Last week our 3.5-month wait for Russell to see the GI specialist was over! He is now in the "system" and is a patient of the same GI specialist that we use for Caleb. Since she knows us rather well (yeah, I'm pretty sure Caleb is a very complex case), and she knew we were coming (I told her the week before when talking to her on the phone in regards to some of Caleb's problems), she was very sad to see that we were experiencing problems with our littlest little one.
One thing that I love about this GI is her notes. She gives me a copy of everything that she observes, thinks, and does in regards to my children. Here is what she had to say about Russell, straight from her notes:
Not growing well
needs to eat more
needs to sleep more
lots of allergicky responses to food intro.
social, chatty, muggy, laughing
all physical observations fine except rough skin and bloated (yet soft) abdomen
Rx: Cyproheptadine: increase appetite, increase sleep, decrease allergic reactions in the gut
So, Russell is now on Cyproheptadine twice a day. Caleb has been on it two separate times now, once as an appetite stimulant and once in a (failed) effort to control nausea and vomiting. But those are just side effects--the drug was originally used as an antihistamine. It is no longer used for that very much because increased appetite is a common side effect (and most people don't like that, but for my boys--YES!). And nowadays antihistamines are targeted to effect more specific parts of the body--like the sinuses, etc. But this one is just a general antihistamine, so it will effect his gut. So, if Russell doesn't have an eosinophilic disorder, and he's just reacting in a general allergic way, then this medicine may very well help him. But eosinophilic reactions aren't like regular food allergies, because your body doesn't react with histamines. It reacts with eosinophils, which are a white blood cell. In that way, people with eosinophilic disorders don't have "food allergies" at all. They have food "reactions"....
Anyway. Since being on the medication, Russell has tried two new foods: bananas and beef. I'm thinking about giving him strawberries or corn tonight to see what happens. So far, he hasn't had any sorts of reactions to anything since being on the medicine, but it's hard to say if he would have had reactions anyway. I'm supposed to call the doc with a report next week.
And then, shortly after leaving the doctor's office, I noticed that Russell felt warm. When we got home I took his temperature and he had a fever of 102*! Poor kid was getting sick. And for three days he slept straight through the night, when before he would wake up 2-3 times each night. A little silver lining to his poor, sick, lethargic self.
By the next morning he was so congested, unable to eat, and lethargic and his fever was up to 103.2* even with tylenol, so I took him to the pediatrician. Other than losing an entire POUND!, everything checked out fine and they sent me home with a mental list of things to watch out for. After his nap his breathing was so labored and he had even less energy that I was worried about his oxygen levels, so I took him back to the pediatrician for a second time that day! They gave me the same schpeal, and sent us home. Thankfully he kept breathing throughout the night and the next day he was a little better. Whew! He has now gained back pretty much everything that he lost, thank goodness! And he is only waking up once in the night, which I can live with. :)
Part II of the crazy week, Caleb's Medical Status, is to follow.