Tuesday, May 24, 2011

See this face?

See this face? Does it look like the face of pain to you? Nope? That's because he's not in pain. Not anymore, thank goodness!

Husband and I waited a long, long time to get to this point and we are so happy that Bean is finally in a place where his digestive troubles seem to be controlled. He struggled for a long time with reflux and food protein intolerances. Food protein intolerances are different than true food allergies because they are a digestive system response - usually related to an immature "gut" rather than an immune response.

Bean's food issues were so severe that I drastically limited my diet so that I could continue nursing him. When he was about 4 or 5 weeks old, I went on a hypoallergenic diet and eliminated dairy, soy, wheat, gluten, fish, shellfish, eggs, nuts and peanuts.

Every time I tried to reintroduce a food in to my diet, Bean ended up in a lot of pain until recently. Yes, I am still nursing him and plan to continue until he gets adequate nutrition from other food sources AND he's ready to give it up (withing reason, of course - I won't nurse him until he's 9). A few weeks ago, we trialed - and passed - almonds. Now, I feel I can safely say we passed eggs. Both of these foods are fantastic additions to both of our diets because they are filled with nutrients and calories that we both need.

Each food trial has been incredibly nerve wracking because I'm terrified that I'm poisoning his little system. I've been very reluctant to add new foods because I am so afraid to cause him unnecessary pain. But with these two important "passes," I'm gaining confidence that Bean's digestive system is finally(!) maturing. And that means that I get to eat some good food.

Now, I'm excited to try more new foods rather than dreading it. We met with his nutritionist today - she comes weekly - and discussed next steps. Oh, and he weighed in at a whopping 22 lbs on her scale - that's 1 pound in a week!!! Grow, Bean, grow!

Bean and I are going to try fish next. Tomorrow! And then, if all goes well, we'll do gluten in a couple of weeks. I am going to try shellfish soon - but not Bean, for obvious reasons. We are holding off on dairy and soy for a while - dairy because of his borderline hypercalcemia and soy because neither his nutritionist or I are all that excited with the stuff we've been reading about the effects of soy. I limit soy in Baby J's diet for the same reason. Still, I have hope that I (and Bean) will enjoy a piece of pizza one day, perhaps not too far down the road. And with that slice of pizza, I am hoping to see his beautiful, smiling, pain-free face.


  1. Yay Bean! I think you are amazing that you have continued to nurse him through all the struggles. I nursed Dallin for 18 months and I'm so glad we got to go as long as we did. I had so many pediatricians when he was younger telling me that my milk wasn't enough and that I needed to supplement, but I knew (good ol' intuition) that I was doing the right thing to keep nursing him. This was before his WS diagnosis. Now I know that I could have seriously damaged his kidneys had I loaded him up with the calcium-rich formula.

    In the end, nursing was still not enough to keep his calcium under control, so we had to switch to the low-calcium formula at 18 months. But I'm proud that we made it that long and I applaud you for all you've done for Bean.

  2. Yay! Thats awesome to hear! I thoroughly enjoyed the few short days I got to nurse Peanut. <3

  3. What kind of fish will you try? I'm exciteed for you!

  4. Thanks so much, Sheri! 18 months is awesme! I made the dietary decisions long before dx and thank goodness I did! The calcium in formula would have been a major problem for him. Mother's intuition is no joke!

    Ruth, memories to cherish forever! <3 <3 <3

    Shan, not totally sure yet. Just a white fish so probably haddock or pollock maybe :) We'll know in about a week if it's a pass!

  5. Wow. You are awesome to have discovered that and to have taken such a HUGE step to eliminate all possible intolerances from his/your diet! I can only imagine how excited you are to now be able to eat eggs and almonds! Thrilled that things are looking up, and I hope the trials continue to go your way!

  6. How wonderful! I'm so happy for him and you and all of you that he's getting to a point where he's ready for new foods. I'm proud of you, too, for nursing through all of this!

  7. So glad he's doing better! And good for you for continuing to nurse him!