I have a wild fantasy that one day I will sit down to a family meal without fear that my child will start puking at any minute. I won't cringe every time he jumps off the couch or rough houses with his sisters because there's a chance he'll get hurt, cry, and puke. Maybe there will come a day when I'll prepare spaghetti sauce without the slightest apprehension that a tiny slip of onion might have migrated into the sauce only to end up in the final bite of Roo's plate thus obliterating what was just a moment ago, a nutrient-dense, high-calorie meal. The baby scale will become a relic of the past. As will the baby bottles, 1 AM feedings, 4 AM feedings, constant meal-time television, songs, and other distractions we employ to sneak in a few more bites before he can realize what's happening.
Needles to say, it's a far off land I'm dreaming of. We're almost 3 weeks into the Budesonide and there's no change, at least on the vomit front. If anything, he's vomiting more that he was a month ago. Gagging triggers it. Unfamiliar textures and flavors trigger it. Being full triggers it. TMI, perhaps, but straining with bowel movements can trigger it. Today a yogurt-induced stomachache triggered it. Sometimes nothing at all triggers it and he goes on playing like it never even happened. But most of all, crying triggers it - and when you have a 2-year-old (on steroids, I might add) that you're afraid to let cry, it leads to some interesting behavioral scenarios.
We still don't know for sure if the Budesonide is having an effect but the signs are less than encouraging. On one hand, he seems a tad happier especially upon waking from naps and first thing in the morning. He used to be inconsolable at those times and now, he's generally chipper. Beyond that, however, no increased appetite. No improvement in the oral delay. No decrease in vomiting. No weight gain.
Thursday, February 17, 2011
Friday, February 11, 2011
Cheese!
Giordano's pizza party Wednesday, veggie-feta pasta topped with Parmesan last night, good Wisconsin cheddar, lactic acid starter culture-laced salami, real buttered toast, and plans for Valentine's Day ice cream sundaes. I don't know about the kids but I'll be kicking and screaming if and when we're forced to return to our dairy-free ways. So much fun. I might make macaroni and cheese for lunch and I don't even like macaroni and cheese.
Thursday, February 10, 2011
Growth Charts and Milkshakes
We had our big appointment yesterday with our GI team including our CNP, GI doctor, nutritionist, and various researchers and residents. Overall, the meeting went better than expected. Aside from parking garage chaos and Roo's buffoonery which included repeated diving off the examination table, pilfering and eating 3 Dum Dum lollipops from my purse - mostly in front of the nutritionist, and running head first into a porcelain sink that happened to be at his eye level, things went OK.
We're now about 10 days into our Budesonide trial. I still can't tell if it's working to clear the EoE, but we're cautiously optimistic. The team gave us an approximate 80 percent chance that the meds will work to clear him up, however temporarily, and said it could take a few weeks before we start seeing results. I would be a lot more comfortable with 99.9 percent odds in our favor, but I suppose it could be a lot worse than 80.
Exciting for us, though not as much for our CNP, was that Roo tipped the scales at 11.1 kg. That's 24.4 pounds! Yes, he was fully clothed, but his shoes were off, so how much can a pair of sweatpants and a long-sleeved t-shirt really weigh? The CNP was discouraged because he was "down a little bit" (maybe a few ounces - but they weighted him WITH his shoes!) from his last weigh-in at the January scope. But, as Mufasa and I studied his growth chart in detail, we were happy to point out to her that he is up almost 2 pounds since early November. In fact, that gap between him and the bottom of the growth chart has closed up quite a bit. He's still not exactly on the chart, but he's more of a finger width away now, rather than an entire finger length as was once the case.
We talked about what if the meds don't work, what if they do, NG-tubes (nasogastric - the kind through the nose) versus gastronomy tubes (g-tube - the kinds directly into the stomach). We talked about his behavior issues and steroids are likely to blame, at least to some extent. And we have decided to reintroduce dairy to his diet.
According to GI, if the Budesonide is working, he should be able to eat any of the foods that are causing his EoE. We've opted not to go so far as to put beef, peaches, or apples back into his rotation since he has had at least once positive allergy test to those foods. Eggs and all nuts are still strictly off limits because they are IgE mediated allergies for him (he reacts immediately). Dairy, however, has always been questionable. The prospect of opening up his diet to include dairy is a beautiful beautiful thing. The fat, the calories, the variety, the possibilities!! On the other hand, we might be doing more psychological damage here as we allow the kid to indulge in macaroni and cheese, pizza, milkshakes, and full fat cheddar cheese only to take them all away again in a couple of months if the Budesonide course is unsuccessful. So, where there's an up, there's always a down. Seven weeks to the next scope.
We're now about 10 days into our Budesonide trial. I still can't tell if it's working to clear the EoE, but we're cautiously optimistic. The team gave us an approximate 80 percent chance that the meds will work to clear him up, however temporarily, and said it could take a few weeks before we start seeing results. I would be a lot more comfortable with 99.9 percent odds in our favor, but I suppose it could be a lot worse than 80.
Exciting for us, though not as much for our CNP, was that Roo tipped the scales at 11.1 kg. That's 24.4 pounds! Yes, he was fully clothed, but his shoes were off, so how much can a pair of sweatpants and a long-sleeved t-shirt really weigh? The CNP was discouraged because he was "down a little bit" (maybe a few ounces - but they weighted him WITH his shoes!) from his last weigh-in at the January scope. But, as Mufasa and I studied his growth chart in detail, we were happy to point out to her that he is up almost 2 pounds since early November. In fact, that gap between him and the bottom of the growth chart has closed up quite a bit. He's still not exactly on the chart, but he's more of a finger width away now, rather than an entire finger length as was once the case.
We talked about what if the meds don't work, what if they do, NG-tubes (nasogastric - the kind through the nose) versus gastronomy tubes (g-tube - the kinds directly into the stomach). We talked about his behavior issues and steroids are likely to blame, at least to some extent. And we have decided to reintroduce dairy to his diet.
According to GI, if the Budesonide is working, he should be able to eat any of the foods that are causing his EoE. We've opted not to go so far as to put beef, peaches, or apples back into his rotation since he has had at least once positive allergy test to those foods. Eggs and all nuts are still strictly off limits because they are IgE mediated allergies for him (he reacts immediately). Dairy, however, has always been questionable. The prospect of opening up his diet to include dairy is a beautiful beautiful thing. The fat, the calories, the variety, the possibilities!! On the other hand, we might be doing more psychological damage here as we allow the kid to indulge in macaroni and cheese, pizza, milkshakes, and full fat cheddar cheese only to take them all away again in a couple of months if the Budesonide course is unsuccessful. So, where there's an up, there's always a down. Seven weeks to the next scope.
Monday, February 7, 2011
Roid Rage?
Roo's been taking his Budesonide-raspberry sorbetto slurry two times a day for just over a week. The first few days were bad - vomiting, crying, food refusal, the gamut. The next few days were a little better, meaning, he didn't vomit. A couple of times in there he even acted ravenous. Then, yesterday he was back to his old tricks. He didn't eat much, just wanted to sit and suck his thumb. He did not vomit but he did give us the old shivery-faced pucker that usually indicates he's about to spew after taking a bite of something that's not agreeing with him. In this case it was chicken, one of his usual favorites.
Then there's the part where he's become sulky and angry, throwing things both generally and at human targets, insomnia - his, and as a result, ours. Oh, and plenty of blatant disobedience. It's unclear whether he's experiencing some sort of toddler Roid Rage or if he's just being a 2.5-year-old boy who had 4 days off from school last week. Either way it's out of character and I won't be sorry to see this phase end. Soon.
This course of steroids will last 8 weeks and then he'll get another scope to determine whether or not it worked. Of course, I've been scouring the Internet - always a highly recommended activity when attempting to self-diagnose - and it appears as though many (most? all?) EoE sufferers who respond to the Budesonide treatment respond fully within 2 weeks. Fingers crossed.
Then there's the part where he's become sulky and angry, throwing things both generally and at human targets, insomnia - his, and as a result, ours. Oh, and plenty of blatant disobedience. It's unclear whether he's experiencing some sort of toddler Roid Rage or if he's just being a 2.5-year-old boy who had 4 days off from school last week. Either way it's out of character and I won't be sorry to see this phase end. Soon.
This course of steroids will last 8 weeks and then he'll get another scope to determine whether or not it worked. Of course, I've been scouring the Internet - always a highly recommended activity when attempting to self-diagnose - and it appears as though many (most? all?) EoE sufferers who respond to the Budesonide treatment respond fully within 2 weeks. Fingers crossed.
Friday, February 4, 2011
Snow Day #3
The twins had a dentist appointment on Tuesday morning which prevented them from attending school. Then The Blizzard (Snowpocalype, Snownami, Snow My God, etc.) hit Tuesday afternoon and the wee ones are yet to return to school. Needless to say it has been a very long week.
So I made these. Egg-free, dairy-free, nut-free, and apple-free but you'd never know it. Too bad I have to share with the kids.
So I made these. Egg-free, dairy-free, nut-free, and apple-free but you'd never know it. Too bad I have to share with the kids.
Tuesday, February 1, 2011
Oh Puke
Why is he still puking so much? Once last night. Again this morning, at the dentist I might add. Incidentally, he's been asked to refrain from all food and drink prior to dentist visits from here on out. And again tonight at bed time. How awesome will it be if he's allergic to Budesonide? Is that even possible?