The Unknown and the What ifs of FPIES

I have always feared the unknown.  Anyone who knows me well, also knows that I hate the what ifs.  No matter what the situation is, I am always thinking about all the possible what ifs.  The unknowns and the what ifs of FPIES are extremely overwhelming.  I find myself thinking about B and her FPIES nearly all day long, every single day.  I'm always questioning what if this happens, what would happen if we try this, what should we trial next if she fails this food etc. 

I've recently (well, pretty much every day, lol) been talking to a couple of my FPIES mentors, and have come to a new question.  Do we even know what Brynn's TRUE baseline looks like?  I think she's the only FPIES baby that I've heard of that isn't on some sort of elemental formula.  When we trialed corn (kix cereal), we saw reactions within a couple hours and didn't push the trial any further.  I was so afraid that if we did, she would become sensitized to the corn and start reacting to the trace amounts that are in her current formula.  There is a formula out there (Similac Expert Care Alimentum Ready-to-feed) that does not contain ANY corn and we are now considering trying it.    Another FPIES mom mentioned that it's possible for her to have some underlying inflammation that is keeping her from being able to tolerate food trials--maybe that's why we are having all the fails?  I mentioned to her that even though she's probably not hungry, her bottle is the only thing that settles her sometimes and she said her son did the same thing and she learned that it was from the inflammation (the formula gives a temporary coating of her intestines). 

Back-tracking a little--we began a mango trial this past week. I chose mangos because I haven't heard of other's little ones that have reacted to them.  Her tastebuds appear to really like them...but, unfortunately, I'm not so sure her gut does.  (Insert huge SIGH here).  She's had disrupted sleep, a couple screaming fits, a questionable diaper and crabbiness today, and she was spitting up all day, which is something she very very rarely does.  We took a break from them today and I'm not sure if we will continue with them or not.  What if we give them to her tomorrow and it causes an extreme amount of pain??  UGH.  I am learning as we go here, but one thing I have already learned, is that there are an extreme amount of unknowns and what ifs with FPIES.  Not only do I want to become as knowledgable as possible for my little girl, but also for future families who have to endure this. 

Quinoa

We started a quinoa trial on Sunday.  We used the flakes and it ended up looking somewhat like oatmeal, but didn't smell/taste very good.  We decided to mix it with her pears and she gobbled it down and cried when it was gone!!  =)  It's so great to see her eating, but at the same time, it's frightening.  I'm so scared of a reaction. So many questions run through my mind for the next 2-3 hours...what if it's a full-blown reaction and she ends up in the ER?  What if she is in agonizing pain for hours?  What if she fails this and she has to go the next 2-3 weeks trying to heal her poor little gut?  On the other hand, I have other thoughts going through my head as well...what can I create with this food?  Can I make her some sort of finger food? Can I bake anything?  What about a birthday cake or a muffin? A bread? A treat? 
Sunday went very well, as did Monday.  Tuesday I got a call from daycare saying she just wasn't herself--no smiles, laughs, babbling...just pretty much "there".  She also had two questionable diapers; soaking through her onesie, pants, crib sheet, mattress pad....

Last night she didn't sleep well at all. She wasn't screaming in pain all night, but she was just restless and...well...awake.  And sleep disruption is definitely a symptom of a reaction.  We didn't give her the quinoa last night.  I got a call from daycare again today that she has had a couple more questionable diapers.  UGH.  I had such high hopes (again) for this trial--we would have been able to bake, have a cereal for breakfast etc.

So is this the start of a fail? Do we try again tonight? Maybe she's teething.  Maybe she's catching a bug.  Maybe maybe maybe.  It's so hard to decide if we press on with the trial or give up on quinoa.  It's all a guessing game with FPIES.  I don't think she's been in real pain yet, but I also don't want to push it too far and cause the pain.  UGH AGAIN! 

Another fail =(

We began a carrot trial yesterday.  FAIL.  About 2 hours after eating a teaspoon of the homemade carrot puree, she had horrible tummy cramps.  My poor little girl was in so much pain, I could barely hold myself together.  I was holding her on my hip and she was seriously arching her back to the point where her head was practically touching her feet (think gymnastics and making a bridge).  After a rough night of sleep, she did ok today.  She only slept a total of 25 mins all day and was more irritable than normal.  By bedtime tonight, she seemed to be back to herself. 

After her corn fail last week, I'm sure there was a lot of inflammation in her tummy.  We could have started a new trial too early, as some kids take up to 14 days to return to baseline.   The most important thing right now is to get her back to baseline, so we will stick to her 2 safe foods (pears, sweet potatoes) for at least a week, probably two weeks. 

I'm thinking about making an appt with the pediatric GI again (this time one that is familiar with FPIES) to see what he recommends...maybe doing an endoscopy to rule out anything else. 

I'm feeling very overwhelmed with all of this right now.  Someone posted a link to a corn allergen list and it pushed me over the edge...  check it out.  http://www.cornallergens.com/list/corn-allergen-list.php  Looking at this list (half of the things I can't even pronounce) makes me wonder how I am ever going to find her food to eat.  If she can't have anything that's on that list, we are going to be pretty limited.  As exhausting as all of this is, I'm really trying to stay positive...

Merry Christmas!!

I love Christmas--the music, the goodies, the family gatherings.  It's just such a great time of year and I can't wait! The kids are going to see Santa tomorrow and then the festivities begin!  Brynn has never opened a present before, so we'll see how that goes...I'm sure she'll like the paper and boxes more than anything!!

FPIES news:  After the sweet potatoes pass, we trialed pears, which was also a pass! She just loves them and she seems so happy to be able to sit by us at the table during dinner and eat too!  We've also noticed that she has been sleeping better at night...YAYYYYY!  Granted, I'm still pulling her into bed with us for portions of the night, but she is going a lot longer between bottles now.  She used to be up every 3 hours to eat and now she will typically have a bottle between 8-10, and then go until the morning when we get up for the day! 

A few days ago, we started to trial corn.  We started with KIX cereal and she totally enjoyed that too! She was a little weirded out by the texture the first time I put one in her mouth (they were cut in half), but after that, I couldn't put them in her mouth fast enough. She also loved pushing them all over her high chair tray (and floor of course).  Unfortunately, we decided to stop the trial after the first ingestion.  Later that night, she had a pretty questionable diaper.  The next day, daycare reported that she had another 2 questionable diapers and was very "off" the whole day. When I went to pick her up she just looked drained (even though she had just taken a 2 hour nap).  She had bags under her eyes, she was clingy and her bottom was VERY red and sore.  She also had 3 dirty diapers between 5-8 last night that didn't look so great.  Sometimes it's so hard to tell if it's the food or if she has something else going on (like teething).  Just to be safe, we stopped the food trial...if she returns to her normal, happy self (and better looking diapers), we'll know it's the corn.  If she gets her first tooth soon or continues the off-behaviors and questionable diapers, we will re-trial corn sometime soon.

I was so anxious for corn to be a pass.  It would open so many doors for my little girl.  She could have finger foods (kix, corn chex), but she could also have a hot cereal (corn grits).  I know it's awhile away yet, but I can't help but think of her 1st birthday and the fact that she may not get to have some sort of bday cake.  Another mom's blog has some great recipes to try though...one being a sorbet (so a safe fruit, sugar and freeze it in a cute shape like a cupcake or something).  I'm thinking about trialing another fruit and veggie (a berry and carrots probably) and then possibly quinoa (a pseudo-grain).  I am told (by some very knowledgable FPIES moms) that there is a quinoa flour and quinoa puffs too.  We could maybe make muffins for her with the flour and a safe fruit!! I'm getting pretty excited about quinoa as we speak!  Now I just have to find a store that has quinoa!  There is a Good Earth Food Co-op in the area, but I haven't been there yet.  Otherwise Trader Joe's is an option, but it's a haul to get there and I don't have a lot of time! 

Have a VERY MERRY CHRISTMAS! Enjoy your families and the time together!! (and the goodies!!)  =)

We have a safe food!!! =)

I am happy to announce that we have our first safe food! YAY Brynn!!  We trialed sweet potatoes for the last week and she tolerated them...and actually seems to really like them too!  She has been sleeping better as well.  I'm thinking that the sweet potatoes fill her up a little more so she doesn't have to get up for a bottle as often as she typically does.  (Thanks Brynnie, Daddy and Mommy really need the sleep!!!) 

We started a new food trial tonight..PEARS!  Wow, did she gobble them down.  I felt so bad, she wanted to have more so badly, but I just couldn't give her anymore.  We need to make sure they are safe before the full servings come along!  She seriously licked every drop off the spoon (and her face) and didn't spit a single drop out.  Man, I hope pears are a pass! 

She is still gaining weight like crazy.  I think we are going to need to move her to a convertable car seat soon.  She's definitely not up to the weight limit yet, but she is getting so long!  I have a feeling she'll be walking within a month or so too.  She climbs on everything, cruises from one piece of furniture to the next, and tonight she stood without holding on to anything!  YIKES!!  Love her!!!  =) 

And the official diagnosis is....

....FPIES to rice and intolerant of bananas and apples.  Rice has been her only full-on FPIES trigger so far.  The Dr said we will do an in-hospital food challenge with rice when she is 4 years old (IV in place).   Until then, she is to have NOTHING that contains any sort of rice...we will be making our own baby food as as many companies use rice flour as a filler/thickener.  She technically could have a full-on reaction to even a trace amount of rice...so even if she finds a grain of rice on the floor and eats it (I better start cleaning better...yikes, Cody gets rice everywhere)! 

The dr also gave us what's called an "ER letter".  Brynn will have one of these with her where ever she goes. FPIES is fairly rare and a lot of dr's don't even know about it.   The ER letter basically says "Brynn has FPIES, this is what FPIES is and this is what you need to do to treat her".  If she ingests something and starts to have a reaction, he said we need to immediately bring her to the ER to begin an IV.  Daycare will have direct orders to immediately call 911. 

One thing the dr said that really stuck in my head was that a lot of people look at FPIES as less severe then a normal food allergy (which they could go into anaphylaxic shock).  It is JUST AS SEVERE.  She is basically having an ana reaction....but it's in her gut.  It still can be a life-threatening issue if proper precautions/treatments are not taken.   

So, we will be starting food trials with her.  A trial will consist of having 1 food (starting with about a teaspoon) and gradually increasing it for approximately a week (or longer).  If no reaction, YAY--we have a safe food! We have trialed bananas, apples and squash so far.  I didn't give squash a fair shot, so that will be on our list to try again.  Bananas caused tummy issues (up all night screaming and arching her back etc) and apples caused a really bad rash on her bottom (almost looked like hives?) so they will also go on a try again later list.  HOPEFULLY, we will not have any more foods that go on the full-on FPIES list. 

He was impressed at how much weight she has gained recently (since we switched to formula) and she is growing like crazy now!  I asked him about her horrible screaming fits she used to have (the totally inconsolable ones for long periods of time), and he said it definitely could have been a sensitivity to what I ate (probably one of her trigger foods).  Being it wasn't directly ingested by her, it wouldn't cause an FPIES reaction. 

So we have a lot of label reading to do, but I'm praying that we have only this 1 trigger food and that she will grow out of it soon. I have many mixed emotions going on right now.  I'm happy to have the diagnosis after only a few months of suspecting it--not everyone has that same luck.  I'm sad and scared for my baby girl. I don't EVER want to see her have a FPIES reaction EVER again.  Poor thing.  But, we have the support of our family and friends and an allergist who is familiar with FPIES...and some wonderful moms out there who have been leading me into the right direction, so I'm confident that we can handle this with ease. And again I'm praying praying PRAYING that rice will be the only trigger food. 

Anxiety is building!

We have our appointment with Dr Helm (Allergist) next Tuesday.  I'm extremely anxious.  Brynn hasn't even been officially diagnosed with FPIES, yet, here I am, writing on a blog that has FPIES in the title.  I'm just so sure that this is what it is.  I've read so many articles, forums with other parents telling their stories and everything just sounds so familiar.

Pretty uneventful the past couple weeks around here.  We stopped all food trials to let her gut heal and to hopefully get a path to follow from now on from the allergist.  Brynn was pretty sick here the past 4-5 days. We actually had her in the ER on Sunday, as she had a 104 temp and we couldn't get it to go down.  I won't go into details about the ER trip, but let me tell you...I was NOT a happy camper.  Anyway, yesterday she seemed ok in the morning, so we sent her to daycare.  When I picked her up, she had a temp.  By the time we got home, it was up to 103 again, so I brought her to Urgent Care (our normal dr's office was already closed) and they gave her an antibiotic for possible Strep.  To add on to everything, right before I left to bring Brynn in, Cody spiked a temp.  He threw up once last night at like 10:30ish.  Went back to bed, woke up a couple more times, but never threw up again.  They both seem perfectly fine today now! What the heck?  I sure am glad though...

So now we continue waiting.  Hopefully, on Tuesday, we get some answers and get pointed in the right direction.  =) Wish us luck!!