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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.

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]

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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.

Pregnancy Journal: The End

9 Dec

It’s hard to believe Claire has already been here for over 7 weeks. I know everyone says it but it’s amazing how quickly the time goes by. I suppose when you’re repeating the same activities so often it really can just blur together. Before I get too far removed from my pregnancy though there is one more thing I wanted to write about. Consider this a PSA for those of you that don’t have babies yet because it goes in the category of “things I totally wasn’t expecting.” And for those of you who know me or have read many posts, you can probably already guess that I really prefer to be prepared for things. Advance warning is always nice. :)

So, here’s the deal. The books, doctors, and your friends will all tell you about Braxton-Hicks contractions. They refer to them as “practice” contractions. Everything I read or heard about them made it sound like something that just happened occasionally towards the end of pregnancy. Oh no. Not for me. I was getting them every day for the last several weeks of my pregnancy. They weren’t painful but they would increase in frequency and/or intensity throughout the day.

Once she was full-term, I didn’t mind them. I figured they meant labor would start any day. But after a couple weeks of that it started to feel like an emotional roller-coaster. I do not like roller-coasters of any variety. Every day I’d wonder if it would finally be the one where the fake contractions would turn into real ones. I’d leave work not sure if I was going to be back the next day and go to bed wondering if they were going to stop or get worse during the night. But every morning I’d wake up, not in labor, and go back to work again. It sort of felt like the boy who cried wolf.

Obviously, they eventually turned into the real thing. And I was pretty excited when they finally did! But now you’ve been warned in case the same thing happens to you. :)

Since I can’t have a post without a picture, and I had promised some maternity shots a while ago, let’s throw those in here too. Pete did a great job, don’t you think? Here I am 33 weeks pregnant.

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My very favorites are of my bare belly but I just don’t think the whole internet needs to see that.

Pregnancy Journal: Only a few more weeks

25 Sep

I’m not really sure how it happened, but somehow we’re already less than four weeks away from my due date. My guess has always been that she’ll come sooner though. She was measuring big at both ultrasounds and has continued to be very active. I’m just not sure she’s going to want to keep hanging out in such tight quarters. We’ll see though. This is obviously not up to me. After a brief scare a few weeks ago with contractions that were coming too often (scarier in my own head than reality – they eventually stopped and I didn’t even need to go in to the doctor), I’m just grateful we’ve gotten this far. With each week I know she’s getting stronger and more able to live in this outside world all on her own. Later this week she’ll be considered full-term (though not due for another three still.) But I am happy to keep her right where she is for as long as she needs. I’d say as long as she wants but the doctors aren’t going to let her stay too long.

I am one of the lucky (and hopefully not too annoying…) women whose pregnancy has been relatively easy. These last few weeks, as the baby has shifted lower in my belly,  my walks to and from the train are sometimes a little harder. By the end of the day my back, legs and feet might hurt more. I’m slower and more easily fatigued. And all of a sudden I’m realizing my hands and feet have gotten gradually more swollen as I’m down to just my wedding band and had to buy new shoes so I have something with closed toes to wear as the weather gets cooler.

But it’s really not so bad. I still love being pregnant. Even if these next few weeks continue to get more physically difficult, it’s hard to believe that they will be over so soon. I’m sure each stage of her life will seem to go by too quickly so I am forever grateful that I was able to enjoy this one so much.

Pregnancy Journal: Kick, kick kick

8 Aug

One of my favorite things about pregnancy is feeling the baby move around. It’s so reassuring to know she’s doing OK. People often talk about babies “kicking” which, for us, is a complete understatement of what’s going on in there. I’m not sure what other babies do/mamas feel but it sure seems like this little girl is an especially active one. I often get poked, jabbed, patted, or otherwise body slammed in ways that make me laugh out loud. They say a good way to track/check fetal movements is by monitoring how long it takes to feel ten movements at a time of day when you know the baby is most active. On average, you should get there in 10-15 minutes but it may take up to two hours. I haven’t ever actually done this but I’m fairly certain we could get to a count of 10 within 2-3 minutes most days. We’re in for some pretty funny/exhausting times if this continues once she gets out! Perhaps we’ll have to get her this onesie.

Source: originalmusicshirt.com via Jackie on Pinterest

Of course, when I first felt her move I wasn’t quite sure that’s what it even was. I think the earliest they say you can generally feel the baby is somewhere around 15 weeks or so. I thought I felt little popcorn like movements by then that might be kicks. I’m still not sure if that was really her but what I realized later was that I did actually feel her move but more often as something Pete and I call “surfacing.” All of a sudden she’ll just press on the front part of my belly like a scuba diver rising to the surface of the water and make a very hard lump from whatever part of her body it is. :)

Pregnancy Journal: Symptoms and Cravings

3 Aug

I mentioned before that I’ve been extremely lucky to have a pretty easy pregnancy so far (I keep hoping that repeating this will not jinx me!) Most notably, I haven’t had any morning sickness  or even food aversions (except for breakfast-type eggs, which I never eat much of anyway) which I am very very grateful for. In fact, my relationship with food has been just the opposite. I feel like I’m constantly hungry despite also feeling like I’m constantly eating. The good news is, I’m used to eating small meals and snacks throughout the day. The bad news is, I still have to eat those meals and snacks more often (and starting earlier in the day) than usual and if I don’t it results in dizziness and/or overall not good feelings.

The dizziness (which was especially bad up until Week 14 or so but I luckily haven’t had since then) is my least favorite pregnancy symptom. It tended to occur most frequently on my morning commute to work. Awesome. I’ve also had lower back pain, sometimes the sharp shooting kind, since about Week 6. I thought I just slept on it funny at first – I was so early in my pregnancy it’s not like there was added weight to cause pain. Oh no, my friends. That would be the pregnancy hormones kicking in and relaxing all kinds of things in my body. Fairly fascinating, no? I was worried this could mean bad things for my back once I actually had a big belly but at Week 29 (holy cow – how did that happen so quickly?!) I’m actually doing great.

Also in the column of please, God, do not let this become a frequent thing is heartburn. OMG is that painful and unpleasant. I was near tears from the pure shock of it all. For future reference, in case anyone needs it, a quick Google search indicated yogurt can actually be used as a natural remedy. I’m not sure if it really worked or if my pain had just run its course, but a tablespoon full did seem to do the trick. I’m not opposed to taking OTC medication if this is a reoccurring thing, I just didn’t know what I was allowed to take since I hadn’t discussed with my doc yet.

And another super funny thing? Leg cramps. They’ve only happened a few times but I wake up in a kind of shock/panic that I don’t understand at first. And then I realize my leg is completely cramped. They’ve gone away quickly so it’s really not that bad but what a weird thing for your body to do.

One of the questions I get asked most often is whether I have any cravings. I wouldn’t say there’s any one particular thing that I crave but instead (especially in my first trimester) it might change from week to week. Sometimes I’ll need to eat oranges and then the next week it’s watermelon. For the most part I think of it as my body just making sure it gets the nutrients it needs. Now, where that can’t necessarily be applied is to my current love of sweets. I’ve always liked dessert but I’m usually too full by the end of a meal to each much more than a few bites of someone else’s treats. My oh my how that has changed. Let’s just say I opened our freezer one day to see this and was very very happy. :)