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."
Wednesday, June 30, 2010
Tuesday, June 29, 2010
Since diagnosis, it is actually easier to deal with it all; and oddly enough there is comfort in recognizing that we've been in this same place before....he was reacting to trace proteins in my breast milk too and this is the same symptoms it was causing for him. Wish I would've known then what I know now...
He also has one nasty diaper rash, so I imagine that had something to do with his extra crankiness tonight -- poor little guy, it looks pretty painful but I've run out of idea's of what to put on it....he reacts to diaper rash ointments since birth (now know it could easily have been the corn/talc), he reacts to zinc oxide (thought I was crazy on that one but tried to put it on a face rash he had and it made it worse- so no, not crazy...just little man's sensitivity). Out of desperation for him, I put his eczema ointment on it yesterday -- seemed to help some but he was home with Daddy today and I neglected to tell him I was doing that. We've given him numerous baths....put petroleum jelly on it tonight. I can only imagine the burn it causes him...but, again- we've been here before....
Could tell his stomach hurt tonight too, can't wait to get the Hemp milk and try it!! I ordered a case of it and had it overnight shipped. If he tolerates it, I will request our local grocery store to order it in and buy it from there. I did contact the company yesterday to inquire about the Natural Flavors- knowing that this can often be a corn or wheat source....only to have my suspicions confirmed that it is corn alcohol! ((groan))....although she said that they have changed it and it is now corn free- as long as you get the ones produced recently with an expiration of Feb.11 or later. Say a little prayer that that is what is on it's way to us!!
I contacted Walgreens yesterday and inquired if they can make him a formula....they regret to inform us that it is "beyond their scope of practice"....translation- we don't want responsibility for something like that. Maybe if I had a recipe? Hmmmm....not giving up- yet....anyone who knows me knows I do not back down too easily -- especially not for my boys!!
Monday, June 28, 2010
He also agrees that we should hold off on food trials of FPIES trigger foods until little man is to a baseline and healthier...he has been just getting so much sicker by the day and it is so hard to see him go down this road of not thriving again. He advises, get him on the Hemp and get him eating and tolerating this, then get some fruits and veggies in his "safe/pass" foods and then when you have him built up to a good baseline, trial a grain and a meat (these can be iffy so have to proceed with caution and it's pretty much a guess work with FPIES to which grains and which meats they can tolerate).
I'm exhausted since corn fail, but so is little man - he falls asleep at random times throughout the day...I walked into the living room today and he had just crashed asleep on the couch, he usually requires us to rock him to sleep. Ok, so maybe it is a good thing- maybe he is so much more relaxed since we are able to give him ibuprofen that isn't hurting his belly and so he is catching up on some sleep. I would be reassured by that if he actually looked like he slept when he woke up, or if he acted like it- but he looks and acts so tired.
I ordered the Hemp milk online this morning, overnight shipping- should be here tomorrow....hopefully he likes the taste! Thinking of having him on something that is truly nourishing him and healing his gut- getting to see him pain free and distress free, and maybe even start passing some foods gives me chills of excitement!
Saturday, June 26, 2010
Still working on how to make some formula that could get little man to his baseline...Hemp milk does seem like a good option (until I tasted it)! But little man has already proven he will eat anything: any formula, barium, dirt, sand, cardboard, why not hemp?!
Little man seems to be getting further away from finding his baseline everyday....
Friday, June 25, 2010
His current formula is an amino acid elemental formula....unfortunatly it has a corn syrup solid base. The company has assured me the proteins are extracted; but this would be similiar to separating an egg white from an egg yolk for a person with an egg allergy... (I speak from experience, our oldest son has an egg allergy and he can not have Culvers Ice Cream - a custard made from the egg yolk)... It depends on the sensitivity and severity of the allergic person.
Well, our little man appears to have a very sensitive case of FPIES - he currently reacts to everything.
He even reacts to the sand in our sandbox, we suspect the trace proteins from the Walnut tree in our yard because the squirrels have buried walnuts everywhere in the backyard. But I digress....
Back to the formula. Abbott Nutrition makes an elemental formula (Elecare) and a corn-free formula...unfortunatly they are not in the same mix. Alimentum ready to feed is corn-free (the base for this is sucrose and tapioca starch); BUT (and this is a big but)- it is not amino acid based proteins; it is hydrolyzed (partially broken down) cows milk proteins....which little man has reacted to small doses of in the past (and through my breast milk even).
So.....the question I posed to Abbott Nutrition (makers of Elecare and Alimentum) is: can you formulate a formula to meet my son's needs? The answer: not at this time.
Back to the drawing board. I do not give up easily. Hemp milk is what Dr.P at CHOP recommended, the first ones I have found have too many additives that little man can not tolerate but I'm not giving up. It is a possibility -- with the help of our great dietitian -- we may be able to make our own "formula" ourselves...it won't be easy but I know it can be done! Something that our little man can truly thrive on....just imagining seeing his true baseline makes me shiver...
Our son is our responsibility. It isn't the rest of the worlds responsibility to know what is best for our child. It is ours. If someone is unfamiliar with his needs, our job is to teach them. We often find people just want to help, and if they know how to help, they will.
I went in to Walgreens to discuss personally with the Pharmacist. I brought along a printed article (the one I reference on my first post here) on FPIES and explained our son's situation and how vitally important the medication be suited to fit his needs. They have been so helpful with us through this -- back before we got the insurance coverage for the formula he is on, we were buying it there- they always made sure to have plenty in stock for us to pick up whenever and always made a point to ask how he was doing. They were glad to now hear we have a diagnosis and plan for treatment to work with and were more than happy to assist us with this medication request. Yes, it is their "job" but working on it for 2days, researching FPIES and his needs specifically, and calling us to double check on ingredients and additives goes above and beyond the "job" duties. We always appreciate the people who do that for our little man.
Little man had his first dose of this medication last night and he slept WELL, and is a happy little guy this morning -- he's even teething his 1yr.molars and yet no frown to be found. Playing, exploring, giggling, happy little man.
Wednesday, June 23, 2010
Little man threw up again last night, not terribly violently- just 2 large amounts and he was pretty much done, so could've been a couple of things: 1.large volume in short time period or 2. pedialyte.
We had a little bit of a formula supplier mix up and kinda ran a little short yesterday, not that it made too much of a difference because he hasn't been wanting much formula anyway but he went a few hours without eating, followed by a large ingestion of formula and pedialyte -- so,so hot out yesterday, and we were out in in for awhile running errands in the afternoon and at his big brothers baseball game in the evening and since I didn't have enough formula to give him, he had pedialyte to be sure he was staying hydrated.
I have been worried about the possibility of corn in pedialyte so I sent Abbott Nutrition and e-mail inquiry; I got a quick response this morning only to have my suscipions confirmed....sigh, it's all corn- the dextrose is corn derived and so is the citric acid. Sigh.
Little man drinks it well after a reaction and with repeated vomiting, emptying your stomach until bile followed by loose stools -- it is a good thing to have something to replenish those losses. So we were glad to have it in our treatment options for him, to be able to manage this at home, and help him recooperate from his reactions. Sigh.
He isn't feeling well today but is down for his 2nd nap, and we are told his corn-free compounded ibuprofen is ready at Walgreens; so hopefully he will feel better tonight/tomorrow.
Check back later because we are giving Samuel a second first birthday tonight. His brothers are so excited!! We finally got around to getting him some presents, and this time he can blow out the candle on his "cake".
Tuesday, June 22, 2010
We try so hard to maintain some degree of normalacy for the other boys...although they do recognize, and are very understanding of the need for our new normal.
My 7yr.old has enlisted himself as little man's personal guardian -- he is building up instincts of his own. He caught little man with a handful of his 2yr.old brothers M&M treat today...I don't even know what made him think of stopping what he was doing to go and check on his little brother but he did and the next thing I hear is "NO-NO-NO!!". Of course, I go running -- pracitically dropping the phone call from the pharmacy that is helping me get corn-free compounded medications for little man today to find that he had a handful of brightly colored shapes. Their daddy had gotten the older boys a treat while out today...but forgot that there was leftovers in the van that was left open in the choas of getting ready for the game and switching carseats and letting the van air out because of the sweltering heat out today. Little man, all boy, loves to pretend to "drive" the van and will grab any opportunity to do so. He has been/is going through so much, I'm not a pushover mom type but I'm not terribly inclined to take away the little things that make him smile. I don't know what made his big brother think to check on him but I am thankful he did- the candy had not even melted in his hand yet--or made it to his mouth. Peanut M&M and choking hazard aside....an M&M ingestion with a dairy intolerance would really set us back.
Close calls are better than accidental ingestions....we've come a long way...but we are reminded that we still need to work on our adaptations and safe environment at home.
Monday, June 21, 2010
Despite a diagnosis (still new), we haven't found our little man's baseline yet -- and now with first food trial (and fail) we are only further away from this. Little man has been trying to tell us something....he is limiting his formula intakes -- simply does not want to eat, is he telling me his gut is reacting to the trace proteins in the corn syrup solids and has been all along? Maybe....we need to listen more.
Be Still....hear the whisper of God....
Sunday, June 20, 2010
Samuel has been declining again, I'm assuming it is because of his reaction to corn 3days ago. But it reminds me of right before the hosptial stay- he is self limiting his formula and is now down to less than half of what he needs in a day to grow and gain weight. He simply does not even ask to eat and refuses when we try. He doesn't seem to be too bothered by it, or hungry....until tonight- he was particularly fussy most of the evening. So, I decided to give him some motrin to see if this would help. 4hours later, he emptied the contents of his stomach. Motrin, I had been starting to question his tolerance of -- clearly helps him with the pain but have been getting that gnawing feeling that there may be something in it that is still objecting to his system...now, I'm thinking I was right -- there must be corn in it. Dr.P at CHOP did say there is somewhere that compunds medications corn-free...we need to find out more about that because little man needs something to help him through the pain he experiences. If we adults had to experience that same pain- we would be asking for a morphine drip, I have no doubts.
This FPIES is a monster rollar coaster ride. One day you feel like you're prepared and ready for the challenges and the next it knocks you right over.
Faith, faith is a good thing to have...I have a strong faith and I do know without any doubts that God has given us our little man for a reason; and he has taught us so much already, and not just about FPIES but about instincts, patience, perserverance, love from brothers, devotioin of husbands (ie daddy), love and support of family and friends all around us, and about Faith.
Well, now he's up crying again....tickets please...
Saturday, June 19, 2010
Maybe the early signs should’ve been red flags: bringing him home from the hospital and having blistering diaper rash, eczema that started in the first week of life, gassiness, and explosive diapers. But I’d been through all of that before, our first born had milk protein intolerance with allergic colitis at 8weeks old, colic from 3-16weeks old and reflux with throwing up until he was 19 monthes. We had had our share of crying, gassy days filled with projectile vomiting. So I wasn’t alarmed when I began to see all this again. I did see all of this in our 3rd son, but he was only milk protein sensitive. So, I thought I was going down sensitivity road again.
It was approaching time for me to return to work and so trialed him on some formula, for supplements as needed (unsure how my production would hold up). This brought on projectile vomiting from the first ounce. We chalked it up to weird coincidence and tried another ounce in a week or so, only to have more vomiting. Based on our past experiences, we recognized that he wasn’t going to do well with regular cow’s milk formula at this young age. My supply was holding up so we decided to just hold off on supplementing with formula at this time.
But now, at 3mo. old we started to see a colic behavior creeping in- each evening seemed to get worse. We were very busy so we thought he was just picking up on the stress in the house of me returning to work, school starting, etc. My husband works 24hr. shifts, so our 9yr.old steps up to be the "man" of the house and help mommy out when he is on shift. He would tried so hard to help out, it broke my heart and made me so proud all in one breath. It took his words a month or two later, saying “Mommy, what happened to him?” for me to start to really realize I wasn’t the only one noticing that his fussiness was getting worse.
We were approaching 4mo,so we decided to trial some rice cereal to see if the thickener of it would help with what we speculated may be some refluxing issues. This seemed to work for awhile, but that would be the course of things to come for the next few months...we were slowly losing the grasp on what was really affecting him and what was really working. We turned back to the suspicion that my production was low, so we decided to trial another formula- this time trying soy. Soy brought on gassiness, stomach cramps, reflux, burping, and a chest congestion that sounded so badly after 5weeks, I feared he had croup or pneumonia. After almost 2mo of sporadic 2oz.supplemental soy bottles, we decided he must be building up sensitivity to soy. We stopped soy. He also was not accepting new foods well, and beginning to refuse many meals.
That instinct? Now burning flame in the pit of my stomach. Our little guy was experiencing pain day and night. It was getting more heart wrenching to see....stand by and not be able to do anything, or enough of anything to help him escape this now growing constant pain.
We knew something was still not right…months on an elemental diet we thought he was ready for re-introduction of foods. And where do you start reintroduction of food? Rice? This brought on days of vomiting and agitation. With this, we begin to make some connections in the literature: could it be FPIES? We went to the next food, something he enjoyed before we stopped food- sweet potatoes. This brought on many days of colic and runny stools and everything the same as rice, except the vomiting- all from just a few teaspoons of pureed sweet potatoes on one day. This was getting to be too much again. We had consulted with a RD (Registered Dietitian) and she brings up a possible connection with FPIES. Here I am coming across this FPIES again. We continued reading the literature and connecting the commonalities. Have we finally found something that could finally explain what has been ravaging our son's digestive tract?
FPIES research and studies/what’s known:
Begin here for a Food Allergy and Protein Intolerance Overview:
1. Protein Intolerance. http://emedicine.medscape.com/article/931548-overview
In 2009, a comprehensive article on Protein Intolerance, gives the differentials for diagnosis (Celiac, EE, FPIES, Enteropathy’s)
2. Food Allergy: Review, Classification and Diagnosis.
In 2009, from Children’s Hospital of Philadelphia Division of Allergy and Immunology. Dept. of Pediatrics.
Then move on to FPIES study’s and research:
1. Clinical Features of Food Protein Induced Enterocolitis Syndrome. http://www.jpeds.com/article/S0022-3476(98)70222-7/abstract
In 1998 by Dr.Sicherer (Mt.Sinai, NY) wrote some of the early articles/studies.
2. FPIES: Clinical Perspectives
In 2000 by Dr.Sicherer (Mt.Sinai, NY)
3. Food Protein Induced Enterocolitis Syndrome caused by solid food proteins http://pediatrics.aappublications.org/cgi/reprint/111/4/829
In 2003 by Dr.Nowak-Wegrzyn A et. al.(Mt.Sinai School of Medicine, NY)
4. Food Protein Induced Enterocolitis Syndrome:FPIES Case Presentations and Management Lessons
In 2005 by Dr.Sicherer (Mt.Sinai, NY)
5. Food Protein-Induced Enterocolitis Syndrome: Consensus recommendations for Diagnosis and treatment.
In 2008 Japan study
6. Prospective follow-up oral food challenge in food Protein Induced Enterocolitis Syndrome
In 2009 Korean study
7. Food Protein-Induced Enterocolitis syndrome http://journals.lww.com/co-allergy/Abstract/2009/08000/Food_protein_induced_enterocolitis_syndrome.16.aspx
In 2009 by Nowak-Wegrzyn et.al (Mt.Sinai, NY). This is a follow up to 2003 published study by Dr.Nowak-Wegrzyn. Dr.Nowak-Wegryzn is in current practice at Mt.Sinai and cares for these children with FPIES.
8. Food Protein-Induced Enterocolitis Syndrome: 16-year experience
In 2009 Australian study
9. Rice: a common and severe cause of food protein-induced enterocolitis syndrome. http://www.fetalneonatal.com/content/94/3/220.abstract
In 2009 Australian study
10. FPIES- a Review http://www.allergysa.org/journals/2009/june/food-protein-induced-enterocolitis.pdf
In 2009, Australia (great article summary – 2pages)
Understanding FPIES (mechanisms, diagnosis and treatment)--If you’re still “hungry” for
1. Allergic Protocolitis, food –induced enterocolitis: immune mechanisms, diagnosis and treatment
In 2009 from Spain
2. A Consistent Pattern of Minor Immunodeficiency and Subtle Enteropathy in Children with Multiple Food Allergy. Article written in 2003 from the UK and offers additional clues to diagnosis: http://www.ncbi.nlm.nih.gov/pubmed/12915822
3. Above article commentated on and referenced in 2004 in Journal of Pediatric Gastroenterology and Nutrition:
4. Gastrointestinal Manifestations of food allergies in pediatric patients. http://www.ncbi.nlm.nih.gov/pubmed/16207693?dopt=Abstract
5. Cytokine Expression in CD3+ Cells in an Infant with FPIES: case report.