When Life Hits the Fan

When Life Hits the Fan

A guest post by Honor Genetski

I've been getting my share of lessons in acceptance lately. I choose to see it this way rather than as a run of bad luck because without fail I am more grateful, more clear-seeing, and more resourced on the other side of these stretches. When it's happening I obviously just want it all to go away. 

It started a few months ago when Lemon caught a stomach bug. It hit her hard, but I thought after a few days of gut rest she'd be back to her normal cheery self. Instead her entire system unraveled and she lost the ability to digest anything. She survived on broth for another month while we waited for this monster to run its course. It was a lot of waiting in the dark.

When Lemon gets sick no one knows what's happening. This time after lab work ruled out a few common bacteria and parasites, I was told by her pediatrician that she would defer to me since I was the expert on my daughter's health. I sat with these words for a minute unsure if that was actually a good thing in this case. 

There really isn't a net to catch this child when she falls. I hold her on the way down and we fall together. 

It has me thinking about how we all find ourselves in the depths at one time or another and have to find a way through. Holding healing for yourself or for someone you love is a commitment to staying present with fear, exhaustion, and every joyous gain. It's allowing yourself to be right where you are with the tools you've got.

And rock-bottom serves its purpose in that it's a place to take inventory on what is and isn't working, and to resource for the next steps.

The following ideas are some of my most tried and true methods for navigating the deep and making my way back home again. Hopefully they will help you too the next time life hits the fan in your house.

~ Feel your feet connecting with the earth. This is the most immediate kind of grounding work and can be done anywhere, anytime. There is only so much freaking out you can do while your focus is on your feet.

~ Practice gratitude about anything and everything. Say it out loud. This is life-changing work because it makes acceptance of what is feel bigger.

~ Ask for what you need (or want) from your partner, spouse, friend, and extended family. Don't expect them to know until you verbalize it.

~ Explore more forms of support than you think you need (support groups, therapy, friend time, exercise). 

~ Connect with resources that align with your values – make sure it’s a right fit. If it isn't, allow yourself to explore other options. 

~ Create a space to be with yourself. Choose a place where you feel connected with something bigger than you. Church, yoga, a meditation circle, standing in the forest, or immersing in water. 

~ Some days collapse is a necessary and logical response to what life brings. Go there and find the gem of stillness buried inside. When you feel ready get up and start again.

Honor is a Marriage and Family Therapist, and mom to a child with FPIES.  Honor follows her intuition and hope in the quest for healing on Therapist Mama. where this blog post originally appeared.  It is shared here with permission.  

FPIES Tools: Food Journal's for Food Allergies!

Whether you are nursing, starting solid foods with your child, or simply looking for a way to learn more about your child's responses to foods in his/her diet, a food journal can be a helpful tool in figuring out safe vs. unsafe foods for your little one.

When their little ones initially receive an FPIES diagnosis, many parents find journaling helpful for learning what their little one’s “baseline” or “norm” looks like. Charting their little ones' responses to foods, both positive and negative, can be useful in sorting out and identifying potential reaction symptoms, if and when they occur.

On our website, we provide you with some helpful sample food journals. Whether it is structured, open ended, a combination of both, or even a more detailed “hour by hour” food and symptom journal, you can find examples and blank templates on this helpful page.

Today, we’d like to feature a specific type of journal from a fellow FPIES mom! Krissandra Cox recently shared a colorful picture of her version of a food journal.  It is color coded for types of symptoms observed, and it is graphed to show frequency of those observations. Krissandra shared this with us about her journal, “I created it after asking myself what her doctors seemed to really care about: what food did she try, and how did she react? They never asked me for specific dates, or at what time of day I fed her something, or how long the trial lasted; that information was useful to ME, but not [necessarily as much] to her doctors. In the end, the only important factors [they needed] were Food:Reaction. So, I made the chart using a sliding scale of symptoms that someone could easily look at and see a pattern. The worst offenders fall into the orange-red zone, which means a re-trial would happen much later for those foods. Her allergist and GI loved it and made a copy!” This journal style intends to give a “snap shot” of how each trial may be going.  It’s no surprise that her doctors-- and other FPIES parents!-- appreciate it!  

In the true FPIES community fashion of families helping families, we were thrilled to see another mom, Robyn Stojakovich, generously offering to put this template into a printable/editable format for others to utilize and benefit from as well! You can download your copy here, save it and print it, or bookmark it online for a quick reference at your fingertips! 

No matter what style of food journal that you use, you may want to consider taking it to your child’s appointments! Some doctors find it helpful to view the food journal periodically to track symptoms, to check on the child’s diet, or for other reasons. The journal offers them a window into what you as the caregiver are observing each day.

Can't quite find the right fit from the pre-made templates? Food journals can be just as unique as our little ones! In case you would like to create your own original version, here are some tips to get you started: 

Remember– whether it is written in a spiral notebook or with a computer program, the key is making it work for YOU so that it can be best optimized as another tool for the toolbox.

Need more tools for your toolbox? For more tools and resources for day to day FPIES management, be sure to check out The FPIES Foundation's Toolbox today!

This post was written by the Executive Board of The FPIES Foundation 

Someone's In the Kitchen with FPIES: Winter Veggies!

Someone's In the Kitchen with FPIES

I have always loved being in the kitchen and even though my eldest daughter's FPIES diagnosis threw me for a loop, it didn't change that love. Creating new recipes for her and her little sister, also diagnosed with FPIES, has become a way of coping with the ups and downs of this complex diagnosis.

That said, there have definitely been some frustrations along the way. Dealing with leftovers has been one of them! When each member of the family has a separate, distinctly different meal and when the kids are picky, leftovers are a big reality. Over the years, I have learned ways to not only use leftovers creatively, but also to use them to boost the nutrition content of the girls' baked goods.

Our Favorites-- Loving Those Winter Veggies!

My youngest daughter, C , is able to eat all forms of winter squash. When I roast a squash for her, I use what she does not eat to make baked goods and “Squasher Tots,” one of her favorite finger foods. One amazing mom I met on BabyCenter back when B was a baby, talked about using squash as an egg substitute. Now I know why-- it gives a wonderful texture to muffins and biscuits but it also helps them to be less crumbly! I have also used the squash to make homemade soup and a type of sauce for her pasta. Even the seeds can be saved-- toss them with a little oil and salt and roast them for a snack, make a seed butter, or even make a seed milk (I use this for baking). C would like to share her “Squasher Tot” recipe in the FPIES Recipe Box with you today! 

My oldest daughter, B, loves beets-- her favorites are the “stripey ones” (Chioggia). Not only are beets a nutrition powerhouse, they have a lot of uses in the kitchen. Just a touch of the puree mixed into a frosting recipe can make a beautiful red or yellow-orange color (depending on the beet variety you use!). The greens can be cooked or eaten raw as a salad. Our favorite uses for leftover beets include pureeing cooked beets to use: as an egg substitute in chocolate cakes, to change the color of biscuits or tortillas by adding beet puree to the dough, and in a new recipe, baked glazed beets. B would like to share the last recipe in the FPIES Recipe Box with you today!

Join Us in the Kitchen!

There are a lot of amazing parents out there, cooking up some amazing creations in the kitchen for their little ones affected by FPIES! Are you one of them? We would love to feature you in our monthly segment, “Someone's in the Kitchen with FPIES!” Write an article, about 500 words or less, featuring a special tip, an allergy-friendly cookbook review, and/or an original recipe and submit it to us via contact@thefpiesfoundation.org. Upon approval, recipes will be published on our website recipe section and your article will be featured here on The FPIES Foundation's blog. For more information and submission guidelines, contact a.lefew@thefpiesfoundation.org today!

This post was written by Amanda LeFew of the Executive Board of The FPIES Foundation