FPIES Superhero Spotlight: Nadine & Jorie

Hey allergy minded friends. I hope this week finds you warm, well, and reaction-free! Here in our little FPIES world we’re feeling oh so grateful to be all of the above. Today I’m going to share another amazing FPIES superhero story with you! Meet Nadine. She’s a mama who’s been through a premature baby who cried in pain 23 hours a day, months of breastfeeding on a 9 food diet, and an 18 month journey to an FPIES diagnosis! Her little love, Jorie, is such a fighter. Read on to her how she’s advocated and fought for the health care and support her kiddo needs…and look at that sweet smile now! 

IMG_6361

First of all, introduce yourself! 

My name is Nadine. I’m a 34 year old wife and mother of two daughters. I have a 1.5 year old FPIES baby and an 8 year old I became a mother to when I married her dad. We live in very rural Maine where the snow apparently is never going to stop!

I gave birth to Jorie, my FPIES child, at the hospital I work in. She was born at 34wks 5 days on August 30th because I suffered a placental abruption. This was very traumatic for our family. She was too little and her lungs and kidneys were underdeveloped.  She had to be air lifted to the closest NICU, 3 hours by car. They didn’t have a bed for me so they left me behind, and my husband drove straight down to be with her. I checked myself out of the hospital 36 hours later and rode down to the NICU with my mom. We were there 16 days and then we got to bring her home!

How and when was your little one diagnosed with FPIES? 

The process for us was long and frustrating.  Our FPIES diagnosis did not come right away.

Jorie had a lot of issues breast feeding from the time we got home from the NICU and I was very concerned about them. She’d cry 23 hours a day, never slept for more than an hour or two,  and she spit up large amounts. I was a first time baby mom and didn’t know to look for things like mucus and blood in her diaper. Every time I brought it up to our pediatrician they’d tell me I was a new mom, babies cry, she most likely had reflux, etc.

We also had a NICU doctor and I asked that doctor to make a referral to see a GI because our pediatrician was less than helpful, and they did. While we were waiting to see the GI I used google and found dairy intolerance in babies had the same symptoms so I cut dairy at 3 months. We got in to see the GI at 5 months and she told me to cut soy. At four weeks soy free I did a modified Total Elimination Diet (TED) where I ate her safe foods not pureed and chicken. (Banana, avocado, sweet potato, squash, potatoes, apples, carrot and peas)  After that the crying and spitting up stopped for the most part. Our working diagnosis was Milk and Soy Protein Intolerance and reflux. 

During this diet we also switched pediatricians. Our new pediatrician was great. He told us that we could trial dairy around 1. So at 11 months we started step one of the dairy ladder, baked in, ¼ cup milk in 24 blueberry type muffins with only safe ingredients (as far as we knew at the time). She started projectile vomiting on day 3 when we gave her 1 whole cookie. (For those doing the math, that is ¼ a teaspoon of baked milk per cookie.)

I then started calling her GI back, saying:

“This is more than a soy and dairy intolerance, this is terrifying!

What are the next steps?”  

While waiting to hear back from the GI we got a referral to a Maine allergist. The GI got back to us and at 13 months old Jorie had an endoscopy and they found nothing, including no reflux damage at all.

Now the GI agreed with me- this was not reflux, so we took her off the medications.  I had found the FPIES support group on facebook and asked the GI about this. She told me it couldn’t be FPIES because that only happens with rice and oats.  We left with no answers but I still had my suspicion that it was FPIES from what I was studying.

We went to see her allergist 2 weeks later. This doctor brought up FPIES before I could but also said that he was hesitant to diagnose it because (1) he didn’t treat it and (2) she had too many triggers for it to be FPIES. He did know soy and diary were triggers though. The allergist said seeing a specialist was a good idea and to do 8 weeks of gut rest. We used this suspected FPIES diagnosis in his doctors note to get a referral to the closest FPIES specialist, 8 hours away, in Boston, MA.  We also did 8 weeks of gut rest and finally reached baseline for the first time.

We saw Jorie’s FPIES specialist at Boston Children’s Hospital and got her official FPIES diagnosis just short of a year and a half on 1/22/2019.

What are her triggers?

Acute: Soy, prunes, dairy, wheat.

Chronic: rice, beef, pork, poultry

What has been the hardest part of coping with FPIES? What has been the most rewarding? Any silver linings to share? 

The hardest part about coping with FPIES at first was no one believing me. Now it’s the anxiety and fear that sit in my chest every day waiting for her to have a reaction or fail another food.

The most rewarding thing has got to be her hitting baseline and hearing that real laugh for the first time. She was late to smile and laugh. I called her my serious baby, but in hindsight I think it’s because she was in pain.

We all worked so hard to get her to this point and she is the happiest toddler! 

Another great thing is that we were told by our nutritionist that she is the healthiest baby because she doesn’t eat much in the way of processed foods or foods with added sugar.  We also have lots of safe fruits and have never failed a vegetable. She’s our vegan baby and we all have a healthier diet because of her.

A silver lining to being on an FPIES diet and wanting to breastfeed is I’ve lost 56 pounds. I’m actually smaller than I was before I got pregnant, down from a size 16 to a size 10.

How does FPIES affect your daily life? 

Of course the diet changes had a big impact. It takes me 2 hours to grocery shop and I have to go to three stores to get all our safe foods. I also do food prep for both of us on the weekends so she has food for daycare and I have food for work. There is no fast food options when you have FPIES and there’s not an option in the hospital cafeteria for me!

I’m terrified to take her anywhere there might be food I didn’t prepare.

Our family has been pretty good about it especially as we got more information but how can you not still worry? Everything, everything has soy- crayons, ink in the cardboard book pages, dog food… so we’re always on the hunt for items that no one would think to put up that she can put in her mouth. A recent example would be our annual Christmas party. There were plates of food left sitting on chairs and end tables within her reach and kids dropping crumbs and eating everywhere not a designated room. She walks now so we can’t just strap her in a highchair or carry her. I brought her safe treats, two dozen specialty cupcakes and cookies, enough to share if someone else wanted to try them. Then someone set a knife from a pudding dairy dish on the dish of her safes. We ended up throwing the plate of about 20 specialty cupcakes. We were going to take the leftovers home for her to have a treat, so it was disappointing we spent that much money to throw them out, but we couldn’t take the risk!

We document and research everything, everyday.

What she eats, when she eats, when she poops, food trials, new research, medical journals, articles, blogs. If it has FPIES in the title we have looked at it.

The waiting for a reaction or a mistake to be made is also a daily occurrence. That anxiety never leaves even if you’re with them, you don’t know what was given to them two hours ago or what she could have found on the floor.

I’m exhausted. Not just from the worry and anxiety and work I put into keeping her safe but also I get up with her a lot at night. We get a lot of “helpful” advice about sleep training but you can’t sleep train through stomach pain. She’s not going to cry it out, she’s just going to cry. She’s never slept through the night but at baseline she only wakes up once or twice. This makes trialing new foods tricky because I still have to work and might be doing so on no sleep.

What have you learned about yourself and your little one in this journey? 

I will do anything for my daughter.

I am her strongest advocate and it is my life’s mission to make sure she is happy and healthy.  I didn’t know how special regular moments would be, things like: she can eat oranges! Look at her using a spoon to eat tomato soup, sitting at a table at daycare, bringing us something she found on the floor instead of putting it in her mouth.

What do you wish everyone knew about FPIES?

To be kind to our FPIES family: give us the benefit of the doubt for not coming to visit more or for not attending a birthday party. To be supportive too… like most parenting choices, you don’t have to agree or believe in what we’re telling you but you do have to respect our choices. You don’t have to believe my kid has a dairy issue but you also cannot feed her a cheese stick.

All FPIES cases are different. Some babies do outgrow it by 3, but not all. Some kids only have one or two triggers, some have more. Some have lots of safes, some have a handful. Some moms see reactions through breast milk, some moms don’t. There’s so little really known about FPIES and each mom has a different story and each doctor has a different method. We’re all just figuring it out!

Finally, this is our lives now. We can’t answer the “when” questions because we don’t know. When will she outgrow it? When will you stop breastfeeding so you can eat normally again? When will you come visit? When will she sleep through the night? When will you be comfortable leaving her alone with a sitter? I don’t know.

I’m just happy that today I have a healthy, smiling little girl and that we’ve figured out a way to manage it. Please live in this moment with us and helps keep her safe, healthy, and smiling! 

If I wrote down all the parts of this post I found relatable, I’d pretty much just have to rewrite it all again! From doctors calling our crying babies “colicky” and denying any real issues, to the anxiety over leaving the house, to the sadness of contaminated safe foods, I know you allergy mamas can hear Nadine and Jorie loud and clear. Thank you for reading her story, for sharing your time with me, and for being a part of all our food allergy journeys. Wishing you all the best this Tuesday, and every Tuesday.

Advertisements

Wins & Losses in our Little FPIES World

It’s been an icy, snowy, more than a little bit stir crazy week here in Minneapolis. We’ve had a whole lot of homebound days, which has led to reorganization, purging, cleaning, and prep for baby #2. One of the projects I’ve enjoyed the most has been creating two Lincoln safe food spaces- a fridge shelf and a pantry drawer. And believe it or not, at four months into this FPIES madness, we have enough safe foods to fill both! I didn’t know if we’d be here by two years, so to be here by ten months feel likes a colossal win. Take that, FPIES.

I was especially grateful for this win as a fail this past week really gutted me. We did a seven day blueberry trial, and I didn’t really accept failing blueberries til the seventh day. Partly because the signs weren’t as clear as they’ve been in previous reactions; partly because Lincoln was loving blueberries so dang much. This one stung, FPIES. Come on.

While there’s no complete consensus on how to trial foods, people generally agree that when a food or two in a category is safe, it’s a good place to keep trialing. We hadn’t trialed berries before, but they’re very low risk fruits, and Lincoln had already passed some higher risk fruits like apples and pears. So, day one, one blueberry. Lincoln threw one of his first legit tantrums because he loved that sweet gusher-esque experience so much and I couldn’t yet give him more! Day two, two more blueberries, one more tantrum. Day three, three berries, and the first signs of some tummy distress. I hoped beyond hope it was just normal baby tummy adjusting to a new, somewhat acidic fruit. We kept at it. By Day 5 the kid was devouring his blueberries- I cut them into fourths just to make them last longer! But the diapers were getting worse, as was the diaper rash, and he was having quite a few extra night wake ups.

So, goodbye for now, blueberries! Lincoln adores you so I hope we can retrial sooner than later. Another lesson in letting trials run their course…but at least I didn’t buy the Costco sized bag this time. I’m learning!

If you’re an FPIES or a food allergy mama, you know how hard these fails hurt. Especially when it’s a food your kid willingly picks up and eats with no extra tricks or prep needed. I know blueberry isn’t a hidden ingredient in many things, and it won’t be that hard to avoid, it was just such a FUN one for Lincoln and eating blueberries delighted him! Fails hurt. Moving on, though…

Back to our stocked (now minus the fresh, frozen, and freeze dried blueberry selection) Lincoln safe spaces! Here are the products we’re buying/making/loving right now. Can’t wait to see these shelves overflow! If you’ve got a safe food space set-up, send me a picture here or on instagram (@chunkythighsandfpies) so I can see what we’re working towards! Lots of love to you, allergy folks.

fridge numbered

 

1: Quinoa Nuggets

Recipe from: http://cradlerockingmama.com/quinoa-nuggets/

2: Steamed Broccoli sautéed in Simply Balanced almond oil

Messy, but Lincoln can’t get enough!

3: Trader Joe’s Unsweetened Applesauce

4: MALK unsweetened almond malk

Just almonds, salt, and water!

5: Ground Almonds

Great for mixing into purees! I used Kirkland Organic Almonds and my trusty Vitamix. A great way to sneak fat and protein into little ones’ diets.

6: Blueberries

See above…no longer on the Lincoln safe shelf. Alas!

7: Beets

Another Trader Joe’s staple. Pre cleaned, peeled, and cooked…Just slice and serve.

8: Watermelon slices

Just sweet, fresh watermelon matchsticks for Lincoln to pull apart with his six teeth (watermelon doesn’t freeze well, sadly)!

drawer numbered

1: Kapok Naturals Single Ingredient Quinoa Flour

If Quinoa is a safe, you need this ASAP.

2: Beechnut Just Apples and Just Pears

3: Beechnut Just Pumpkin

4: Market Pantry Canned Pears

The only ones I’ve found with no lemon juice, preservatives, or corn syrup.

5: Brothers All Natural Freeze Dried Apples

A great snack to have on reserve in the diaper bag!

6: Market Pantry Single Ingredient Canned Pumpkin

7: Ancient Harvest Whole Grain Quinoa Flakes

8: Crisp Green Freeze Dried Pears

9:  Sun Organic Farm Quinoa

I like the tri-colored just for variety!

10: Lincoln’s dessert after legit every meal: Quinoa Queen O’s

You need these in your life if quinoa is on your list.

11: NEOCATE – LIFESAVER

We’re your number one fans. Lincoln will be your Gerber (Neocate) Baby.

12: Freeze Dried Blueberries

We’ve said goodbye to you for now. But, we did love the Trader Joe’s and Whole Foods options, in our week of blueberry fun!

Allergy families, feeding a kiddo with such a limited list of safe foods is not for the faint of heart. And we’re luckier than many FPIES families in how many safes we’ve already gained! So if your list is short and your fails keep coming…stick with it. Our babies will grow out of this someday, and in the meantime, we’re raising healthy eaters and doing our best! In the words of my husband (to Lincoln or to me? It’s unclear…and I think I prefer it that way) “keep that chin up and those thighs chunky!”

FPIES Superhero Spotlight: Brittany & Ryan

To follow the blog, subscribe using the wordpress link below, and follow us on instagram: @chunkythighsandfpies 

 

Hey FPIES friends! I hope you’ve survived the polar vortex, or whatever crazy weather the last week has brought your way. In Minnesota our house is basically surrounded by a sheet of ice, giving us plenty of time for naps, indoor play, and blogging. A week or two ago I asked on Instagram for mamas who were willing to share their FPIES journey with me, and with you all. One of my hopes is that this little blog exposes the world to this diagnosis, so that when you someday have a friend or a coworker or hear of a baby somewhere exhibiting these symptoms, you can point them in the direction of FPIES. (If you want a refresher on what these symptoms are, check out: https://chunkythighsandfpies.home.blog/2019/01/29/so-what-the-eff-is-fpies/)

Each and every story of a baby who went months, or years, without a proper diagnosis hurts. As you’ll hear in a minute from Brittany, countless excellent specialists have never heard of this condition. It’s rare but it’s real, and there are badass mamas all over the world taking it on and fighting for the health, and sometimes life, of their kiddos. They deserve a platform to share their struggles and successes. Without further ado, meet Brittany!

First of all, introduce yourself!

My name is Brittany, and I live in New Jersey with my husband and my two sons. Ryan is two and Zack is 4 months old. Ryan is our son with FPIES. Currently Zack hasn’t displayed any allergy related symptoms, which we are so so thankful for! I am a HR professional and my husband is in sales.

image2
Meet today’s handsome star, Ryan!

How and when was your little one diagnosed with FPIES? What was that process? 

Ryan presented symptoms of we thought was just a dairy allergy from birth. He threw up several times after being born but they attributed it to swallowing too much fluid. He cried nonstop, could not gain weight, never slept more than 2 hours and in general always looked uncomfortable and was impossible to soothe. By the time he was 6 weeks old he was placed under GI care where they found blood in his stool and he was diagnosed as dairy/soy intolerant.

…”His GI told me ‘no one is allergic to rice.'”

At four months it was recommended to begin a rice cereal to help with his reflux this resulted in his first true FPIES reaction, although his GI at the time told me “no one is allergic to rice”. We never gave it to him again. From 6- 10 months we slowly introduced foods and thankfully were able to establish quite a few “safe” foods. At 10 months he ate an English muffin with soy in it and reacted pretty severely. We were sent to the ER for fluids and advised to find another allergist. We will always be thankful for his first allergist who truly listened to all of his symptoms and immediately said “your son has FPIES”. She provided us tools and resources to help keep him healthy and safe.

An 11 day hospital stay

Shortly after turning 1 he was exposed to oatmeal, which resulted in an 11-day hospital stay where doctors struggled to find a treatment plan to get his symptoms under control. At one point we were released and readmitted within 10 hours. That hospital stay was a real low point, he had lost over 5 pounds, lost all of his “safes”, and was on stomach rest drinking only hypoallergenic formula. Ryan was withdrawn, lethargic, and being subjected to many unnecessary medical interventions.  This prompted us to seek any and all treatments we could. We have been with Mt. Sinai Allergy Institute ever since. Under their care, Ryan has made great strides. He has gained 9 pounds, has a pretty large amount of food he can eat, and we have managed his reactions at home. Our next step will be doing in-patient food challenges as he gets closer to age 3. Looking back I regret not advocating more when he was an infant but I am so thankful for the team of specialist and the guidance they have provided us. 

What are his triggers?

Ryan presents like a very “traditional” FPIES kid with his triggers being the most common- dairy, soy, oats, and rice. This year our focus has been trying to get him back to baseline so his diet is very limited. Just this month we have tried some new foods in hopes of increasing his diet!

What does a reaction look like for your little one?

Ryan reacts chronically to dairy even trace amounts, which is why we saw ongoing GI issues even after several formula changes. He is acute to soy, rice, and oats meaning 3-4 hours after consumption he begins to vomit profusely, his temperature will drop and he becomes extremely lethargic, which usually lands us in the ER for fluids. After a reaction he is placed on stomach rest, where we use hypoallergenic formula as his only source of food until he can handle food again.image4

What has been the hardest part of coping with FPIES? 

For me, the mental exhaustion of managing a toddler with a

chronic allergy is the hardest part.

It’s the day to day energy of ensuring he is safe but wanting to provide him normal experiences. It’s the constant worries of, is he safe? Is there food where we are going? What should I pack? Do we have two epi pens at all times? Does he look strange today? What if there is a crumb on the floor of school? Is he gaining weight? Why isn’t he talking yet? What hospital would we go to if we need to? Should we get that vaccine? Can he take that medicine? Is there long term effects of the medicine he was on? Will he grow out of this? There is always something running through my head about how to continue to keep him safe and thriving.

I also carry some guilt about how long it took us to get the right doctors and treatment plan in place. The first year of motherhood for me was so hard. Ryan was in so much pain, I was so stressed, it was just a hard time. It wasn’t until the birth of my second child I realize how much we missed out on and how much joy bringing home a new baby should be.

My goal every day is to keep my son healthy.

The silver lining for me has been I truly do not sweat the small stuff of parenting. Other than the food he consumes, I am very easy going. I know he will hit every milestone when he is ready and eventually not demand to wear rain boots every single day! Even on hard days I am so grateful he is healthy and alive. We will never take having a healthy child for granted. FPIES has also made Ryan a very healthy eater, because we can’t just order him a happy meal or throw him a slice of pizza (no judgment). He eats his veggies, fruit, and protein like a champ!

How does FPIES affect your life daily? 

For us, it is a priority Ryan is safe in our home. So we keep foods he can eat readily available, label everything, and make sure anyone in our home understands this. Anywhere we go we have to pack snacks and meals for him to eat. For childcare, there are very few people I trust to leave him with and even fewer I will allow to feed him. We are constantly reading and rereading food labels to ensure his food choices remain safe. It’s an extra step or five to get to be able to do the “normal” family things.

It all goes back to that mental load, it’s always there. 

What have you learned about yourself and your little one in this journey? 

Anyone who knows Ryan knows he is a real spitfire. He has always has always been fearless and refuses to take no for an answer- this has served him well for the battle of FPIES. Ryan is just so resilient. He has been through a lot more than a typical two year old and he just keep pushing forward. There were times I feared he would change throughout some of the tests he’s has to endure but he bounces back to the fearless troublemaker he was before. Ryan has had about 45 doctor appointments in just two years and a lengthy hospital stay and he still walks into every appointment like it’s no big deal- he’s so brave!

image3
The fearless troublemaker himself!

What I have learned throughout this experience is to never be afraid to advocate for myself or my kids. If I disagree with a course of treatment or a diagnosis, I speak up. Not all doctors are the right doctors for your family needs.

I trust my judgment and my intuition more than ever. 

What do you wish everyone knew about FPIES?

I wish people understood how serious food allergies are and the impact that have on families trying to navigate them. A reaction is not like a common cold he will just bounce back from. It takes months to get Ryan back to his “baseline” after even a mild reaction. The news stories of children dying because of exposure to an allergen is not just a news story to our family, it’s our everyday reality. When you give your kid a cheese stick while they are playing next to mine or bring a food into our home that he is allergic to, while your intentions are harmless, you are putting my child’s well being seriously at risk. I am not a helicopter parent by choice, so when I decline an invitation, or don’t allow a sleepover or drop off play date it’s not because I want to but because that’s the easiest way to keep him healthy right now.

There are a few people in our lives that always do their best to make sure Ryan is included and safe in their homes or during social events and it means to much to us.

I hope you were as moved by Brittany’s story as I was. I know if you’re a food allergy mama or papa, you know exactly what she means by “I’m not a helicopter parent by choice”. We didn’t sign up for this, but we do what we have to for our kiddos, don’t we?

I look forward to sharing more FPIES mama stories with you in the upcoming months. Stay warm and healthy, friends!

So what the eff is FPIES?

To follow the blog, subscribe using the link in the right, and follow us on instagram: @chunkythighsandfpies 

 

Hi friends. I had a post all ready to go for today, all about second pregnancies and how different the whole “growing a human” situation feels this time around. Spoiler alert: the weight gain is brutal, time flies by, baby kicks are still marvelous. To summarize: first vs second

I’ve had pregnancy on the brain. But, in the last 48 hours, I’ve heard from four new mamas who are just finding themselves on the FPIES journey, and it doesn’t feel like the right time to stray into other topics! So, back to FPIES we go. I hope if you’re new to this diagnosis you find this helpful. It’s a bit of a conglomeration of what I learned from other mamas on this journey, google searching, and our care team. If I say things you disagree with, please, by all means, comment below or message me! Reminder, I’m a novice FPIES mama! I’d love to hear what you’ve learned along the way.

So what the eff is FPIES?

Perhaps the trickiest thing about this diagnosis is the confusion and lack of research surrounding it. Just about everything, from reaction times and symptoms to trigger foods to differ from child to child. So your best bet is going to be figuring out what FPIES is for your kid; it will not be the same as FPIES is for Lincoln. This makes it really overwhelming! Here’s what is common ground, as far as I’m aware.

FPIES is an allergic reaction that takes place almost exclusively in the small and large intestine, which is why symptoms are largely gastrointestinal. It is an allergy, but it is not a “traditional” immunoglobulin (IgE) allergy, so anaphylactic symptoms like hives, throat swelling, and shortness of breath are not part of an FPIES reaction. It is still considered a true allergy, so don’t let anyone tell you otherwise.

As explained by kidswithfoodallergies.org, “FPIES is a non-IgE mediated immune reaction in the gastrointestinal system to one or more specific foods, commonly characterized by profuse vomiting and diarrhea. FPIES is presumed to be cell mediated.” Breaking it down, an FPIES reaction is when someone, almost always an infant or a young child, reacts 2-8 hours after ingestion of a food with a very strong gastrointestinal reaction. Often, it begins with vomiting and moves to diarrhea. Depending on the severity of the reaction, the vomiting may quickly become profuse and lead to extreme lethargy, paleness, loss of consciousness, and/or shock. It is at this point that many families find themselves in the Emergency Room, diagnosed with an unusual stomach bug and unable to pinpoint the trigger until multiple emergencies have occurred.

There are two types of FPIES reactions: chronic and acute. Acute reactions are as described above, where several hours after ingestion a child begins to vomit profusely, possibly leading to shock if untreated. In chronic reactions, a child reacts over a longer period of time. This may include inability to gain or maintain weight, long term issues with diarrhea, diaper rash that never resolves, etc. Basically, signs of gastrointestinal distress but without the immediacy of profuse vomiting.

One of the many challenging things about FPIES it that a child may react to just about anything. I’ve now heard of families with FPIES to cinnamon, citric acid, baking powder, turkey, barley, you name it. Some of the most common triggers are rice, oats, dairy, soy, and eggs. Lincoln has reacted to rice directly, and dairy/soy/eggs via breastmilk, so I assure you we’re not trying oats any time soon!

trigger foods
Source: Epidemiology of food protein-induced enterocolitis syndrome.
Mehr S, Frith K, Campbell DE – Curr Opin Allergy Clin Immunol (2014)

Knowing that FPIES reactions can occur to any food protein leads FPIES families to be incredibly cautious with introducing new foods. If you’re just beginning this journey, you’ve probably very rapidly become consumed with food trials! My understanding is that the best way to trial foods depends on your child’s history of reactions. There’s often a clear pattern, such as reacting every 3rd exposure, or first, or upwards of 7. Lincoln seems to be a first exposure reactor at this point, so we often only trial new foods for 5-7 days. Were he to eventually react much later, we’d extend the length of trials! We start with about 1/4 of a teaspoon and double the quantity daily, assuming there is no reaction. For foods I’m more nervous about, such as our almost-over almond trial, I start with even less, increase more slowly, and trial longer.

Perhaps the most important piece of wisdom I’ve gotten about food trials is the importance is keeping careful records. I simply use a notebook, but in the facebook group “FPIES (Food Protein Intolerance Enterocolitis Syndrome)” I’ve seen some great examples of templates if you prefer a fancier system! There are some great examples at this site as well:  http://fpiesfoundation.blogspot.com/2015/06/fpies-tools-food-journals-for-food.html

img_7213
One of my least favorite parts of FPIES: trying to discern what is a food reaction vs. what’s just your everyday, babies get sick and fuss, moment. 

A few other things I’ve learned, that seem to be commonly accepted in the medical community and the FPIES mama community:

-Most, though not all, children outgrow FPIES. Ages range from as young as 18 months to well into school years, but nearly all FPIES kiddos outgrow all of their triggers. There are more complicated cases where FPIES triggers turn into IgE allergies down the road, but these are few and far between.

-Treatment varies from child to child, but avoiding trigger foods, both known and suspected, is the number one necessary step to take. From there, your child may benefit from a Zofran prescription (Lincoln does!), an epi-pen (if prone to going quickly into shock), and/or a trip to the ER for IV fluids when reacting. Regardless of what treatment looks like for your child, a letter explaining the condition and treatment is crucial. Have one prepared by your allergist or pediatrician, or prepare yourself if needed. Here’s a great template: http://fpiesfoundation.org/wp-content/uploads/2012/07/ERLetter.pdf

-FPIES is really freaking scary. Our pediatrician and allergist both made comments to the effect of how sorry they were to give us this diagnosis. Every mama I’ve met that’s outgrown FPIES in her family has been moved to tears in recounting the story, because those memories are painful to relive. It’s not an IgE allergy but just because anaphylaxis isn’t going to happen doesn’t mean it’s not dangerous, terrifying, and in some cases, life threatening. Make sure to advocate for your kiddo and use every resource and support system you can to keep that baby safe. FPIES mama-ing is not for the faint of heart, but neither was building a family and you’ve managed that!

We saw our allergist today for a follow-up and to get some guidance on where to go next. He is one of the leading FPIES doctors in our area, and comes highly recommended by several FPIES mamas, my pediatrician, and the international FPIES community. And yet… throughout the appointment I heard over and over “this may change in a month as new information comes out.” “Guidelines are continuously changing.” “You will be able to find a doctor who will answer that both ways.” “There’s no clear answer to that.”

I appreciate his honesty immensely, but it’s terrifying to go to the most expert source available and realize he doesn’t know all the answers either. We’re all just winging it and trying to figure out how to keep FPIES babies safe, appropriately nourished, growing steadily and more or less pain free.

We’ve got this. You’ve got this.

 

 

 

 

What day is it? And in what mo-o-onth…

*Today’s post is brought to you by Lifehouse, the Guilty Pleasures playlist on Spotify (a true gem), and a decaf white mocha from Caribou. And also, my coffee-hating husband, who regifted me his Caribou gift card. 

On Tuesdays, it’s blog day! My wonderful mother watches baby Lincoln and I have a glorious 3+ hours to work out, grocery shop sans Fuss-ter, and of course, babble to you about a day in the life of a family managing FPIES. My week has started to revolve around these sacred Tuesdays.

The thing is, when balancing food allergies, a baby, and a pregnancy, time can become all consuming. The actual day and date may be irrelevant in this employer-less life, but everything else in my life revolves around numbers. I’m 24 weeks 6 days pregnant. Lincoln is 8 days shy of 10 months. Our next allergist appointment appointment is in 6 days. We are 3 days into an almond trial that we’ll continue for 10 days. He ate his third serving approximately two hours ago (and the clock is sure ticking). We’re on day 13 of apple, so I’m still monitoring him closely although it’s an official pass. My baby is due in 105 days. (Excuse me while I go breathe into a paper bag for the next 22 minutes.)

I think about time all. the. time. And it’s become really, really easy to completely lose the present as I obsess over the past and future. Note: If you don’t want to read my cliche, sentimental pregnancy feelings, close this tab now and resume your scrolling. Consider yourself warned.

Food allergies and food obsession have been going hand in hand around here. Obsessing over days into a trial, days since it started, days until the next scary trial… it’s so easy to forget to be in this moment, in these months, in this first year of Lincoln’s life at all. Somehow ten months have already flown by, and life with an only child is rapidly coming to an end. These days are such a precious gift, to focus on my one and only child, nearly 24/7. It’s my goal for the next 105 days, give or take, to live them and to be in them. To take more pictures of the mundane lunch dates we have over broccoli, quinoa, and freeze dried pears. To savor the brief pre-nap cuddles he’ll allow, and to enjoy the monotony of winter in Minnesota lives. It’s not glamorous and it’s not exciting, but it’s so precious. And also, chaos (#2under2) is just around the corner.

We had one of those moments just this week. He’s sick with some combination of a cold and teething, and he wasn’t sleeping well. He’d been up from about 12-1:30, and again from about 4:45am on. At about 5:30am I decided to put a pile of blankets on the floor, prop him up, and have a mini sleepover in his room. We’ve never, ever co-slept, so this decision was a pretty big deal. Also, the level of desperation that leads to a 25-week pregnant woman actively deciding to sleep on the wood floor is magnificent. (Before you go on the offensive, please know that my husband does the overnight feeding of Lincoln at least 6 out of the 7 days of a week. I offered to take just this one rough night. I’m usually happily asleep in the basement between my bihourly pee breaks.) 

Glorious moments.

Anyway, I laid Lincoln down next to me, and wow have I been missing out with this hard and fast ban on co-sleeping! We slept for a blissful two hours straight, albeit to the tune of his stuffy mouth-breathing-with-a-pacifier. That part was lovely. But the most beautiful moment was when he woke up (at 8 am! Record breaking!) and immediately opened his eyes, shocked to see my face next to his. FRIENDS. That face. He gave me the biggest smile he could muster and then just grabbed my face and fell into it. We’ll call it his first attempt at a hug. These are the moments to savor and the ones I’m already missing, because time is a thief. Don’t let her take more than she absolutely must.

I hope food allergies and the counting of all things time aren’t stealing your joy or your little one’s childhood, friends. It’s so easy to let happen and I keep finding it happening to us over here. Enjoy your moments today. If you’re in the midst of FPIES, enjoy every reaction free day you have, and try and relax ever so slightly about timing the next 87 trials. Our babies will grow up, and grow out of FPIES, and we won’t get to redo this part. So let’s try and be here for it. Believe me, I’m a hypocrite and I know just how hard that is to do.

That’s the end of my sentiment for today. Someday, when I’m not pregnant, perhaps my posts will become slightly more fact filled and slightly less hormonal. Perhaps.

 

Ask Me Anything…FPIES edition.

This week I’m answering some of the questions I got on our instagram account (go follow us on instagram right now! @chunkythighsandfpies … I’ll wait…)

Thank you for your participation and input! This blog is evolving as our journey with FPIES continues, and I want it to be supportive to families who are going through similar struggles. It was really helpful to hear what is interesting to you and what I could share that might help you along the way. Keep the questions coming, pretty please!

Q: When was Lincoln diagnosed and how?

Lincoln was diagnosed just after six months (on October 8th, 2018 to be exact). On Saturday, he had an acute vomit to shock reaction to peanut butter and rice cereal that landed us in the ER. By Monday, we were in with a pediatric allergist and getting an official diagnosis. However, the whole reason we landed at that allergist was thanks to posting in a facebook group (Dairy Free Breastfeeding) and hearing over and over “sounds just like FPIES.” To read the whole saga, go read the post: https://chunkythighsandfpies.home.blog/2018/12/09/not-so-nice-to-meet-you-fpies/

Q: Who is on your care team in Minnesota? 

So far our team is pretty small. We see the pediatricians (namely Dr. Gretchen Rierson) at Southdale Pediatrics for our regular well visits and care, and can’t sing her praises loudly enough. We see Dr. Allan Stillerman at Allergy and Asthma Specialists for all things FPIES for now. He has spent so much time with us and has answered every question I come up with. He’s honest about what he does and doesn’t know, and is patient with our fussy baby. I know some people find him a little off-putting at first but once you get past that it’s clear he cares very much about your kid, and about understanding FPIES. His nurse, Theresa, is a saint, and has gone above and beyond to help us get Neocate Syneo covered by insurance despite obstacle after obstacle. We did see Dr. Elissa Downs for pediatric gastroenterology- but it was prior to any acute reactions so we weren’t thinking FPIES. We haven’t yet seen a dietician, though my fellow FPIES mamas in Minnesota say Ann Westerhaus is the best!

Q: How likely is it that your next baby has FPIES?

If you find a concrete answer to this please tell me… In online support groups it looks like the odds of having a subsequent baby with FPIES are about 50/50. Maybe slightly higher. Dr. Stillerman says he doesn’t have any patients with multiple FPIES kids in the family. A friend’s doctor said he’s never seen a case where a firstborn had it and the next one DIDN’T! So, your guess (and research!) is as good as mine.

Q: What are your baby’s trigger foods? 

Lincoln’s current known food log is:

Acute Reactions: Peanut Butter, Rice, Lamb

Chronic Reactions (through breastmilk): Dairy, Soy, Eggs

Safe Foods, in order of passing: Pear, Pumpkin, Quinoa, Broccoli, Watermelon, Beets, Apples

Q: Talk to me about trials…how long do you trial, how much per day, how do you pick foods?

This is probably the first or second question I’ve asked every FPIES mama or doctor I’ve seen. I so, so badly want a concrete answer and it just doesn’t exist. It helps to look at your child’s history of reactions—if they have reacted, for example, on the 10th day to a food, you’re probably going to need at least two week trials. If your baby has always reacted on the first or second exposure, you can maybe get away with only five day trials.

Our protocol is, give or take, 8 days:

Day 1: 1/2 Tsp

Day 2: 1 Tsp

Day 3: 1 Tbsp

Day 4: 2 Tbsp

Day 5: full serving

Day 6-7: break

Day 8 and on: full serving

I definitely scale back for high allergen foods. We’re starting almonds now (or, as soon as I stop finding reasons to postpone) and I’m going to start with 1/8 tsp and work our way up. We started lamb with 1/4 teaspoon and while Lincoln did have an acute reaction on day 1, it was MUCH milder than the peanut butter and rice reaction. We hope that starting smaller will ease the severity of acute reactions.

Not everyone finds the need to build in a break. Lincoln seems to have reacted to rice cereal after several days off, so this gives me confidence we’re accounting for that possibility!

For more great info on food trials, read: http://cradlerockingmama.com/the-best-way-to-approach-food-trials-recap/

Q: My son was recently diagnosed. Any tips for a mama that is new to FPIES? 

If you’ve gotten this diagnosis you probably already know this all too well, but my number one piece of advice is to remember… you are your child’s best, and sometimes only, advocate. Fight for the care you need. Go to the doctors with a plan and tell them what you need them to do/test/prescribe/refer—FPIES is not always well understood and there’s definitely going to be times where you know better than your care provider what you need (but not in the anti-vax kinda way… vaccinate that baby!)

Next—get a prescription for Zofran and print out an ER letter from the I-FPIES website: https://www.fpies.org/wp-content/uploads/2018/08/IFPIES-ER-Letter-2018.pdf

Having these two pieces in hand has increased my confidence so much.

Third—go slooooooow. With food trials, with taking your little one to places that feel scary and food-filled, with seeing every doctor under the sun. It’s ok to not be ready to face all of FPIES at once and it’s okay to not want to do a whole bunch of scary trials in the first couple months. This diagnosis is a beast, and there’s no rush to find all the triggers or have all the answers. Take your time. Trial things longer than you think you need to, stay home as often as you want, and talk about it as little or as much as is helpful. Clearly I tend towards the latter.

Which brings me to my final thought for today, FPIES and food allergy mamas and friends of all types… processing this experience through this blog has been a game changer for me. Knowing we aren’t alone, knowing we’ve helped one or two people get a diagnosis, or find a formula, or just brought a smile to anyone’s face—it makes this so much easier. Thank you for walking this journey with us, and sparing my husband from hearing my thoughts on repeat 97 times a night between midnight and 4am. (Though, he’d like me to add, he still does.)

Remember to follow us on Instagram @chunkythighsandfpies or subscribe by email here on WordPress to never miss a post!

Breastfeeding an FPIES baby

First of all, thank you so much for stopping by! To never miss a post, click on FOLLOW to sign up for email notifications from Word Press, and follow along on Instagram for additional FPIES content and updates! @chunkythighsandfpies

 

Spoiler alert: our last breastfeeding session

Within moments of Lincoln Mac’s birth, midwives and nurses were encouraging me to have him attempt his first breastfeeding latch. There’s no more paramount task to the first days of a new infant’s life than helping ensure they will be well fed and begin to gain weight. It turns out this totally basic, totally natural necessity is not always instinctual for either mama or babe.

We faced some minor challenges with breastfeeding early on, from milk blisters to latch issues to a (now revised) lip tie. But within a few weeks Lincoln was a pro, and gaining weight as such. However, he became increasingly fussy as time went on. I’ve said it before and I’ll say it again… and again… I’m firmly convinced 95% of colic is actually food intolerances. The more dairy, soy, and eggs I ate, the more “colicky” Lincoln seemed to get! His skin broke out, his moods were volatile, his sleep was choppy and his body was tense. ALL. THE. TIME. Doctors called it colic, but as I started cutting out the most likely allergens from my own diet, it was clear his tummy was irritated to the max. I started by cutting dairy and soy, the most common triggers for a breastfed baby, and within days we had a happier child. Removing eggs, tomatoes, and citrus seemed to temporarily complete the puzzle and my limited diet was working wonders for our boy, and therefore, our  own sanity.

Months 1-5 this worked really well. The diet was tough but easily worth it for such a happy boy! (Can I just give a shoutout to all you mamas I know who are on insane TEDs (total elimination diets)?! Giving up just these five things was SO HARD and some of you are on diets that are limited to eating ONLY five things! You are superheroes, truly, and your babies are so, so fortunate. If that is what works and is best for your family, you have all of my respect and admiration, and I wish you the very very best in this crazy tough journey.)

Buuuuuuut, as is always the case with parenting thus far, no phase lasts long… enter August 28th, day of the positive pregnancy test(s). Just three days before Lincoln turned five months old, I woke up feeling incredibly exhausted. The kind of exhaustion I hadn’t felt in, well, five months minus three days. I knew before Chris even left for work I was going to take a test, so as soon as he was out the door I tested. (How convenient that those pregnancy tests from Round 1 hadn’t even expired yet.)  And then I hauled Lincoln to CVS, bought every brand they had, and tested, and re-tested, and re-tested.

img_5447

 

Every. Single. Brand. Two lines, a plus sign, the word “pregnant”… it was glaringly obvious no matter which I consulted! Round two was underway.

I’ll save the emotional roller coaster that is being preggers with a five month old for a different post. What relates here and now is the fact that my supply disappeared nearly overnight. At first I panicked. “Breast is best!” mantras rang in my ears and the thought of what might happen to Lincoln without my breastmilk was, and sometimes still is, devastating. His IQ would drop. We’d never bond. He’d develop allergies (oh wait, we had those going strong…) and probably Scarlet Fever. But my body didn’t give me much of a choice in the matter. I power pumped, drank all the blue gatorade, ate all the oatmeal, bought supplements, power pumped again, and so on and so forth… ounces kept disappearing. Thankfully we’d already been supplementing with Neocate Syneo and we were able to continue to transition to that nearly full-time in a matter of weeks. For about three weeks I kept up the pumping like a madwoman, in the hopes my supply would return in full.

img_5964
ALLLLLLL that work for 120 milliliters in a day…about enough for one small bottle for Linker Stinker.

It turns out, there is NO HUNGER IN THE WORLD like the hunger of a pregnant breastfeeding mama. And to add I couldn’t satisfy it with just about any dairy, carbs (because what doesn’t have soy?!), or eggs? It was tough, and it wasn’t granting me a breastfed baby. Despite dedicating many of my hours, and all of my mental focus, I was only getting about four ounces a day for my babe. At that point, it became pretty clear the insanity wasn’t worth it. We were going to have a fully formula fed baby from 6 months on.

And here’s the thing, folks… Lincoln was happier almost instantly. Now that we’ve discovered FPIES, I’m sure I was still ingesting his trigger foods. Rice and peanuts, absolutely, were staples in my diet. But who knows what else, as we haven’t yet discovered all the culprits. And how many months, and how much gut pain, would it have required him to suffer through for me to find the diet that worked? Once he was getting only Neocate, we could easily pinpoint when a new food caused a reaction. His skin was clear, his body loosened up, and his smiles came far more often.

So I guess what I’m trying to say is, the mama guilt over breastfeeding is insane. It might not be right for you or your baby. I’m so thankful we made it to six months with some breastmilk but I also don’t know that I would kill myself to do it again, seeing how much happier Lincoln is on Neocate Syneo. Breastfeeding wasn’t right for us at all costs; the cliche fed is best is absolutely true. If breastfeeding isn’t right for your allergy baby, if your body doesn’t agree with the insane diet it’s requiring of you, if you’re newly pregnant and not making enough milk. If your hormones can’t handle breastfeeding. If for physical reasons you can’t feed directly and you’re exclusively pumping all the time and it’s making you crazy. If you’ve tried out every method under the sun. Leave the online groups that are telling you it’s worth it at all costs. It’s not. Your baby needs a happy mama! Do what is best for you and your baby and check the shame, guilt, and overwhelming societal pressure at your new mama class door. Feed and love on your baby, and give yourself grace however you do so.