We took him in because of some red flags we saw in him. Developmentally and physically (as far as coordination and motorskills), he's just right on. But when it comes to growing, Callahan has had a hard time. He’s the average size of a 6 to 9 month old, and since 6 months, has been dropping off below the normal growth curve. And for a while, at around 12 months, he started throwing up a lot, and would have bad diarrhea. Sometimes several times a day.
So we made an appointment several months ago for him to go see a Pediatric G.I., but it takes a long time to get in. We had already seen an allergist, and found out about his peanut allergy, but thought there was still something more. So we went in for testing. We did questionnaires, and talked to the doctors, and they poked and prodded him, took his measurements and weights, blood was drawn, and stood and sweat testswere done. The staff at Primary's was awesome, and Cal loved all of the fun toys and atmosphere they make there. It brought back some bitter-sweet memories from when I visited there when I had kidney reflux disease growing up.
The doctors, Helen Lener and Molly O'Gorman, couldn't believe what a happy little guy and good sport he was considering how they thought he probably felt. They both agreed he was a "peanut" and needed to start growing, and wanted to test for some other things they thought he might have including severe allergies, Chron's, Siliacs, and Cystic Fibrosis.
The sweat test, I mentioned earlier was for Cystic Fibrosis (CF). We did that test twice in two days, but this kid just doesn’t sweat! They need to collect so much sweat because the results are in that. But we put heat packs on the area that they’d collect the sweat, covered him in winter clothes, coats, hats, blankets, and an emergency blanket, and put him in a hot room to run around in. But he still didn’t sweat. So the doctors are trying to decide what to do now. I guess they can do a blood sample, but it is very expensive I guess, so they usually just do this. So we’ll see with Cal what they decide.
The pinwheel kept him entertained, but he got so lethargic towards the end, he was overheating. Especially the second day. The first day, when these pictures were taken, he wasn't as bundled up, but the second day, it was terrible how hot he was, yet no sweat here! So the doctors are deciding if we should try the test a third time, or go ahead and do blood work, which is much more expensive, and I guess insurance companies don't like paying for it.
From the blood test, we found out a few things: he is allergic to the following: peanuts (which we know), egg white and egg yolk, milk, soy, corn, rice, oats, wheat, tomatoes. So what does the kid eat? Those foods are in everything! The doctor has prescribed this Neocate or Elecare stuff, which is an amino acid drink that provides all of the nutrients and calories Cal would need and is hypo-allergenic. She wants him to have four a day. And they’re not cheap. $4.50 per serving! That’s about $7,000 per year! Luckilly, after researching it, we found out that since it's considered medical necessity for him, we can get reimbursed for it. So we’re very grateful about that.
I almost died when I saw how much this stuff costs!
I almost died when I saw how much this stuff costs!
So I've been starting to cook with things he can eat now, I'll make one dish for us, and a separate one for Callahan. I've been finding substitutes for things like eggs and milk in baking, and my Mom, who is great cook and into health foods, found out many things also so we can work around his allergy. Did you know they have "ancient grains" that are more pure forms of whole grain wheat, and most who are allergic to wheat can eat those? Kamut, and spelt, are those grains. And then the other grains he can eat are quinoa (like rice), amaranth (a super grain), barley, millet, rye, and buckwheat (those last four were the ones I knew and had used before). We have also found some great resources online also for kids with allergies. So it's great it's so easy to access now.From the stool sample, we found out his digestion is pretty normal, but he was pretty dry, his glucose was a little elevated, he had excess fat, and elevated levels of white blood cell. We also found out that he doesn’t have celiac or Chron’s disease. So that's some good news!
Some relief, but we’re still on the edge of our seats, as the elevated white blood cells and fat in the stool could mean many different things. I guess we’ll have to wait to find out. But I feel so blessed that this is something we can work through. I saw a few fragile children in the hospital who were dealing with great medical trials, who might only live a few more days. Though I kind of felt sorry for Cal, being there made me feel overwhelming feelings of gratitude that it wasn't as bad as it could be, there are lots worse things out there it could be, and I feel very grateful. Another impression I had was to hug my kids more and family and enjoy my time with them. Life really is so fragile. We never know how long we'll be here, but we also need to remember that it's all in the Lord's hands, and we'll be here as long as we're needed. Our days are numbered. In the mean time, we're going to have a good time and make best of this new adventure!




