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.

Tummy

I was making dinner last night and the Caleb was sitting across from me at the island eating some carrots. Carter climbed up into the other stool and asked for a snack.  As he was munching on some sweet potato chips, Caleb asked me if Carter could have a carrot. I explained, once again, that carrots aren’t safe for his little brother. Carter turned to me and said, “No. Tummy.” I dropped my spoon. Carter has never said anything about foods not being safe for him, although I seem to be constantly telling him that foods aren’t safe.

I asked Carter if he could eat the food sitting on the counter. “No. Me. Tummy,” he said again and pointed his little finger at all the food I was using to make dinner.  It was a bittersweet moment for me. My eyes were filled with tears as I hugged my littlest man. He has finally made the connection that some foods aren’t good for him.  In a way, I felt relieved. He knew that this was unsafe food for him. We have worked for months to get him to understand that we were not withholding food to be mean, but rather to keep him safe. Even now, I get teary eyed. This was such a milestone moment for us and one more positive step to keep his tummy safe.

FPIES or 2??

FPIES or 2? This is our newest battle. New behaviors pop up and it has become so hard to tell whether they are developmentally appropriate or a sign that FPIES is at work. When do I worry and when do I let it go? When do I correct the behavior and when do I cuddle it? These are behaviors that are not normal for Carter. We saw a lot of these as a result of internal pain that he wasn’t able to express. Maybe now he’s just experimenting with self expression.

·         Screaming

·         Hitting

·         Randomly saying “Owwie”

·         Constantly saying “No”

·         Refusal to sleep

·         Laying on the floor curled up in a ball

·         Not wanting to eat

·         Wanting to have his blankie and bapee (pacifier) constantly

·         Being Argumentative

·         Needing my full attention

·         Violent and Random mood swings

These could all be the actions of a 2year old trying to figure out his world and find his place in it. They could also be signs that there is something happening internally. Am I setting up a future filled with up hill battles because I am not being firm enough or consistent enough? Perhaps. Should I know the difference between a 2 year old tantrum and cries of pain? Probably.  But my mommy instinct is tired and I can no longer view Carter’s world without my FPIES glasses on. It is a part of him and I cannot separate the two. He is growing in spite of FPIES.  He is happy despite his FPIES. It is always there, and maybe I should be strong enough to separate the two, but maybe it just isn’t worth it.

Everyday, Carter says a new word. Everyday he shows us something new about himself. He’s even showing interest in potty training and telling us when he needs a diaper change. He has come so far in the last month.  In spite. Despite. Because of.  With.  And that is what truly matters.

Cast is Gone!!!!

The cast is gone!! Carter went back to the doctor for a check up x-ray on his arm and a new cast, since he threw up all over the other one.  Well, after less than 3 weeks, the Doctor said Carter’s looked great and he didn’t need the cast anymore!! It was perfect timing because we were headed to the beach for 7 days and casts and sand don’t mix! Carter was so happy to have his arm back. It was no longer the boo boo arm!

We spent 7 wonderful days at the beach, enjoying the coastal air, Nana and Papa and all the family memories that we will cherish forever. Carter got to dig in the sand and jump in the waves. He became such a BOY over that week. He left as a toddler, maybe even a little on the baby side, and he came home a BOY. Independent, Stubborn, Determined. No longer content to watch life from the sidelines, he must be in the action.

And in case you were wondering, there is no fear of slides. That little man ran right over to the first slide he could find at the park all by himself. WHEEEEE!!!!

FPIES and Good Morning America

FPIES awareness is happening, today!! A story just aired this morning on Good Morning America about another little boy, Landon, who also has FPIES. It is a great piece and it really shows the struggles that both the families and the child deal with everyday. I would like to extend a big thank you to Fallon and her family for pushing through and helping to show the rest of the world what goes on in our house everyday.

Carter was so excited while he watched. He sat on my lap and pointed to the screen saying "More baby like me". He was clapping when he saw the blueberries and strawberries. Please take 5 minutes and watch this video.

Parents Limit Child to Less Than 10 Foods Due to Rare Allergy Video - ABC News