Have you ever had an instinct? An instinct that begins as a gnawing...Then grows into a raging burn; a burning instinct that something is wrong...
Your baby continues to get sick from the very foods he is supposed to thrive on. I did. I am a mom of a little boy just diagnosed with FPIES.
And that burning feeling now? Extinguished. My instincts? Stronger than ever. Guiding me, with my faith, as we navigate through the murky waters of our new world created by something called FPIES.
"Faith is not about everything turning out OK; Faith is about being OK no matter how things turn out."
Thursday, December 5, 2013
I wish I could share more, I wish I had more time to share more because I have always taken my time with my posts -- being very careful about what I put "out there". There is so much to Little Man's story that would be scary to read if you didn't know his whole story, so my blogging has lagged behind. Some would say (have said) that my posts here, sharing Little Man's experiences, are 'scary' in and of themselves, just for being what they are. I wonder if those people think of what they are saying? That a little boys life is scary? A sweet little boy only wanting what any other 2, 3, 4 year old boy would want from life -- to be happy, safe and loved. I never intended telling his story would be 'scary' because his life isn't scary. FPIES itself can be scary, not knowing how to help your child through the pain, symptoms and vomiting of the FPIES being "triggered", not knowing how to properly read a food label, or how to completely exposures of the 'trigger' food, not having adequate medical help when your child is sick,....these can be what is scary about FPIES. But, they don't have to be. One can learn how to read a food label, how to avoid a food trigger, how to avoid cross contamination triggered symptoms and reactions, how to advocate for your child with their medical team -- your partners in the care of your child. Our son's experiences and life are not scary, FPIES can be scary but it doesn't need to be. Empower yourself, help empower others, share what you learn, advocate -- help your family, friends and doctors learn about what FPIES looks like in your child and how to help keep them healthy and thriving in their individual environment. Get help and support and know you are not alone.
I am not alone in our blogging, there are now several dozen blogs dedicated to FPIES from other families on this journey, sharing what they are learning, what FPIES looks like in their child, how it affects them and their family. A friend I have 'met' on this journey, who recently started to journal her families journey with Food Protein-Induced Enterocolitis Syndrome on a blog, "Hope for Wyatt", asked me if I could share Little Man's story for a "Faces of FPIES Spotlight" she is doing on her blog. Hop on over and read what we shared on "Meet Samuel", and "meet" Wyatt and his family while you're there.
Sunday, December 1, 2013
Saturday, November 9, 2013
Be sure to check it out!
Thursday, September 19, 2013
You are invited to read more about the beginning of The Foundation for FPIES in the September edition of Complex Child: FPIES, The Formation of a Foundation.
Sunday, July 21, 2013
I often get questions on where to start, or what to avoid. So, I wanted to have a specific reference list for places that are my 'go-to' for corn sourcing, I added a Corn Allergy page (see tab above or link here): http://fpiesmudpies.blogspot.com/p/corn-allergy.html
Tuesday, May 14, 2013
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.
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. :)
Saturday, May 11, 2013
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.