Which is a good thing because I made his tribute video with just 29 pictures to tell 2 years of FPIES....
I love photo's, I am a "scrapper" at heart (but oh, so way-y-y behind on my scrapbooks!). I love to capture and record moments in pictures. Taking a piece of that time to carry forward with us...never forgetting.
So, why would I take pictures of my little man screaming and crying? Because, despite me saying it was "bad"- it was hard to picture just how bad. I was logging everything he ate, how he slept, what his diapers were like; and back in the beginning months of this- I even had a "pain scale" on these daily logs I kept for him. Because he was in pain everyday, the only thing that changed was the degree of that pain. I needed to add another dimension to these journals, I needed to try and do something to help someone, anyone else understand just how rough it was for him, for us.
And so began my FPIES photo file. Capturing pictures of eczema, of crying, of "spots" on his face, of diapers (eeks- I know but you can see microscopic blood zoomed in on the picture that you can not otherwise see when inspecting a diaper!). I have it all in a file. A picture tells a thousand words.
And there are thousands of words behind this video: FPIES: Our Little Man's Journey. 29 pictures....
Picture #1: A new baby boy...our precious 4th little man, just days old.
Picture #2: Something is not right - our eldest, not quite 9yrs.old and wanting to help so badly- picks up his crying little brother while I prepare dinner. The picture wasn't of him being in pain, it was of his big brother helping out...and how proud I was of him for trying. Although, that frown became a signature, he would be sitting there happily cooing and then this frown would come over his face...it was the saddest little frown. It was my eldest who said to me around 5mo...."what happened to him mommy" that helped me to see this was not just "normal" baby crying.
Picture #3: Trying new foods causes me pain- this picture was actually after he was off all foods- but I wasn't taking pictures as much then...but this is what he looked like more and more over the months while we tried to figure out what was going on. This is 3 weeks into no foods, off breastmilk and on Elecare....and the crying was escalating....
Picture #4: Eczema and rashes- in April, he had been off food for weeks, on Elecare and then switched to Neocate. Neocate gave us a little less crying during the day, at first but still much disturbed sleep and a "colicky" baby at night, still very spitty, and this eczema popped out within hours of giving him some dye-free motrin.
Picture #5: Vomitng and agitation -this was in the evening, on nothing but Neocate....by May this crying was a growing and he had been on elemental formula for 3mo....we were growing weary of what to do to help him. That helpless feeling...
Picture #6: Food is meant to nourish me, what could be causing this? What would you do?? A typical day with our little man looked like this, from my perspective....every time I had to put him down to make his brothers breakfast, clean up breakfast, make lunches for school, do laundry, make lunch, do a task for his 2yr.old brother, do the dishes, clean up, make dinner, dinner dishes, bath his brothers....this is what we got....crying, screaming, hold-me-now, clinching to odd inanimate objects (here it was the kitchen towel). We need help, this can't be healthy....
Picture #7: ...At CHOP- the nurse administering the skin prick testing to rule out IgE involvement of allergies, to help with the FPIES diagnosis and more importantly- the plan for care...including the introduction of foods safe at home with strict guidelines for symptom monitoring vs. in-hospital because of risk of anapyhlaxis.
Picture #8: ...Diagnosed with FPIES - this is actually a few months after we came home, and switched his formula- he is becoming such a character, really starting to shine and ham! He is wearing his token CHOP t-shirt we got while there! So cute in green!
Picture #8: Every food must be trialed, it is the only way to know if it will be safe for me - home from CHOP, we feel our first trial needs to be corn. He is not getting any better on the elemental formula and we suspect this is why. This is a picture of him eating grits...and you can see his face/eyes are swollen looking (other foods have had this effect as well)- it is actually our 2nd day trialing. Our first day was a 1/2tsp of whole, pureed corn. We had full symptoms that we would recognize now as a fail but we were so new and he was still so sick daily- it was hard to see what was reaction or what was his "normal". We called CHOP for advisement, we were advised to stop- that it was a clear fail but he had spit up twice but not violent vomiting...isn't FPIES violent vomiting- what if it was something else? The allergist felt it was from the corn allergy but agreed if we wanted to know for 100% sure, because this would mean he would need to come off the elemental formula, we could proceed with 1/2 that dose, and change it to grits instead. (that picture really is a thousand words!)
Picture #9: We trial corn....and "fail"...a mere few hours later, from the last picture- he is in extreme pain.....it would be a few more hours until he violently vomited the contents of his stomach, and then some, all over our floor...and then the diarrhea started, and thick strains of mucus and then blood.....(I have those pictures too but will spare them from you unless you are his GI doctor- whom I have shared them with!)
Picture #10: Why does it hurt so much mommy? We continue to give him Neocate- only now it is hurting him every second of the day. He begins to limit his own intakes of it- surviving on a mere half of his daily needs...We must do something different, but what....
Picture #11: Hemp milk becomes a main part of my new diet....I even posted about it here: Hemp milk arrives, this picture is a few months later when I have "perfected" his homemade formula, building it in in kitchen with 3 ingredients of his 5 safe foods: hemp, safflower oil and arrowroot starch. This corner of my kitchen is where I spend a few hours every other day, making his formula.
Picture #12: And ice is a treat when it is all you can eat.....unfortunately, my building the formula did not go without it's "fails". I initially started with tapioca starch, this resulted in metabolic acidosis and a hospital admission where doctors did not recognize, or understand the mechanisms or effects of his allergy. He enjoys ice as we are forced to put him back on Neocate in his hemp milk, and he begins to exhibit his signs of intolerance- one being an itchy mouth.
Picture #13: I want to sit and eat at the table, just like you...we begin to give him hemp seed cereal- just so he has a "snack" to practice eating, and join us at the table.
Picture #14: My parents explore new foods to find me a safe diet...millet puffs! So exciting! A safe food we found! He loves them! They are tiny and a mess but worth it!
Picture #15: I am happy when we find food that does not hurt my tummy! Peaches! Our 2nd safe food! That fall was a happier time for our family as his menu gave him a few snacks and the hemp milk healed his inflammation and is not triggering his allergy.
Picture#16: trying new ingredients in a recipe with my safe foods....Cookies! His first cookie- made with arrowroot and millet. Unfortunately I mistakenly used baking powder instead of soda in one of the recipes and he had a few nibbles before I realized it. Cream of tarter was also in this recipe and I am still unsure of it's safety. He did enjoy eating it! Crumb by crumb...
Picture #17: ...resulted in a reaction we weren't expecting...(pallor is one of my first stages of reaction)...he was quite fussy and clingy when he got up from his nap that day; so we went outside to play- hoping it was just a "typical" behavior of a 1yr.old...he didn't play, he just sat in my arms. We just tried to make the best of it enjoying a warm fall day with the other boys, not yet knowing how bad it would spiral things...
Picture#18: ...in and out of the hospital.....reactions, severe anemia....he continued to get ill, and his hemoglobin was falling, he was no longer responding to the iron supplements (or they were making things worse?). His hemoglobin fell to a scary low of 5, this picture is of the blood transfusion he had to have to correct his anemia. It was scary but he tolerated it and re cooped his hemoglobin sufficiently (back up to 10).
Picture #19: endoscopy & colonscopy procedures....this, his 3rd endoscopy....following soy reaction, found villous atrophy. We still are not sure if the soy (stopped on day 4) caused the villous atrophy or if he was already reacting to something (his iron supplement?) and soy simply pushed him over....he was a sick little boy.
Picture #20: IV iron, and IV Nutrition...hospital admission for TPN. He is quite swollen by this many days into it (2weeks). He gained a lot of weight but as noticed here- it was a lot of fluid weight. Gut rest healed his inflammation, TPN restored his small intestine villi (where nutrients are absorbed).
Picture #21: I’m so cute on the outside no one can tell how sick I am on the inside...in the fall, before his severe anemia, before his soy challenge, before we started spiraling...on peaches, millet, and homemade hemp milk formula...a happy boy.
Picture #22: Birthday cakes don't have to be made out of food! A picture of us making the most of his birthday- not only were we on the road (coming back from CHOP) but he had no safe foods. His cake was food-free! He loved it!
Picture #23: I am happy when food isn't hurting me...A few days before our hospital admission for TPN. He has villous atrophy, but it did not affect him like his FPIES reactions did. Villous atrophy can be silent, and scary....We were trying to avoid the PICC line and TPN but after 2 weeks of no weight gain (and weight loss) with worsening labs, we knew we could not avoid it. He needed the nutrition. We would be in the hospital from Dec.7-Dec.31.
Picture #24: ...a family who stands by me...Our boys. Our precious little family....
Picture #25: I am quiet and calm....rewind to first days on Hemp milk...a beautiful, happy, calm, sweet little boy- we knew you were in there little man...
Picture #26: I am sweet and strong...a recent photo of our strong little man. We are back to the days in the fall, after we healed him from corn fail and worked through nutrition on his hemp milk formula and passed peaches and millet, before we spiraled....
Picture #27: I have FPIES, a severe food allergy of the gut....a proud little boy with his Allergy awareness/medic alert bracelet. We raise awareness to keep him safe, and to help other families...
Picture #28: His 1yr.photo, shortly before I started my blog....to help others follow our story.
Picture #29: Ok, not a picture, just a slide. I just want to share our story, our experiences, if even just one piece of information can save another family from the pain of an FPIES reaction, or chronic FPIES inflammation....
And here we are, one year later. We have come so far from our first post.
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