  I just pour a little almond milk in the bowl before nuking it so  it doesn’t dry out.  Let me know if you try something different and how it worked for you.

I hope you enjoy it as much we do!

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Peach Quinoa Porridge (we ate the strawberry before it occurred to me to take a picture)
 

Fruity Quinoa Porridge

1 cup white quinoa

2 cups unflavored, unsweetened almond milk

2 heaping tbsp brown sugar

2 tbsp vanilla extract

Approximately 1 lb strawberries, hulled and cut in half (or any other fruit)

1 tbsp canola oil

Throw everything into the pressure cooker, give it a quick stir and cook at high pressure for 3 minutes.  When time is up, let the pressure release naturally.  Make sure you stir it well when it is finished to distribute the strawberry juices and complete the breakdown of the strawberries (warning – it might look a little gross when you open the lid and see the deflated strawberries but they should fully dissolve after stirring).  Enjoy!