Finding other FPIES families to connect with

Hello!  We have an almost 2 year old girl that was diagnosed with FPIES at 5 months old after several reactions to baby food. She also was diagnosed with colic at an early age, which we now know was her reacting to breast milk. 

My hope is to connect with a family who is also navigating this. We live in the Denver area. I have so many questions. How do people deal with a child with FPIES and a sibling that doesn't have it? Our FPIES kid wants to eat what others have, especially her older brother. 

She also also hasn't slept a full night through since she has been born. Continues to wake up at least once and requires more milk before sleeping again. Continues to take Elecare formula at almost 2. 

We feel like we navigate this essentially by ourselves. 

Any help or advice would be greatly appreciated. It's hard to talk to even family and friends because most of them don't know what we actually go through. 

 

Original Post

Hi.  Your post brings back vivid memories.  Our child is now 8 and his last FPIES reaction was around age 3.  I would like to give you hope that you can manage this.  Our son has multiple food intolerances as well and patch testing with the allergist was so very helpful.  It is a lot of work, but I kept a daily log of food intake.  Kenny was allergic to dairy, corn and type 1 anaphylaxis to soy in the very beginning (everything they make even "hypoallergenic" formula from.  We met with GI to discuss tube feeding, but they were just going to give him a corn based formula that we tested orally - that made him sick.  Therefore, I made the very difficult decision to continue avoiding all allergens and continue pumping (2 yrs. 9 months).  Husband was on-board too so we would watch and report any symptoms that were concerning and then look back 24-48 hours re: what he ate.  Kenny would also eat a food and state it was "Yummy" but then avoid / decline further offers.  This was always suspect.  A good dietician is key as well so that you'll understand how to look for hidden allergens in food.   Around 8 months he was hinting at "failure to thrive" and that made me get very serious about tracking what foods as there turned out to be many more allergens than initially tested for.  The beauty in it was as we pulled away more food, the better he looked.  Working full time and pumping was a toll on me.  By the end, the milk I was producing wasn't enough to sustain him and we opted to have him eat the 2 safe foods since his growth was back on target.  Costco bacon (I know - chemicals....but it was what didn't make him sick) and yams were the only 2 foods that didn't cause a reaction.  We got to the point where he looked great and then slowly introduced foods.  I documented 72 reactions from different foods.  Slowly over time things got better.  He is now over 4 feet tall and 82 pounds.  Attends a charter school (everyone packs their own food) and it's small - where they can keep a good eye on them.  We taught him from very young re: his allergens so that he can advocate for himself.  In re: to FPIES, its a tough one to know if he's outgrown.  So far we continue to avoid his allergens - and he looks great.  As the seasons change, his body rejects foods he has tolerated throughout the spring / summer. I know now that this doesn't mean he's lost them forever, but that it waxes and wanes.  I hope this helps.  It's easier said then done, but take it day by day or it's easy to feel overwhelmed.  And know that what you are living today, most likely will get better (eventually).   We have accepted the fact that this is probably a way of life for us - but we have no choice but to make the best of it.  I'd be happy to share what else we have done that has eased the way.  Just let me know.  We are just outside of Anchorage, AK.  I have only recently discovered a portable oven that plugs into car outlet with an adapter from a  company called HotLogic.  We can now heat his food up on the go.  Restaurants here  won't let us heat up his food when we go out to eat (liability of cross contamination).  You can heat food at home and keep it warm in this thing as well.  Sorry for this to be so long.  I wanted to reach out and let you know you are not alone in this journey.

Jacki posted:

Hi.  Your post brings back vivid memories.  Our child is now 8 and his last FPIES reaction was around age 3.  I would like to give you hope that you can manage this.  Our son has multiple food intolerances as well and patch testing with the allergist was so very helpful.  It is a lot of work, but I kept a daily log of food intake.  Kenny was allergic to dairy, corn and type 1 anaphylaxis to soy in the very beginning (everything they make even "hypoallergenic" formula from.  We met with GI to discuss tube feeding, but they were just going to give him a corn based formula that we tested orally - that made him sick.  Therefore, I made the very difficult decision to continue avoiding all allergens and continue pumping (2 yrs. 9 months).  Husband was on-board too so we would watch and report any symptoms that were concerning and then look back 24-48 hours re: what he ate.  Kenny would also eat a food and state it was "Yummy" but then avoid / decline further offers.  This was always suspect.  A good dietician is key as well so that you'll understand how to look for hidden allergens in food.   Around 8 months he was hinting at "failure to thrive" and that made me get very serious about tracking what foods as there turned out to be many more allergens than initially tested for.  The beauty in it was as we pulled away more food, the better he looked.  Working full time and pumping was a toll on me.  By the end, the milk I was producing wasn't enough to sustain him and we opted to have him eat the 2 safe foods since his growth was back on target.  Costco bacon (I know - chemicals....but it was what didn't make him sick) and yams were the only 2 foods that didn't cause a reaction.  We got to the point where he looked great and then slowly introduced foods.  I documented 72 reactions from different foods.  Slowly over time things got better.  He is now over 4 feet tall and 82 pounds.  Attends a charter school (everyone packs their own food) and it's small - where they can keep a good eye on them.  We taught him from very young re: his allergens so that he can advocate for himself.  In re: to FPIES, its a tough one to know if he's outgrown.  So far we continue to avoid his allergens - and he looks great.  As the seasons change, his body rejects foods he has tolerated throughout the spring / summer. I know now that this doesn't mean he's lost them forever, but that it waxes and wanes.  I hope this helps.  It's easier said then done, but take it day by day or it's easy to feel overwhelmed.  And know that what you are living today, most likely will get better (eventually).   We have accepted the fact that this is probably a way of life for us - but we have no choice but to make the best of it.  I'd be happy to share what else we have done that has eased the way.  Just let me know.  We are just outside of Anchorage, AK.  I have only recently discovered a portable oven that plugs into car outlet with an adapter from a  company called HotLogic.  We can now heat his food up on the go.  Restaurants here  won't let us heat up his food when we go out to eat (liability of cross contamination).  You can heat food at home and keep it warm in this thing as well.  Sorry for this to be so long.  I wanted to reach out and let you know you are not alone in this journey.

Hello Jacki! 

Thank you So very much for this reply. It wasn't too long of a post at all. I greatly appreciate it. I know there are kids in the Denver metro area that have this but connecting with people who deal with this is difficult, mostly because it's so rare, I think. I have not had many people to talk about this with who really have lived it. The scary throwing up episodes. The fear in your child's eyes when they are sick. The fear in their eyes when they look at new food. My daughter would typically get sick at night before bed. She was terrified to go to bed. We struggle even now and she just turned 2. She hasn't slept all the way through the night but a maybe three her entire life. I don't know if this is typical or just my daughter's fears. She has recently been doing better with food trials and currently has 15 safe foods! This is amazing! We still use Elecare Jr Formula. We have had to use it since she was 4 months old. Doctors said she had colic when she was 6 weeks to 4 months but we quickly realized it was her FPIES and reacting to my milk. I tried adjusting my diet but nothing helped and we had to switch her to the elemental formula. 

One major problem we are trying to figure out is our daughter is our youngest of 2. My son does not have FPIES. When we feed him she wants all the food she sees others eating. At times cries and cries. We try our best to explain it to her but she is 2 and reasoning isn't always an option. Have you experienced this with your son and if so, did anything help? we teach her safe vs. not safe but that doesn't always cut it. 

Again, thank you for reaching out. It does give me hope that things can get better and easier. I will remain hopeful and appreciate all your help. 

~Amy

 

Hi,

Amy- I totally understand your situation.  Wish we lived closer to Denver!

I have a question for Jacki- My son also has FPIES reactions to corn and soy with an intolerance to dairy (as well as a lot of other FPIES food allergies too numerous to list.)  I have been exclusively breast-feeding/pumping for 18 months.  My son had an adverse reaction to Elecare Jr.  We were testing Neocate Jr., but unflavored didn't work due to taste preference (no medical reaction - but then again he never drank more than an ounce).  Now, we are about to try the flavored ones.

After 2 yrs and 9 months of breastfeeding (which may happen to me), did you ever find a hypoallergenic formula that worked?  How did he get similar nutrition to "dairy"?

We have about 15 solid foods at this point- which is a success for us.  But, I'm worried about the "milk" issue.

Thanks!

-Jess

Jess,

In 9 years we have never found a milk substitute.  He drinks water and there is one juice I have found that does not have citric acid in it  I make him strawberry shakes (strawberry, water and sugar).  "Tea" water and sugar.  

My allergist explained to me that milk is for baby cows (not humans) and the calcium is an additive and can be found in other sources.  When he was 2 years and 9 months, the nutritional specialist and GI doctor explained that he would be able to get enough calories from bacon, yam and water to sustain himself.  It sounds crazy to write this now....but in lieu of a tube feeding with a substance that he would only react to, this was worth a shot.  Shortly after age 3 he gained banana.  It was / has been a very slow road to progress.  Although he is able to do a lot more now, although still restrictive enough we can't risk eating out.  

Rice milk would be the closest chance we have but he doesn't tolerate sunflower at this time.  Other brands have derivates of corn in them.  He's also reactive to coconut and almonds.  

As long as you are having progress regarding height / weight and your child is happy - I think you are on the right path  I did find a calcium supplement from GNC - Calcium Citrate 1000 mg.  He takes a 1/2 tab (500 mg) daily as well as Vit D from NOW, probiotic Floragen4kids, and yummy bears organic complete multivitamin.  These products have been tolerated very well by him.   I met with a couple of dietician's who reviewed what nutrition he was getting and then helped me know what vitamins / minerals we needed to focus on.  One was particularly great with helping me come up with creative ways to cook.  For example, once he gained rice and tapioca - I'd buy the tapioca rolls / wraps and fill them with rice and bacon and now whatever else he can tolerate.   Advocate for you and your child.  Sometimes doctors and etc. may not know your needs and I want to empower you to speak up.  Tell them if you feel like you are at a loss with creativity and making food fun.  I still have days when I struggle and have a silent pity party.  But then, I remember where we came from and I start to feel blessed again.  There is no other feeling on earth though when you feel trapped in a situation where only time, having hope / pray for things to get better.  

Amy,

Our child would wake up at 1 am every night.  It was the witching hour.  It didn't matter if I put him to sleep at 11pm or 7 pm.  I don't know how or why, but it happened!  It improved when we discovered other unknown allergens (food diary / reactions)

In regards to others eating - my heart sinks when I see Kenny looking at food he can't have.  To this day I try not to enjoy what I am eating too much as it is just hard to celebrate when your child can't have any with you.  We were lucky in that Kenny seemed to understand that it was the food making him sick.  We are at a point now where we all eat what is safe for Kenny.  It makes cooking easier too (not having to cook  bunch of different meals).  When he was younger, we did use the TV / iPad as a distraction (either something fun + / or educational).  Good, bad or indifferent, it got us through.  

Maybe there is an opportunity for you to be the creator of a support group in your area?  The allergist maybe can put up a flyer in the office to direct folks to you re: email and then maybe try for a small gathering.  When our son was young, we had such a thing in our area.  I found it very helpful.  We'd get together at Bouncing Bears or Coffee shop with a play area.  That is where a gal shared a birthday cake recipe for me that I still use to this day.  I am not much of a baker and was just learning how to substitute egg and different flours.  Also, one of the Allergist once a year meets at a local coffee shop for a very informal sit down where people can ask all kinds of questions that we don't think of during our office visits.  

 

Thanks for your reply Jacki.  We'll keep up the hard battle.  It is good to know your son can thrive without a "milk" and that things get better with age.  We also have food randomly fail that has been tolerated for awhile, which makes food testing difficult and confuses me (and the doctors.)    

He is a happy little guy though.  He does sleep the night as long as I give him a later night snack- his diet isn't very "filling."  He only tends to wake up if he's hungry or sick.

We have safe foods that turn on us too.  For us, it's the change of seasons.  Fruits not as tolerated in the winter.  Things get better in the Spring here.  I have heard of the philosophy that we should be eating food that is "in season".  We never used to have fresh cantaloupe in the winter . Now we have the luxury of having everything at our fingertips thanks to shipping / exchange.  

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