Announcing The FPIES Foundation

Over two years ago, we began the heartwarming journey of expanding our family from 4 to 5. it was a time of excitement and anticipation. After Carter was born, we were soon pushed onto a different path entirely, the path of chronic illness, the path of FPIES.

It was a lonely, overwhelming and isolating experience. No one knew much about this diagnosis . Doctors couldn't offer us much help and we continued to watch our littlest boy suffer. Yet, through this maze, we found support and help from parents struggling with the same unexpected path. Together, with this amazing group of FPIES parents, a foundation has launched to make sure that no one is eve alone again in this FPIES journey, to spread awareness to doctors everywhere about the realities of this illness so that no child is ever misdiagnosed again and to give every FPIES child a voice. 

I want to thank you all for the support you have given us throughout the last two years. There are no words to express out gratitude for all you have done. We invite you to visit our website, our foundation, our hope.

To those of you who have found my blog because you were sitting at your computer searching for any link, any commonality that would help you find some answers, some guidance, some support; this foundation is for you. Thank you for inspiring me and reminding me why this foundation is so important. There is a support forum on the foundation website and I invite you to log on and connect with other families just like you.

I would like to invite all of you to join the forum. It is not just a place for parents, it is a place for anyone riding the FPIES rollercoaster, and I know you've all experienced the ups and downs right along with us!

http://www.thefpiesfoundation.org/

The Dyck Family: Eric, Rebecca, Tyler, Caleb and Carter too!

The Last Month

We have learned so much in the last month about Carter and his FPIES.

We knew he could not eat green beans, but we discovered that he cannot even touch them.  Green bean “juice” on his hands, hand rubbed eye, eye swelled up and had greenish discharge. Benadryl helped clear that up. Leads me to believe he may have an IgE allergy to green beans, but our local allergist does not have a test for green bean. Our only option is a 3 hour drive to Stanford.

Random rash all over his face, chest and back. Still not sure the cause. It could be the yummy Real McCoy’s Shoestring potato chips. I am still waiting for a call back regarding their cross contamination practices. Or it could be eczema. It has gotten much better, for now.

Skin Prick allergy test done for egg showed a reaction to the control, which is salt water.  The egg may have been a slight positive for an actual IgE allergy, but since the control reacted, the whole test is suspect. The only choice we have is to retest, but that’s more discomfort for Carter.  

Are we developing IgE allergies now? Will this be our next battle to add to this ever changing food war?

We are trying to get Carter to take a probiotic on a regular basis. Of course he does not like the flavor and I cannot find a way to make sure he gets all of the probiotic powder required for each dose. I am going to try to make homemade coconut milk yogurt, as long as this container of coconut milk does not have mold growing in it.

On the upside, I now know how to make Pumpkin pudding and Carter loves it! He has another food that he gets excited about and one that I know is safe. For every defeat, there is an uplifting triumph. 3 cheers for Pumpkin Pudding! Hip Hip Hooray!

Little Dried Up Bits of Evil AKA Raisins

Thursday, August 4 began like any other day, until I found Carter with a box of raisins. We know he can’t eat raisins because his body cannot break them down, but he’s never had a severe reaction. His mouth was full of those little brown things. I knew he had eaten some, but I had no idea how many. And now the waiting game began.

The rest of Thursday progressed without much notice. Friday morning started with a pretty normal diaper. There was one raisin incased in mucous. But that was it. I began to feel hopeful that this was a sign of his body improving and overcoming FPIES. Oh, how wrong I was! We stayed busy all Friday afternoon at my parent’s house.  We headed home around 2 pm and that’s when I noticed the first sign that something wasn’t right. Carter fell asleep in the car and lost all color. His face was pale and his lips were white, not their normal rosy pink. When I took him out of the car, his body was limp and he was hard to rouse. I assumed it was from a long fun filled morning and put him down for a nap in his bed.

He woke several hours later and although he was a little more cranky than usual, the evening progressed normally. There was an increase in his reflux, which we haven’t seen in months, but he didn’t appear to be in pain. He went to bed at 7:30 and slept peacefully until midnight. Shortly after I fell asleep, he began to cry. It was the cry that covered my body with goose bumps, the one that says, Mommy, something is wrong. I went in and found him lying on his side, screaming. His reflux was out of control; he was gassy and seemed to be having waves of severe stomach cramping and pain. He was clammy and cold, and he had that all too familiar reaction smell due to the increase in sweating.

Carter and I were up together for 3 and half hours. All he wanted me to do was rub his back. I couldn’t find a position that was comfortable for him. Every time I tried to hold him, Carter would squirm and wiggle and fight. There was nothing I could do to make the pain better.

The next morning, Saturday, brought a cranky little boy. The mix of disturbed sleep and pain made for a rough morning. We had a diaper FULL of mucous, and 2 more raisins.  Saturday, mid afternoon, Carter’s reaction symptoms took off. He had a screaming vomiting episode followed by a decrease in body temperature. He was 96 degrees and his normal body temperature is always 98.6. His temperature is always as normal as can be. He lost all color in his face and was cold and clammy. He cycled through this pattern all day. He had a pretty good night’s sleep on Saturday night, followed by an almost 4 hour nap on Sunday, his body’s way of trying to recover.

I went back and forth all day Saturday about whether to take him to the hospital, but as he reached the beginning of the downward spiral, he managed to pull himself back up again. It is no wonder that he slept for 4 hours on Sunday, his little body was exhausted.

So what does all this mean? Simply stated, it means that Carter went into the early stages of shock.  He never lost consciousness, but he displayed many of the signs of early shock: excessive sweating, low body temperature, lose of color, rapid breathing and cold extremities. It also means that his reaction to raisins has gotten worse, not better. His body has become more sensitive to these foreign invaders.

We learned something new through this reaction.  The onset of vomiting and shock doesn’t just start 2 to 4hours after the ingestion of a trigger; it can start very slowly, almost undetected and build up to 48 hours later.  Not only is this something new for us, but it is something relatively new in the FPIES world. But it did happen here, in our home, with our little boy.

DING!!

DING!! FPIES DONE! In the past week, I have talked to two different friends and fellow FPIES moms on opposite sides of the country. Both of them were told by medical professionals that FPIES ends at 2, so they just needed to bide their time until their child would be able to eat a normal diet. This train of thought is not in keeping with the latest medical research and information. There is no guaranteed age where FPIES magically disappears.  But if these medical professionals are correct, and not just sadly behind on their reading, then why are so many FPIES kids still reacting well beyond their second birthday?

Carter is 26 months old. He’s 2 years and 2 months old. We aren’t showing any improvement or tolerance for new foods.  And then it hit me, Carter’s FPIES timer must be broken!! I haven’t heard it go off, so that must explain why he doesn’t fit into the normal FPIES category. So I searched the internet for a new FPIES timer. You can find anything on the internet. No luck! It looks like they don’t make FPIES timers. So then I thought we could fix his because it is obviously broken. My husband is pretty darn handy. He can build computers, fix cars, construct gazebos; certainly he can fix a silly little timer.

Well, I can’t seem to find Carter’s FPIES timer. I’ve looked everywhere! It’s not in his bed or mixed in with the toys. It’s not in the car or the diaper bag. Perhaps I accidently threw it out with the thousands of diapers and formula containers. Maybe it got mixed up in the bundles of vomit soaked clothes and blankets. I might have left it at the hospital or the doctor’s office. That’s only 9 different lost and found boxes I’ll need to check.

Still no luck. No timer.

Wait, did you hear that? A DING! I am sure I heard a ding! Maybe it was the timer! It must be buried here in the couch cushions or hidden behind the pots and pans in the cupboard! Finally our FPIES journey is over! The timer is going off!!

Oh, wait, it wasn’t the FPIES timer. It was only the microwave. Looks like my coffee’s ready. It’s not the end of FPIES, just the beginning of my caffeine fix.

So, if you want to know when Carter will outgrow his FPIES, I can honestly say I have no idea. But if you see a timer laying on the side of the road, could you stop and pick it up? It might just belong to Carter or Sam or Brendan or Kara or Ellie or Hayleigh or Maya or Bridget or Gracie or Olivia or Bronsen or all the other FPIES kids who’ve reached their second birthday and have yet to hear the DING.