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?
