We spent most of Wednesday with doctors at Ochsner’s. First we saw the Allergist/Immunologist. He reviewed all of Stanton’s results from our recent blood work and testing. The immunology report found that Stanton has NO elevated levels of eosinophils in his bloodstream. This completely rules out the possibility of Eosinophilic Esophagitis. This is great news for Stanton and gives us hope that maybe one day he will be able to enjoy food! The only area of concern from an immunological standpoint is that Stanton has very low strep and pneumonia fighters. The doctor wrote us a prescription for an extra vaccine as Stanton is a “partial responder” to the Prevnar vaccine that all babies receive. Stanton does have a history of several pneumonias and chronic upper respiratory and ear infections, but they’ve always trailed behind severe vomiting episodes. I haven’t really decided what I think about that yet.
Basically, the allergy tests reveal that Stanton isn’t allergic to anything. The doctor explained that many people are “intolerant” to a food and unfortunately there isn’t a test for that. The doctor said that obviously Stanton is reacting to foods and we should just keep trying the elimination diet and documenting his responses to food. He went on to suggest that because Stanton will sometimes eat, then not get sick for a few hours, it could be a motility issue, and that is something to discuss and explore with the gastroenterologist.
We then meet Ms. Jan and her boys for lunch at Piccadilly. There is one just a few blocks from the hospital. Stanton really enjoyed listening to the boys talk about the new Toy Story 3 movie! I ordered some corn for him and he happily played with the corn and spoon and maybe ate a few bites. The corn was cooked in butter . Stanton has always quickly reacted to dairy products – usually via chronic diarrhea. Well, this time, he developed a whelp style rash on his right check…the same check Stanton covered with corn juices as he attempted to use a spoon. Of course – we’d just left the allergist appointment. Why, oh why, couldn’t the allergist see this bright red growing rash!
Well, our next stop was with Dr. Serrano, the GI (gastroenterologist) and she pointed the rash out right away. I explained that it had just developed since enjoying corn at Piccadilly. She said, “Was it cooked in butter?” I admitted it must have been. Dr. Serrano said it looked like a definite dairy reaction. She said she had reviewed the results of all the blood work and understood that although Stanton isn’t allergic to anything on paper – we knew and could document specific reactions to foods. Yeah, I thought, just look at his face! We discussed many, many topics – too much to really to list. The main deciding points at this visit included sticking to the elimination diet, introducing a new medication, and getting a second opinion about feeding clinics.
Dr. Serrano knows a GI who helped start an inpatient feeding disorders clinic at the University of Pennsylvania. She asked if she could call him and see if he thought Stanton would be a good candidate for this type of clinic. Dr. Serrano said she has only sent children who are failure to thrive and on feeding tubes to these type clinics. But, she feels, as do I, that because Stanton is now beginning to show some behavior issues related to food and feeding, and because he is bottle dependent, a clinic stay could be the thing that saves us from a feeding tube. She said to think of it as “preventative care.” Although he has some medical issues and a restricted diet, an intensive treatment program, could jump start Stanton and get him to a more age appropriate place. I am open and ready for this as I see him falling further and further behind his peers. There are only ten inpatient pediatric feeding clinics in the United States. I've just looked at a few so far: Pennsylvania, Maryland, New Jersey and Georgia.
Stanton’s new medication is to increase the speed of his body’s digestion. The allergist and Dr. Serrano feel that his 2-3 hour vomiting delay after eating could imply that Stanton has delayed gastric emptying (also called “motility”). The GI said that rather than doing more tests and scans, let’s just try the medication and see how it goes. Well, this morning was my first attempt at getting the medication down. What a nightmare! Three outfits later, and we still maybe got ½ ml in him. And I’m supposed to give this to him three times a day!!!!!! That’s just craptastic! Stanton cried, screamed, vomited and flat out refused the medication. I then attempted to hide it in his juice – failed attempt number two! I even hid it in a small amount of Coke and he still wouldn’t drink it – failed attempt number three. I then took it along to our occupational therapy session – failed attempt number four. I don’t know what my next strategy will be. I’d love some ideas.
So, what does the “elimination diet” mean for Stanton? We have been given a green light to introduce one food group a week. The doctor recommended that we start slow and with “safer” foods as you would with a baby….. starches….. fruits… vegetables. So, this week we are trying fruits. Stanton has enjoyed diced peach cups in the past and loves apple juice, so I figured that was a safe place to start. I am to closely monitor and right down any changes in bowel movements, vomiting and skin rashes. Stanton licked a piece of watermelon this morning, grinned and said “yummy, eat.” Then he leaned in for his second lick, only to be surprised by the eruption of his ever present dormant volcano. After I cleaned him up I was astounded to see him reaching for the watermelon again. Again, he said “yummy.” I fought back tears and said, “yes, it’s yummy.”
