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5 Ways to Deal with Food Boundaries, Kids, and Relatives

December 2, 2014 by 2 Comments
by Carrie Saum
This post was made possible by our sister site, Our Stable Table.

Allergic reaction

My son, E, has a rare, severe food allergy called FPIES. (I’ve written about it here). Holidays and family gatherings are chock full of well-meaning parents and aunts and uncles and cousins who want to help us keep E safe, but just don’t always know how. Or remember how.

Last Fourth of July, Echo was a busy little guy. He explores and inspects everything. No speck of dust goes unnoticed by him. At the time, we struggled to keep him safe while he picked up every crumb from the floor. It terrified Lance and me. During this time, we visited my family in another state. We prepped them, lectured them, and conducted a family meeting within the first ten minutes of arrival. E needed us to help him be safe. Everyone agreed E’s safety was important and they would help.

My brother was watching TV in the living room a few minutes after our family meeting. He put a can of root beer down on the side table, not thinking about tiny baby hands that find everything they’re not supposed to have in mere nanoseconds. E raced over to the shiny can, grabbed it and pulled it down immediately, dousing himself in sticky caramel colored corn syrup. I freaked out. My brother felt terrible. We immediately hosed E down and scrubbed the soda off of him from head to toe. We held our breath for the next several hours to see if he would react to the corn syrup. (He didn’t.)

In spite of everyone’s best intentions and total agreement to make the holiday and visit safe for E, he still managed to find the chinks in our armor. He wasn’t being naughty, and my brother wasn’t being negligent. Its just part of navigating life and holidays with kids who require extra care.

In our case, this is really important and for some children, it is a life and death concern. But it doesn’t matter if your child has a full-blown allergy, slight sensitivity, or you just don’t want them eating certain things. This is your kid. Your boundaries are important, especially when you are making choices to keep your child safe or healthy.

Here are a few ways to bring a little sanity during to your holiday season, and navigate gatherings when your kid has a restricted diet or you’re just not ready for them to have certain foods introduced to their systems just yet.

1. Prepare. E-mail or text every friend and family member attending the holiday gathering a few days in advance. In clear and concise terms, share what your child needs to enjoy a safe holiday. For example, “Hi Loved Ones! Just a quick reminder that Buddy is allergic to Red Dye # 5, and throws up when he eats foods containing this dye. PLEASE DON’T FEED HIM ANYTHING AT ALL without my permission first, otherwise we could end up celebrating in the Emergency Room instead of around the table with you. If you want to know more about his allergy, please read (link), or give me a call. Thank you so much for helping us keep our guy safe! Also, it would be a huge help to us if you would be willing to keep an eye out for stray food ”.

2. Enlist help. When getting together with friends or family that may not be familiar with the guidelines you have for food when it comes to your child(ren), have a family meeting early in the gathering and ask them to be guardian angels. My eight year old niece, Sav, saw E reaching for the soda and alerted us to what was happening the second before it happened. She gave us a half-second head start, which is all we needed to ensure E didn’t get his fingers in his mouth. She appointed herself as his guardian angel and for the rest of the holiday weekend, she alerted us when he found a stray french fry and gently took it from him while explaining to him how it could hurt him if he ate it. Sav felt important and E had the added benefit of another person watching out for him. Plus, he followed her around like she hung the moon and they formed a very special bond.

3. Babywear. Wear your baby or toddler as much as possible. The easiest way to keep your kiddo safe is to keep them close. If they like being worn and are small enough, wear them. Trade off with your partner, or another trusted family member. I know it’s not ideal and many littles won’t love this for the duration. But even if it’s just for 30 minutes, it’s 30 minutes you don’t have to worry about their safety. It reduces your anxiety, which will reduce theirs in turn. You can also take that opportunity to scope out gathering for potential problems.

4. Be firm. Don’t be afraid of hurting people’s feelings. My sweet mom, (who would never intentionally do ANYTHING to harm her grandson), once gave E a coffee can to play with. She forgot to wash it out. He had the lid off and was shoulder deep in Folgers remnants before I could even process what he had. I instantly became upset with her, and although I regret the level of reaction now, I don’t regret reacting. I apologized to her later for my tone, but not for reacting. She can’t be cavalier with food, and although I never believed that was her intention, I was ready to stay somewhere else if it meant my son would be safe. I told her this with as much kindness and clarity as possible. I know it hurt her feelings, and it made me sad knowing I hurt her. But her feelings were secondary to my son’s health. Even people who love our kiddos don’t always connect with the vigilance required for FPIES and other allergies and health concerns. Although I never WANT to hurt anyone’s feelings, and typically find a kind way to state (or restate) boundaries, sometimes it happens and I try to work it out with the offended party pretty quickly.

5. Party later. Celebrate in your own way. When all else fails, stay vigilant during your festivities. Then crack open a bottle of wine or martini shaker when you get home after the kids are asleep. If you don’t drink, it’s no problem! You can still mix up a relaxing mocktail.   My favorite? Kombucha Christmas Cosmo. Don’t worry, you don’t have to come up with a recipe on your own, you can find this easy recipe and more at OurStableTable.com.

Carri Saum Bio Pic 2Carrie Saum brings a passion for wellness and over a decade of experience in health care to her clients. A certified Ayurvedic Wellness Counselor (AWC) from the Kerala Ayurveda Academy, she empowers individuals and families to achieve health and balance through time-honored practices. Carrie has extensive first-hand experience in vast array of medical fields. She has a background in paramedic medicine and spent ten years serving in the non-profit sector managing organizations, programs, and orchestrating resources to meet the health needs of people across the United States and abroad in countries such as Guatemala, Mexico, Kenya, and Zambia. She has coached countless clients on topics such as nutrition, weight loss, and stress management. In addition to her work as a wellness counselor, Carrie is a passionate “foodie” and blogs regularly about healthy cooking and nourishing the whole family with The Leaky Boob’s sister site  OurStableTable.com and Facebook page. She lives in Portland, Oregon with her husband and young son.
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What I Want You To Know About Why My Son Can’t Eat- FPIES

October 14, 2014 by 8 Comments

By Carrie Saum Dickson

This guest post shares the feeding journey of 16 month of Echo as told by his mother. A breastfeeding, pumping, allergy story of a little boy with a bright spirit and a mom and dad with steadfast hearts and commitment. Their story is beautiful, inspiring, challenging, humbling, educational, and so very raw. Be sure to go on to read part 1 and part 2 of their story as well.

Carrie and Echo FPIES

Shortly after birth, my sweet little boy, Echo, had a stroke. We struggled to breastfeed and I ended up exclusively pumping for him. But that was hardly the extend of his feeding difficulties. You see, my son can’t eat. For a while there he couldn’t eat anything, now he has a few safe foods. But he still really can’t eat. He’s 16 months old.

My son’s name is Echo and he has FPIES.

What is FPIES? According to The FPIES Foundation:

Food Protein-Induced Enterocolitis Syndrome (FPIES) is a type of food allergy affecting the gastrointestinal (GI) tract.  Classic symptoms of FPIES include profound vomiting, diarrhea, and dehydration. These symptoms can lead to severe lethargy, change in body temperature and blood pressure. Unlike typical food allergies, symptoms may not be immediate and do not show up on standard allergy tests.  Furthermore, the negative allergy evaluation may delay the diagnosis and take the focus off the causative food.  Nonetheless, FPIES can present with severe symptoms following ingestion of a food trigger.

I will tell you this: I’m a fierce mama bear. I will not let my son be defined by a stroke or FPIES or anything else over which he has no control.  He is a strong, charismatic, people-loving, joyful being. He walks confidently into a room full of strangers, waving and smiling as though the world has been expecting him all along, and is ready to receive him. He is so much more than a diagnosis or cluster of symptoms. Echo is pure light. We do our best to make the world safe for him. Sometimes we fail. With every trip we’ve taken and guest we’ve hosted, Echo has experienced acute reactions each time despite our vigilance. But we walk a very fine line between taking calculated chances and raising Echo in a bubble.

This. This new normal. Echo, at 16 months old, has two handfuls of safe foods and resists eating, all while laughing and giving kisses and shaking his head “no”.  Me? I’ve made peace with the pump. Peace with my life in this moment, with the ever-changing new normal. My son has one constant and safe food source that he never turns down (mommy’s milk!), and it brings me great peace of mind. We’ve learned to keep participating in life, even when my mom innocently asks if there’s a mute button for the pump motor, or when Echo enthusiastically licks the trash can and we know we will be up all night.  I’ve learned I can do anything for ONE MORE DAY, which in this case adds up to almost 500 days. Especially if it’s for my son. I’m grateful and proud that my body still impossibly provides most of what Echo needs. The dark clouds of survival lift and retreat when I remember this: I am lucky to be his.

Echo FPIES I am the voice

Here are three things I want you to know from my experience:

  1. FPIES scary and effing HARD. Have you ever tried to keep a toddler from eating food? It’s impossible. And sad. And no matter how careful we are, Echo often manages to find something and then we hold our breath until we know he’s okay. Leaving the house is stressful, play dates are almost impossible, and no space (except ours) is safe for him. Leaving him with a sitter is always a test of faith and competence. Finances are continuously tight. As it turns out, shipping donor milk, taking the max dose of Domperidone, (which insurance does not cover), and keeping up with medical bills all require quite a bit of cash. Also, it really takes a toll on a marriage, even a solid, seasoned one. Many families don’t make it through these rigorous trials with chronically ill children intact, even with proper support. Try not to judge us when we all seem a little fragile.
  2. FPIES is exhausting. When Echo experiences a reaction, he is in continuous pain, nobody sleeps for two days, and we have to take extra care with him. It requires total gut rest and a diet of only precious breast milk for days. I hate that he suffers so much, and it takes us all about a week to fully recover. We get little sleep and even less respite. We are hyper-vigilant everywhere we go because food is, well…everywhere. So, if you see Lance or me getting hyped-up when Echo gets food on his finger or there are crumbs on the floor or freak out when you pull out the goldfish crackers, please don’t think we’re crazy. And please don’t take offense when we start cleaning up after your kid or respectfully wiping their hands and faces before they play with Echo.
  3. FPIES is a real thing, and it’s rare. I’m part of online support groups where moms have been diagnosed with Munchausen Syndrome when they take their very sick children into the ER after an especially bad reaction, and some parents have had their children taken away because the doctors don’t even know what FPIES is or believe the parents when they explain it. (The parents eventually get their kids back when the doctors and social workers see that the reactions happen no matter whose care the child is under.) Although I refuse to dwell in fear of this happening, it is still something that happens. And the only way it stops happening is if you guys know about FPIES.

 

For more information about FPIES, visit these websites:
The FPIES Foundation
http://fpiesfoundation.org/fpies-medical-literature

From the American Journal of Pediatrics: The Mother of All Food Allergies
http://www.jpeds.com/article/S0022-3476%2803%2900273-7/fulltext

Filed Under: Article, baby-led weaning, Breastfeeding, breastfeeding difficulties, breastfeeding stories, breastfeeding support, breastmilk pumping, breastpump, child led weaning, Featured, guest posts, Leakie to Leakie Tagged With: , , , , , ,

Feeding Echo, Part 2- Solids, Vomit, More Pumping, Donor Milk, and FPIES

October 14, 2014 by 1 Comment

By Carrie Saum Dickson

This guest post shares the feeding journey of 16 month of Echo as told by his mother. A breastfeeding, pumping, allergy story of a little boy with a bright spirit and a mom and dad with steadfast hearts and commitment. Their story is beautiful, inspiring, challenging, humbling, educational, and so very raw. Be sure to go on to read part 1 and part 3 of their story as well.

Echo eating solids

We began introducing solids when Echo turned six months old. My career focuses on healing the body and restoring vitality through nutrition, and I was excited to begin this work with my son.   I was ready to share the burden of feeding my baby with the rest of the food-eating world, namely organic fruits, veggies and properly-raised protein.

I was already planning a pump burial ceremony the day after Echo’s first birthday. My enlightened, supermom-self felt extreme gratitude to be able to exclusively give Echo breast milk for six months, and I could find the grace to pump six more. I know it is a precious gift so many moms are unable to give their babies and I felt genuinely humbled. But with my supply waning and the freezer stash quickly diminishing, I was ready to have help feeding my son. I was also ready for some sort of life again, a life that did not revolve around pumping and keeping up my supply. Plus, my nipples were starting to look kind of horrific, my areolas worn paper-thin in spite of my best efforts to keep them in good shape. My favorite mantra of “I can do this for ONE MORE DAY” felt as thin as my areolas. I was officially over it.

Happiest Echo 8 months

Echo’s first solid food was avocado and he LOVED it. He got it all over his face and hands and in his hair. Then we tried pastured egg yolk with grated grass-fed liver. I’ve never seen such a look of joy on his face. My baby was a total foodie at heart, just like his mommy. He wasn’t a huge fan of winter squash, but that was okay. He liked everything else we gave him.

We traveled to Texas for Christmas and Echo threw up a couple of times. It happened a little while after eating, which was weird, but we chalked it up to travel and maybe a stomach bug.

We came home, gave Echo avocado again, he threw up exactly two hours after eating it. Then he continued vomiting uncontrollably for the next 90 minutes and even threw up bile. We communicated with his doctor intermittently over the next 12 hours, assuming he was allergic to avocado. Echo bounced back in 48 hours, and a few days later we gave him his favorite, egg yolk. Exactly two hours after ingesting the egg yolk, the vomiting began again and this time it was much more severe. Echo became extremely lethargic. We communicated with his doctor continuously throughout the night. I gave him sips of watered-down breast milk and Lance and I took turns soothing and cuddling him.

We saw Echo’s doctor the next day and she brought up Food Protein Intolerance-Entercolits Syndrome, or FPIES for short. She tested Echo’s stool for blood, and it returned positive. We researched FPIES and his symptoms fit exactly, but nobody wanted to jump to a diagnosis. A few days later, Lance gave Echo a carrot to teethe on and precisely two hours after introducing the carrot, Echo threw up. That confirmed it. Our son was allergic to food. I wept unabashedly in front of his doctor on the day we received the FPIES diagnosis. Staring down the tunnel, that watery light of hope ending my relationship with the pump, began to flicker and fade as I realized there was no real end to pumping in sight. Not only that, but my baby was very sick and I could do very little to change that for him. I felt completely undone and powerless. The impossibility of pumping for the next 2.5 years loomed big and the dark clouds of survival rolled back to cover me once more. I would not break up with my pump any time soon. But more than that, my baby was sick. The kind of sick you can’t fix, or treat, or hope away.

We chose to stop all food trials, (with the exception of coconut oil, which has no protein in it), until Echo turned one. Resting his gut seemed like a wise move, and gave Lance and I time to come to terms with our amazing miracle boy who needs meticulous care and consideration. It also gave us time to come up with a strategy for feeding him, and space to deal with the long-term ramifications of FPIES. With each new food introduction, the rules for trialing it are stringent: one food at a time for 18 days in a row, followed by a three day break and reintroduction on the 21st day. No grains, no soy, no cow’s milk, no corn derivatives and no processed or combined foods. All of this in hopes of healing and reducing the strain on Echo’s gut. Eating out, eating in, traveling, playdates, childcare, the zoo, splash pads, children’s museums, playgrounds…they are all latent with food. Our home is safe from Echo’s trigger foods, but the rest of the world is not. Echo even reacts to grass and leaves that he sneaks in his mouth while we are outside playing, which turned us both into helicopter parents. Lance and I both mourned the loss of freedom we all would experience, but mostly the loss of freedom and exploration for Echo.

One More Day Carries Pump Hygeia

At eight months, my supply tapered way down, and no amount of herbs, tea, extra pumping sessions or positive thoughts brought it back. Under the supervision of my doctor, I tried Domperidone as a last resort. It worked for the most part, however, I still needed to supplement with donor milk. This was another hurdle. Echo mildly reacts to specific foods in my milk and I wanted to find a donor who would be willing to follow the same specific diet I do to give my son the best chance at healing his gut. One of my oldest friends, Allison, stepped forward and offered to be a consistent, diet-compliant donor and ship the milk overnight from Texas to Oregon every month.

Allison wasn’t the only person to step forward and help us. My three closest friends have also provided safe milk for Echo’s supplementation. With their help, Echo has remained in the 70th percentile for weight. Our vibrant, close-knit community have all helped us stay afloat. They’ve prayed, rallied, provided meals for Lance and I, given us date nights, an understanding and compassionate place to vent, and most importantly, a safe haven for our son. Company picnics and nanny-shares and beach weekends with our friends are possible because our remarkable little tribe cares enough to share the burden of Echo’s well-being.

Carrie lance and echo

 

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Feeding Echo, part 1- Breastfeeding Trauma, Exclusively Pumping, and FPIES

October 14, 2014 by 3 Comments

By Carrie Saum Dickson

This guest post shares the feeding journey of 16 month of Echo as told by his mother. A breastfeeding, pumping, allergy story of a little boy with a bright spirit and a mom and dad with steadfast hearts and commitment. Their story is beautiful, inspiring, challenging, humbling, educational, and so very raw. Be sure to go on to read part 2 and part 3 of their story as well.

skin to skin newborn

It’s 8:30 on a Wednesday night. My husband, Lance, is in our son Echo’s room, feeding him his bottle and reading a bedtime story. Bedtime is later than usual tonight. After working a full day building my practice as an Ayurvedic Wellness Counselor, taking Echo to an early evening doctor’s appointment and cooking dinner for the three of us, time slipped away from me. Echo ate his dinner late, too. We are all tired and cranky from a day that held too much activity and not enough down time.

I’m washing baby bottles in the kitchen when I hear Lance frantically yell through the monitor, “Carrie! Carrie! It’s happening again!”. I slip the bottle I’m washing back into the soapy water and hurry to Echo’s room. Echo, Lance, and everything within a three-foot radius is covered in vomit. I grab a towel for Lance, take our crying one-year old son, and try not to cry, too.

I draw a bath while Lance peels off his vomit-soaked clothes and climbs in the tub. I undress Echo and give him to Lance and go clean up Echo’s bedroom. I strip the double bed, break out the sanitizer and get down on my hands and knees to make sure I don’t miss anything. I study the vomit: color, consistency, quantity, and make notes to share with Echo’s doctor. The details are important.

I go back to the bathroom to get my sweet, smiley and spent little boy, put him in fresh pajamas while Lance showers. We start the bedtime routine all over again. We play peek-a-boo and pretend to eat his toes and we all feel a little better after laughing. I go back to the kitchen, finish washing Echo’s bottles, and sit down on the couch with my trusty pump as Lance kisses me goodnight and heads to bed himself. It’s 10:15. Exhausted, discouraged and hurting, I massage my right breast, which seems to constantly be clogged these days, and allow myself a good ugly cry. I leave the fresh-pumped milk out on the counter so I don’t have to waste precious minutes heating up a bottle in a couple of hours when I’m sure Echo will wake.

It’s 11:00 before I climb into bed, my right breast still hard and hurting with unexpressed milk. I know my sweet little Echo will wake up several times tonight, either from pain or hunger, and I’ll sing to him and soothe him the best I can in those long nighttime hours.

Echo has eaten green beans 10 days in a row now without any reaction, and we began to hope that maybe this would be a Pass. That his diet would expand to something other than breast milk, coconut oil and spinach.   This latest vomit episode signals the end of the green bean trial and one more food to add to the Fail column, of which there are many. And more than that, it means we have to start over from scratch with a new food, and all of the trepidation and hope that comes with it. I fall fitfully asleep worried about my baby, my boobs, and this betrayal of my son’s body called FPIES: The Mother of All Food Allergies.

Echo’s relationship with food has been fraught with difficulty from Day Two. When he was 36 hours old, he stopped breathing while nursing and continued to stop breathing every 10 minutes for the next 16 hours. In the hospital, he received his nutrition through an IV for almost three days. We didn’t know it at the time, but Echo was experiencing non-breathing seizures due to a stroke he suffered sometime shortly after birth. None of the doctors could tell us what caused it, and they chalked it up to happenstance.

Echo stroke NICU Exclusively pumping

My relationship with feeding my son has also been fraught with difficulty. Resuscitating him when he turned blue at my breast brought on PTSD and panic attacks for months. Over a year later, I still feel a faint, tiny, cold fist of fear in my chest when I remember it.

My first experience with a breast pump was sitting next to Echo’s bed in the Pediatric ER while a team of medical personnel worked furiously to keep him from crashing every 10 minutes while my eyes continuously leaked tears of terror and exhaustion. I pumped every 3 hours around the clock, even when I could not hold him for two days as my milk (miraculously) came in. I continued to pump, proud of my body for rallying to feed my baby, in spite of the circumstances and in spite of my fear. My body could do this one thing for my newborn son, and it did it well through bone-crushing exhaustion and fear.

Around four months old, Echo began making great strides in his stroke recovery. The muscle weakness on the left side of his body that affected his latch retreated. We weaned him off one of his anti-seizure meds. He woke up to the world around him, alert and happy and contagious with laughter. He also rejected the breast entirely. We had worked up to three nursing sessions a day and I was sad and frustrated when he wanted nothing to do with it. He looked terrified and scared every time I put him to breast. I told him aloud “we can do the hard things together, baby”, the phrase which I used to affirm us from pregnancy on, and resolved silently to myself as I hooked up my pump, “I can do this for ONE MORE DAY”. Grace always showed up to help me through those difficult early days of weaning and extra pumping.

 

exclusively pumping

I wondered if Echo remembered his first seizure and in my gut, I knew forcing the breast was re-traumatizing him. So, we stopped nursing. Many of the dark clouds our little family had been surviving under, lifted. We enjoyed lots of cuddles and closeness with bottle-feeding and we allowed this breast feeding-free world to be our new normal. I developed an even closer relationship with my pump. It went with me everywhere, even places my baby couldn’t. I tried hard not to resent the extra dishes, the double duty of pumping and bottle-feeding, my miniscule supply of free time, and the total loss of freedom to just take my baby and have a day away from home without first planning how much milk to bring and where I could pump in privacy.

Carrie and Echo skin to skin

Filed Under: Article, Breastfeeding, breastfeeding difficulties, breastfeeding help, breastfeeding stories, breastfeeding support, Breastfeeding the newborn, breastmilk pumping, breastpump, Featured, guest posts, Leakie to Leakie, motherhood Tagged With: , , , ,