Tuesday, March 22, 2011

Almonds and Opinions

Bean has a number of food intolerances - not true allergies - rather intolerances that affect his gi tract and give him horrible stomach pains. He is on a hypoallergenic diet which means that we have eliminated the top 8 allergens (dairy, soy, wheat, eggs, peanuts, tree nuts, fish, shellfish) and gluten.  His stomach is so sensitive that even trace amounts in my breastmilk caused him great discomfort. Because I am still nursing, I avoid the same foods. We've been on this diet since he was 4 weeks old. Every time I have trialed one of these foods in my diet, he failed miserably.

Needless to say, it's been a long eighteen months and I am afraid to try new foods because the diet has worked so well for him. I fully believe that continuing to nurse him on a hypoallergenic diet is the reason that we have avoided a feeding tube. His doctor at the diagnostic referral group agreed today. She is also of the opinion (as am I), however, that he is not gaining adequate weight. Bean is not on the growth chart and hasn't been for some time. He continues to gain. Slowly. But it's not enough. I did remind her that there is a separate chart for Williams kids so she is going to look that up and plot him. We are going to look in to some more intensive feeding therapy options to see if we can help him move past his severe textural and oral aversions and continue to avoid a feeding tube.

As I suspected, she also wants us to seek the opinions of an opthamologist, audiologist (follow-up) and dentist in addition to his upcoming appointments with cardiology, gi, physiatry and genetics follow-up and follow-up lab work. We'll be seeking lots of opinions and ideas and she will help us coordinate and manage his (complex) care.

As far as his feeding is concerned though, he is currently in occupational therapy twice per week and sees a nutritionist every other week. We are constantly trying new textures and flavors and also looking for ideas to add fats, protein and calories back in to my diet. Just yesterday, the nutritionist convinced me to try almonds as they are the least allergenic nut. So, we are on day 2 and I haven't seen any adverse reactions from Bean. I will be so excited if I can add almonds back in for good. They are one of my all time favorite foods. There's so many possibilities - (allergy free) chocolate covered almonds, almond milk, homemade granola/almond bars, almond butter - all yum!!! I need to give it another day or two before I consider it a "pass," but we are off to a good start. Maybe if he passes almonds, I'll be more comfortable adding other foods back in. And if he can handle them in my diet, he might be able to tolerate them directly. That would be an amazing source of calories, fat and protein for him and would help us to continue to avoid a tube. So, I'm going to push through this almond trial with continued hopes of avoiding the dreaded tube. Care to join me?


  1. Sky was the exact same way at his age. Actually probably from birth until almost 2. First she didnt do well on breast milk, not on regular formula, soy did the trick but not all the way. She would suffer horrible colic and cry for hours. When she moved to baby food, she hated it, and everytime she ate she would projectile vomit right after.
    When it was time to go to whole milk, didnt work either. We had to do soy or almond.
    When we moved to solid food sshe didnt want to eat anything. If it was to tough no, if it was to lumpy no, if it had any texture but pured it didnt work, and thats if that did. She ate like a bird a bit here and there.
    She didnt get a full appetite until 3 and she still doesnt always eat enormous meals.
    I will pray for you baby boy and that things start to smooth out for you guys!

  2. I am sorry that you went through that but nice to know he's not the only one. Definitely seems to be a WS thing. I can't wait til he grows out of the texture thing and starts accepting a cup! So glad to hear that Sky grew out of it for the most part!

    He needs to eat to grow and I will do anything to avoid a tube. I just keep having to press the docs to chart him on the WS chart and not the typical chart...

    Hope you enjoyed your day after your long one yesterday!!!