Saturday, November 9, 2013

Carter Health Update

With all that's been going on with Jacob, Carter's issues have definitely fallen by the wayside a bit.  Of course, it helps immensely that he's a ridiculously happy baby and you'd never know anything was up with him.  As you may recall, back in August and early September, we had issues where he was projectile vomiting his bedtime bottle after eating a helping of rice cereal earlier in the evening.  I did a bunch of research online to see what I could find out, and the only thing I could find was something called FPIES.  It's basically a food protein intolerance issue.  It's not an allergy that would cause anaphylaxis, but rather the body simply can't process the food and rejects it.  There were lots of scary stories online about kids who vomited violently, ended up in the emergency room, and some who went into shock.  While I didn't necessarily think Carter was in that category, it was scary that it could happen. 

For those first few weeks I was very slow and deliberate about introducing new foods because I was scared that he would react to those as well.  I purposely avoided other grains since there was a chance he'd have reactions to those, too.  But we've done a lot of fruits and vegetables, along with meats.  So far there have been no reactions, though meats tend to give him brutal constipation.  He doesn't seem super uncomfortable, mind you (see: ridiculously happy baby), but it's heartbreaking to see him push periodically and have nothing come out, and it's a bit messy dealing with what comes out once he finally breaks through. 

He seems to like eating well enough, but I feel like he's a bit behind right now when it comes to eating in general.  Initially I was definitely a bit slower in bringing in new foods, and I often kept the volume down because I didn't want to overload him--both because I was afraid too much of a potential trigger food might make the reaction worse, and because I didn't want to fill his belly too much before his night bottle.  That's still his main source of nutrition, and given his history of spitting up, I also didn't want to overfill him between the two.  It's a tough balance to find a good time to feed him without spoiling other meals.  Add in his medicine that needs to be administered on an empty stomach 30 minutes before eating, and it gets extra complicated.

Because he's been sort of slow to get into the food, I feel like he's not eating as much as most kids.  I cringe a little bit when I see the bowl of food that a kid at daycare eats, and he's only a month older (but much bigger!).  It's probably three times more than what Carter has ever eaten.  I looked at an online guide to solid foods, and he's definitely eating considerably less than most kids his age.  To make matters worse, I can't seem to get him to eat true solid food to save my life.  The purees are fine, though he seems less sure about carrots, as they seem to make him gag a bit.  One day I cooked him up a few peas.  I even shelled them so he had the tiny little pea pieces, and gave him one.  He gagged on it and nearly threw up.  The other night we had baked potatoes so I picked off a couple small pieces of plain potato and put one in his mouth.  He gummed it for a bit, but again, he gagged on it and ended up bringing back up some of his carrots and chicken in the process.  I felt so bad for him!  So now I'm stumped and worried that he's got a gag reflex problem.  Ever hear of those people whose kids won't eat anything because of texture issues and how they'll literally gag on everything until they throw up?  I'm not saying he's going to be one of those kids, but now I'm worried that he's at least a little extra sensitive to it.  Of all the million things I blogged about when Jacob was a baby, I don't think I ever posted in detail how I got Jacob to learn how to chew and swallow solid food.  Probably because you can't actually teach it and they just need to figure it out.  I know Jacob had a few choking/gagging episodes over the years, but I don't remember them being quite like Carter's, which are actually a little scary.  He gags, turns red, and then eventually gets it up...perhaps with other contents of his stomach.  I've tried two of the softest things I can think of, and it still happened.  So now I'm nervous and I have no idea what to try next.

Anyway...back to the original point of this post.  Yesterday morning Carter and I went to the allergist to chat about my suspicions.  I've been to this doctor before, more than two years ago when I tried to do something about my missing sense of smell and taste.  He was great, and I hope to sometime soon go back and start getting allergy shots.  He did confirm today that I wouldn't need additional testing to start, so that's good news.  Anyway, my goal for the meeting was to see if we could get a diagnosis, test for anything concrete, and get an action plan for introducing new things without torturing Carter.  All in all, it went well.  I gave the doctor the history, and they ended up doing a handful of skin tests on him.  He barely flinched when they did it.  They tested for a bunch of grains, as well as milk and soy, given his experience with the cow's milk protein issue.  All of the tests came back negative, meaning he's not allergic to anything.  That's good news, but it's a totally separate issue from the rice intolerance.  They can't really test for the intolerances, so we pretty much have to avoid rice for the next few years, then go into the office for a reintroduction test.  They want him there to treat him just in case his reaction is severe.  He did say, however, that the odds of him having issues with other grains would be rare so we're free to give it a shot.  I'm still nervous, but I guess we'll just have to try and wear drop cloths!  He also said that it's probably not FPIES, as most of those kids have very severe reactions, but that it is an FPIES-like reaction in that it operates along the same lines.

So...the tricky part is that rice is one thing Jacob can eat, so I'll be making some double meals once in a while.  Rice flour is in a lot of gluten-free stuff, so it's going to be a tough balance.  But Carter will outgrow this, and just like with Celiac, it's not an allergy...so as long as my child's life is not at risk, I'll deal!  The stinky thing is that there are an awful lot of baby foods that include rice.  From baby food meals to Gerber Puffs and Baby Mum Mum biscuits, a lot of previous go-to stuff is out.  And that's assuming there are no other intolerances like wheat or oats.  It's going to be a challenge, but we'll figure it out. 

One day at a time is becoming quite the mantra around here...

No comments: