Food Rehab, isn't for the addicts...

Today we met with Stefanie & Valerie, [Stefanie is a Speech Pathologist, Valerie is an Occupational Therapist] for Pacen's first food rehab appointment. Oh. My. Goodness. They set aside 2 hours for his appointment and it ended up being 2 hrs and 45 min. The first portion of the appointment was me going over his life of medical issues starting from the beginning. Next, we moved onto discussing what he eats in a typical day, here is an example:

Sept 5th
B - 5 cinnamon chex
B - refused mandarin oranges
L - refused ham & cheese sandwich & leftover mandarin
D - 1/4 c green beans
D - refused chicken and cheese quesadilla, but did touch it and hold it
14 oz of Elacare Jr.

As you can see, he actually ate 5 cinnamon chex and about 10 green beans. That amounted to 20 calories.

14 oz of Elacare Jr = 420 calories

While I was talking to Stefanie and Valerie, an OT student Taylor (I think that was her name?) was playing with Pacen with different toys. During our visit Pacen ate a handful of goldfish crackers, 1/3 piece of string cheese, and 2 oz of yogurt, plus 4 oz of Elacare Jr. He nibbled on the food, tried to dole it out to Stefani, Valerie & Taylor, they kindly accepted to show him that food = GOOD! Can you blame the kid? Reacting to umpteen foods, you'd be a skeptic too! Here is a list of his *current* food allergies and I do suspect a few more:

soy, sesame, peanuts, almonds, pistachio, all other tree nuts, peas, avocado, banana, watermelon, honeydew melon, cantaloupe, all beans/legumes - except green beans - galric, mango, kiwi, poppy seed, sunflower seeds - we don't give him anything containing a seed because the risk for cross reactivity is too high, and also anything labeled as "natural seasoning/flavor" because that would be a garlic infested nightmare.

he reacts very very very mildly to wheat, rice, oat, and per science/blood draws, he should react violently to egg white, but he does not react to it at all. We alternate wheat/oat/rice so we can pinpoint if he starts reacting to one of them. Our allergist suggested keeping him eating one oat, wheat, or rice per week, alternating with what he is given, but he doesn't care for oatmeal, and he could take or leave [mostly leave] rice any day. He will eat egg occasionally, but it can be hit or miss.

And for the foods/spices that I suspect: Turkey, Thyme & Oregano.. but could just be the Thyme & Oregano since I seasoned the turkey with both fresh herbs the day he was very miserable. Thyme can cross react with oregano, which are both plant based foods so the cross reactivity is a fairly common.  I won't bore you with cross reactivity, that could be a lesson for another day ;)

Here is a list of foods that I can sometimes get him to take a bite of:

apple, pear, goldfish, yogurt, chex, green beans, cheese, safe ingredient bread, chicken if it is hidden, egg, spinach if it is hidden, ham, broccoli, ice cream and dumdum suckers, his other food group. 

Time to get back to rehab... while watching him carefully spoon yogurt into his mouth, gently place one goldfish at a time in his left cheek, get watery eyes, red eye lids, choke, gag, and walk away from the kiddo sized table several times to pass his food out to everyone else, they concluded that #1 he needs a very supportive eating chair/area because he had a hard time balancing on the mini chair. He needs a full support style chair that he can place his legs down flat onto a rest. He has right sided weakness in his face/jaw. His tongue does not push food around in his mouth to chew properly, he does not chew properly, he carefully places food into the back of his left cheek because he cannot manage to keep food on his right side without gagging and choking. He cannot handle small pieces of food in his mouth and they described it as "he eats to protect his airway" since he chokes so easily with foods that breaks apart/separates or anything that isn't soft. Valerie said that most kids take as long in food rehab as it took to get them to the stage they are currently at. He is also hoarse sounding, hiccuping, and spitting up a bit, so he is back on reflux meds to see if it will tame the acid.

We already have 3 rehab appts and one neuro appt scheduled in October on the 9th he will have rehab breakfast and neuro in the afternoon, and on the 10th he will have rehab breakfast and rehab lunch.