Global FPIES Day

Here we are folks, our first Global FPIES Day.  My awesome FPIES Jamberry nail wraps are on, I have a teal streak in my hair and teal pedicured toenails. The conversation, advocacy, education and FPIES awareness has begun.  Let's face it, it started long ago for my family and many families living with FPIES, but now we have a day to celebrate! Yes, celebrate FPIES! Why? You ask. Because those of us who live with this crazy thing everyday are ELATED it has a name and our child has a diagnosis . We are thrilled that we aren't alone on the journey and other families are experiencing the same things we are. We have confirmation we AREN'T crazy parents - that violent vomiting after certain meals isn't normal and it's way more than colic and my kid doesn't have a new "GI virus " everyday.  We are celebrating that more and more  people are becoming aware of FPIES due to grassroots efforts by those of us living with FPIES and The FPIES Foundation. More and more doctors are becoming FPIES wise each and everyday. There is  just so much to celebrate!

It's not been an easy month here for Jack and although not directly related to FPIES, it's sure made it very difficult for him while he has been fighting bacterial pneumonia and a viral infection.  I will write about this when I have slept more than just a few short hours.

So today, please update your Facebook status and let your community know it's Global FPIES Day. Send them on over to http://www.fpiesfoundation.org . Help educate and advocate for Jack and all his fellow FPIES buddies around the globe. Thank you!
http://fpiesfoundation.blogspot.com/2014/10/the-proclamation-for-global-fpies-day.html?m=1

Be well friends,
Kate

Closing Out The Summer

Each summer seems to go more quickly than the last.  It's hard to believe those of us here in the northeast will be pulling out our parkas and snow boots in just about a month and a half.

Our summer was busy.  We spent time in Michigan with family in late June and then in early August our Michigan family visited us here and we spent a week at a cottage on the beach.  Jack loved it! He ran in the sand, jumped in and out of the ocean and slept well to the sound of the waves crashing on the shoreline.

There was little food trialling this summer as we seemed to go from seasonal allergies into an upper respiratory infection to vacation then hand, foot and mouth disease to another vacation.  We were all set to restart out organic grape trial this week when he ended up with a terrible bum rash and sleepless nights, the first signs he's been "corned."  We have no idea what he got.  He's been in feeding therapy all summer which is awesome, he's made wonderful progress, however, he will now pick things up off the floor and eat them which he wasn't doing before.  He seems to prefer, lint and dust bunnies, ugh! As careful as we are though with the foods that Sean is eating, it is quite possible Jack got a Cheerio or something of the like.  Overall this would be considered a mild reaction, but a reaction nonetheless. So now we wait for his symptoms to disappear before trialing a new food.  It has to be a "clean" trial so we know if the new food is a true pass or fail. Oh the joys of FPIES...sigh.

In exciting autumn news, our family is participating in the FARE Walk on Sunday October 15, 2014 to support the Food Allergy Resource Exchange and we are on Team FPIES! There are 15 Million reasons to walk in the FARE Walk and Jackson is ours. We are all committed to finding a cure for FPIES and so many other life threatening allergies that our children (and adults) face. Please consider making a tax deductible donation in honor or in support of our beautiful boy.  Please see the information below and use that link (or copy and paste into your browser) to Jack's fund raising page and make that ever important and deeply appreciated financial contribution to our efforts to find a cure for FPIES! Thank you so much and Jack especially thanks you from the bottom of his heart.

 

Welcome! Thank you for supporting the FARE Walk for Food Allergies.

FPIES - "Food Protein-Induced Enterocolitis Syndrome (FPIES) is a type of food allergy affecting the gastrointestinal (GI) tract. Classic symptoms of FPIES include profound vomiting, diarrhea, and dehydration. These symptoms can lead to severe lethargy, change in body temperature and blood pressure. Unlike typical food allergies, symptoms may not be immediate and do not show up on standard allergy tests. Furthermore, the negative allergy evaluation may delay the diagnosis and take the focus off the causative food. Nonetheless, FPIES can present with severe symptoms following ingestion of a food trigger." Written in collaboration by: The FPIES Foundation Board of Directors and Medical Advisory Board

Food allergy is a life-altering and potentially life-threatening disease that sends someone to the emergency room every 3 minutes. With 15 million Americans affected, there are 15 million reasons to support this important cause.

Please join me in my efforts to create a safer world for those living with food allergies and to find a cure. I am participating in the 2014 FARE Walk for Food Allergies to help raise critical funds and awareness.

I need your support. You can join my team or make a donation to support my team, The FPIES Foundation team.

• To make a donation to my team, click the GIVE NOW button on the top right.

• To join my team, click the JOIN MY TEAM button at the top of the page.

By making a donation on my behalf, you will be helping FARE to fund food allergy education programs, advocacy and awareness initiatives, and world-class research.

It's time to Say FAREwell to Food Allergies, especially FPIES!

Thank you,
Kate, Heather, Jackson and Sean - See more at: http://www.foodallergywalk.org/faf/donorReg/donorPledge.asp?ievent=1102230&lis=1&kntae1102230=E9C2A997AF0046629D09532EE697073B&supId=410271346#sthash.GPhG38x8.HVSv0XLp.dpuf

Meet our buddy Wyatt

I am so blessed to have found a dear friend (actually many) on this journey though FPIES. Jessie is our 3 year old FPIES buddy Wyatt's mom. Wyatt is a very special, smart, tenacious, courageous, beautiful boy whom has one of the most difficult FPIES cases to date. It has also been revealed recently that he has some congenital heart defects that need repair sooner rather than later. We live about 2,000 miles from Wyatt and his family and I know for certain one day we will meet in person and our boys will enjoy a wonderful meal together. Here is Wyatt's story and you can follow Wyatt on Jessie's blog, http://hopeforwyatt.wordpress.com/

Meet Wyatt:

Wyatt was born on a beautiful June day 2 and half years ago.  He has been a fighter from his very first seconds. In the womb he fought to stay alive and grow, and in his first moments of life as a baby, he fought to live, and to breathe.  Wyatt was born without surfactant in his lungs to help them expand, and spent some time in the NICU getting help breathing.   After a scary week in the hospital, we brought our miracle baby home.  From day one, he was a screamer. He screamed all.the.time. You may think that I am exaggerating here, but I can promise you I am not.  We rocked him, we swung him, and he spent hours in front of the dryer in a vibrating swing because it was the only thing that helped calm him even a little bit.  I would wear him all day and rock and swing and bounce constantly to help him settle.  If I did the dishes, I would put him in the bouncer and bounce with one leg as I did the dishes so that he would just cry instead of scream until he passed out.  When I tell you that he never slept, I mean NEVER.   The doctor told me that he was colicky, and to give him gas drops and rub his tummy.  He would projectile vomit everything that went into his mouth. I was used to that, because his sister did that too, so I didn’t think anything of it.  When he would fall asleep, it was propped on my shoulder in a certain way, and he would moan and scream out in his sleep, if I laid him flat he would vomit and scream.  When he was 3 weeks old, he puked so much he was grey and lethargic and I knew something was wrong. I rushed him to the ER, and they told me that he had the flu.  When I told them that he hadn’t pooped for a week, they did an x ray to see if he had pyloric stenosis, which he didn’t.  They told me his body was just trying to figure itself out and he would be ok.  They ran an IV, and did a feeding challenge in the hospital, and an hour later, Wyatt puked all over the nurse, but they still told me he had the flu.  When I met with our amazing Pediatrician for a follow up after Wyatt’s ER visit, he told me that he felt like Wyatt’s symptoms were not the flu, but a dairy, soy, and protein allergy.  He gave us samples of 3 different formulas to try so we would know for sure.  The first one was a gentle formula to simply rule out just a harsh regular formula, and he had no change in symptoms; the second was a soy based formula to rule out just a milk allergy, but not a soy allergy.  We were staying at a friend’s house for the weekend when we tried that one and he puked all over their couch, and had the weirdest pale grey poop.  He screamed all night long, and wouldn’t let up, and I couldn’t even begin to comfort him.  I thought for sure they would kick us out of their house.  The last formula was a hydrolyzed formula, and by the second day, it was like I had a whole different baby.  It was night and day from the Wyatt I was used too.  He was still fussy most of the day, and he still screamed a lot, but he wasn’t puking like before, just more spitting up, and he slept a little easier.  We decided to start him on acid reflux medicine, because it was very apparent that he was struggling from some major GERD as well. We hoped that the combo would help.

Wyatt was still failing to thrive, but his weight plateaued instead of rapidly dropping, and we had hope that he would do better.  We were encouraged to try rice and oat cereal and add oil to his feedings so that he could gain weight.  As soon as we tried them, he was projectile vomiting even stronger, couldn’t poop at all for over a week, and was screaming for hours on end.  We tried everything we could think of and were so desperate.  Our pediatrician was a God send, because although he couldn’t explain it, he knew something was wrong. He had seen Wyatt screaming, puking, and being in so much pain. He had been trying to help us find a way to treat his extreme constipation, and was doing everything he could to get us into a GI in the city.  We were getting so desperate and Wyatt was getting so bad that we agreed until he could get into our pediatrician’s friend who was a GI at the Children’s Hospital that we would take him to another GI in Provo.  It was a nightmare. He assumed from the very beginning, even watching Wyatt scream and puke, and seeing me covered in vomit, and in tears and pleading to him in his office, that I was a nut job and wasting his time.  We trialed about 10 formulas under him, each worse than the last, and several foods.   

When Wyatt was a year he agreed to scope him and see what was going on.  After withholding the actual results and telling me I was just having post-partum and anxiety issues, I felt very strongly that we should not go back to him. After seeing his notes in Wyatt’s medical records, I thank God every day that I listened to that feeling.  By this point, Wyatt was a year old, and weighed 14 lbs.; he hadn’t even doubled his birth weight.    For his birthday, I followed all the advice given to us, I worked for days on a vegan gluten free cake, and coconut milk ice cream, and 4 hours after he ate it, and we celebrated him surviving his first year, he screamed and vomited so hard for so long that he passed out in my arms.  He screamed limp in my arms for 12 hours. I had no idea what to do; I had never seen him in so much pain before.  There were many moments that night that I cried along with him, it broke my heart in a way I can never describe to you.   That day, Adam and I knew we would not feed him again, until we knew what was wrong with him.

Three months later, we were able to get into the GI at the Children’s Hospital.  She was floored when we walked in.  Wyatt was in my carrier, screaming bloody murder; I bounced and swayed from side to side, and tried to talk over him so she could see what was happening. He could not calm down.  He was extremely constipated and his belly was swollen and in pain.  His bottom looked like hamburger and his cheeks where red and looked like he had been slapped.  His eyes were sunken and dark, and I will never forget the look on her face.  She knew something was wrong, but she didn’t know what.  Then began the tests.  She tested him for cystic fibrosis twice, duplicate stomach, a full body scan to see if his intestines and stomach were connecting, or if there was any kinking anywhere.  She tested him for pancreatic disorders, and gallbladder functioning, and everything you could possibly imagine, and then she tested him so more.  At that time, we learned that his left kidney was obstructed, and was only working at about 40%, and so we have had to add that to the list of specialists and things we have to keep an eye on.  Nothing came back abnormal. The only thing that looked off on the tests was that his white blood cell count would get elevated, and he showed blood in nearly every stool sample we brought in.  We saw an allergist, who tested him for tons of things, but only Eggs showed as a typical allergy.  The diagnoses that we received from the GI were, severe and complete protein intolerance, and “Mother Killer”, which is a diagnosis given to children that scream consistently for more than 8 hours a day.  Apparently 80% of mothers whose children fit that category either try and commit suicide, or suffer a severe mental break.  She was always very good to check in with me, and make sure I was doing ok, and called my family doctor to make her aware so that she could help us get home health, or respite care.  I always appreciated that, because she didn’t do it in a way that made me feel like she thought I was unfit, or was going to harm my child, but in a way to help me know I had support.    Under the care of the GI, we trialed more foods, and failed them so hard.  I couldn’t take much more, and we agreed to give him some time to let his gut heal.  She had hopes that we would grow out of it by 2, and we just couldn’t afford anymore ER visits, since we were averaging about 3 a month at that point. Wyatt was on 14 medicines at this point, we had trialed around 100 foods,  and he was sleeping about 1.5-2 hours at a time, and then up and screaming and screaming before passing out in pain and exhaustion.  It was miserable and there were days, I just would cry and cry because I couldn’t help my son.  I wore him all the time, because holding him close was about the only way I could get him to settle down, and just breathe.

During this time, our rock star pediatrician retired, and I was devastated. He was our biggest advocate, and saw us anytime I needed help.   The doctor that took his place meant well, but just didn’t know what to do, and just couldn’t help us.  Wyatt was hospitalized for a week because he had contracted croup, pink eye, RSV, Bronchitis, AND both viral and then bacterial pneumonia and was in terrible shape. This poor kid had no immune system and when anything was in the air it hit him hard. It was scary, and during that time we also learned that he had severe asthma, and it was during a reaction in the hospital we learned that he goes into bradycardia, has a low temperature, low blood pressure, develops an irregular irregular heartbeat, and struggles to breathe on his own.   Needless to say that meant we had to meet with cardio and have a bunch more tests done.  After that, I knew it was time to find a different doctor. I called our trusty family doctor that Adam and I both saw, and started once again to do some research.  One night, I typed in the same thing I had typed in a million times before, but must have typed it in a little different. I typed in delayed vomiting after eating, protein, and The FPIES Foundation website popped up.  The more I read, the more the tears flowed down my cheeks. I KNEW this was what was wrong with my son. I printed out everything I could find for our doctor’s appointment, and when I got the doctor’s office, I plopped a stack of papers down in front of her and said: “I think Wyatt has FPIES”.  Our doctor knew about him, and she knew what we had been through, and I knew in my heart, that even if she didn’t know what it was, she would fight for him.  She said, “I have never heard of that before, but we need to get him into someone who does.”  She encouraged me to just one more time try seeing yet another allergist and see if they could help.  So when I got home, I called a random allergist at Riverton Hospital and made an appointment, not knowing what would happen.  As soon as Dr. T walked in, I said,” I know you are going to think this is nuts, but I think Wyatt has FPIES, and I need to know if you can help me”.  Miracle of miracles, he knew what it was, and he agreed with me! Finally we had a name for what was happening to our son.  I took the info to our GI, and she agreed too! No one knew quite what to do to help Wyatt, he was the most severe any of them had known, and so they decided to scope him again.  He was scoped for the second time 10 days before his second birthday, and we were encouraged to trail grapes.  We feed him grapes, which he struggled with slapped cheeks, poo issues, and sunken eyes, but no vomit so we were encouraged.  We took a break for a couple days, and headed to my parent’s for his birthday, so excited that we would have something safe to feed him for his birthday.  He ate a handful of grapes for dinner, and 5 hours later, like clockwork, he lost it.  He screamed worse than his first birthday, and I finally had to take him for a drive so that he didn’t wake up the entire house with his begging screams.  It was terrible. Terrible.  We drove home the next day, and I took him to the Children’s hospital late into the night because he was alternating with screaming bloody murder and vomiting, and I just didn’t know what to do.  He was admitted after a ridiculous power play ER visit, and an x-ray that showed a severe bowel impaction.  They tried to push fluids, and did 3 enemas in which not even the enema fluid came out, and his BP was dropping super low. They suggested sending us home after fluids, and it would work itself out, but I refused. I insisted on a surgical consult, and when they came, they said, he needs surgery NOW.  10 days after his last scope and colonoscopy, with a full clean out, my baby had to have surgery because he had a bowel impaction the size of a baseball from GRAPES.   They placed and NG tube during surgery so that they could keep him hydrated and run some laxatives through it because of the pieces of impaction they couldn’t reach.  He stayed for another week in the hospital before he could come home.  We were told that we needed to mix his infant formula to a higher calorie level since he wasn’t an infant anymore and needed more calories, and the second we did, he spiraled. His once semi-safe formula was making him drastically ill.  He could not stop puking, and was pooping mucous blobs and blood.  They switched him to the only formula we hadn’t tried, and the only one that was corn free, because we learned the upping his kcals, had sent his corn sensitivity into a full blown allergy, and was making him incredibly ill.  He started to have black blood, and I was told to bring him to the ER, because he had an upper GI bleed.  He had the most frustrating week long hospital stay, with the most frustrating ignorant doctors, that “googled FPIES” and told me that if he wasn’t puking blood he wasn’t sick, but apparently pooping blood is perfectly acceptable.  The doctors working the GI floor wouldn’t call Wyatt’s doctors that actually knew about FPIES, and so I had to call them and demand help, and we finally got to be released.

In November this past year, we were able to pull some strings and get into THE chronic FPIES doctor in Denver, and he confirmed that Wyatt has the most severe case he has seen in person, and one of the most serve cases of FPIES he has ever heard about.  He confirmed all the things we were experiencing where FPIES. The behavior, the ASD and SPD symptoms that came when he was reacting, the shock, and times he coded with surgery and during severe reactions, the lack of sleep, the low immune system, the screaming, vomiting, diaherrea and obstipation (extreme chronic constipation), all of it. Every single thing.  There wasn’t much he could have us do that we haven’t already done, but he validated everything that had happened and we were going through.  He tested him for a couple more things, and gave us a few more things to check with his next scope at 3 years.  He instructed us to do gut rest until at least 3, and possibly 4, so that we could give him gut a chance to heal.   He told us that there is something else happening along with the FPIES, which we, and all our doctors have suspected from the beginning, and promised he would help us find out what it was.  We have no safe foods right now, beyond formula, and that is really hard.  Since Wyatt is on the rarer side of this rare disease, there is less chance that he will outgrow this, but hopefully with time, and gut rest, and patience, we will be able to find him some safe foods to eat.

In the months since we went to Denver, Wyatt has been really sick. He has been chronically failing his formula from the beginning (hydrolyzed soy and dairy) which is probably what gave him his third upper GI bleed in 6 months, and in true 2 year old fashion has snuck some little bits of food that have made him incredibly ill.  He got a yeast infection right before Thanksgiving that spiraled into a full blown very serious systemic yeast infection, and landed him in the ER last week (his second ER visit of the year by the way).  He sleeps a little better now, about 4 hours at a time. He has major poop issues, and I’m afraid he will until the end of time.  FPIES reactions make him lose his little vocabulary, his eye contact, cause major sensory issues, and he regresses a lot in developmental areas.  It takes him weeks and sometimes months to recover and to get his words back, and his eye contact.  He hurts basically all the time, and yet, he smiles, and he laughs, and he loves people so much.  He is so in tune to how I feel, and still cannot sleep without a hand on him.  He is my miracle baby, and he is my life. His life has changed mine. And although it has been the hardest thing I have ever had to do, to watch my baby boy, the child I fought for, struggle, and hurt, and cry, it has changed me in all the best ways.  He has renewed my hope in life, love, and my faith in God.  He has changed me, I cannot think of any bad ways I have changed through this. He has brought out the very best in me, and makes me want to be a better person, more kind, loving, and patient. And when I think I cannot go on, I feel the strength in his eyes, and see his determination to just live.

I know that we have a fight ahead of us, and I know that it will not be easy, and I get scared that it will be harder than even this is, but I know, that if he can do it, I can.  He is my angel on Earth, and my hero.  He has shown me what strength is.  Wyatt is amazing, and I feel it such an honor to be his mom.

Through this incredible journey, I have been blessed to meet some incredible moms, and their amazing children, and it has been such a blessing to learn from them, talk to them about things no one else understands, and problem solve with them. I have very tight knit group of moms that have become my people, and although I have never, and may never meet them face to face, I feel like I know them better than nearly anyone. We celebrate each victory of our babies together, and pray together in the really tough and scary moments.  They are incredible, and I am thankful to know them.  I am grateful to the FPIES Foundation for being the people that started it, and gave us answers after to searching for 2 very long years, they changed everything for us, and I love those moms as dearly as I do my own sisters.

I have such a full and overwhelmed (in the best ways) heart, and a deepened love for my family through all of this.  They have been my strength, and unwavering lighthouse in this storm. My parents have dropped everything at a moment’s notice countless times to be with us, to help us, and watch Nana so that we can be with Wyatt, and my mom has listened to me sob on the phone, when no words would come, and held my hand, and just been there.   We have been so incredibly blessed with the people God has placed in our lives at just the right moments, so that Wyatt could be ok, and grow, and learn, and hopefully someday be a normal boy, and eat food.

We're back!

Hello Friends,

It's been far too long! Since my last post we have dealt with seasonal allergies, colds and either an upper respiratory infection, reactive airway disease or both.  It's been a rough few months health wise for him and that has pushed off any food trialing. Yesterday we began the organic red grape trial.  So far so good!

Our vacation to visit family in Michigan went off with out an FPIES hitch.  So very grateful for this.  Our family was wonderful.  My sister-in-law and brother-in-law made their home very safe for Jack with his food allergies and my 12 year old nephew and 8 year old niece were nothing but helpful and cautious with food while we were there.  Love them dearly.  We also found out that Jack and Sean are terrific flyers! Whoo hooo, we love JetBlue! They moved our seats so Heather and I each sat with a baby on our lap and an empty seat next to us - awesome!

Our last day of vacation was stressful, Jack woke up coughing, (he had been coughing and had a runny nose - we thought allergies) and his cough was different than when he went to sleep.  He was "junky" and we soon realized he was having chest retractions.  Off to the University of Michigan Mott's Children's Hospital we went. Here it is, my nightmare.  I am away from home, 900 miles away from our beloved medical team for Jack and he's in need of quick medical attention. My wife cannot come with me, there is no one else to watch Sean. I page Jack's GI and let him know we have to go to the ER.  He calls back and instructs me to get to the ER immediately if he's having chest retractions.  The good news is we are already half way there. We get there, a valet parks our rental car and we go right in - there is no waiting.  A nurse comes right out from behind the desk and asks me what's happening.  I give her the run down and before I can say he has FPIES, she's reading the medical alert bracelet on his wrist and reading it out loud to the other nurse at the desk. I give them our name and the security guard my license and he makes a quick ID badge and we are off to a room - literally in 3 minutes of waking in the door. So we get to the room with the nurse and she says, "what is he allergic to?' and I say corn, corn derivatives, green beans and acetaminophen. "What is his FPIES reaction?" I tell her and think, hmmm, well no one in an ER has ever asked me that before. The resident comes in. I tell him the story, he says, "don't worry, we all know about FPIES, one of the head physicians here has a child with FPIES."  HOLY SMOKES, are you kidding me? An entire staff of people who know what FPIES is and don't look at me like I am nuts when I say he can't have ANYTHING with corn. The resident then says, "all corn products is gonna be tricky."  I said, trust me, I know.  I say, he will have to have a Rocephin injection if he needs an antibiotic and if he needs and IV no lactated ringers, just saline. Ringers Lactate solution is saline and dextrose, CORN. He nods and says, "OK let's take a look and see what we are dealing with here." That's it, no jockeying, no accusations that I am trying to play doctor (this has never happened to me personally but it's a common occurrence for families with children who have FPIES.)

They then say he either has an URI (upper respiratory infection) or reactive airway disease which is really asthma but they can't call it asthma until there is a pattern of illness and the child must be over 24 months old. They take us right to x-ray.  This was hard for Jack.  They had to put him in a special child that literally hold his arms over his head, his waist is Velcroed in and his legs are locked down.  He also had a soft chin strap to keep him from moving his head.  He screamed like I've never heard before but they got a super x-ray because he filled those lungs with a ton of air! Negative for pneumonia. But he has streaking, this is common in an URI or reactive airway disease. We go back to the room and they give him a neutralizer treatment, he HATES it.  The screaming helps bring the medicin into his lungs.  This happens 2 more times in the next 1.5 hours. He also had a steroid shot.  All the while I am praying he's not going to react.  The nurses have called down to the pharmacy and they say there is nothing corny in the shot or the nebulizer liquid. The doc prescribes an inhaler. I post this on FaceBook and another FPIES mom messages me immediately and says, "be carful, albuterol inhalers can be corny." I get on-line with my iPhone and sure enough ethanol is the propellent in the inhaler.  So we make a new plan.  Jack gets a home nebulizer machine. His GI has been updated and consulted while we are there, he thinks Jack would be OK on the inhaler because the ethanol is now synthetic but he agrees with me that the day before we fly home is the wrong time to try it. Jack is cleared to fly and we leave the hospital about 6 hours later.

We are so grateful for the phenomenal staff at the U of M Mott's Children's ER who took such good care of us while we were there.  Our worst fear was simply a bump in the road.  We will take him only to Mott's if he ever needs any medical attention while we are in Michigan visiting our family.  What an amazing safety net.

Next month we head to a beach house here for a weeks vacation with the same wonderful family we visited in Michigan, we can't wait!

Thanks for your patience, I plan to blog much more regularly.  I will say though I am a mom of 21 month old twin boys, time to myself is rare and precious!

3 Stellar Food Companies

I want to talk about the food industry and FPIES. Having a child with FPIES to corn has been an incredibly eye opening experience.  Jack is GMO free and organic and while I am thrilled to be gaining so much knowledge about food and how it is cultivated and manufactured in this country, it's also appalling. However, that is a blog topic for another day. Today I want to give props to 3 amazing companies that have risen to the top for our family.

The first one is © Cream Hill Estates. © Cream Hill Estates is a company in Montreal, Quebec, Canada.  They produce incredibly pure rolled oats, oat flour and whole oat kernels called groats. Jack can safely eat their rolled oats. (They are the only Cream Hill Estates product we have tried so far, but I am in no way worried about anything they produce being an issue for him.)

"© Cream Hill Estates Purity Guarantee

We guarantee that our oats are pure and free of cross-contamination with wheat, barley, rye, triticale, kamut, spelt, corn and other grains that are closely related to wheat.(Kosher Certified and Gluten Free.)

We protect and check our oats at all critical stages:

• as seed
• at planting
• while growing in the field
• at harvesting
• during transport
• in storage
• during processing and packaging

We certify purity through seed lab and R5-ELISA gluten test results."  And they also have a three step purity process for checks and balances. http://www.creamhillestates.com/en_purity_process.php
© Cream Hill Estates

The President or Vice President of the company responded to me within 24 hours about the purity of their product and allergen guarantee. I cannot say enough good things about this company.  I want everyone who likes oats to support this amazing organization by purchasing their product.  We buy in bulk from Amazon.com and you should too!

The second company is © Cheecha Puffs of Calgary, Alberta, Canada.

© Cheecha Puffs are Potato Puffs that we also order in bulk on Amazon.com

They produce 5 gluten free flavors and Jack can safely snack on the original flavor. They are not misted with sunflower oil and only sprinkled with sea salt.  

"© Cheecha Puffs are "Gluten Free* • Nut Free • Cholesterol Free • Trans Fat Free • MSG Free • Non GMO • Dairy Free • Egg Free •  Soy Free  •  Vegan

Gluten Free CheeCha Potato Puffs were developed at the special request of our gluten intolerant customers who still love to snack. Our Gluten Free Puffs have always been cooked and bagged on a separate line, and batch tested to ensure no cross-contamination. Now, the gluten free puffs have their own separate cooking room, dedicated exclusively to producing the purest of gluten free snacks.
All CheeCha Puffs begin with wholesome potato flour and potato starch. They are then air puffed using to release the natural potato flavour, lightly misted with sunflower oil and sprinkled with the finest seasonings."

© Cheecha Puffs customer service is awesome.  They are knowledgeable, kind and even offer free trial samples if you ask nicely. ;o) Let me tell you that both of my boys LOVE their Cheecha's!

Please take a moment to check out the © Cheecha Puffs website and try these yummy snacks and buy some for your family. http://www.cheecha.ca/about-cheecha-puffs-low-calorie-snacking/ © Cheecha Puffs.

The third company is © Ancient Harvest out of Boulder, Colorado, USA and we buy on Amazon.com, yes, they get a lot of our business too! © Ancient Harvest produces many great products including super grains, polenta, and quinoa flakes.  Each product is produced in separate facilities so there is no cross contamination between quinoa and the polenta for example. Jack can have the quinoa flakes.

"100% Whole Grain Hot Cereal Flakes

Good mornings become exceptional ones when you cook up a bowl of our gluten-free, whole grain Quinoa Hot Cereal Flakes. Sub them in for oatmeal or wheat-based options and jump-start your day with complete protein, great taste and filling satisfaction.

Ingredients: Organic Whole Grain Quinoa Flakes." © Ancient Harvest

Once again this company has A+ customer service.  The woman I spoke with knew the products inside and out and the importance of allergen free environments and immediately alleviated my concerns regarding potential for cross contamination with corn during any part of the production and packaging process. © Ancient Harvest

I highly recommend checking out the © Ancient Harvest website and consider ordering any one (or several) or their delicious and health conscious products.  You will not be disappointed.

http://ancientharvest.com/products/hot-breakfast-cereal/quinoa-cereal-flakes/

These 3 companies have my utmost respect and my business.  Not only do they produce healthy, clean, and allergen friendly products but they understand the importance of quality customer service.  I can't tell you how many other companies I have had to engage regarding "corntamination" as we call it and have had just a horrendous experience.  As anxiety producing as food trialing is, with these 3 companies and their products it was less stressful because we knew we were starting from a clean place.  It makes a huge difference as a parent of a child with a serious and potentially life threatening allergy. 


Disclaimer: This writer does not guarantee that anyone with corn allergies or other food allergies will be safe to eat the above mentioned foods.  Each company's guarantees are posted at each respective website.  Contact company representatives directly for further product information.

3 Passes in 3 Weeks!

Jackson is on a roll! He’s passed organic pears, Ancients Harvest Quinoa Flakes and finally we had a clean, no teething Cheecha Puffs trial and they were a pass too. We are very excited about this as Cheecha Puffs are really the only textured food he can tolerate and HE LOVES THEM! Jack is still only really eating pureed foods at the age of 17 months.  This is not uncommon in FPIES children so on Monday we go back to our feeding therapist Jean in the big city.  Jean is great and has lots of great suggestions.  Jack has made progress since our last visit with her and they say slow and steady wins the race right?

Jack and Sean recovered from that terrible stomach bug and this week we are battling nasty colds, welcome spring – UGG. FPIES kiddos seem to get slammed when illnesses creep into the family.  Since the cause and general diagnostic guidelines are still being debated it’s unclear why illnesses are so tough for them.  They do know that FPIES is a t- cell response disease so the immune systems of these kids must often be compromised in some way. I don’t know, I’m certainly not a doctor but I listen to and talk with other moms of children with FPIES and we all seem to be saying the same things.

My ongoing life’s lesson this last month, it’s so important to have a sense of humor. FPIES of course isn’t funny, nothing about food allergies of any kind is funny at all, however my life with twin 17 month old boys – it’s pretty hilarious most days! The boys make me laugh all the time.  They are getting silly, coy and performing for attention. Being a mom is such a blessing.

So once these colds are gone it’s time for another food trial for Jack.  On the table is kale, grapes and raspberries, all organic of course. Not sure what order we will go in or if something we take precedence like a safe probiotic which I am currently researching.  If anyone out there in blog reading land knows of an excellent corn free, dairy free, gluten free infant/toddler probiotic, I am open to suggestions.

Thanks for reading friends! May all of your hearts be full, always.

Spring, here we come!

Spring has returned. The Earth is like a child that knows poems.

—Rainer Maria Rilke

Here we are again, the last days of winter (I certainly hope this is the case from the frozen north east.) The days are longer the sunlight is brighter and feels so much warmer.  What a difference a year makes?  Last year at this time we had a screaming, inconsolable, gassy, “colicky,” baby on our hands. It would take almost 10 more weeks to get the diagnosis of FPIES.

This year we are working through other obstacles like food trialing. Good news is that Jack just passed organic pears! Yes! A new food pass is such a huge victory against this disease.

Jack and his twin brother are 17 months on Sunday.  Could we nearly half way through this disease that is FPIES? Could Jack be one of the lucky ones who outgrows this by age 3? We remain incredibly positive and hopeful.  Each new food pass brings us closer to our wish for him.

We have planned our first vacation as a family of 4 for the first days of summer.  It involves staying with family, visiting many friends and the boys’ first airplane ride and staying away from home as toddlers. Should be exciting! The stress is already beginning.  My sister-in-law is amazing and has offered to pre-shop for Jack’s special food requirements.  This will make things so much less stressful as we arrive, so grateful.

We will be looking to the wonderful FPIES community for support this season as we rapidly approach the year mark of our journey with FPIES and no longer have an infant anymore but a full blown toddler (two full blown toddlers, one with FPIES and one without.)  This comes with many new exciting experiences and adventures and well as challenges.

Spring is here, rebirth, growth, progress and change is in the air…

Rare Disease and Families

Today is Rare Disease Day and its purpose is to raise awareness about rare diseases and how they impact people’s lives. http://www.rarediseaseday.org/article/what-is-rare-disease-day  FPIES is considered a rare disease and sadly there is little research being done to learn about it. Since this disease and many others are misunderstood and follow a constellation of symptoms that vary from child to child there seems to be a terrible trend happening with diseases like FPIES, EoE, Mast Cell and Mitochondrial Disease.  Parents who are saying no to “standard” treatments like an endoscopy, steroid use and a delayed vaccination schedule are being looked at as “medically endangering” their child. Sometimes state child protective services are being called in to investigate the health and wellbeing of the child. I am a veteran social worker, I carry the highest licensure possible in my state and I know how this works.  There is a need to protect children and families from abuse and neglect and there is certainly and illness that is real called Munchausen by proxy syndrome (MBPS) however it too is rare.  I can’t tell you how many FPIES parents are or have been investigated by CPS because their children are FTT (Failure to Thrive) or can only eat a handful of foods or who can only handle pureed foods at age 3 because of oral aversions or because they say no to medical tests that require sedation and those results may or may not impact current treatment planning. Parents are being accused of making up or exaggerating the symptoms or reactions of their child or children. Our beautiful boy has FPIES, our family knows exactly what it’s like to live it 24/7/365 and our doctors don’t.  They don’t see the neurological side effects our son has or the vomiting to a state of shock he has, the lethargy, allergy shiners, slap cheeks and the list goes on. Don’t get me wrong we have a wonderful team of specialists that Jack sees and they have been supportive and very helpful.  It appears at least for now we are in the minority and this really isn’t the case for many families dealing with FPIES and other rare diseases. 

Dealing with a child who has a rare disease is incredibly lonely and scary.  With FPIES, simple things bring fear and anxiety.  New food trialing with Jack leaves the whole family walking on egg shells.  Jack is doing beautifully now as far as eye contact and socializing.  He is playing well and interacting more with his twin brother.  He is seeking us out for comfort and his smile; it is luminous and melts our hearts. He is laughing and giggling like crazy! There is no diarrhea, no vomiting, no lethargy, allergy shiners or slap cheeks. He’s happy and content most of the time.  Can you blame us for not wanting to trial anymore foods for a LONG, LONG time? Not wanting to gamble and risk sickening our child by giving him say a banana or pork or broccoli? Yet the pressure is there to add more foods to his diet from his doctors.  Why are the doctor’s opinions more valid than ours as the parents? We know our baby; we know what happens when he fails a food and it’s horrendous.  What is the rush to add more food to his diet? He’s got oral aversions so we are desperately trying to work on increasing texture too. Does it really matter if he eats peaches before he’s two? 

We are thrilled with our GI and Allergist and they partner with us but I still feel the pressure to increase the number of foods in his diet. I am not sure how much of this is real or imagined. I do know that when we visit them in a few weeks we may or may not have a new food pass from the last visit we had.  Jack’s stomach flu thwarted our pear trial.  We hope to pick back up the beginning of next week again.  Doctors and parents need to work together and listen to one another. It’s a partnership and one side is not more dominant than the other however the final decision always goes to the parents. This is about the best interest of the child, it’s not about ego or protocol, and it’s a case by case basis, what works for Jack may or may not work for the next patient.  I hope whatever is happening with rare diseases, doctors, parents and CPS ends soon.  These investigations are causing undue trauma, stress and anxiety. Do doctors need to be mindful of MBPS, yes of course but the number of reports to CPS is disproportionately high as far as I can tell in families where rare diseases exist. CPS needs to focus their time and attention where it is most needed, with kids and families who are dealing with sexual abuse, physical, mental abuse, domestic violence and neglect (among many other things.) For the most part (because nothing is ever 100%) families living with rare diseases are just trying to do the right thing with no road map, and no framework to go by to keep their child safe, healthy and pain free.

The Stomach Bug

On Friday February 14, 2014 our baby boy Sean began with diarrhea and few short hours later he was vomiting. 24 hours later it hit Jack with a vengeance, then 5 hours after Jack I was hit and 15 hours after me Grammy was down. The babysitter got it too. Can I tell you I haven’t been this sick in almost 20 years?! It was horrendous.  I have no idea how my wife was able to dodge this bullet, but she did. 

By Sunday evening I was feeling “OK” and Sean seemed a bit better, Grammy was down for the count. Jack was lethargic, still vomiting, very fussy and not producing enough wet diapers.  We spoke with the nurse on call at the pediatrician’s office and at 5:00 pm Momma and Jack went off to the local ER. This is the first time Jackson and Sean have had a severe illness. I am a stay at home mom and because of Jack’s FPIES we have worked very hard to keep them healthy and away from major illnesses.  Heather and I were ready to engage our special emergency treatment plan for Jack.  This includes a letter from his allergist Dr. Wayne Schreffler at Mass General Hospital and a Corn Allergy Emergency Medical Instruction Template given to me by a friend who works in the medical community who also has food sensitivity reactions to corn and other foods.

https://docs.google.com/document/d/1yjBl51k7n1h8B7cJr6lnAh10C76YWK3ZUPdCCcG0nJs/mobilebasic?pli=1

Once again I will say, almost everything has CORN! GAH! It’s so incredibly frustrating. Jack could not have the numbing agent when he had his IV places because it has 3 ingredients in it with CORN. We were not interested in finding out while Jack is puking his guts out if he’s going to have a skin reaction or break out in hives etc., to an injection filled with corn derivatives.  Heather presented all of the documentation in the triage area of the ER and she cannot count how many times she had to remind everyone that he could not have anything with corn.  “Oh, we will just give him Zofran now under his tongue to stop the vomiting.” “No! He cannot have ANY oral medications that are not compounded specifically for him.” “We will start him on Pedialyte.” “NO, he cannot have regular Pedialyte, we have to make it at home with his safe CORN FREE sugar and salt.” “We will give him an IV with saline and dextrose.” “NNNNNNNNNNNNNOOOOOOOOOOOOOOOO! HE CANNOT TOLERATE ANYTHING WITH CORN IN IT AT ALL! NONE! He can’t eat it, drink it, take it in his veins, have a suppository with it or have an injection of it under his skin. NO CORN, ZERO! It gets very frustrating and you cannot let your guard down for one second.  After an IV bag of corn free saline Jack comes home and sleeps from 11:30 PM to 5:00 AM.  He wakes in a good mood and is playing a bit. He gets fussier as the day goes on and he can’t seem to settle for a nap but he does a huge, great poop so we think he’s on the mend. I speak with his GI, Dr. Qian Yuan at MGH and let him know what’s happening with Jack.

9:00 PM Jack begins to vomit uncontrollably, I am holding him and I can hear it coming again.  I throw the towel on the floor and turn him towards it while he is retching from his toes. My heart is breaking. It’s a ton of throw up and I look down and there are brown mucous chunks – blood. I check his diaper and it’s dry. I page Dr. Yuan, he says get to the ER. I load him in the car and we go. When we get there I pull out all of Jack’s paperwork again. He gets the big red band that says allergic to corn and acetaminophen. I go through the FPIES story again and again – the receptionist, triage nurse, nurse, ER doc – no one has ever heard of FPIES. One again I refuse any oral meds, suppositories, everything but a simple saline IV.  The nurse we have is amazing. She scans and copies Jack’s forms and reads all of them. She tells me her daughter has colitis and can’t have dairy or soy.  She tells Jack exactly what she is doing and when it’s going to hurt. She’s very gentle and professional.  Jack is already traumatized by his last ER trip and he moans and cries.  Once the corn free Zofran is administered in his IV, he falls asleep. The ER doc informs me he is going to contact the in-house pediatrician, she arrives about 30 minutes later.  I begin my spiel about FPIES and she knows about it!!! She was a resident at MGH and knows Jack’s GI!!! She gets him on the phone immediately and they begin the transport discussion, she feels Jack’s needs will be better served on the pedi GI floor at Mass General.  I am exhausted and still recovering from this bug too and at this point as it’s about 1:00 AM.  Heather agrees to come to the hospital and ride with Jack in the ambulance. She arrives and they load into the ambulance at 3:00 am.  I get home, shower and talk to Heather. I fall asleep at 5:30 am and am up with Sean at 7:30 am. I talk to Heather and then make Jack’s safe pedialyte and head into Mass General.

Jack is miserable. He hates being in the hospital and he cries anytime someone medical looking comes into the room. He’s hungry, exhausted and just wants to be held or lay down in the baby jail crib (mostly just held.) I hold him while Heather sleeps.  The doctor arrives and says they feel Jack doesn’t have a major GI bleed.  It was most likely a small tear in the lower part of the esophagus that was already weak from the excess acid he already has due to his FPIES.   The vomiting over all those hours and days was just too much.  He’s starting to take watered down formula.  He is going to stay another night to make sure all is going to stay down.  His labs have come back again, normal. We are relieved it seems to be a minor issue but we are in one of the best hospitals in the country on a GI unit and they still suggest options for Jack that contain corn. They want to give him oral Nexium when we leave (he’s had it in his IV,) guess what? Yeah, it’s made with corn.

This hospital stay highlighted a few things for Heather and I. The first is that Jack is medically fragile when it comes to FPIES and getting a GI virus or bacteria. It hit him incredibly hard.  He got much sicker and it was a lot quicker than any of us. It also highlighted how little the BEST medical professionals in the country know and understand about FPIES.  There is so much education, advocacy and research that needs to be done. Lastly once again Jack is a tough, tenacious little boy.  He defiantly suffered some medical trauma that we will work through together. Jack inspires us to be better and do better. We will not fall victim to FPIES, we will rise up in pure defiance and do everything we can for our son and to make every medical professional we encounter, FPIES WISE.