6

Food Trials: Variations on a Theme

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We’ve been living with FPIES for almost two years, pretty much my son’s entire life. During that time I’ve gotten a little more comfortable with many things, such as leaving the house without showering, sticking my finger in a potentially full diaper, and conducting food trials.

When it first became clear to me that we needed to be more systematic about giving E new food, I scoured the literature and the internet trying to find the best way to introduce a new food to a little boy with a great appetite and a growing number of allergies.  I found pretty much nothing.  The literature in the field is way to new to address such a specific aspect of FPIES with the detail that I was seeking. I quickly learned that every FPIES parent has their own process for food trials and that every FPIES kiddo is so different that individualized approaches are really best.  One thing that I didn’t realize at the time was that even within the same child the approach to food trials changes over time.  As you learn more about the types of triggers that your chid has and as you come to accept FPIES as something that you and your family is living with, not against, your approach might change.  Our method of trying new foods has certainly evolved since we learned E had food allergies. I wanted to share some of this process and some of the variations that we use to demonstrate the truly experimental and ever-changing nature of the FPIES food trial.  Also, to make a case for the fact that there is no right or wrong way to do it.

First, I think it’s important to remember the purpose of the food trial.  I think we get lost in the details and start to fetishize the trial so much that we forget why we do it and actually give it more power than it deserves.  The purpose of the food trial is to see if a child is allergic to a particular food.  The trial itself doesn’t  determine whether or not there is an allergy. It’s just the “test” to find out.  It’s the “scratch test of FPIES.” This might seem obvious but it’s so easily forgotten. I think all FPIES parents (myself included) fall into a trap of believing that our kids’ chances of passing are better if we do a trial “the right way.”  That just isn’t the case. If your child is allergic to the food, he will react to it. Nothing you do makes him more or less allergic, to a point. (That being said, there is a school of thought that suggests you might have a better chance of passing if you wait longer to try certain foods or avoid a food for a while before trialling again.  I’m really talking about the step after you decided that your child is ready to try a food).  

Actually, the point of a food trial is to cause a reaction. During a trial, you should do all that you can to be sure that if your child is allergic to a food you’ll know it. You want to see the reaction when you are ready for it and at a low dose, so that (theoretically) the reaction is as predictable and manageable as possible. You also want to have a reaction during the period of time when there is only one new food, so you know what caused the reaction.

The thing that is most important about food trials is your child’s history – when they typically react (the amount of time after the food is given and the number of exposures that are typically needed before you see a reaction), how they react (what are the symptoms, how severe are they), and what types of foods your child reacts to.  It’s also important to be realistic about your schedule and the resources you have available.  Finally, you have to be honest with yourself about how important it is for you to be able to definitively say a food is safe (or not safe).

It took us a long time to figure out the answers to all of these questions and, therefore, the best way to introduce E to new foods.  We eventually developed the strict 15-day food trial protocol that I wrote about a couple of weeks ago.  During this process we start with a low dose, increasing it slowly over about 5 days.  We then give an appropriate serving size for another 4 days.  After about 9 days of exposure to the food we take a 3 day break.  Then we reintroduce the food for about 4 more days, the last two of which are at “overdose” amounts.  During this strict trial protocol we are very careful to not introduce any other new foods.  I truly believe this is the best way to get the cleanest data.  If E is allergic to a food, I am sure he will react during this trial and we will know for sure which food is the culprit.

But this protocol takes a long time.  Over two weeks!  That means that if we are always doing a trial with no breaks (for things like colds or recovery from a fail or holidays or mommy’s sanity), E could potentially gain 24 new foods a year.  Sure, it seems like a lot but think about all of the food that you eat in a day, and all of the ingredients in a single (normal) recipe.  Suddenly 24 isn’t so much, not to mention the fact that we are definitely going to take breaks (for my sanity if nothing else).

So, we don’t always do this strict food trial protocol (*gasp*).  It’s almost blasphemous in the FPIES world to admit that you don’t do strict food trials.  But the one known when it comes to FPIES is that all kiddos with FPIES and all FPIES families are different.  I couldn’t wake up every day with the mindset of entering into battle – it’s exhausting.  I had to find a way to work FPIES into our lives and live with it, while still keeping E safe. So I started to make some changes.

Oddly, our first “messy trials” followed E’s failed soy challenge.  After such a dramatic fail, you’d think I’d hunker down and be more careful, not less.   In a way I kind of was being more careful despite the “messiness” of my new version of food trials.  The attending allergist at the challenge suggested that we trial a food for 12 days, not the 7 we had been doing up to that point.  When I got home my mind was spinning – I was tired and stressed.  And then I panicked that the foods that we thought were safe for E might not be because we didn’t trial them long enough.  I couldn’t say for sure that every food on his safe list had been eaten at least 12 times.  In the haze of stress and uncertainty I decided that we must retrial every food that E might not have had 12 times.  At some point I had the realization that it would take weeks to get through all of the food and then we would be right we started.  I didn’t want to go backwards so I developed a new protocol for these foods that were probably safe anyway.  

I referred to these as “messy food trials” because the thing that I eliminated was the one food at a time rule.  That meant that if there was a reaction, the data it provided would be messy. If I was giving more than one food at time I wouldn’t be able to say for sure which food caused the reaction.  I essentially staggered the start of each food but had multiple 12-day trials going at the same time.  It was a lot to keep track of and I actually had to rely on my calendar to keep it all straight.  At this point we hadn’t introduced the break into our trials so that made it easier.  As you can see, last December was kind of a stressful month.

My original method for keeping track of our overlapping “messy food trials”

Once we retrialed all of our previous safe foods we went back to perfecting our strict food trial protocol.  We did that for a while, added more and more safes and went months without any reaction.  Then our allergist gave us the ok to stop doing a full food trial for fruits and vegetables!  E had passed all fruits and veggies without any problems (unless you count coconut as a fruit, which is up for debate) and she felt confident that he wasn’t going to react to any.  I didn’t feel so confident.  The food trial had become a little like my security blanket.  After this crazy process I knew E was going to be ok whenever he had the food again.  I needed that – I don’t do well with uncertainty at all.  So, much to my husband’s dismay, I ignored her and continued to trial all foods, including fruits and vegetables.  I did concede, however, that a “messy food trial” would be ok for those foods (again, because they were probably safe). I went back to all of the questions above that outline a food trial and I decided that the most important thing for us was to be able to say that E had eaten a food at least 12 times.  I decided to simplify the system and started a low-tech hashmark system on post-it notes inside our kitchen cabinets.  Every time we started a new food, I added it to list and kept track of exposures using hashmarks.  I still continued with our protocol, but was sometimes willing to overlap trials of new fruits and vegetables.  At some point we also added in the break, which I kept track of mentally.

 

Our Post-It Note System of Tracking Trials

E did great – look at all those passes (and this is only some of them)! His allergist was right! He has passed all fruits and vegetables with no problem.  E hasn’t had a reaction since his crab trail in April.  That’s 7 months!!  Is it possible that we’ve found all of his triggers?  Maybe, developing new triggers after two years old is not very common (though not unheard of).  At his last appointment with the allergist we were told that we don’t have to trial every new food anymore!  That’s a pretty crazy thing to wrap your head around.  And, again, the food trial protocol is my security blanket.

Now I trial foods on a case by case basis, using the questions at the beginning of this post as a guide.  I know that E typically reacts about 2-3 hours after he eats the trigger, usually after about 9 exposures and often after a break in the exposures.   That means 2-3 hours after a new food I am on high alert, so I usually only do new foods at breakfast and lunchtime.  Trying a new food at dinner interferes with bedtime and depending on how late dinner is,  the reaction window may be after he’s down for the night (bedtime is pretty sacred at our house so I rarely do anything that can interfere).  I continue to keep track of foods using my post-it note system.  That way I can know how many exposures he’s had and how likely a reaction is.  We are lucky because E’s reactions are typically not very severe.  He has never had to be hospitalized following a reaction and I am the first to admit that he recovers faster than me.  His crab reaction was even after an “overdose” amount and it wasn’t so bad.  So, I typically don’t worry about starting at a super-low dose anymore.   The thing that is the hardest to let go of is the belief that the importance of all foods is equal.  For example, if I use thyme in one recipe, all other ingredients in the recipe are safe, and E does not have any other herb (or vegetable for that matter) triggers, it isn’t really that important to know for sure that thyme is safe.  I might just go ahead and serve the recipe without doing an all out thyme trial. I’ve also started trialling entire recipes.  For instance, if there are several new foods in one recipe, I’ll go ahead and give the entire recipe and track it as though it were one food.  I also don’t worry about getting through a whole trial at once.  I’ll give E the food when we have it until it runs out and then just give it to him again next time I make it, which might be several weeks (or longer) later.  We eat chili a lot in the winter but it still might be spring before he has all 12 exposures.

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My chili recipe has several new but probably safe ingredients so I am “trialling” the whole recipe.

Of course, I also allow myself to be ok with a “messy” reaction.  This method will not give perfectly clean data.  If there is a reaction I might not be able to tell you for sure what caused it.  Then I’ll have to decide if I want just avoid all of the new foods that it can possibly be or if I want to go back and do more systematic trials.  Luckily, we haven’t had to deal with that yet.   Also, when we go back to retry our known triggers you better believe it will be the strictest version of our strict trial protocol!

It was really strange at first but I love not being afraid of every new food! I now read ingredient lists looking only for our triggers (there are 7 so it’s still not an easy task).  If there is a new food I just proceed with caution, but I proceed, something that I didn’t do a couple of months ago.

IMG_3614I love seeing this boy with a full plate of food! (So much that he even required 2 utensils!)

Wow, this turned into a long post.  I hope it’s helpful to see how food trials have changed for our family and I hope some of our process might give you some things to think about as you develop your own food trial protocols.  Please know that this is a process that worked for us at this point in our FPIES journey.  We can relax now that we have a handle on what E reacts to and how he reacts.  He also has a ton of safe foods so there isn’t as much importance placed on each trial.  Just remember to do what works for your family and embrace it – no matter how messy it is.  If you are early in the FPIES process this probably sounds crazy to you!  You’ll get to this point eventually, just hang in there and do what works for you one day at time.

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1

Global FPIES Day – Be the Voice and Put Awareness in Motion

Sometimes I feel whiney and selfish when I talk about FPIES and how it affects our lives.  The reality is that there are far greater problems out there than FPIES.  You don’t have to look far to find a story of a child who is fighting a serious or terminal illness.  There are people in Africa who are losing their entire families to Ebola.  There are children in US who are becoming paralyzed after having a bad cold.  Even within my own circle, I have friends with pneumonia and cancer and whose children have autism. Just this past week I hugged a friend who was saying goodbye to her mother and watched helplessly as friends stood beside the hospital beds of their children.  I can’t imagine the pain and fear that are so prominent in the lives of so many people – friends and strangers.

And my child can’t eat ice cream.  It sounds so petty and insignificant.  My complaining about spending extra time in the kitchen or not being able to casually eat at a mall food court on a day of running errands seems to have no basis in the grand scheme of things.  I’ll even go ahead and admit that an FPIES diagnosis is not even as horrible as having an IgE allergy.  There are no documented cases of deaths from FPIES.  The worst that will happen if my child eats soy is that he will vomit nonstop and go into shock from the dehydration and electrolyte imbalance.  I’ll rush him to the world-class children’s hospital and leading research center for FPIES that happens to be about 30 minutes from my house.  There he will receive IV fluids and will be sent home.  He will have several days of awful diarrhea and skin blistering diaper rash.  It was be upsetting to watch him go through that and stressful and I’ll worry like crazy but chances are, he will be fine.  I know that there countless people who would give anything for this to be their worst-case-scenario.

But, here’s the thing: our daily struggles are just that – they are ours.  There is no massive scale on which they are ranked and compared to others.  We all have things that ruin our days – from Starbucks running out of pumpkin spice syrup to a child who refuses to get dressed to a devastating medical diagnosis.  We’ve all had the experience of recounting the events of our terrible, horrible, no good, very bad days only to realize that nothing all that awful truly happened.  But it doesn’t matter.  In the moment your day sucked.  And you are allowed to feel sad and angry and sorry for yourself because it was your day and it didn’t go the way you would have liked.

Today, October 14, buried in the middle of Breast Cancer Awareness Month, Down Syndrome Awareness Month, Dyslexia Awareness Month, Pregnancy and Infant Loss Awareness Month, and Obsessive Compulsive Disorder Awareness Week  is our day – Global FPIES Day.  It is a day of awareness and action on behalf of all of the children and families dealing with FPIES on a daily basis.  Today I will don teal and do my best to spread the word about this rare disease that impacts every day of our lives.  I will encourage action and awareness and I will not feel guilty.

Global FPIES Day with E

I will share this information for me and for E and for all of the people who I have “met” through Facebook pages and email exchanges.  Most importantly, though, I share this information for a mom who I have never met but I know well.  She is a woman who is exhausted and covered in vomit.  She spends every night watching her infant cry out in pain.  But she doesn’t know why he is crying or why he is so upset. She nurses him to provide nourishment and comfort, not realizing that it is the couple of pieces of sharp cheddar that she managed to eat yesterday that is what is causing tonight’s distress.  She knows that something is wrong.  She knows that other babies don’t act this way.  But she is told that it is normal for babies to cry and spit up.  She is told that her baby is healthy and that he is just trying to figure out how to live in our world.  But she spends her days and nights worrying.  She worries that she is doing something wrong or that she’s missing something.  She worries that her baby isn’t growing.  That he isn’t developing appropriately.  She worries that she will never be a good mother because she doesn’t know how to calm her son.  She worries that she will never sleep again and wonders how she will get through the next couple of weeks, or even hours.  This post is for her.  I want her to know that I understand.  I’ve been there.  Many of us have been there.  She will get answers (though never quite enough).  She will figure out this mothering thing.  She will learn that she is always right when it comes to her baby, that no one knows her son the way that she does (after all, she created him!).  She will come to trust her gut and do her own research.  She will stumble across this thing called FPIES.  She will read descriptions of this rare allergy and wonder if someone has been spying on her, because it so completely describes what she has been living.  She will fight for her baby.  She will become stronger than she thought possible when faced with medical professionals who tell her there is nothing wrong.  She will become an expert.   An expert in FPIES symptoms,  an expert chef and baker, an expert mommy to her little boy.  She will be able to predict the ingredients of food on the grocery store shelves, art supplies, and toys.  She will develop the ability to walk into a room and within seconds know where the food is and what everyone is eating – she will be able to spot a toddler with a Cheerio from half a mile away.  She will cringe when she sees the words “natural flavors.”  And she will watch her son thrive despite his dietary limitations.  She will never forget the fear and uncertainty of those early months but she will view them as only a rough start to an incredible journey.  I want her to know that it’s ok to cry and feel sorry for her child and herself.  And I want to arm her with all of the knowledge that I can so that she is ready for what sometimes feels like a daily battle.  I want her to know that she is not alone.

I hope that you are not this mommy.  However, for her, the woman who is right now hoping there is enough coffee in the world to get her through the day and is searching desperately for anything that might help, I want to provide some information about FPIES.  I encourage you to read and share this information.  Even if you slept well last night and will be sending your child off to school or daycare without a care about what they will eat today or don’t even have children, you might have a friend who is dealing with this but is too tired and overwhelmed to know where to start or feels like her problems aren’t worth talking about given the other crises in the world.  Share this with parents and especially with healthcare workers, many of whom have never heard of FPIES.  Please, just for today, humor me and my first world problems and help me to spread awareness about food protein-induced enterocolitis syndrome, a rare food allergy that affects the gastrointestinal system.

I encourage you to explore all of the great resources provided by the FPIES Foundation and International FPIES Association (I-FPIES).  At a minimum, please review the picture below for the basics.  You can also take a minute to look around the blog.  The FPIES Information page provides the nuts and bolts of the diagnosis.  However, every word I write is an illustration of what FPIE is.  Please share in the struggles and victories that make up our story and know that there are many other stories being written right this moment.

FPIES Awareness Card

If you want to take an extra step, consider donating to the organizations that support the FPIES cause.  You can make a monetary donation to I-FPIES, an incredible organization that was founded by parents who want to support and encourage each other and recognizes the need for more research and empirically supported approaches to dealing with FPIES.  You can also support I-FPIES by purchasing a bravelet.  These beautiful bracelets remind us to “be brave” in the face of our daily struggles, no matter how small.  Ten dollars from every purchase is donated to I-FPEIS.  Finally, a super-easy way to help the FPIES Foundation, an organization that provides information and support to families living with FPIES, is through Amazon Smile.  When you begin your shopping on the Amazon Smile page, a percentage of your purchase is donated to the FPIES.  You set it up once and every time you shop you help increase awareness, support, and education.

Please help us be the voice of FPIES.  Learn about it.  Tell others about it.  And do what you can to put the awareness in motion.   Thank you for always supporting E and our family as we continue to thrive despite FPIES.

9

Food Trials & Tribulations

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If you know me or have read almost any other post on the blog, you know that I am kind of obsessed with research.   I think it’s important and use it to guide many decisions in my life, maybe too many.  (For example, it probably wasn’t totally necessary to spend several weeks debating the merits of various down comforters.) As a therapist it wouldn’t even occur to me to develop a treatment plan for a patient that wasn’t guided by research.  So you can imagine, that when it comes to my son, there is no such thing as too much research. Which is why this conversation I had at E’s last allergist appointment is both amusing and infuriating to me:

Me: How long should a food trial be? I’ve scoured the literature and can’t find any recommendations.  I feel like it’s all about superstitions.

Allergist: You’re right, there really isn’t anything in the literature and it’s different for every child.

Me: Is it necessary to incorporate a break into a food challenge?

Allergist: What does the literature say? *she said with a smirk that told me she already knew the answer*

Me: Nothing, I can’t find anything1

Allergist: *shrugs* Like you said, it’s all Voo Doo

I love E’s allergist.  She’s wonderfully down to earth and very aware of the literature and has no trouble acknowledging when there isn’t really a good answer.  She often admits to going with her gut when we have a question about how to proceed.  But sometimes I wish there were “real” answers based on actual data.

The thing about FPIES is that there are many children who react to multiple foods.  So any food can be an allergen.  And, of course, there is no way to know which foods are allergens until there has been a reaction.   The only way to really know which foods are allergens and which are safe is to introduce one food at a time for a trial period until you know it is safe.  I’ll never forget the helplessness that I felt after E’s first acute reaction and the confusion because we had no idea what caused it.  From then on I knew that I had to treat E’s diet like one of my controlled scientific experiments.

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It was clear to me that every time we introduced a new food into E’s diet we had to do an at-home food trial. The procedure for such a trail was anything but clear.  I didn’t know how long a trial should be, how much food should be given, and then there was this whole issue of whether the days should be consecutive or if there should a “break.”  I knew this was important and I wanted to follow the best methodology but had no idea what that was.

My literature search turned up almost nothing so I hit the internet and turned to the other FPIES experts, the parents who are living with it every day.  If food trails were about trial and error, I figured I could at least capitalize on the trials and errors of others.  (By the way, the Cradle Rocking Mama has a great post that summarizes some of her own unofficial FPIES parent polls regarding food trials.)  I then threw in what I’d been told by allergists.  But I quickly learned that the most important ingredients in the food trial recipe were my own experience, E’s history, and my gut feelings.  Not exactly empirical but it’s all I’ve got.  The way we’ve done food trials has been evolving since we first introduced solid food and will likely continue to evolve.  We may never have the perfect method but we have something that can guide us through this mess that can be FPIES.

For me the biggest question was the length of the trial.  When we first started introducing foods we did the typical “4 Day Wait Rule.”  If there were no problems after 4 days we considered it safe and moved on.  Most parents abide by this rule of thumb for the first foods they introduce.  The idea is that if there are any issues with the food you will probably know within the 4 days.  Most parents also abandon this rule at some point, once it becomes clear that their child is not reacting to anything.  We were doing well with this method for several months as we introduced fruits and vegetables.  However, our allergist recommended waiting 7 days for foods that were more likely to be problematic for our food-allergy-prone son.  The list of the 7 day foods included meats, wheat, and eggs.  I eventually decided that it was better safe than sorry and started giving all foods a full 7 days.  I thought I was being conservative until the attending allergist at E’s soy challenge told me that I should try a food for 12 days before declaring it safe!  The scientific literature was no help here, with some authors suggesting that a child would react after one or two exposures and some acknowledging that the number of exposures before a reaction is unknown.  When I polled a Facebook support group, the other FPIES parents reported food trials that ranged in length from 3 days to 3 weeks!

While I wanted to scoff at the idea of a super-long trial, I had to rely on what I knew.  An objective review of our data indicated that E’s reactions were always after a lot of exposures.  This is what led to all of the confusion with his egg and coconut reactions.  We trialled his birthday cake (made with coconut flour and a ton of eggs) for 7 days, per our allergist’s recommendation.  He did fine.  He then had a cupcake on his actual birthday (day 8) and more cake at his birthday party (day 9).  He didn’t have egg or coconut again for a week or so until I made coconut flour banana bread and he reacted (day 10).  This realization made me reconsider the 12 day recommendation, to be on safe side.  Of course (probably because I’m crazy), I then started questioning everything that we had previously considered safe that may not have been eaten for at least 12 days.  So we embarked on secondary food trials of all of E’s “safe” foods.  Not only was this annoying, but it held up the introduction of new foods.  Still, better safe than sorry – I had to KNOW what was safe and what was still risky.

IMG_1665 There are worse things than a 12 day chocolate trial 🙂

Now that I had decided on a 12 day trial period I needed to decide how much food to give E each day of the trial.  There seem to be a few schools of thought on this one.  Some people start with very small amounts (i.e., a teaspoon) and increase the serving very slowly over several days while others allow their children to eat as much as they like, regardless of how much it is.  I went with my allergist’s recommendation, which also just felt right to me.  She recommended that we start with a small amount and increase over a couple of days.  Depending on the type of food, I usually start with one piece (such as on piece of rotini for the first day of a wheat trial) or one ounce (fluid or weight, whichever makes sense).  I then increase by 50% or 100% (honestly, it’s based on whichever feels right and looks right based on the serving size and what E ate the day before) each day until we reach a full serving size, which I aim to meet around day 5.  I then continue to give a full serving for the next several days.  If everything seems to be going well I increase the serving size on the last day or two.  I try to give him an “overdose” of the food during the trial, so I never have to worry about him eating too much later and having a reaction when we aren’t ready for it.

Timing is also important and a personal preference.  Some people always give the trial food in the evening when both parents are home and can evaluate and treat symptoms.  However, I think the majority of parents, myself included, prefer to introduce the trial food first thing in the morning.  This ensures that he’s hungry and will likely eat the whole portion and also gives me all day to watch for a reaction.

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Who doesn’t love tuna first thing in the morning?

Then there was this idea of “the break.”  I was researching and trying to figure out FPIES for months before I even heard of this.  It turns out that some parents incorporate a “break” into their trials, during which they stop giving the food.  Then they reintroduce it several days later and continue until they reach the end of their trial period.  There is actually one paper (6) that mentions this practice.  The idea is that if a child is having a very low-grade reaction that is primarily taking place in the intestines and may be accompanied by some nonspecific symptoms, like loose stool or fussiness, it might be impossible to distinguish.  However, it seems that sometimes when the food is reintroduced after a 2-3 day break, the reaction will be more severe and acute.  When I looked back at all of E’s recent acute reactions – egg, coconut, shellfish, soy – all occurred following several days to weeks (or even months) of not having the food.  I was sold on the necessity of the break but am still uncertain as to when I should institute it.  My unscientific Facebook survey responses were anywhere from after trial day 4 to after day 12.  Honestly our breaks tend to happen on their own – I run out of the food or E is going to be with his grandparents for the day or we have a busy day scheduled and no time for a reaction.  But the scientist in me wasn’t comfortable without a real protocol so once again I relied on our past experiences.  I now aim for a break around day 9, given that E’s reactions have been around day 10 or 11, following a break.  I try to do at least a 3 day break, but don’t worry too much if it’s longer.

So, there it is.  Every new food for E begins a food trial that lasts a minimum of 15 days.  We start with a low dose, increasing it slowly over about 5 days.  We then give an appropriate serving size for another 4 days.  We try to give him the food every day (mostly to get through the trial as quickly as possible) but I don’t worry too much if we take a day or two off for whatever reason.  After about 9 days of exposure to the food we take a 3 day break.  Then we reintroduce the food for about 4 more days, the last two of which are at “overdose” amounts.  Remember, the most important aspect of the food trial – during the trial no other new foods can be given.  If you introduce another new food during the trial and see a reaction, you’ll have no way of knowing which food caused it.

IMG_3480Enjoying the end of a food trial with some friends

Is this system necessary? I don’t know, maybe not.  But it provides me with so much piece of mind that it’s worth the stress and hassle.  Now I can know for sure which foods are safe.  Any food can be an allergen and I’ve had my fill of surprise reactions and never want to try to get vomit out of the car seat again!  There have been a couple of times when Jonathan and I considered giving E an un-trialed food but the bottom line is that it’s not worth it.  The stress of having a reaction that we are not prepared for is too great.  The chance of ending the day covered in vomit, or worse – in the hospital, is too scary.  This system might not even catch every allergen, it is a work in progress but so far, so good.

Knowledge is power and I’m always trying to get as much power as I can over FPIES.

I’m always interested in what other FPIES parents do for food trials.  Does it look like ours? What do you do differently?

UPDATE: Check out my newer post, Food Trials: Variations on a Theme, to see how our trial protocol has evolved and other ways that we trial food.

5

Research Revelations about Timing Food Challenges & Conducing Food Trials

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After my not-so-pleasant encounter with the attending allergist at E’s soy challenge I changed my approach.  I realized that I was actually more angry with myself than with the doctor.  I was approaching FPIES all wrong and wasn’t being true to myself.  Maybe that is why it all seemed so difficult.

So I started over.  I did what I always do when I have a problem.  I hit the books.  Well, more specifically, I hit the online databases.  It occurred to me that I really didn’t know all that much about FPIES.  When E was first diagnosed with his IgE milk allergy I bought a book and read and researched as much as I could in the small amounts of free time and on the small amounts of sleep I had.  I was able to wrap my head around IgE allergies and felt pretty confident moving forward.  After it started to become clear that we were actually dealing with FPIES I never went back and researched FPIES.  I’m not sure why, maybe I was just too exhausted, or in denial, who knows the reason, but I didn’t do the research.

Now we had all kinds of practical questions and some information from an allergist (who wasn’t E’s primary allergist) and nothing concrete to go on.  I considered making an appointment with E’s allergist but felt like it was most important to me that I arm myself with data first.  I actually started with lists of articles that the International Association for Food Protein Enterocolitis (IAFFPE) and the FPIES Foundation provided on their websites.  I also used related article searches on PubMed.  I spent about a week reading everything that I could.

Let’s stop there for a minute.  A week. I could read everything that has been published about FPIES in one week. I’m not talking about a week of 24/7 reading, either.  I’m talking nap times and after E’s bedtime but before mine (which is a pretty small window).  A week is an incredibly short amount of time to read all of the scientific literature on a topic.  For example, I have been reading about psychological factors and diabetes for about nine years and could never hope to read it all.  All this is to say that there isn’t much out there about FPIES.

And that is pretty much what I ended up learning: no one really has the FPIES answers.

Sadly, most of the FPIES literature is still at the point of describing the symptoms of chronic and acute FPIES.   There aren’t really any guidelines for living with and treating the syndrome, though the IAFFPE is working really hard to change that.  There were a couple of papers that describe one doctor’s or clinic’s experience with FPIES and that is the best that we have to go on.  At this point I was most interested in when to challenge a food that is thought to be an allergen.  Specifically, I wanted to know if I should go ahead with E’s rice challenge that was scheduled for February, about 11 months after his last exposure and end of chronic FPIES symptoms.  I also wanted more information about food trials – how to know a food is safe.  Specifically, how many days before we are in the clear.  We were still basically doing 4 day trials, 7 for riskier foods, but the attending at E’s soy challenge declared that 12 days of a food was necessary.

Here’s what I learned from the scientific literature (by the way, a few more articles have come out since I did my research blitz in December, so I updated what I found and have included everything I could find as of June 2014):

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Waiting for the IV Team at E’s Soy Challenge

Best Timing for an Oral Food Challenge

Food challenges suck.  It sucks that the only way to tell if your child is allergic to a food is to feed him that food and then wait and see if he reacts.  But it’s all we’ve got and when they are passed it makes it all worth it, so I guess they are a necessity.  I obviously want to time food challenges so that they have the highest probability of being passed, so I was looking for recommendations about when to challenge and/or time to resolution of FPIES allergies.  I was most focused on rice FPIES at the time, but also kept notes on E’s other allergens so that I could make informed decisions about when to challenge all of them.

Solid Food FPIES (Rice and Oat)

There are only few articles available about solid food FPIES, as it is a relatively newly recognized syndrome (historically it was believed that you could only have FPIES to milk or soy).   What I did find was not reassuring.  In one sample only 40% of the participants tolerated rice at 3 years (17).  The same study reported that 66% resolved FPIES to oat and 67% to vegetables by 3 years (17). Thankfully, another study reported 80% of rice FPIES resolved by age 3 (111).   And a study that only contained two patients with solid food FPIES (one to rice, beef, and egg, and the other to shellfish and fish) reported that both children outgrew their sensitivities by age 2 (108), better, but we are basically talking about a case study here.   Unfortunately, the most recent research suggests that the median age of resolution is much later – 4.7 years for rice and 4 years for oat (106).   The authors of this study used a statistical tool called survival curves to determine the probability of outgrowing FPIES at different ages.  At age 2 the probability of outgrowing rice FPIES is about 13%, and oat was not quite 20% (106).   So, by the numbers, it doesn’t really seem worth testing rice until at least age 2, and age 3 would be even safer.   There is also some data that suggests that reactions to rice are the most severe FPIES reactions and require IV fluids most frequently (111).   The closest thing I found to recommendations for when to try rice was to wait 12-18 months after the last reaction (5, 106).  These data did not really make me want to rush my 17 month old into a rice challenge only 11 months after his last reaction.  I decided that not enough was gained by passing rice and the chance of a fail was too high and risky at this point so I decided to postpone the rice challenge for a while.  

Cow’s Milk FPIES

There’s more data available regarding resolution of milk and soy FPIES.  Again, this question was usually addressed in terms of age of the patient.  The study that examined the youngest participants reported that 27% of 6 month-olds tolerated cow’s milk, 42% of 8-month-olds, and 64% of 10 month-olds.  These authors reported that all participants were able to tolerate cow’s milk by 20 months (108).  But perhaps the most cited study on the topic reported that only 50% of children recover from cow’s milk FPIES by one year, 75% by 18 months, 89% by 2 years, and 94% by 30 months.  In this study, the average child outgrew cow’s milk FPIES by 12 months (109).  In a study that measured how long it took for the allergy to resolve (presumably after their last positive challenge), milk FPIES was outgrown in 60% of (10) patients over a median time of 24 months (ranging between 6 and 30 months (112).

Unfortunately a brand new paper that is currently in press has some pretty bleak findings regarding resolution of cow’s milk FPIES (106).  They report that the median age of resolution is 61 months (106)!   The survival curves suggest that at age 2 the probability of outgrowing milk FPIES is only 10% (106).  Based on these findings and a review of the literature, the authors of this recent study suggest challenging cow’s milk between 18 and 24 months after the last reaction (5, 106). 

There’s also some interesting data about positive IgE tests in children with FPIES.  Remember, E’s initial skin prick test (a test for IgE allergies) was positive to milk, so this is relevant to us.  It seems that patients who had a positive IgE test to milk at any point in their history have a more persistent FPIES course (106, 112).  In that study, none of the children who had a positive IgE test resolved their milk FPIES during the study period of over 13 years (106)!  Several authors recommended that a skin prick test should be conducted prior to a challenge and an IgE challenge protocol followed if there is any positive reaction to the IgE test (5, 106).  

I don’t really know what to make of E’s positive initial skin test.  All others have been negative and the result was small for the first one (but so was he – he was only 4 months old!).  The majority of the data suggest that we should wait to try milk until at least 2 years.  The most recent article is pretty depressing but it’s also a bit of an outlier so it’s hard to put too much weight on it.  Besides, those authors are still the ones that recommend the 18-24 month waiting period.  By age 2, E will have been dairy-free for 19 months, so I think waiting until then is a good plan for us.

Soy FPIES

The numbers for soy are a little more confusing because they are so divergent.   One study reported that only 25% of their sample outgrew soy FPIES after 24-36 months (112).  However, others have found that the average patient outgrew soy FPIES by 8 months (108).  Some authors have reported that all of their patients were tolerant by 14 months (8) and others have said that 83% outgrow it by age 3 (111).  The most recent (and dismal) data suggest that the median age of soy FPIES resolution is 6.7 years and the probability of outgrowing soy FPIES by age 2 is less than 10% (106).   Again, the recommendation is to challenge soy at least 12-18 months after the last soy reaction (5, 106).   Given the divergent data and that we have heard the 18 month rule of thumb before (13), we’ll plan to wait until at least May 2015 to try soy again.  At that point E will have been soy- (and hopefully reaction-) free for 18 months and will be almost 3 years old.

Like I said there wasn’t much to go on, but there was enough to draw some conclusions and make some decisions.  So I moved on to my next question – what are the guidelines for an at-home food trial? Were our 4 day trials enough? Should we be doing 7 days? Are 12 day food trials really necessary? And how much should he be eating during these trials?

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E digging in to a plate of salmon during our at-home trial.

How to Conduct a Food Trial

I have to say that the lack of information about food trials is one of the most disappointing thing about FPIES.  I really wish someone had told me sooner about the importance of introducing foods in a controlled way and the high likelihood that E would react to more than just milk.   But after my review of literature I realize that no one told me this because no one has studied it.   The data here were practically nonexistent.

Length of Trial

The question of whether or not you have to be exposed to an allergen to be “sensitized” to it is a hard one to answer (16), let alone how many times you might have to be exposed or how sensitized you have to be to react.  While it is generally believed that the initial reaction usually occurs on the first or second exposure (6), I only found one article that presented data to address the question.  In that study, it was observed that approximately 64% of infants reacted to cow’s milk within one day of regular exposure, 16% tolerated it for more than 4 days before a reaction and 11% tolerated it for 14-30 days before they reacted (109).    One other paper (6) indicated that the food needs to be removed from the diet for 2-3 days to see an acute reaction (specifically after chronic FPIES).   In general, when looking for a good food trial protocol we are told that “Data are limited and […] it is not possible to suggest a specific course of action applicable to all situations” (13).  So it seems that a reaction will likely occur on the first day but could occur after up to 30 exposures.  Weighing the pros and cons of a longer vs shorter trial period is tough.  Thirty is a big time commitment, especially if only four days are necessary.  But no one wants to be surprised by a reaction to a food they thought was safe… There may also be some merit to building a waiting period into a food trial to be sure that there won’t be a reaction when it is next introduced, which of course makes the trail even longer and there is no indication at which point to institute the waiting period.  

Dose of Food in a Trial

The best information available regarding the amount of food to give during a trial is presented in terms of oral food challenge protocol for FPIES.  The guidelines proposed by Dr. Sicherer (112) are the most widely accepted and used.  He recommends administering 0.6g of protein per kg of body weight (or 0.15-0.30g/kg when there was a history of a severe reaction) in increasing doses over 45-60 minutes as part of the oral food challenge for diagnosis (112).   This calculation takes into account the fact that different foods contain more or less of the protein, so it is a very scientific way to determine dose.  However, it obviously requires research to determine how much of the protein is in the food and then calculations of the appropriate dose based on body weight.  You must also remember that these guidelines were designed based on the assumption that there are trained medical personnel available during the challenge.  It may be prudent, therefore, to administer smaller doses when conducting an at-home trial.  I couldn’t find any recommendations in the scientific literature about how much of a protein to administer during an at-home food trial.

photoAll of this research left me feeling frustrated by the lack of good data and recommendations.  However, surprisingly,  I also felt better.  I finally had a decent understanding of what FPIES is and at least I knew as much as the doctors and researchers knew about when and how to try to challenge foods.   I didn’t have all the answers but I had more than I did the week before.  I was able to make some decisions to move forward but I also knew what I didn’t know. There was still going to be a lot of trail and error in my future but I felt a little more prepared to approach it an educated and scientific way, which alleviates just a little bit of stress from the process.

By the way, I’ve updated the FPIES Journal Articles page with these studies as well as a ton more, so stop over to check it out when you have a chance or if you want more information than I present here.  As always, let me know if you need help finding a specific paper or if there is a topic you’d love for me to research and write about  
1

It’s Food Allergy Action Month!

FPIES Ribbon

Food Allergy Research & Education (FARE) has declared the entire month of May as Food Allergy Action Month, which is an extension of Food Allergy Awareness Week, which begins on May 11. The goal is “to go beyond raising awareness in order to inspire action so that we can improve understanding of the disease, advance the search for a cure, create safer environments and help people live well with food allergies.” In celebration of this event FARE has issued a challenge in the form of a calendar. Each day contains an action that you can take to support food allergy awareness, with the goal to do something every day.

I don’t know if I’ll be able to stick with everyday but I will do my best to raise awareness for food allergies in general and relate it to FPIES when I can.  I hope to do this in a series of short and sweet posts, and encourage everyone to check in every day to learn something more about food allergies and FPIES.  I’ll also continue to tell the story of E’s FPIES Journey and share yummy recipes as well as our FPIES victories.

Today’s action is to share FARE’s Food Allergy Awareness Infographic:

And here is an awareness card created by the FPIES Foundation:

I encourage you to share this information with your friends and family and get involved yourself. THANK YOU!

2

Hindsight is 20/20: What I’ve Learned About Chronic FPIES

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Over the past couple of weeks I’ve written blog posts that I liken to the first two chapters of E’s FPIES journey: leading up to the (IgE) milk allergy diagnosis and from then until we eliminated grains from E’s diet.  My goal in writing those posts was to give you a glimpse into what that time was like for us.  I don’t think words can express the degree of anxiety, exhaustion, desperation, frustration and helplessness that we felt, but maybe I provided a little insight.

Many of you have asked me if these posts were difficult to write.  They were.  It is difficult to relive that period and it is difficult to pull the snippets of memories into a coherent story.  It is also hard to remember what we knew when and what we felt when.  But I think it’s important to tell our story, so that hopefully someone else who relates can learn from it.  It is also cathartic and helpful for me to try to iron out all of the details and emotions. Honestly, I usually publish the posts feeling a huge sense of victory and pride.  After remembering where we were, our current situation is amazing!  If you have seen E lately you know that he is thriving.  We are conquering FPIES every day.  But it was quite a journey to get here and I’d like to continue to share that with you.  If for no other reason than for you to be able to truly appreciate and join us in celebrating how far we have come.

 

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 April 2014

I thought that this point in our journey would be a good time to take a step back and relate what we were experiencing to what I have since learned about FPIES.

Looking back at those first 7 months of E’s life, knowing what I know now, it is clear to me that he was experiencing chronic food protein-induced enterocolitis syndrome (FPIES).  Chronic FPIES results from the chronic ingestion of an allergen.  It is a group of symptoms that continue pretty much constantly because the allergen, which is causing them, is eaten over and over.  The classic initial presentation of FPIES is usually chronic because it is to one of the staples of the diet – cow’s milk or soy. The milk (often in the form of a baby formula) is the primary (or only) food that the infant is eating and it usually isn’t clear at first that it is related to the symptoms, which include chronic diarrhea and profuse vomiting.  The vomiting and diarrhea can lead to failure to thrive, low blood pressure, and shock (6,108,110)*, which may require hospitalization.

E certainly had the vomiting!  It makes sense the he was vomiting all the time because he was constantly exposed to his allergens.  He was only three days old when we started supplementing his nursing with a couple of ounces of (milk-based) formula.  Newborns eat every two hours and the timing starts at the beginning of a feeding.  E ate slowly (probably because his little tummy was always upset) so we were pretty much feeding for an hour at a time, taking an hour break, feeding again, and so on.  He didn’t sleep (again, probably because he was so uncomfortable), so he didn’t really have any time to get the allergens out of his system before I gave him more.  The vomiting was constant with no obvious pattern because the feeding was also fairly constant (or at least it felt that way).  It’s not clear if he was reacting to allergens in my breast milk (from my diet), which is possible but rare (6) but we followed every feeding with a couple of ounces of formula.  So he was definitely getting milk (or soy for a few days) every 2 hours or so.  Obviously, I had no idea that I was essentially poisoning him every time he ate, but I still feel incredibly guilty.

And then there was his weight.  I’m not sure if anyone ever officially classified him as “failure to thrive” but it was definitely a phrase that went through my head more than a couple of times after learning that he was less than the 3rd percentile in weight and height at his two month well-visit.  At the time I think the pediatrician assumed it was because my breast milk supply was low, and that may have been the case.  However, I am also convinced it was because he was vomiting so frequently and in such large quantities that he wasn’t digesting the nutrients and calories that he was taking in.  The poor kid was starving, despite the (seemingly constant) hour-long feedings.  Keep piling on the mommy guilt, and now add the heartbreak of realizing how sick and hungry your little boy was during his first two months of life.

I don’t think E ever had the diarrhea, which is one of the things that originally gave me pause about the FPIES diagnosis.   I’ve since learned that only about half of the children with FPIES have diarrhea (105).  In addition, E rarely had any bowel movements.  We were convinced he was constipated (a logical conclusion based on his lack of poop and apparent discomfort), but in hindsight it seems more likely that he didn’t have enough food being digested to make waste.  It wasn’t that he couldn’t get the poop out, it was that there wasn’t any in there to begin with.

Finally, I have learned that about one-third of patients with FPIES also have atopic diseases such as eczema (6, 110), which explains E’s skin issues.  I will say that as awful as the vomiting was and as upset as I was about his failure to thrive, I am so grateful that he never had any of the more severe symptoms such as extreme lethargy, hypotension, and shock, which occur in about 5% of patients (105).

When I read these descriptions of chronic FPIES, it seems as though they are describing E.  It seems so clear that this is the correct diagnosis for him.  I only wished we had realized it sooner.  If had known and had done more research, I think the second chapter would have looked different.  If I had known the stats concerning multiple allergies and grains, I would not have given him rice and oat.  I now know that approximately 48%  of FPIES patients react to more than one food (110) and 30% react to three or more (105).  After milk and soy, rice and other grains are the most common triggers (105).  About a quarter of those who react to milk and soy also react to one or more grains (110).  Further, 40-50% of those who react to one grain, react to another grain (105, 110).  It has also been noted that  those with solid food FPIES are more likely to have eczema (110).  Because of these findings, one group of researchers (105) recommended caution when introducing grains to children who react to milk and soy.

I feel like we were led somewhat astray by the recommendation to add rice or oat to E’s formula to help prevent the “spit-up” (which, by the way, I am now sure was actually vomit as a result of an allergic reaction).  If I had known about the high rates of reactions to grains (with these two being the most common), I would have avoided those longer and tried to obtain a clearer baseline after eliminating milk and soy.  So, yeah, in trying to help our baby, we actually made him worse.  On the bright side, these data do support our decision to avoid all grains for a while.

It’s now clear to me that so many of the things E was experiencing – the eczema, the sleep problems, the poor weight gain, the general discomfort, and especially the vomiting – were the result of FPIES.  Thankfully, this also meant that once the allergens were eliminated from his diet, he started to improve.

By the end of March 2013 his only source of nutrition was an elemental formula (which contains no proteins and is, therefore, hypoallergenic).  We had removed milk, soy, and all grains from his diet.  In April (8 months old) the vomiting stopped, his skin cleared up, and he started taking two good naps and sleeping through the night.  And I could breathe again.

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When E was about six months old (which is the recommended time frame), we were given the ok to introduce fruits and vegetables.  I decided that it would be safest for me to make E’s baby food.  I had never even imagined making baby food but I wanted the control of knowing exactly what he was getting and be sure that any contact with his allergens was avoided at every step in the process.  We followed the four-day wait rule, that is recommended for all children (not just those with allergies).  We introduced one new food at a time and offered it for four days before declaring it safe and moving on to the next food.

E loved everything we gave him!  It’s actually fairly common for children who have food allergies or other food-induced ailments to have aversions to food and reject new foods.  Not E! Before we knew it he was eating pureed avocados, bananas, sweet potatoes, pears, apples, carrots, peas, and the list kept growing.  We even started to add meats and eventually baked egg (in preparation for his birthday cake).  As he got a little older it was tricky to find good finger foods (the typical first finger foods are usually Cheerios or wheat/rice puffs – all primarily grains), but he did great with small pieces of bananas, avocados, and sweet potatoes.  We eventually found Happy Baby Happy Creamies, which are coconut milk-based fruit and vegetable melts.  These sweet treats became a favorite snack.

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They didn’t always make it into his mouth…

I spent the end of E’s first year perfecting my label-reading skills, enhancing my creativity, brushing up on my cooking techniques, and catching up on much-needed sleep.  I remained in constant fear of an anaphylactic reaction to dairy but triple-checking to make sure we had the epi-pen before we went anywhere became second nature.  E’s diet was limited but he wasn’t having any reactions.  As we approached his birthday we did another round of skin tests, all of which (even dairy) were negative, as were blood tests.  This was great news and a step in the right direction but not enough evidence to know for sure that his allergies were gone.  At least two negative tests are needed and an oral food challenge to know that he has officially outgrown an allergy.  So we allowed ourselves let out a little sigh of relief but didn’t let our guard down, just in case.

By the time we made it to August (and E’s first birthday) we had a lot to celebrate.  We finally knew what was going on with our baby and felt in control of it.  E was thriving, his weight had exceeded the 90th percentile, though he was still a little short (we’ll cut FPIES some slack and blame my short grandfather for that one).  He was starting to walk and was generally an adorable, happy baby.  We celebrated with a Curious George-inspired, dairy-free party complete with dairy-free, grain-free coconut-flour birthday cupcakes.  E had a blast and loved his cake 🙂

Eating Birthday Cake

 
*I’m going to attempt to infuse some research wherever possible.  There isn’t much out there but I think it’s really important to acknowledge what we do know and let it guide our decisions in managing FPIES (and any other illness, really).  Clicking on the numbers will take you to the journal article page with the complete citation for each number.  I hope this is helpful.
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Join Together for Better Care

rdd-logo

Today is Rare Disease Day, an international event that calls attention to diseases that affect less than 200,000 Americans.  FPIES is one of 6000 rare diseases.  The day is an opportunity for people who usually feel so isolated in their diagnoses to come together and recognize that they are part of a larger community.  It is also about sharing our stories and raising awareness to encourage research and understanding of the diseases and those that live with them.  The video below, that was put together by The National Organization for Rare Disorders (NORD), does a great job of explaining rare diseases and the goals of the day.

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NORD has also organized the Handprints Across America campaign, a space for individuals with rare diseases to share their stories.

Handprints Across America

The best we could do for our Handprints Across American Entry

To be honest, before this year I had never heard of Rare Disease Day and I certainly hadn’t heard of some of the diseases represented.  The FPIES Foundation  and IAFFPE has been publicizing the event and encouraging participation in Handprints Across America.  I was so excited to have a chance to participate in a movement to increase awareness of FPIES and other diseases about which little is known.  I went to the website to print out our flyer and immediately became engrossed in the photos and stories that were already posted.  What a humbling experience. I was suddenly so grateful that E only has FPIES.  I mean, FPIES sucks but there are people (and families) suffering far worse.  It is days like today that remind me to count my blessings and be grateful that these are our biggest problems.

In honor of Rare Disease Day, I finally created an information page about FPIES that I would love for you to visit to learn more about food allergies and FPIES.  But I plan to share information about FPIES with you frequently and will continue to add to the information page.  So today, on Rare Disease Day, I urge you to take a couple of minutes to check out the stories of the other brave patients and their families.  Look into their eyes, allow yourself to connect with them and their struggles, learn about one of the rare diseases, and share what you learn with someone else.   As a caregiver of someone with a rare disease, I want you to know that we appreciate whatever it is you do (and just reading this post counts).  

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On a lighter note, below are some out-takes from our Handprints Across America photo shoot. I admit that we shouldn’t have waited to minutes before bedtime on the day before Rare Disease Day to take our picture, but E is definitely going to have to get better at supporting mommy’s procrastination habit.

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