Ellie’s Journey through FPIES

There is so much comfort in the warmth from a good cup of coffee or tea in the morning. The mug warms your hands, and you know you will savor that first sip. I have been through MANY cups of coffee and tea over the last 22 months and each of them was a small moment of comfort during this challenging medical journey.

I want to share with you our story thus far – through the initial worries, the food eliminations, eventually a diagnosis, and now our day-to-day trials of FPIES, as well as fructose intolerance, in our sweet and spunky 22-month-old daughter, Ellie. My hope is that you can get something you need out of our story.  Some hope for answers with your own child who may be struggling. Some reassurance that you aren’t the only one on a tiresome medical journey – you aren’t, and I wish I could give you a hug! Or maybe you are here because you are trying to navigate the baking world with food restrictions and aren’t sure if it’s possible to still make delicious chewy cookies or tender crumb muffins without certain baking staples – I promise, it is!

For those of you who don’t have the time right now to read the full story, there is a summary of her journey thus far at the end of this post. You will miss out on all the cute pictures of Ellie through the post though, so come back when you have time for a sweet baby fix!

When It All Began

Ellie was very ‘spitty’ from the start.  Knowing that her older sister, Rosie, was the same way, reassured us for the first few weeks.  Around week 5, Ellie started having significant vomiting episodes that were no longer something that could be reasoned as ‘normal baby behavior’. At that point I cut dairy out of my diet, with dairy being the primary food intolerance for breastfed infants. Her pediatrician also wanted Ellie to get an abdominal UltraSound to rule out pyloric stenosis. We thankfully were able to have that done within the week and be reassured that a pyloric stenosis was not the problem.

A week later she started to have other more concerning systems (do I mention blood in her poop in a food blog?) which caused me to eliminate soy from my diet as well as take her to a Gastroenterologist by her pediatrician’s referral. Unfortunately, this GI doc was not the least bit helpful and made me feel as if I was overreacting to what was just a routine issue (not so, listen to your mom intuition folks). He did have us do a Fluoroscopy of her Upper GI (basically an x-ray video of her while she swallows contrast) to make sure her breastmilk wasn’t coming right back up after she swallowed it and her anatomy was correct. She passed that with no concern; I was told yet again, ‘She is fine, just take some things out of your diet if this continues’. Well let me tell you, it continued.

Fast-forward three months and I have eliminated a significant number of foods from my diet in an attempt to lessen Ellie’s symptoms which have now expanded to further GI issues and eczema. She still had nights when she just cried and arched her back all night, and all I could do was rock and hold her as she struggled through the worst of it. At this point Ellie’s pediatrician granted me the referral to the best pediatric allergist in the area: we were given an appointment three months away. Thankfully we were able to get an earlier appointment with the same allergist (I adore her!) due to a cancelation a month earlier. Since I had already gotten rid of most foods that were the ‘typical culprits’ with food intolerances in infants such as dairy, soy, eggs, peanuts, tree nuts, all berries, gluten, coconut, grapes, pork, flax, sunflower seeds/oil, corn, and several other random food items that seemed to elicit increased symptoms in Ellie, I was lost as what our next steps should be. 

The Allergist’s Answers

At nearly 6 months old Ellie’s symptoms haven’t improved at all through my very restrictive diet. The allergist performed a ‘prick test’ (to test for true IgE allergies, think hives, and anaphylaxis) and Ellie had one positive to peanuts. Great. An answer, but not an answer since I had cut out peanuts months before and her reactions continued. Small comfort at this point – Ellie wasn’t deathly allergic to everything in the world, just peanuts. [To be clear, a positive skin prick test does not mean she is deathly allergic to peanuts. However, since she is also patch test positive (keep reading!) to peanuts, we can’t do the blood test and food trial of peanuts in the MD office to confirm her allergy severity.] The allergist (have I mentioned that I love her, and that she also worked through her own peanut allergy) told us that we would need to remove all peanuts from our home until she was at least two. This would allow Ellie a 20% chance of outgrowing her peanut allergy. She gave me hope for improvement for something. It wasn’t everything, but it was hope. Most importantly it was a plan and something I could do about it. So, briefly, I mourned my loss of peanut butter banana baked oatmeal, peanut butter cookies, peanut butter milkshakes, a scoop of peanut butter in my smoothies, and well, you get the picture, everything peanut butter!!

The allergist, unlike my experience with the GI doctor, didn’t just give up there (bless her!). She said we could do patch testing on Ellie. I would need to schedule three visits in one week to have all the patches placed in the first visit and then assessed for reactivity in the second and third visits. Patch testing isn’t a 100% sure answer of anything, but we hoped it could lead us in the correct direction of knowing if food was truly the culprit.

Twenty-three patches (that’s all that would fit) were placed on Ellie’s back, each with a tiny piece of that food under it, for 48 hours.  She was checked for, are you ready for it? If not please feel free to skip ahead… milk, egg, soy, peanut, wheat, beef, sunflower seeds, coconut, pork, avocado, almond, sweet potato/yam, carrots, corn, rice, apple, banana, spinach, fig, salmon, blueberries, turkey, and oats. In the end, she reacted to everything but beef, sweet potato, coconut, rice, apple, oatmeal, and salmon. Okay, so there was an answer. An answer I didn’t want and wasn’t sure how I was going to manage, but an answer, nonetheless. The allergist did the best thing she could have done with that situation and set me up with our amazing registered dietician (RD).

Addition to the Team: Registered Dietician

The RD met with us the next week but in that amount of time, Ellie had already had severe GI symptom reactions to coconut and sweet potato, so they were out.  If you are keeping track I went from having seven foods I could eat to five. (Just a reminder Ellie is not physically eating any of these foods herself, her reactions all come through my breastmilk, Ellie has had no solid food at this point.) The RD was wonderful and very encouraging about sharing another experience she had with a mom who had to eat only five foods to be able to nurse her child as well. It could be done! With the support of both the allergist and RD behind me, as well as hoping for relief for Ellie, I scoured stores for any product that contained only those ingredients and became very creative in the kitchen when there were such limited options; homemade rice milk anyone?!

Ellie’s GI symptoms continued. Every day I had to assess her symptoms and compare them to what I had previously eaten. It sounds simple, but it is exhausting and anxiety-provoking constantly trying to find tiny patterns in what may be causing your daughter so much pain.

Over the next couple of weeks, I ended up losing beef, rice, and oats. I am now down to only apples and salmon. Yes, you read that right, my diet would now consist of only apples and salmon from my parents in Alaska (thankful for the small miracle of having that available to us). [Store-bought salmon is sometimes soaked in milk to reduce the fish smell, who knew? We discovered that AFTER an increase in symptoms suddenly with no change to my diet other than store-bought salmon (yes it said it was wild-caught with only salmon as the ingredient).] Salmon and apples. That is two foods. TWO! Oh and have I mentioned that Ellie won’t take a bottle of pumped breast milk so I am the only one who is able to feed her?

An Overwhelming Answer

The RD at this point said okay, you must see this GI doc in Seattle, I think he will actually have an answer for you. But guess what?! COVID hit Washington! The tiny bright spot of COVID shutting everything down was the fact that we were now able to do a telehealth appointment (think zoom for medical visits) with the Gastroenterologist in Seattle without having to physically drive to Seattle (it would be a very long trip with Ellie not liking to eat in different environments), YAY! After his nurse worked us into the schedule for that upcoming week (another YAY for connections with our RD who communicated to this GI doc her concern for Ellie and me – I had steadily been losing weight and energy). After hearing Ellie’s background story up to this point (hey, that’s the same one you have just made it through, congrats for staying with me thus far!), the MD asked me a few specific symptoms relating to her reactions. Not even two minutes after giving him all the information, we received an answer. I was speechless. Ellie has chronic FPIES. I didn’t know whether to laugh or cry; I also didn’t know anything about FPIES.

Deep breath. This is hard to re-tell.

Back to the GI Doc and Ellie’s new diagnoses. The Dr was very kind with explaining the broad terms of FPIES and the acute versus chronic presentation. FPIES stands for Food Protein Induced Enterocolitis Syndrome. Basically, it means that Ellie’s body recognized the protein structures in foods as ‘bad’ (similar to an allergy, but not a true IgE allergy -for IgE think anaphylaxis). FPIES is not a well-known diagnosis, the MD informed me and is just starting to be more widely diagnosed – but only if the diagnosing doctor is aware of this disease. That explains why we are now 7 months in and only now hearing about this diagnosis. (Warning if you don’t want to hear about bodily fluids please skip ahead a couple of sentences.) Since her body wanted to get rid of the food proteins, it caused her to have constant GI symptoms of nausea/vomiting as well as bloody and mucousy diarrhea. She also had significant eczema up until I switched my diet to only apples and salmon – cheers to at least some progress during all this turmoil!

Welcome back to those who choose to skip ahead, poo talk is now over. There is a lot more I could say about FPIES, but this story is already so long; please visit this website if you want to learn more about FPIES.

I admit during the MD’s explanation of FPIES I cried. I cried partly because I was so relieved to have a doctor finally be able to tell me there was a reason Ellie was so miserable and it was nothing to do with what I had done. He even said because I had started getting rid of all the ‘biggest’ FPIES trigger foods earlier on, it probably gave Ellie the ability to continue to gain weight – validation. I cried too, knowing that this was going to be a very challenging struggle for us for the next few years. Then I cried again with hope when he said that most kids with FPIES will go to kindergarten with a normal lunchbox just like all the other kids. Sweeter words were never spoken!

 It would be stressful to continue evaluating Ellie’s day-to-day symptoms during food trials (a period of five to fourteen days while introducing a new food), but the hope – HOPE people!!!– of Ellie getting through the next few years and then being able to eat like all the other kids, was such a relief! But the saga continues.

Whew, hanging in there through this story? Trust me, I know it’s grueling, even in the retelling. How’s your warm cuppa? Has it cooled like every mom’s mug that gets reheated only around one hundred times by lunch, only to find your coffee in the microwave at dinnertime? Go ahead and go heat it back up, you might as well enjoy it at its best, just make sure to come back! If you have a cookie or muffin laying around, why don’t you grab one of those, too? Every good hot beverage needs a tasty sidekick. Ok, back to it…

Change of Plans

I continued with my diet of salmon and apples for two months. During this time Ellie was being followed by the RD to make sure she continued to gain weight. Two months in Ellie stopped gaining weight. We had a follow-up appointment already scheduled with the GI MD, another telehealth visit, and he informed us during that visit that it was time to switch Ellie to formula. I was crushed. I had done so much and tried so hard to keep her breastfeeding for as long as I could. We were also scared that 1) we wouldn’t be able to switch her to a bottle, and 2) that we wouldn’t be able to find a formula she would actually tolerate.  The GI MD was wonderful again in his explanation of the plan, the reasoning behind it, and then the validation of my feelings of loss. (Please let me say here that I don’t want this in any way to be seen as a topic to stir up controversy, I am just sharing my emotional rollercoaster ride of Ellie’s story. If you feel the need to debate breast vs bottle, please do so elsewhere, thank you.)

The MD said that babies with FPIES, especially babies who reacted to the extent of Ellie (aka EVERY food), oftentimes aren’t able to breastfeed because they just seem to react to the breastmilk in general. Now let me take a quick break to tell you how much pressure I had been putting on myself over the last eight months at this point.  Everything I ate had the potential to make Ellie miserable, and most did. It was completely up to me to provide her with nutrients to help her grow, but by doing so I was also making her miserable. Now, I didn’t blame myself per se, because I was doing the best I could (HECK I was only eating two foods for the past two months) but KNOWING that it was what I ate that made her symptoms worse, had been heartbreaking for me. Not to mention the pressure and stress. I had so desperately wanted to breastfeed Ellie as I had done with Rosie, our oldest, but this was no longer an option.

The MD also stated his concern that Ellie had now stopped gaining weight for the past few weeks and he was concerned she was no longer getting what she needed in terms of nutrients.  Breastmilk has enough nutrients and calories in it to be the sole source of nutrition for a baby up to around seven or eight months he informed me. (Again, please no comments or debates on breastfeeding, that is not the purpose of this article, thank you.)

Okay, I have a medical background in nursing for six years before I had the girls. I can understand rationally that Ellie needed more calories than I could provide, and I had hope that what the GI doc was saying was true – there was hope in formula.  Ellie could potentially get to a point where she wasn’t constantly miserable.  This gave me the reasoning I needed (along with her needing more calories, of course) to agree with the doc and switch Ellie to formula. Although I will admit I definitely felt a sense of loss knowing I would be giving up breastfeeding, which I had fought so hard to continue.

The Switch to Formula

Now, switching to formula was a huge undertaking. We had to first get Ellie to take breastmilk from a bottle, so my wonderful husband took the time to patiently attempt to feed her a bottle again and again and again over the next couple of weeks.  Eventually, Ellie stopped fighting the bottle and accepted it, it was a start!

Next came the tedious process of finding a formula that Ellie would be able to tolerate.  Our wonderful RD gave us several samples to try with her opinions of which she thought would be most successful to try first. To gradually switch her to formula, the plan was to switch her 10% at a time, so 10% formula to 90% breastmilk mixed in her bottle, then increase that to 20% formula to 80% breastmilk after she was successful with the 10% and continue that until she was completely formula. Well, the first formula she completely refused to take, and she was back to refusing bottles for a while. Huge disappointment! The second formula she took – hooray! – but then had FPIES symptoms the following day, so that was out as well. The third formula was the winner!

Now the winning formula wasn’t one of the fancy elemental formulas like Neocate or Elacare (the previous two she had tried) that are formulated for severe allergies. It was Similac’s ‘ready to feed’ Alimentum. Not the most economical way to buy formula since one jug would only last her one day, but the ‘ready to feed’ version doesn’t have corn as an ingredient, which made it a winner. It is also formulated for babies with allergies, just not elemental (both the RD and MD could go into a lot more detail about the differences, I just knew it was okay to give Ellie). According to the MD, he wasn’t surprised that Alimentum was the successful formula since there are quite a few FPIES babies who don’t tolerate elemental formula for whatever reason and end up on Alimentum. (Also, I am not sponsored by Similac at all, this is just the formula we use. Although we should have definitely bought stock in Similac at this point!)

Formula was not the way I would have chosen for Ellie to receive her nutrients, but then again, I wouldn’t have chosen anything about this diagnosis for her or any child. So, if you are reading this to find solidarity with your own child (or even yourself) struggling with FPIES or severe allergies, know my heart goes out to you, and I wish I could give you a big hug and I would happily accept one from you in return!

Okay back to the story. Are you still with me? It’s long I know, but trust me, it was even longer living it! However, I will try to make this as concise as I can, but just to warn you, there is still a way to go to catch up to where we are now. You might just want a second cup of something warm and delicious. If you are pressed for time and want to know the story in summary format, go ahead and skip to the bottom, and then come back and read all the details when you have the time.

Baked Goods Here I Come!

After over a month of working on transitioning Ellie from breastmilk to formula in a bottle, I breastfed her for the last time. I had been breastfeeding her still at night before bed and giving her bottles the rest of the day. I had such mixed emotions the last time I breastfed her, but I had such hope for her symptoms improving. Also, not breastfeeding anymore meant I would no longer be eating ONLY salmon and apples and I would never ever have to eat microwaved salmon leftovers again!!

Two truly wonderful people understood the difficulty that I had been enduring and spoke my love language by delivering delicious baked goods to me the week I could eat FOOD again.  A sweet neighbor brought me homemade chocolate cinnamon babka, and an amazingly sweet friend/adopted sister from Alaska sent me blueberry lemon pound cake.  I will admit, I ate ALL of them! That first delicious taste of something other than that VERY selective diet I had endured is still something I dream about.  I was able to eat all the delicious foods again! Okay I admit it took my body a hot minute to readjust to dairy and caffeine from coffee being in my life again, but we got there through much determination on my part! 

After a few weeks of Ellie being solely on formula, we noticed a HUGE improvement in her symptoms. Her eczema was pretty much gone, her other GI symptoms were greatly improved, and she stopped having nights spent crying and arching her back. Overall, she seemed so much more comfortable. Thank you Jesus.

As much as I wish this was the end of her journey or the turning point – where I say it was only up from here, that would be a huge mistruth. Unfortunately, that is not how our – really, Ellie’s – story goes.

Oral Aversion

We had started attempts at solid food with apples when Ellie was six months, this was during the time I was only eating salmon and apples, so she was already getting food exposure to apples. I made her apples – and only apples – several ways: pureed, baked in sticks and bites, grated, as well as raw apple in several different shapes (even a puzzle – Ellie loved it!). As interested as Ellie was in the food initially, she was not interested in putting it into her mouth.  She would prefer to manipulate it with her spoon or fingers, and she had almost no interest in the puree. After several months working with Ellie on oral acceptance of solid food, an eating therapist (an SLP – Speech and language pathologist) joined our team to assist us with Ellie’s lack of progress.  Ellie was soon labeled with ‘oral aversion’ and a new plan of therapy was added to our game plan.

Over the next couple of months Ellie made progress. She went from refusing to put the food in her mouth to putting food in her mouth once per eating experience, but she would then proceed to gag repeatedly, sometimes until she threw up. This didn’t seem like a lot of progress in my eyes, but I was told putting food in her mouth truly was progress, even if she didn’t swallow any of it. So, we revised our expectations of Ellie eating right away and continued the slow process of eating therapy.

Ellie had always had a lot of ‘swallowing’. I don’t know how else to describe it other than she swallowed constantly.  During the day, before and after her bottle, and especially when we laid her back to change her diaper or to do lotion after her bath.  It was to the point that she almost seemed to choke at times because of her ‘swallowing’. I had told the GI doc that it seemed as if she had reflux.

To rule out reflux we tried medication for a period of time to see if there was any improvement, there wasn’t. The MD proposed having us do an Upper GI scope on her in Seattle when she reached the age for the clearest results, after she turned one.  He wanted to rule out a few other diagnoses that could only happen through visualizing her upper GI and taking biopsies. We agreed to this plan with hope again for answers – now to her oral aversion and swallowing. Also, due to all her swallowing it seemed, Ellie was behind verbally.  She didn’t talk at all. Ellie was mostly quiet and staring/observing, sometimes with grunting or whining if she wanted something.  This was something that the SLP, as well as her pediatrician, wanted to keep an eye on.

Hospital to Seattle

Around the time Ellie was 10 months old, we had our first experience of her being sick while on formula. Turns out she refuses all bottles when she doesn’t feel well. Long story short (are you shocked I could even do that?!) she/we ended up in the hospital for a few days on IV fluid and IV anti-nausea medication until she felt better and started taking her bottles again.

Due to this setback, there were a couple of changes to our thought process of Ellie’s health plan. First, we wanted to not end up in the hospital with her all the time, so we became beyond careful in not having her exposed to any illnesses – meaning we isolated, completely. Thankfully this was during the end of the summer in 2020 so – COVID – which means we weren’t so odd in our behavior, just a bit on the extreme side. The second change to the plan was no longer waiting to take her to Seattle for her GI doc to perform the scope of her upper GI. When your child isn’t well you, are desperate for those missing puzzle pieces to understand what is wrong. A few weeks later we had made the trip to Seattle and back and were armed with the results of the test. There was nothing found besides minor inflammation. GREAT! Well, sorta. I was thankful to not be adding a potentially more challenging diagnosis to her resume, but I had truly prayed for at least some answers!

Ellie is One!

Ellie turned one, I feel like I need to acknowledge we made it a year with this amazingly sweet and spunky goofball!! Because guys, she IS, despite it all – this girl is an adventurous, hilarious and independent little rascal. At this point we safely have two foods that are FPIES passes: apples and watermelon. For her birthday ‘cake’ she had a watermelon rind to poke at with a candle stuck in it. Since I express love through baked goods, this was an emotionally challenging moment. For Ellie’s older sister – Rosie’s – first birthday, I had made decorations, invited family, and made her a special cake.  For Ellie, I just couldn’t put my energy into something she couldn’t even enjoy. Plus, we couldn’t have anyone come to the birthday since we were trying to keep her from getting sick. We did sing happy birthday and had family FaceTime in to join us, but it still wasn’t the same.

Over the next couple of months, we had a few safe foods: apples, watermelon, pear, butternut squash, and cucumber, oh and sea salt. (Yes, I count sea salt as a food because it made a WORLD of difference in eating the squash)! However, we had periods of time when Ellie just wasn’t as eager to take her bottle, but seeing as she didn’t LOVE her formula, we just chalked it up to a varied appetite and she just didn’t always need as much.  Her growth was doing well so no one (besides maybe me) was concerned about her apparently sporadic decreased volumes of formula.

Second Hospital Admission

This takes us to December 2020 and we are once again in the hospital, this time for a week. Repeatedly through the first two days, I was told that she was probably tired of drinking her bottle and either needed a feeding tube or she had a bit of a bug and just needed to get over it while getting hydration.  Um, no. She was discharged the second day of our hospital stay and we made it to almost walking out the door, but I wanted to give her one more bottle before we went home and of course, she wouldn’t take it, so stay we did. Turns out Ellie had a UTI that had been missed (for a few days) since she didn’t ever have a fever or symptoms other than just not eating and being dehydrated. Said severe dehydration masked her urine retention from the docs and myself. It was amazing news to have an answer that had an easy solution – she needed antibiotics.

This did complicate our daily evaluation of Ellie’s symptoms with food trials: we weren’t sure if she was reacting to a new food, or if she had a UTI again, or was it something else altogether? Her pediatrician said that if she had another UTI we would need to do a VCUG (think video X-ray of her bladder and ureters – with contrast in her bladder). During her hospital stay she had to have an ultrasound of her kidneys which were both enlarged, most likely due to her urine retention, so that earned Ellie a follow-up kidney ultrasound a few weeks after discharge to make sure her kidneys returned to normal size. To simplify at least this part of the story, the follow-up US was almost completely back to normal! Phew.

Slight progress in this saga was made a month later. Ellie would now suck on the fruit pieces and swallow some of the juice! Also, she would chew on a piece of food and NOT gag, but she still spit the food out. So, progress, but not a total turnaround. Ellie still had periods of decreased intake, which led us to taking out pears and apples, which helped! However, come February, Ellie had another period when she just didn’t want to eat.  Back to the pediatrician’s office we went and discovered she had a very small UTI, not seemingly significant enough to have caused her to not want to eat, but she was given another round of antibiotics for the infection and we scheduled the promised VCUG.

Thankfully, the VCUG went smoothly, and she had no issue with the anatomy of her bladder or her ureters. YAY for continued good news from the myriad of Ellie’s tests over the past year. BOO for no answers. There HAS to be an answer for her sporadic periods of decreased intake and increased swallowing though!

The Missing Answer

After talking with my mom and husband several times about feeling hopeless with Ellie’s lack of significant progress and still feeling as if we were missing SOMETHING; I thought about what I was saying. It seems that she has the most symptoms following apples, pears, and watermelon (since she just sucks the juice out of the pieces of fruit). Wait, those all have a lot of fructose, could that be something? I will admit something, I Googled fructose issues. *GASP* I know, don’t Google your child’s symptoms unless you want to find the WORST-case scenario. However, I took the most likely result and messaged her GI doc about the possibility of fructose intolerance. He is wonderful and always gets back to me without telling me ‘no, that’s dumb’ although I’m sure he wants to say that sometimes.  This time however that was not the case. He said (in summary) ‘the symptoms you mentioned are absolutely symptoms that match up with fructose intolerance, so if taking fructose out of her diet helps, then yes that is the issue’. We took fructose out of her diet. HALLELUIAH, PRAISE JESUS, *happy dance*, AMEN!!!

Ellie is now almost 19 months old and she is talking for the first time! Can I just tell you the JOY in hearing her voice!! She started off with a couple of words, but it seemed like daily she was adding words to her vocabulary.  Her ‘swallowing’ was also almost completely gone after a couple of weeks with no fructose! I have to say this was the second biggest turnaround (after switching to formula) we have experienced thus far in her journey. Again, I wish I could say it was all sunshine and daisies from here on out but, well NO, Ellie doesn’t follow the rules.

With Ellie’s now two safe FPIES non-fructose foods of butternut squash and cucumber – as well as her improved intake and verbal ability – her dietician wanted to try to switch her over to a toddler formula instead of an infant formula. Her recommendation was Neocate Splash. We attempted to get Ellie interested in the Splash by presenting it in different ways: like small popsicles, in tiny cups, and with fun new straws. The unflavored was an immediate no, but she showed some sporadic interest in the grape flavor. We attempted giving Ellie Splash during her mealtimes for a few weeks, but it seemed to convolute the results of other new food trials.  It was hard to be certain if she was reacting poorly to caribou (thank you Alaska roots and generous parents) or turnips when she consumed half an ounce or even up to an ounce of Splash the same night.  We met with the RD and the eating therapist and they decided since we had made such little progress with Ellie taking the Splash, to pause on introducing it to her diet for a while.  Instead, see if we could identify a few more FPIES safe (Ellie tolerated) foods to have in her diet.

Attempting Food Variety

We had a plan, and I had hope once again of adding foods to our limited repertoire for Ellie.  Up to this point, I had presented butternut squash (as well as cucumber) to Ellie in MANY different ways. Let me tell you what a dehydrator, an awesome food processor, and a Silpat can do – over 15 different ways to present one food using only sea salt as a seasoning. I will enlighten you to several of those ways in a later post if you are also stuck with limited food options and need some variety in texture and shape for your kiddo or yourself. The big win with squash was squash seeds (also a later post). Ellie sucked on these constantly and always asked for a ‘seed snack’ when Rosie was having a snack. It felt so good to be able to offer her something she actually wanted to ‘eat’.

Implementing our plan of adding foods started with re-trialing turnip and caribou as both of those theoretically should have been passes. [Now please let me say here, had I known better at the time I would have waiting a couple of weeks between each fail to allow her intestines to fully heal, instead of proceeding with the next food trial a week later after her noticeable symptoms had resolved. I had been following the directions I had been given. However, being on the other side of this giant fail and after talking with her allergist (amazing lady!) I realize now I didn’t help her body at all with ‘rushing’ the few food trials in a row.]

We attempted a turnip food trial – fail with FPIES symptoms. We attempted caribou jerky – FPIES symptoms fail. (Huge thanks again to my parents in Alaska for coming through with this! I can’t thank my dad enough for taking a couple of weeks to figure out how to make caribou jerky with only caribou and sea salt, as well as sharing their caribou meat. Have I mentioned how awesome my parents are yet?! They are always willing to help, and I am forever thankful for them!) Then we attempted honeydew, which has a high FPIES pass rate as well as being a fruit that is often tolerated with those who have fructose intolerance. I had such high hopes for honeydew as Ellie took a liking to it, but since she was only getting a small amount of squash flour along with the honeydew juice in her stomach, it just wasn’t quite enough to prevent a fructose reaction of increased swallowing, increased painful gas, and decreased interest in taking/finishing her bottle. Small joy though, no FPIES reaction to honeydew.

The Worst Happens

Back we were to cucumber and squash, oh and don’t forget sea salt! Then the worst thing (okay not the worst, but it felt like it at the time) started to happen…she appeared to be reacting to one of her two safe foods – cucumber. We stopped cucumber and made an appointment with the allergist.  We now had an appointment for a month away, not really what I had in mind, but I knew that the allergist was incredibly busy. Thankfully, and I’m sure with God’s doing, I called a couple of days later and asked to be put on the waitlist for any canceled appointments and the lady said, ‘well you have perfect timing, someone just canceled their appointment with her tomorrow, could you make that?’  I felt such relief and a sense of reassurance that, even when it was hard to see through all of Ellie’s trials, God was in control of things. We, of course, took that appointment and looked forward to any direction the allergist could offer.  I was truly lost at this point and wondering where we could take her to find out what we are missing?

Ellie’s Allergist Comes Through Again

The allergist was so calm and reassuring with us. I cannot overstate how grateful I was/am for her kindness and extensive knowledge of all things allergy-related, including FPIES. She saw and acknowledged how hard this was and apologized to us that she had a suggestion that was not going to be easy (I’m not sure why when she was giving us a plan that could help). She said that she had seen this many times with FPIES kids, that there was a period where they just failed everything and seemed to lose previously safe foods as well – failure breeds failure, and success breeds success. What Ellie needed was a period of prolonged gut rest – three to four weeks of nothing but her base formula- and after these four weeks her intestines should be reset, and she/we should be able to get some food passes.

Sweeter words were never spoken! The allergist even acknowledged my desire to take her somewhere to get Ellie checked out by specialists for anything that we might be missing. (Apparently, the place to take FPIES kids is National Jewish in Denver, CO.) She said we weren’t there yet, and that every time she had tried gut rest for a child it had worked (well, all but one time, and we aren’t focusing on that one time).

Talk of a Feeding Tube

Once again, we had a plan! How many times have I said that in this story thus far? This time I had full confidence in what we were going to do to turn around Ellie’s situation, which was nothing. The allergist had agreed to leave squash in Ellie’s diet with as her formula during the gut rest since she hadn’t reacted to squash, and the team determined it had become a ‘safe food’. Of course, a few days into our gut rest Ellie started having some GI symptoms that blatantly said: FPIES! NOOOOOOOO!!! I called and left a message for the allergist about if we should take out squash and/or the Milk of Magnesia that Ellie used for constipation. The allergist got back to us through her nurse and said yes, it was probably best to give Ellie as complete of a gut rest as possible, so no more squash, ONLY her Alimentum RTF.

Later that week, we were in the pediatrician’s office to rule out any other cause of Ellie not eating again. With no discovery of any other cause, the pediatrician is now strongly encouraging an NG tube (feeding tube that goes through the nose to her stomach). Back and forth we went to the office due to weight loss and eating concerns – the feeding tube is being arranged. I continue to ask the pediatrician for a few more days before putting in the tube to let Ellie turn around and recover from whatever it was that was causing her to only drink part of her bottles and refusing some bottles altogether. Her pediatrician is wonderful and understanding but felt strongly that taking the bottle variable out of getting Ellie her necessary nutrients would be the best choice at this point. 

It was then that Ellie’s RD joined the conversation. She would be following us and assisting with the NG tube arrangements. She was concerned about placing a feeding tube for Ellie. Since Ellie has oral aversion and is also so particular about where, when, and how she must have her bottle, adding a feeding tube in her nose wouldn’t be an ideal situation. This could cause Ellie to refuse her bottles altogether

because of her frustration with having something on her face. If her refusal continued and we lost her ability to take a bottle of formula, that puts us in a very difficult position. Talk of a permanent feeding tube (surgically placed in her stomach) had been mentioned previously, but only in the context of, “If she gets to a point where she is no longer taking her formula.” The chance of her refusing her bottle for a period of time would bring the surgical option back into the conversation. I wanted to avoid that if possible!

Discussing this shared concern with the RD, as well as the fact that Ellie had improved in her intake over the couple days of back-and-forth, we both agreed to give Ellie over the weekend. If her intake improved – great, we would continue with bottles. If she went down in the amount she was taking, the NG tube would be placed later in the week. I am thrilled to say that over the weekend Ellie was able to get back to taking almost all her bottles – answered prayers!

The New Plan. Take….46?

I received a call from her GI doc’s office saying that he wanted to meet with us. I have to say, I was a little surprised to get a call from a

doctor, when it’s normally me contacting them when needed. This one thing, knowing that a doctor was reaching out when he felt the need to discuss Ellie’s care, was a relief. I have a lot of respect for Ellie’s GI doc in Seattle and was glad to be able to discuss the situation with him. He fully supported the plan that the RD and I had agreed upon. We would give her the best shot of gut rest and then try foods again. The GI doc said that Ellie doesn’t follow the rules, so we would give her a lot of leniency in not taking her bottles if/when this happens again – to the point of taking her to the ER for fluids if need be, to allow her to stay hydrated while her body was recovering enough to take her formula again. Once more, a new plan!

The roller coaster of emotions through the ups and downs is not for the faint of heart. (I have never liked roller coasters.) Through Ellie’s slow progress and her many setbacks, I have to pick myself up from being beaten down repeatedly. However, with each ‘new plan’ it gives me some hope in moving forward. Like all the previous plans, I have hope again. I am going to hold on to this HOPE to the best of my ability – with so much encouragement from friends and family (and many baked goods).

The Here and Now

Well, now that we are down to tepid dregs in the bottom of our mugs and the crumbs on our plate, let me tell you, “you made it!” You have stuck with me through this long and draining story of Ellie’s journey thus far.  That’s right, you are caught up to now. Thanks for listening. Even though I don’t know you, it helps. Please continue to come back and check on us as I continue to post updates to our journey. I promise NONE of them will be nearly as long as this one! We are eagerly looking forward to our first two-week food trial that will start at the end of this week. First up is the toddler formula: Splash! We are crossing our fingers, toes, and anything else we can think of (as well as saying oh-so-many prayers) that this will be the turnaround point for Ellie that everyone is counting on. We can only hope! Please hope with us. 

As I pour another warm drink, here is a CHEERS to you friends! Thanks for coming here where I can share our story, our hope and BAKING! 

Ellie’s Journey in Summary        

Here is the summary I promised for those that didn’t have the time to dedicate to reading Ellie’s story. Or for those who want to know Ellie’s story but don’t want to read all the difficult details.

• Ellie had a lot of gastrointestinal (GI) symptoms starting at 5 weeks old. I started the process of taking foods out of my diet to help her symptoms (she was breastfed). She had several tests and saw a local GI doc – not helpful and passed the tests.
• I continued to take foods out of my diet. She continued to have symptoms.
• She saw an allergist and found out she had a true allergy to peanuts and was patch test positive to most of the foods we tested. I was down to seven foods to eat.
• She continued to react, and I ended up with only salmon and apples to eat. Her registered dietician sent us to another GI doc in Seattle and he diagnosed her with FPIES.
• After two months of me eating salmon and apples to be able to breastfeed Ellie, Ellie had stopped gaining weight. GI doc said it was time to switch to formula.
• After a significant struggle and several failed elemental formulas- Ellie ended up on Alimentum Ready to Feed formula (no corn).
• Ellie was diagnosed with oral aversion and was assigned an eating therapist. Ellie also had constant ‘swallowing’ and this seemed to be keeping her from being verbal, but it was unknown as to the cause since the trial of medication for reflux showed no improvement.
• We had our first admission to the hospital when she was about 10 months old and had a subsequent upper GI scope done in Seattle to make sure we weren’t missing a diagnosis.
• She had another admission to the hospital a few months later – because she refuses to take her bottle when she doesn’t feel great, so she gets dehydrated. Ellie also went back and forth between apple, pear, watermelon, squash, and cucumber being a ‘safe’ food or not. She continued to spit out the food after putting it in her mouth.
• She had several more tests to do with her bladder and kidneys, which turned out okay.
• I then figured out around when she was around 18 mo old that she had fructose intolerance. Her GI doc confirmed, so we took fructose out of her diet (no more apples, pears, or watermelon for now).
• After removing fructose, she miraculously became verbal and her constant swallowing decreased significantly. Such JOY!!!
• We tried several food trials and she failed several in a row and then lost one of her two safe foods, only squash and her formula were left. Back to the allergist we went, and the allergist said she needed a period of gut rest. A week into the gut rest and she was down to only her formula. Ellie’s medical team (pediatrician, GI doc, dietitian, allergist, and eating therapist) discussed the pros and cons of giving Ellie an NG tube since she was losing weight and intake was low. We managed to wait her out and even though everything was scheduled and set up for an NG tube, Ellie started taking bottles on her own again, YAY!
• Now you are caught up, we are planning on starting a two week food trial of a toddler formula in a few days, so come back and check to see how she does!