The Allergy/Eczema Blues – Part II (FPIES Diagnosis)

30 Sep

So picking up from where I left off in Part I

I started this post by writing the not so fun details about Claire’s first reactions and how we got there. But after it was all written I didn’t feel any better. (In fact, I may have felt worse reliving them.) My point in sharing anything about her allergies at all is that it’s difficult for me to just go back to posting pretty pictures. The experience has been draining and the day-to-day management of it all is still difficult. Even on a good day, her allergies impact everything. And until you live with allergies, I’m not sure there’s any way to really know what that means. I’m hoping that by writing the story I can let it out, explain where we’re coming from, educate others, and continue my efforts to find some peace within it all. I don’t mean to just give details and complain. Her reactions were scary but they could have been worse. There are a lot of things she can not eat but that list could be much longer. Unfortunately, we have no guarantee the next reaction won’t be worse and that the list won’t grow longer. So it’s that uncertainty that can cause me so much anxiety.

But let me back up. And jump into a whole lot of educating. Feel free to skip if you don’t care. ;)

Claire’s first reactions were all between 6 and 8 months. First to cow’s milk and then to turkey. I know what you’re thinking. “Turkey?! No one’s allergic to turkey!” Yes. Turkey. She is allergic to turkey. She has a rare allergy called Food Protein Induced Enterocolitis, or FPIES for short. The fact sheet below from the FPIES Foundation highlights a few of the things that make this kind of allergy unique.

TheFPIESFoundationCommunityAwarenesscard-front

 

There is no test for FPIES. The reaction is in the gut so standard allergy testing like skin pricks and blood work generally produce negative test results (thought it is possible in some cases to have both types of reactions present at the same time.) FPIES is diagnosed primarily based on patient history.

The “Top 8″ common food allergens that people are becoming increasingly more aware of are peanuts, tree nuts, milk, egg, soy, wheat, fish, and shellfish. However, the common food triggers for FPIES tend to be those that kids are fed first – cow’s milk and soy are most common but rice, oats, bananas, and sweet potatoes (among other things) are also very common and, as noted in the fact sheet, FPIES can occur to any food.

My last two points mean that there is no way to know what your child is allergic to without feeding it to them. Let that one sink in for a second. Every time you give your kid a new food there’s the fear they’ll vomit profusely. (I realize that technically this risk exists in all children. But there’s something different about having seen it happen. You already know their body is reacting inappropriately to some foods and so it’s hard not to worry there are more. Plus, like I said, for this allergy, there’s no test.) To manage the severity of reaction, the recommendation is to introduce new foods one at a time and in small, increasing amounts. There is no standard protocol for what that introduction period looks like but, since reactions don’t always occur right away, common practice tends to be to increase the amount up to a full serving over 7 days, take a 2-3 break, and then feed full servings again for 4 more days. The logistics of these food trials, as they’re called, for every single new food, spice or oil that you give a child are overwhelming and complicated.

What complicates things further is that FPIES is not very well understood within the medical community. Patients are often misdiagnosed or bounced from one doctor to another looking for an explanation for their symptoms. The sheet above describes an acute reaction but babies can also have chronic reactions which are milder and more difficult to identify but can result in weight loss and a failure to thrive diagnosis. So often, parents will stumble upon a diagnosis after googling symptoms like “infant vomits after eating sweet potatoes.”

Current medical research does not always align with what parents are describing within the Facebook support groups, likely because the sample sizes in the studies are so small. For example, current research suggests most kids only have 1 to 2 triggers, will grow out of their allergies by 3, and the only siblings who have FPIES are twins. But patient experience indicates those things don’t always hold true. The difference between the two can lead to difficult relationships with the medical professionals so desperately needed to help the families going through this. It also means that doctors don’t really have a ton of answers. The problem with any type of allergy is that each person can react so differently. So the doctors can give you their suggestions and try to guide you towards foods that will be more successful based on the history of reactions but, ultimately, the only thing you can do is try.

So that’s a lot of information, no? And it’s just the summary of it. If you’d like more information, the International FPIES Association is another fantastic resource, and they lead the way in trying to get more research done. So, I’ll get to what this all means for us in a future post but how about I stop here to let your head stop spinning. :)

 

The Allergy/Eczema Blues – Part I

18 Sep

Oh, where to start?

(First with a little foreword. I wrote everything except this paragraph back in the beginning of April. It was a time when I was really not doing well. I’m not sure why I didn’t post immediately but I’m finally coming back and will just post as-is and follow up with the rest of the story in another post. So here goes…)

How about we just get it out there…Claire has severe allergies and eczema. If you know me in real life you already know this. It can, at times (lately? since she was born? it’s hard to remember), be all-consuming.

A friend asked how I was doing recently and I responded that I was about the same as usual – I have a bad case of the allergy/eczema blues. She said that could be the title of my book. True story. Except I just googled it and Eczema Blues is already a blog. I’m not surprised. This is a very real thing.

But let’s back up.

Claire is awesome. She is stunningly beautiful, wickedly smart, super funny, and the kindest, most thoughtful little girl I could ever hope to meet. The fact that I get to call her my daughter and watch as she discovers this world brings me endless joy. I mean, just look at that glimmer in her eye and those silly little faces!

Storyboard---Claire's-Faces

 

(And, as a side note, for an amazing read on keeping that glimmer, read this Dear Bee – what a beautiful gift these letters are to her daughter!)

But her allergies are complicated and anxiety-inducing. Mostly because we don’t even know what they all are. I am bombarded (by mostly well-meaning, so I don’t mean this personally against any of you) questions, comments and suggestions on a regular basis. It can be exhausting. So let’s write down what I know. (Or maybe just what I think? Feel? Don’t know? We’ll see where this post goes.)

Claire’s pediatrician told me on her second day of life that the rash she had indicated she’d probably have food allergies. In my postpartum bliss, I put this aside. Neither Pete nor I have food allergies. I did pretty much everything they recommend you do to protect your children from food allergies (not specifically with that intention, necessarily, but I did.)

We had trouble nursing. First latching. Then with how long my milk took to come in. And then with a baby who would get very upset after eating.

Looking back, I don’t even know what order a lot of things happened in.

Did I know then that eating was the problem? She nursed all the time so I don’t know that I did.

When did her eczema start? I don’t know that either. I don’t think the doctor called it that specifically for a while.

What about the back arching? Hmmm. I don’t know that either. But I specifically remember thinking when she was around 3 months old that the books had lied to me. My baby was getting fussier, not settling. Everyone would tell me what a good baby she was and it just made me feel worse. Don’t get me wrong, she was a good baby. She is so good. For the reasons I listed above and a million more. All babies are good.

But it was hard. And I’m sure all babies are hard. But I think this baby was hard to me because I was the one feeding her. She’d be kicking her little legs (which I now think was the eczema on the backs of her knees bothering her) and she’d go on and off, on and off (which I think was because her stomach likely hurt.) My grandmother, who nursed 5 of her own babies and has witnessed who knows how many more nursing, said she had never seen a baby nurse like that before. Hmm.

I tried eliminating dairy. I tried eliminating acidic foods. Maybe soy too? I don’t remember when any of this was either (maybe Pete will write a post that contains actual details? Pete?) but I do know it didn’t seem to matter. I felt like I was not eating well at a time I needed to the most and it wasn’t helping one bit. I added them back in and then one day finally did see the connection to too much dairy. So I cut back.

She didn’t seem as uncomfortable but she still had her rashes. I was told to just treat the rashes with steroids and oral anti-itch medication, that they likely weren’t a sign of food allergies. I think it’s something like 66% of eczema that really is just a skin rash and her eczema was limited to specific areas. Unfortunately, with what I know now, I should have been more careful. I should have tried to identify whether any other foods I was eating were causing her problems. I don’t mean that in a guilty kind of way. I didn’t know. But I wish I had.

Entryway {in progress}

6 Feb

Chirp. Chirp. Chirp.

Those are the crickets around here. Except that I live in the Midwest so we don’t have any crickets right now. I’d actually be surprised if we ever have crickets again. I’m convinced that our climate has moved from Humid Continental (I had to look that up) to Tundra. Permanently. The cold and snow this winter have been no joke. I’ll take some pictures of the mountains of snow piling up in my front yard from shoveling the driveway. (To be clear: From Pete and our super sweet neighbor kids shoveling the driveway. I take no credit for the actual shoveling.)

But that’s not what I came to write about. I have many, many things to catch you up on. And no time. It’s hard enough to move down the list of things I need to do, let alone even get onto the list of things I want to do. But I miss chronicling our projects and adventures so hopefully blogging can get some more of my attention soon. It’s been a HUGE year for us and I’ve been plotting a master recap in my head but let me spoil some of the fun and skip to one major, important to this post, highlight: We bought a house!! And so of course I’m in the process of plotting, planning, and decorating. Just even slower than usual given that toddlers aren’t really into that sort of thing. :)

And so that brings me to the real point of this post. I have a favor to ask. Our family photographer is having a fun give away for the client wall gallery that gets the most “likes” on Facebook. Our is very much a work in progress still but I threw this together to show what we’ve done, where we are, and where I’m headed.

Entryway Gallery

Please help us win a $200 credit for our next session (which would be huge because some of our other big news is that I just quit my job to stay home full-time!) by clicking {HERE} and “liking” the photo in her Facebook gallery.

Unfortunately, I didn’t take any true “before” photos (I’m just lucky to get things done!) but close your eyes and picture a blank wall. That’s my before. I’m so excited to have the added functionality of the coat hooks and can’t wait for our gallery wall to be complete. The theme for the wall is based on something Pete’s grandfather would tell the family – Safe Journey, Safe Home – so the photos and artwork will combine that phrase, some of our favorite places (including our old condo!), our grandparents old homes, and family photos. I think it’s going to be great. And the icing on the cake? One of Claire’s favorite words is “home” too. It makes me so happy (and very teary!) that our home is somewhere she loves to be.

To see the inspiration for the wall, here’s my Entryway Pinterest board!

Freezer Meals

19 Mar

This post is very late in coming. And out of season now. But oh well. I’m posting it anyway.

Eating well is important to me. I am by no means the healthiest person on earth but I’ve worked really hard over the past few years to develop more healthful ways of eating. Most of my philosophy is centered on eating as much unprocessed food as possible. Though I certainly enjoy dining out, I like to do it as a treat and not just because I didn’t plan and cook a meal. In fact, how we’re eating has pretty much become a sign of how in of control I am of my life in general. When things get out of hand, I often try to re-focus by menu planning and grocery shopping.

When I was still pregnant, I worried about how we’d handle meals once the baby arrived. Knowing that I feel better when I eat better, I wanted to make sure we were prepared. A quick search on Pinterest offered many make-ahead and freeze meal options. But a lot of the recipes were just for chicken with some kind of sauce (which means it’s just as easy to sprinkle on some spices and throw it on the George Foreman grill…) or otherwise used ingredients I usually wouldn’t.

So, unhappy with those options, I embarked on the fun task (I’m being serious in case that isn’t coming across well in writing – ha!) of planning how to prep and freeze a few of our favorite fall/winter recipes plus a few new recipes that I thought would work well with this plan.

Here are the recipes I decided to try:

  • Lentil soup split into two gallon bags (which were 2 or more servings each)
  • Minestrone soup split into two gallon bags (which were 2 or more servings each)
  • Chicken tortilla soup split into two gallon bags (which were 2 or more servings each)
  • Chicken pot pie (ok, so maybe chicken pot pie is never *that* healthy…)
  • Veggie and rice skillet
  • Inside out stuffed peppers (from an old-fashioned cookbook! but one of my faves so maybe I’ll blog it eventually)
  • Beef stew (see my important note below about potatoes before you try this one!)

First, I made an Excel sheet (Yes! Excel! I told you this was fun! And again, I’m being serious…) of all the ingredients I’d need, the prep-in-advance steps for each recipe, and then the instructions for what to do once we wanted to unfreeze and eat the meal.

Menu planning in Excel

A few weeks before Claire was born, we went to Costco, stocked up on all of the ingredients, chopped up all the veggies (I kept everything sorted in individual bowls by recipe and had the freezer bags ready and labeled), sautéed, poured in stock, canned tomatoes, etc, added in spices, divided into the gallon size freezer bags, and froze. Whew!

Prep-ahead

Freezer meals

It was several hours worth of work and I nearly chopped off a finger at least twice while dicing onions. Yikes! I’m not sure it necessarily saved time overall (it did save time when it came to actually getting dinner ready though) except that we only had to wash the cutting boards, knives, and pans once. But, by the end of the day, our freezer was stuffed (maybe a little too stuffed!)

Freezer Meals 2

Given all of that, I wouldn’t necessarily plan on being this ambitious very often. However, having 11 plus meals ready to go was amazing. Between what we made and our kind and generous family and friends, Claire was over a month old before I even had to worry about what to eat.

But you might be wondering how things turned out. I was definitely a little worried since I hadn’t tried anything like this before. Here’s my quick recap:

Soups

All great. When possible, I’ll probably start doubling or tripling those recipes when I’m already making them as I think that will save time and cut down on wasted ingredients. I think this would be a more reasonable way of prepping in advance going forward.

Chicken pot pie & Veggie skillet

Both OK. A little runnier than usual. I probably needed to adjust something along the way to account for the freezing and did not.

Inside out stuffed peppers

A little mushy. Since this is one of my favorite meals, I’ll stick to making it fresh when I want to eat it.

Beef stew

So, apparently, you can’t freeze cut potatoes without doing something to them first or they turn black. Oops. Learn from my mistake. If you’re going to try to freeze potatoes, google it first and figure out the right way. I may be too scarred to ever try again or I’d figure it out for you.

It is important to us that we continue to eat well and prioritize family meals even now that Claire is here. I know that how that all comes together is going to need to change and we’re still trying to figure out our nightly schedule. I’d like to come up with some set weekly meal plans so I’m not starting from scratch each week but I just haven’t gotten there yet. And I definitely need to figure out how and what to prep in advance (frozen or not) so I can get dinner on the table quickly after work. We’ll see how it continues to evolve!

xoxo Claire

14 Feb

“Cute’s good. But cute only lasts for so long, and then it’s, ‘Who are you as a person?’ Don’t look at the bankbook or the title. Look at the heart. Look at the soul.” – Michelle Obama

Those words were spoken about finding a partner and yet, as I’m constantly thinking about how to raise my daughter into the strong, smart, independent woman I know she can be, I hope that message is something she’ll one day believe about herself. No matter what she has or what she chooses to do, I hope she’ll love herself for what is already in her heart. I know I sure do.

At the same time, she is pretty darn cute and that never hurts either. ;)

My little valentine Pretty skirt baby feet

Happy Valentine’s Day!

P.S. Remember my Valentine’s post last year? Unbeknownst to all of you, we had just found out I was expecting! I was pretty much bursting with love…and still am. :)

Cannoli Dip

4 Feb

Hi everyone! Did you all have a good weekend? Eat some good food at your Super Bowl parties?

I think I discovered my new go-to dessert. Cannoli dip. Did you all know cannolis* are made from ricotta cheese? They’re my favorite dessert and I did not know that until yesterday. I don’t know what I thought they were made from except for deliciousness. Deliciousness that was unattainable at home. But not anymore!

Cannoli dip

I came across this recipe for the dip on Pinterest (of course!) but when I bought the ricotta saw that there was a cannoli filling recipe on the back too. So, in what seems to be my new way of cooking, I improvised a bit by combining my favorite parts of the two recipes. The final recipe was something, very loosely, like this:

Cannoli Dip

  • 1 lb ricotta cheese
  • about 1/4 cup powdered sugar
  • about 1/8 teaspoon vanilla
  • about 1/4 cup mini chocolate chips, plus more for garnishing
  • 1 package waffle cones

Stir the ricotta cheese, powdered sugar, and vanilla together. Taste it and add more powdered sugar or vanilla if you think it needs it. Stir in the mini chocolate chips. Add more if you want to. Put into a serving dish and garnish with more mini chocolate chips. Break up your waffle cones into small pieces for dipping. And you’re done!

Way too easy. And soooo good. It even eliminates my least favorite part about cannolis – that they’re sometimes a bit messy to break apart and eat!

*I also just learned that those with good knowledge of Italian would actually use the singular form connolo and the plural form cannoli. But as I clearly do not know Italian, I’ll just go ahead and stick with the Americanized version. Also, I learned that cannolis are from Sicily, which is where the Italian side of my family is from. Must be why I like them! :)

The Year of No Comparisons

24 Jan

I’ve mentioned before how my friend Lauren starts a new theme of the year on every birthday. I often join in but sometimes get a little distracted. My excuse this year is better than ever as I had a baby on my birthday in 2012! So I’m a little behind. But I really nailed The Year of the Sparkling Buddha and it does help me to have a theme, something to reflect on as I make decisions or fight with myself in head. But it really has to be the right one and I haven’t had much time for reflection. Around the new year I finally discovered my theme for 31 when I stumbled across this photo-

Comparison is...[4]

{via}

 

Ah ha! The Year of No Comparisons.

Being a new Mom is hard. I love it, but it’s hard. I don’t always know what to do. I don’t always know what’s normal. I don’t always know where to go to find out what to do or what’s normal. Increasingly, I find myself wondering how some women seem to be able to get so much done when I’m just excited if Claire has eaten and slept well in any given day. She’s a good baby but she’s often fussy when she eats and needs a lot of coaxing still to be convinced it’s time to go to sleep. So, those two simple things can leave me physically exhausted after doing them so many times per day.

But what I have found, ever difficult as it might be, is that I often do best when I just follow my instincts. Comparing myself, or Claire, to anyone else doesn’t really work. The external input and advice has a way of getting into my head and making me more anxious than not. We’ve got our thing going and we may not be perfect but I think we’re doing OK. I know there are milestones to watch for and some places where comparison really is appropriate. But I think, overall, we’ll be better if I just do my best and not worry how that compares to anyone else.

This is going to get harder when I go back to work and still want to get more done than I have hours for in the day. It’s hard when I look at other photographer’s websites and compare my work to theirs. But that’s why it’s this year’s theme.

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