Dear Sarah, I just didn't know about FPIES. Food Allergy Awareness Week 2013: A Guest Post

I shared a post the other day on Food Allergy Awareness Week, and what it means to me to bring awareness to FPIES. Today, in the midst of Food Allergy Awareness Week, I am very touched by these beautifully written words, expressing so much of the frustration, anguish and most importantly, forgiveness we must give ourselves, as mothers, that we are doing the best we can everyday.  This is shared by a fellow FPIES mom, whom I have had the honor to 'met' via a Parent-to-Parent support group.  Jenn Booth has given me permission to share her letter to Sarah, here, on my blog. 

Sarah, I just didn't know about FPIES.

If I had known that you could look adorable on the outside, but be very sick on the inside, I would have known how much you needed me to help you.

If I had known that your newborn tears were from pain, I would have complained less about being up all night.

If I had known that feeding you baby food would put your life at risk, I wouldn't have spent all day trying to get you to eat it.

If I had known that you were desperately trying to tell me it hurt your body to eat noodles, I wouldn't have made you finish them before I got you out of your highchair.

If I had known that you had no other way to tell me that you were suffering, I wouldn't have punished you for hitting me.

If I would have known that you didn't just "get the flu" more than other kids, I would have questioned the doctors more.

If I would have known that your tantrums were a cry for help, I wouldn't have let people label you with a "behavior problem".

If I would have known how close we were to losing you, I wouldn't have wasted time brushing my teeth before taking you to the hospital.

If I would have known that the cookie I gave you at lunchtime could make you throw up 4 hours later, I wouldn't have gave it to you.

If I would have known that food allergies don't always show up on allergy test, I would have tried an elimination diet earlier.

If I would have known that anaphylaxis is not the only kind of life threatening allergy out there, I would have demanded faster treatment at the E.R.

If I would have known that your vomiting, bloody diarrhea, screaming, constipation, hair loss, pale color and passing out was from food, I would have eased your pain sooner.

If I would have known the juice I was mixing your medication into was the reason you were constipated, bleeding rectally, malnourished, vomiting, and bloated in first place, I would wouldn't have force fed it to you.

If I would have known that pediatricians, children's hospitals, specialist, and feeding clinics could all be wrong, I would have sought help elsewhere.

If I would have known that there were other kids like you out there, I would have tracked down their families and compared stories sooner.

If I would have known that the scopes weren't going to show much because the prep for the scope is to stop all FOOD days before the test, I wouldn't have put you through it.

If I would have known that not all kids with FPIES outgrow it, I would have prepared better for the long haul.

If I would have known that some kids have NO safe foods, I would have been less freaked out about only having 27 safe foods.

If I would have known that not all ingredients are listed on labels, since you can never be sure how each ingredient is derived, I would have called food companies earlier.

If I would have known, if the doctors would have known, if anyone I rambled on to would have known, it wouldn't have taken 6 years to diagnose you.

If I would have known that at 7 years old you would be in so much pain and feel so "not normal" that I would overhear you pray to go to heaven early, I would have explained sooner that there is no such thing as normal and reassured you that it will get better someday.

If I would have known how embarrassed you are about a medical need to wear pull-ups at 8 years old, I wouldn't have waited to tell you that I was a bed wetter until 5th grade.

If I would have known how isolating, scary, confusing, frustrating, and financially debilitating it is for families living with fpies, I would have reached out to give and receive help sooner.

If I would have known how many well-meaning people would offer you treats, I would have stopped them before you realized you were missing out.

If I would have known how many good people we have in our community, I would have asked for help sooner.

If I would have known there was a place we could get information, support and understanding, I would have contacted thefpiesfoundation.org sooner.

If I would have known you were suffering from food multiple food allergies, I would have found you help sooner, saw you smile more, and kept you safer. Because I love you, because you are my child, because we are in this together, we will be okay.

Love,
mommy

Please spread the word. It is Food Allergy Awareness Week and these kids and their families don't need to suffer. This is a rare type of reaction to food, and most of the medical community are not aware of it, or don't clearly understand all the symptoms.
If you ever asked how you could help or if you know and love Sarah, please repost this, like this or whatever....after all, I did just tell you that I peed my bed until fifth grade. :)

Awareness is Action! Food Allergy Awareness Week 2013

If you follow this blog, you are likely aware that I am BIG on raising FPIES Awareness.  Maybe it's my personality, but I have always viewed awareness as an action. I am not simply raising awareness to the diagnosis but in what it means, and what ways we can be stretched to learn, and to be helpful.   To be empowered, and to empower others.

In the beginning of this journey, I was privileged to have a pediatrician for our boys that was good about knowing what ways she could empower me.   One of those ways was (and some may not understand this but thankfully she understood enough about me to know I needed it)....was to say she was stumped.  After week upon week of bringing Little Man in to her office, repeated visits for new symptoms or to review current symptoms, practically begging and often crying for help, thinking that if I just told her about this new symptom or did I forget to mention that incident; will I get closer to some answer she in her knowledge and experience, is considering?  Then, one day, she sat down and said, "I just don't know". Words probably easier for me to hear than for her to say (yes, words easier for me to hear).  I remember that day still so well because it changed my thinking, it changed me from waiting for someone to have an answer, to me finding an answer. It empowered me. She didn't know, but I did. I didn't know about FPIES then; but I knew my son, and I knew something wasn't right.  I would research day and night,and write down everything,and read every journal article I could get a hold of (which was only less than a dozen at that time).

Once we did finally find the diagnosis, I entered support groups, and I found myself surrounded by families in so many similar situations.  The need to be empowered to know how to care for this child with this rare, little understood allergy is so great, it is so needed. A mother has the intuition to care for her child from before they are even born....a connection so deep- poetic words (that I do not have) can only begin to describe.  What we don't know instinctively  we instinctively know where/how to learn.   But then, your child has this allergy that doesn't follow any rules and that robs you of the basic need to nourish them and you feel like you're standing alone and your toolbox is empty, or the tools you have in it don't fit at all and you lose time trying to use them, trying to make them fit.

So, during Food Allergy Awareness week, above other times in the year, my awareness is increased and I hope yours is too, and you will help spread the information about Food Protein Induced Enterocolitis Syndrome so that more families and more medical providers, are empowered to learn more, and become equipped with some basic tools for thriving through this disordered allergy of the gastrointestinal system.

Awareness is key, Awareness does matter. Awareness is Action. 

Once cooked and Twice Fried Potato Coins

Little Man loves crunchy things, always has. Part of his oral aversions and sensory issues? Maybe, maybe just part of his personality.  He enjoys a nice crunchy fry, and for some reason- he prefers them in 'coins' rather than strips. I was making them batch by batch for him, until I saw what this mom was doing with her real food french fries. Great idea and since adapting it,it is one of our most "convenient" food items! Little man loves his with lots of sea salt too!

"Once cooked, twice fried, potatoes coins", frozen and ready for their 2nd fry 

The recipe is linked above, but in case you missed it, here it is again: French Fries

Allow time to process, and other tips to thrive...

April is "Caregiver Mental Health Month" at Complex Child E-Magazine.  A fellow FPIES mom (Cradlerocking Mama) wrote a great article about her Tips to Thrive for Parents of children with special needs.  I also recently wrote an article for their tube feeding awareness segments in February (Overcoming The Small Percentiles: Our Super Tubie).  It is a great e-magazine where parents submit real-life experience and insight articles to share among other families that have children with complex diagnosis.   FPIES is complex just from the shear nature of it, no test can define it, no test to find out what foods your child is allergic to, and then there are differences in how acute and chronic FPIES presents.

Insights and experiences on different and new ways to cope with this rare, and often times complex, allergy are shared graciously among the other parents going through this with us. There seems there is always something new to learn, even if you are expected to be a 'seasoned veteran". I remember the seasoned veterans on the babycenter boards when I was first logging in, how much more sure of themselves they seemed.  They had learned to trust their instincts, go with their gut, follow their child's lead, learned life outside of the restrictions that FPIES can initially put on your family/lifestyle.  Now, armed with the skills and tools needed, they were on to thriving with the new knowledge gained and new perspectives, but graciously continued to come back to the groups to share their insights and experiences, and even their continued frustration of some new challenge that was needing to be overcome.  I remember well something a fellow mom had said one day that stuck so well to where I was at the time....give yourself time to process. Allow time to process through the new stages, the new information, the changes that may need to be made in your home or lifestyle.  Not in a negative way, but in the 'give yourself time to process' and find your way to thrive scope. Give yourself time.  That is what I would add to CradleRocking mama's list.  When faced with a new diagnosis of any kind, or any stage in the journey, it is ok to give yourself time to process; allow yourself that.

Homemade Chocolates

I was thrilled to find this Homemade Chocolate recipe.  Before this, I had not tried cocoa butter; but it seems to be going ok for Little Man- although it does make the chocolate candy much more rich than the maple syrup chocolate candy I have made in the past. 

My adapted recipe from Real Food Forager:

Ingredients:

1/4 cup Cocoa butter 

1/4cup Cocoa powder

1 Tbsp. Pure Maple syrup

Directions: 

Prepare a double boiler, using a small sauce pan to melt the cocoa butter.  The cocoa butter should be warmed over a double boiler just to melt it, do not boil (it will get bitter!).  Once the cocoa butter is melted, remove from heat and add the maple syrup, then whisk in the cocoa powder.  Pour into molds.  Makes ~12 medium sized candies (with enough left in the pan to "lick the beaters"!.  Put the molds in the refrigerator until solid.   Remove from mold, let sit on counter to 'dry' - this helps them not melt as fast when handled by little fingers to eat.  May be stored in fridge - if there is leftovers!  It is a rich, dark chocolate candy.  

Hot Hot Cocoa

Once cocoa was passed, we experimented with ways to make homemade treats (chocolate maple candies, homemade chocolates, and hot cocoa).

I discovered the recipe on a home made chocolate 'flop' - everything happens for a reason and we keep tweaking the measurements to have a chocolate "syrup" on hand.  I can then mix the syrup with water (or a safe milk, little man prefers water for his hot hot cocoa), and make hot cocoa.

Little Man coined it "hot hot cocoa" and loves that he gets to have a cup of cocoa when he comes in from the wintery cold, like his brothers!

Ingredients:
2 Tablespoons Pure Cocoa Powder
3-4 Tablespoons Pure Maple Syrup

Pour maple syrup in small saucepan over medium heat, mix in cocoa powder with a whisk.  Heat until all cocoa is dissolved and just before maple syrup boils (boiling maple syrup will begin to change it's makeup- and you're on your way to making candy, but that is another recipe!).   Remove from heat, and pour into container to store in refridgerator.   Mix 1-2tsp (or to taste) of chocolate syrup with 2-4oz. of warmed (safe) water.  Serve warm in favorite mug!  Enjoy!

Remember being new to FPIES?

Do you remember being new to FPIES?  I do. Our son wasn't diagnosed until he was just shy of his 1st birthday, and those months prior were some of the longest, most stressful and anxiety filled months we have endured.  Little Man is now 3.5yrs.old, FPIES is no longer a new diagnosis. We are versed in the changes that we needed to make to keep him safe, to learn about his allergies, to trial foods, and get support, to help friends and family understand and support us by respecting our sons needs. FPIES is still a big part of our Little Man's daily life as although his list of safe foods is growing,  his list of avoiding foods is still long enough.  

Recently, Little Man and our family got to meet another FPIES family who were in town receiving some further consults on their son's complex FPIES.  Their son has no known foods he can tolerate at this point. He survives, and thrives on an elemental formula for his sole nutrition. He is 3.5yrs. old, just a few months younger than Little Man. They were instant friends. They both noticed right away that they shared 'bobbles' (they both said bottle in the same cute way!).  And although it wasn't a big part of our meeting, they did both recognize that they shared "food makes my tummy hurt"'; which may not seem like a 'happy' thing to share- it is their reality, so having others to share that with is important for them.  

Little man has met other little friends with FPIES, but Little Michael had not. Little Michael had only recently even received the FPIES diagnosis (just before he turned 3yrs). His family had been managing his allergies under "multiple food protein intolerances" and since he was thriving on elemental formula since 4mo.old, and no one knew why food caused the symptoms they did- they were alone.  They were alone in trialing foods, alone in keeping him safe, alone in trying to have others understand, and explain to their growing son why he couldn't have food, they tried foods here and there- hoping and praying each time that they could find something that didn't cause excessive and irrational screaming, violent vomiting and days of diarrhea....not to mention how some foods also caused edema-like swelling and hospital stays. 

So, what would you say to you if you could go back to those first months of the diagnosis? What things helped you understand the most about FPIES?  What helped you cope? What helped you with food trials? What helped you help family and friends understand the magnitude of this allergy? What things helped you feel less alone?  

 These two boys share so much, and they knew it.