The Budesonide Study (Appointment #1)

Before being accepted:

The dr. reviewed all of Hunter's old records, examined him, took our history, etc. and said he looks like a perfect candidate for this study. He needed to have an endoscopy (scope) with biopsies first though to be sure.

He had this done a couple weeks ago. They gave him versed first so they could get the IV started ahead of time, draw blood and get a few things done that had to do with the study, aside from the scope. They pre-treated his asthma with albuterol to be on the safe side and gave him zofran for nausea. (All three kids vomited a LOT their first time getting anesthesia, so they now automatically get zofran).

They also got his liver enzymes retested as well since they were high when he was in the hospital a few weeks back and had us bring in a urine sample.

If he was clear, (few if any eosinophils), that would be the best news of all because it means he would've gained 7 new foods (apples, pears, peaches, grapes, green beans, spinach, and white potato)! Unfortunately though, the dr. came out with pictures and said that although Hunter tolerated everything fine, there was "mild furrowing and exudate in his mid-esophagus." The other areas looked "ok." He said it didn't look perfect, but not bad either, so we needed to wait and see what the official results said.

Pathology at Phoenix Children's Hospital reviewed the slides, and we were told that it looked like Hunter met the criteria....barely. (He had the minimum amount of eos). Per the study guidelines though, his slides had to be sent to Cincinatti Children's Hospital for review. They agreed that he qualified (a minimum of 15 eos in at least 2 different places in the esophagus).

This was both good and bad news. I'd rather see 0 eos, but if he's going to have them, 15 is on the low end, and I'm happy that he *only* had 15 while eating white potato (as that's a big EE trigger for a lot of people). I'm also glad that if he was going to have them that at least he met the criteria to be in the study. I was really dreading having to take away these new foods, but now we get to keep them...at least for another 3 months.

Details of the Study:

One out of every 4 kids in the study will be given a placebo, one will be given a low dose of budesonide, (a swallowed steroid designed to coat the esophagus and reduce inflammation), one a medium dose, and one a high dose. We will not have any idea until the end of the study which group Hunter is in.

Everything needs to be kept the same. He will remain on all his usual medications. He will keep the same diet. We are not to add or take away anything from him. We need to try to keep his environment the same as well...no new pets or anything like that.

He will go in every couple weeks for blood draws and an assessment. He'll have one all day appointment in a few weeks where he'll stay at the hospital for 8 hours. He'll get an IV that day and blood draws every couple hours I believe...not sure what else is happening at that appt.

At the end of the 12 weeks, he'll undergo another endoscopy with biopsies to see if there is any improvement. I think we have one more appointment a couple weeks after that.

His First Appointment:

It was really basic. He got his first dose of medication while we were there so they could observe him afterwards....no problems. The doctor checked him over. We got instructions on how/when to give the medication and our schedule for the next few months.

He has a box full of bottles to last us to the end of the study. He has morning bottles and afternoon bottles. He takes his first dose right after breakfast and can't have anything to eat or drink..can't even brush his teeth....for 30 minutes after. He'll then get his second dose right before bed...same thing...no food/drink/tooth brushing.

Other Random Stuff:

The highlight of Hunter's first appointment was when the fire alarm went off. He went nuts! (in a good way....) He is OBSESSED with anything "fire fighterish." The lights were flashing in our room from the fire alarm. Hunter was wearing his fire fighter shirt that day and the dr. made a comment that we would be safe since there was a fire fighter in the room. (Hunter had the BIGGEST smile!). We started to evacuate, and Hunter was so excited that he might see "real live fire fighters" but then the alarm shut off and we were told to return to our room.

Speaking of Hunter's firefighter obsession, a few weeks back when we were at the allergist's office, we were actually in the appointment talking with the dr. and Hunter asked, "Wouln't it be cool if this whole place just caught on fire and the fire fighters had to come?" He was so excited! The dr. quickly turned around with a shocked look on his face. (Lucy, you got some esplainin' to do!)

This next part has nothing to do with the study, but I thought I would end with yet another embarrassing/funny story. We were at the lab getting a blood draw for Kaleigh. Hunter was picking his nose. I tried to distract him, but he knew what I was doing. He announced VERY LOUDLY that he had dry boogers in there and that the ONLY way to get them out was with his finger and that kleenex does NOT work for THAT kind of booger. I'm used to getting embarrassed by now, but Kaleigh was MORTIFIED.