Maybe it isn't FPIES after all....

I'm in a weird place these days.  It's like all of a sudden I am doubting everything that has happened the last year.  We are in such a good place with Cutie Pie's FPIES that it is making me think that maybe, just maybe, it has all been a coincidence.  Is that possible?  Maybe all that baby spit-up was actually just spit-up.  Maybe those puking episodes were just a fluke.  Maybe all that night waking/crying was just from teething.  Maybe I'm just crazy and have been stressing myself out and dragging CutiePie around to doctor appointments and slapping food out of her hands and pulling pieces of crackers out of her mouth for nothing.  Maybe she really is just a "normal" baby.  Maybe.  Or maybe we just are managing it well right now.  Either way, I am happy to be in a good place.  CutiePie is sleeping all night in her own bed as long as she has two paci's and her pink kitty blanket.  She is gaining weight now that she is getting her breastmilk bottles fortified with formula (according to our scale at home she has gained 1/2 a pound in the last month!).  She is even starting to eat some real foods.  Not much, but definitely better than a couple months ago!  Today for lunch she ate some shredded cheese, a couple bites of chicken lunch meat, and a couple bites of fresh peaches.  For her, that's a feast!

This week we started a wheat trial - scary stuff, but like I said, I'm in a comfortable brave place right now!  CutiePie doesn't have a good track record with grains, but I wanted to make sure I did a wheat trial before I wean her off my milk.  Right now we are on day 3, and so far so good.  We've been using Matzo crackers to trial it (only ingredients are organic wheat flour and water.  Have I mentioned how much I love Jewish foods?!!?).  I'm not sure she's really eaten enough to get a good enough feel to call it a pass yet - and it's only been three days, so there is still plenty of time to fail.  But she's still sleeping, still having normal diapers, still not crying/screaming in pain, so I'm thinking we are headed in a good direction!  I have visions of giving her pancakes topped with real butter.  Cheese and crackers.  Bread.  I feel like if she does pass wheat she will be able to have a "normal" looking diet.  Even more normal than big brother's diet was like at her age (he was allergic to eggs, milk, and peanuts).

Now if I could just get her to EAT those normal foods, we'd be in business!!

Dairy is a......

PASS!!  WHOOHOO!!

It's been a week or so since I last posted because it has been a happily uneventful dairy trial.  I was so certain dairy was going to be a fail and I had braced myself, but it never happened.  Cutie Pie is getting a scoop of regular ol' Similac formula in her bottle twice a day and doing just fine.  She drinks it, she enjoys it, and she does great with it! 

I almost feel like I am a mom to a "regular" kid.  Feeding Cutie Pie has all of a sudden become so much more fun.  Earlier this week I made her noodles (Ge-Fen potato pasta, but they look, feel, and taste like the regular stuff) and then I thought "hey, I could add butter to these!"  It was exciting.  Of course, Cutie Pie didn't actually EAT the pasta with butter, but she could have if she wanted to!  She is, however, enjoying shredded mozzarella cheese.  Only mozzarella - apparently cheddar is evil and she expresses her distrust of it by immediately throwing it on the floor and giving me dirty looks if I attempt to put it on her plate.   I even gave her a glass of chocolate milk one night for dinner.  Again, she didn't actually drink it (well, she sipped some out of her cup and the spit it right back out) but she COULD have it if she wanted to.  Now I just need her to WANT to eat.

The downside of adding formula in her bottles is that it seems to make her fuller than just breastmilk.  From what I understand, this is a totally normal thing.  However, she is now down to only four bottles a day, which is only 20oz of breastmilk (plus 2 scoops of formula, so the equivalent nutritional addition of 4oz). I can't decide if I think it is better for her to get 20oz of breastmilk + 4oz of formula, or 25oz of breastmilk.  Part of me says screw the formula, breastmilk is waaaaaaaaaaay better, but the other problem we were running into is her iron levels were still on the low side at her last check-up and we decided to cut out her iron supplement.  Since we cut out her iron drops her whole attitude has improved.  She's sleeping 10-11 hours straight at night consistently plus taking a 3ish hour afternoon nap and she is generally just more agreeable during the day.  Those iron drops were apparently really causing issues in her tiny body.  So I think I will just keep up with the formula in the bottles to get some more iron into her little body.  Plus, since I am able to freeze an extra 5oz of milk a day my freezer is filling up pretty fast.  I've donated my freezer stash several times this past year (I think it totals around 1500oz) and it feels good to know my milk is helping to feed other hungry babies!  I'm teaching Cutie Pie to share early. ;) 

Up next on the food trial agenda is pineapple.  I'm sure she isn't going to really eat them, but with some canned fruit being packaged in 100% pineapple juice, it would be nice to have something like a simple fruit cup that we can pack for on the go snacks.  Again, not like she would actually EAT the snacks but at least she would have that option. 

Dairy, Day 1

We've decided to bite the bullet and jump into a dairy trial with Cutie Pie.  Momma is TERRIFIED.  We've been talking about it for a while and the last two weeks I've been trialing dairy in my diet (oh sweet glorious dairy) and it is going great!  Cutie Pie is still sleeping well, playing well, and symptom free!  WOOHOO!

What finally pushed us over the edge to try it with her was our lately pediatrician check-up.  Cutie Pie is at 19lbs 12oz which is only the 30th percentile for weight.  At her four month check-up she was in the 90th percentile.  That is a BIG drop.  And since she isn't doing well eating her real foods, our pediatrician suggested that we try adding a scoop of formula into her bottles of breastmilk to try to up the calories and nutrition she is getting.  Hopefully that would also help with her anemia, so it sounded like a good thing to try.  Instead of just jumping to the elemental formulas, we figured we might as well just try out good ol' milk-based Similac.  I'd much rather spend $25 for a can of formula instead of $80 if we can help it.....

Yesterday we went for it.  At around 4:30 she had 5oz of breastmilk mixed with half a scoop of formula.  She drank the whole bottle, so that is good (at least we know she actually got some to her tummy vs what we encounter when we try to give her solids!!).  Right about two hours later I had a very grumpy girl on my hands.  She was crying, wanting to be held, and just in a bad mood.  But, no vomiting, no diarrhea, no rashes, etc.  After a while she perked back up and was fine the rest of the night.  It could have been so many things that were making her mad, and then she slept for a whopping 12 hours last night (that NEVER happens), so today it is on to a full scoop of formula in one of her bottles.  Eventually we will try to make it up to a scoop in each of her bottles (she gets 5 bottles a day, so 5 total scoop would be the equivalent of about 10ounces of extra formula in her belly, or about 200 calories). 

Our pediatrician also told us that at this point he isn't terribly worried about her having trouble eating and swallowing foods.  Obviously it is an issue because her weight is dropping off, but as far as developmentally he doesn't usually worry until around 15 months.  So when we go back in October we will re-evaluate and then possibly refer her to speech or occupational therapy to help her develop more muscles in her jaw.  Until then we will just keep working hard to get her to eat the few things she can!!

In other news, Cutie Pie is TALKING!  She has her first real, understandable by everyone word.  It is.... drumroll please...... baby.  She crawls around all day saying "Oh baby!"  It is the cutest thing in the world.  She's also developing a form of "look" and "this" except it sounds more like "oook" and "dish".  Forget momma and dadda - we don't even get mama and dada babbles.  Of course, Big brother gets "buddabuddabudda."  ::Sigh::  this girl has a serious case of misguided priorities!

Birthday Bonanza!

Cutie Pie's birthday was a BLAST!!  My little girl turned one - I can hardly believe it.  Where did the last year go? 

As a last minute addition, Cutie Pie's mamaw decided to come up for the weekend and bring along Cutie Pie's uncle and a few of her cousins, so we had quite the full house to celebrate.  My goal all along was to make everything we had at her party FPIES friendly, and I'm going to be quite vain for a moment and talk about how amazing everything was.  Delicious.  There were hardly any leftovers - and considering four of the guests were picky eaters between the ages of 11 and 13, I'd say delicious would be a unanimous descriptive for the food.  And then there was the cake.  I ended up deciding against the watermelon "cake" that I originally planned and created a coconut macaroon cake with chocolate ganache frosting.  It was amazing.  It tasted like one giant mounds candy bar.  Incredibly sweet and chocolaty and delicious and messy.  We got some amazing photographs of one intensely chocolatey Cutie Pie.  I cried while taking the pictures because they were pictures I never thought I'd get to have from her first birthday.  What did we eat you ask?  Well let me share some pictures and recipes!  These were all definitely keepers!!

First up: 

Coconut Chicken Nuggets

I overheard Cutie Pie's uncle (age 11) tell someone else I had dipped the chicken in sugar.  He could taste it.  They did have a slightly sweet aftertaste that was really quite nice.  I made two huge cookie sheets of these nuggets and I think I was left with about four at the end of the party.  

Ingredients:

*I'm guessing on the measurements.  I'm more of a pinch-of-this, handfull-of-that kind of cook*

Boneless, skinless chicken breasts (I had two big packages) cut into chunks

1/2 c Coconut flour

1 c unsweetened shredded coconut

coconut oil

4 eggs

1/4 c coconut milk

1.  Preheat oven to 350 and lightly coat cookie sheet with coconut oil (I use a pastry brush)

2.  Mix eggs and coconut milk in a small bowl.  (I really didn't measure the milk - just poured some in until it looked like the right consistency to coat the chicken)

3.  Combine coconut flour and shredded coconut in another bowl.

4.  In small batches, dip chicken nuggets into egg mixture and then bread with coconut mixture and place on cookie sheet, making sure to spread out as much as possible.

5.  Bake for 20 minutes.  

Fruit Kabobs

 

1.  Cut up safe fruit.  Put on a stick.  We did watermelon (cut into E's and 1's with cookie cutters), peaches, blueberries, and raspberries.  

We also had safe potato chips and a cold green bean and potato salad from this recipe which even my granny, a self-professed green bean hater, enjoyed. 

But then there was the big finale:  

Coconut Macaroon Cake with Chocolate Ganache Frosting

(adapted from a recipe by François Payard)

  

 This stuff was RICH.  And in now was was it a low-calorie, low fat food.  The coconut milk I used has 22grams of fat in one serving, and there were 3 servings in the can.  That's not even including all the sugar and chocolate.  I'd be afraid to know the actual nutritional content for this delicious wonder-food.  

Ingredients:

1 2/3 cups coconut cream or 1 can GoldenStar brand coconut milk  (if going for the coconut cream, get a can of full-fat coconut milk and let it sit in the fridge overnight to seperate and gently scoop the cream off the top.  If I were you, I'd just go for the GoldenStar brand.  I found it at Wal-Mart in the Asian food section)

1 bag Enjoy Life Chocolate Chips

coconut oil

4 eggs

1/2 tsp salt

1 1/2 cups sugar

10oz unsweetened grated coconut (I found 5oz bags at Kroger, so 2 bags was perfect!)

1.  Heat coconut cream in a saucepan until barely boiling.  As soon as you see the first bubbles, take the pan off the heat and add the whole bag of chocolate chips.  Mix until smooth.  Cover and refrigerate for at least an hour.  It would probably be better to go more like 2-3 hours.

2.  Preheat oven to 350, line jelly roll pan with parchment paper and then coat paper with coconut oil.  

3.  Prepare a double boiler.  (This really isn't hard.  Just put an inch or so of water in a saucepan and get a good heatproof bowl that will sit on the top without touching the water.  I use a round pyrex bowl).  While the water is heating, mix the eggs, sugar, and salt until smooth.  

4.  Set bowl over water and wisk until egg mixture is warm to the touch.

5.  Remove from heat and beat until the mixture has tripled in volume (about 5ish minutes). 

6.  Fold in all but 1 cup of the grated coconut.  That extra cup will be used as a garnish.

7.  Spread coconut mixture onto the pan in as even a layer as possible and bake for 20-25 minutes.

8.  When cool, flip cake onto a parchment paper lined work surface.  I then used the top of a cup to cut two round circles for the layers of Cutie Pie's smash cake, but you could do the layers however you want.  For the everybody cake I used two big rectangles.  

9.  Use the refrigerated ganache to spread between the layers and then to top the cake.  Press remaining coconut onto the sides of the cake and refrigerate until fully set (mine sat in the fridge overnight).  

It sounds pretty complicated, but in all reality it wasn't that bad.  I've said it before - I am NOT a chef and just look at how much Cutie Pie enjoyed it:

It was a lot of cooking to get everything ready, but we had a great time.  I just still can't believe my little Cutie Pie is already a year old.  Time needs to hurry up and slow down already!  It doesn't seem like a year ago I was bringing home a not-so-tiny 8 1/2 pound newborn.  One year, a million questions, a hundred frustrating days of trying to figure out this FPIES thing later I have one beautiful, stubborn, happy TODDLER!  AHHH!

The Allergist Drama Continues...

My last post was about how annoyed I was at our allergist.  Well today, the drama thickened.  I got home from taking Cutie Pie and Big Brother to a baseball game (Have you ever taken two small children to a baseball game alone?  One that contains free ice cream and candy?  No?  Well try to imagine the state of my nerves by the time we got home....) and innocently checked the mail.  I saw I had a letter from the allergist's office.  The last time we went he kindly wrote a very nice letter to our pediatrician about the things we had discussed and the current plan of action, so I thought this new letter might be interesting considering I don't think he heard a word I said at our last appointment.  I was right.  I'll just let you enjoy the drama and read it yourself.  I'll put my comments in red.

Dear Todd, (Seems like he should address our pediatrician as "Dr." but whatever)

I wanted to update you on Cutie Pie.  She continues to be breast-fed but has tried some solid foods.  Her mother says that Cutie Pie does much better when she (the mother) avoids dairy, corn, soy, peas, rice, oats, sweet potatoes, and quinoa in her own diet while breast-feeding.  Currently, her mother describes Cutie Pie as a very picky eater who primarily eats watermelon, avocado, potato and chicken with each meal.  (This paragraph wasn't so bad)

Physical Exam - on exam she is happy and healthy appearing and has a normal HEENT and clear lungs (Amazing how he could tell this by never coming closer than the door of the exam room.  He must have super-sonic hearing to hear her lungs over by the exam room door).

Diagnosis - 
1.  Peanut allergy
2.  FPIES - rice creates severe reactions but other grains have not been fed directly to Cutie Pie (except he misspelled her name).  However, when her mother eats corn, oats, or quinoa Cutie Pie has significant problems.  It is unlikely she has FPIES for all these foods but since they seem to bother her we will not advance them just yet.  (Except that she has been fed oats and quinoa and both caused an FPIES reaction.  Corn causes vomiting through my milk which sounds like FPIES to me too.  No mention of any other trigger foods.  If he listened to a word I said or read the paperwork he photocopied and put in her chart he would have known this.)     

Plan - at this time I recommend the following dietary precautions.
1.  Strict avoidance of all peanut and tree nut products.
2.  EpiPen Jr available for potential IgE mediated reaction to peanut.
3.  Continue breast-feeding for as long as desired (No mention as to what to wean her to.  At the appointment he told me there was no need for me to breastfeed her and I needed to wean her to cow's milk)
4.  I instructed her mother to cautiously introduce cheese and other cow's milk products such as yogurt.  She will also try to advance soy, beef, and turkey in Cutie Pie's diet.
5. At follow-up in 6 months we will discuss advancing other foods.  Until then she will avoid rice, sweet potatoes, corn and other grains such as oats and quinoa.

I will keep you up to date with any significant changes.  Thank you for the opportunity to consult in Cutie Pie's care.

Sincerely,
Dr. I-Never-Listen

I just don't know where to go with this.  Should I reply back to the allergist?  Just drop-it?  Find a new doctor?  I feel the need to write some snarky letter to him, but I'm thinking maybe I should wait until I'm not so irritated so maybe any type of reply would be more level-headed.  But then again, when it comes to my kids I'm a bit of a mama bear anyway so any reply will most likely be snarky. 

Worst $40 Spent Ever

Cutie Pie had her check-up with the allergist today.  It's been six months since we've seen him and a LOT has happened.  I've always had a lot of respect for him, and we've been patients of his since Big Brother was nine months old and diagnosed with multiple food allergies.  I've sung his praises to anyone who wanted to listen.  He's never treated my like a crazy mom - even when I was convinced Big Brother was developing new allergies.  I've recommended him to lots of other local (or semi-local) FPIES moms.   

Today it was all I could do to just stand up in the middle of our appointment and walk out.  What a joke.  First off, our appointment was at 9:30 in the morning - one of the first appointments of the day.  Somehow they were already half an hour behind schedule, so I ended up sitting in a room that was about 12 square feet with two small kids.  I was already irritated by the time he came in.  And then he opened his mouth and it became very obvious that I was there to teach him about FPIES, or at least what FPIES is like for Cutie Pie.  Pretty much our entire appointment was me telling him what we had done and where we wanted to go from here.  I told him how Cutie Pie has completely refused any food from a spoon since her quinoa fail.  I told him that we were having a hard time getting her to try new foods.  His response?  Puree some of the new food and mix it in with the things she likes to eat.  Um.....were you listening when I said she didn't eat purees?   Then I explained how she pretty much survives on my breastmilk and a couple bites at each meal and how the only four foods she actually will eat are avocado, watermelon, chicken, and potato.  His response?  Well go ahead a trial dairy because she is almost a year old and you don't need to breastfeed her past a year.   Umm.....really?   Then he went on to explain that I needed to just keep trying those other foods because there is no way she has FPIES to fruits or veggies.  Except that she does.  When I brought up the sweet potatoes he did admit he has another patient that reacts to them too.  Isn't sweet potatoes a vegetable?  Hmmm....  contradict yourself much?   Then I asked about the correlation between her refusing foods and they being possible trigger foods.  He said there is no way that her not eating them is a sign she would react.  He explained that with IgE allergies you might notice an immediate reaction in your mouth, but not with FPIES.  He said with FPIES it takes hours so there is no way to associate the taste of a food with a reaction.  At first that made sense, but then I started to think about it - if (as he claims) kids outgrow it by age 3 then I'm wondering how many times he has heard first hand that a food doesn't hurt until it has sat in your system for a couple hours.  Generally babies and toddlers don't have the vocabulary to explain funny feelings in their mouths....  

By that point I was just ready to leave.  I basically just sat there and tuned him out and waited for him to be done talking.  He said to come back in six months and we will test her again for her peanut allergy and talk about possibly reintroducing rice, because you know - that sounds like a good idea.  

::Sigh::  I think it is time for a new doctor. 

Oh Sweet Jewish Goodness

I am not Jewish, but I have developed a deep deep appreciation for kosher foods - especially foods that are kosher for Passover.  One of our local grocery stores, Jungle Jims, has a whole little room dedicated to Jewish foods and Cutie Pie can eat at least half of the things in there.  It is very exciting.  Yesterday we went to wander around in the air conditioned wonderland (who needs a mall when you have a huge specialty grocery store in town?!!?) and they had chocolate coconut macaroons.  The only ingredients were coconut, egg whites, and chocolate.  Okay, so there may have been a couple other things that I didn't know what they were but the canister said 'Kosher for Passover' which means they are free of Cutie Pie's trigger foods.  And to top it off they were on SALE!  Woohoo!  We bought two canisters of cookies and I was so excited to give Cutie Pie a real-life cookie with her dinner.  She ate about half the cookie, so I call it a success.  Big brother ate a cookie two, so they have everyone's seal of approval. 

It got me thinking though, I wonder if I could create a coconut macaroon cake type thing for Cutie Pie's birthday!!  I've been pinning recipes on my FPIES board, and I think it may just happen.  Cutie Pie has had dairy/soy free chocolate chips once or twice before and did okay with it, so we may just risk it and pray for the best instead of spending a whole week trialing chocolate chips.  Plus, I'm not sure I want to confess to our allergist this week that chocolate is our next trial....

Speaking of trials, green beans seem to still be a go.  I'm not giving it an official pass quite yet and Cutie Pie seems to be loosing interest in them, but so far no puking and no more mucusy poops.  Like I said, sometimes she just takes a day or two to adjust to a new food.  Not that I feel that strongly about green beans, but it would be nice to have a green veggie to give her.  I think our next trial will be Salmon.  Another meat would be give a nice variety to her diet, and salmon is one of those super foods that packs a great nutritional punch.  Cutie Pie is working towards having a very distinguished palate.  Coconut macaroon cake, salmon, what's next?