June 10th - :-) Update again!

Meg here! Well, what a long, strange trip it's been! We've been riding the reflux wave (ew, nasty image there!) for quite a while, and we're finally starting to see improvement. It started like this:

Maddie had been to the Dr. to be seen about reflux a few times, and she was put on Prevacid and more Zantac than before. Saw no improvement. We started putting rice in her bottle (1 tsp. per ounce). Saw no improvement. Meanwhile, we're basically spending every waking hour at home trying to get her to eat he 19.5 ounces that Dr. Lerch said she'd need in order to gain. Saw no improvement, and she still wasn't gaining. She wasn't losing, but she she hadn't gained since mid-April.

May 31st I was home with Maddie and decided "enough is enough" and I called her pediatrician to get numbers of pediatric gastro's that they work with. Called around, couldn't get an appointment until July 19th. *Sigh* But at least we had one. Meanwhile, the kiddo won't eat. The next day, Friday, I go into work and stroll down to chat with a friend, who's actually out sick. I strike a conversation with her substitute teacher, who mentions that her daughter had surgery at Children's Hospital of Philadelphia (CHOP) that week. I had just called CHOP to schedule an appointment, left a message twice, and hadn't heard back. I whined about this, and this lovely lady's eyes lit up, she took out her cell, and called her husband.

Who happens to be the manager of nurses at Children's Hospital of Philadelphia.
That afternoon she got us an appointment for MONDAY. Somebody up there likes us!

I spent the weekend typing up what she ate when, as an example for the guys at CHOP, and I also typed up the questions below. She had a great appointment, was with 2 doctors for a total of an hour, and in addition to being examined, diagnosed, and treated by one of the top gastro's in the country, she was described to be "remarkably strong!" They made some changes in her medications, had us double the amount of rice in her bottle (both for keeping it down and for the extra calories and iron). She also needs to have an upper GI done, to make sure she's all right, tummy-wise.

We made all the recommended changes, and we can finally say: We've seen improvement! She now takes 4 or 5 oz. bottles pretty willingly (sometimes she'd rather play or sleep, but she usually can be convinced to eat first). She doesn't spit up near as much, and she just seems happier. I wasn't sure if it was the added rice of the medicine, because she seemed to eat better the moment we increased the rice in her bottle...but we forgot to bring her meds over to Bob's parents' house on Friday night, and BOY was she a spittin' up CRANK, so I'd say the meds do their job pretty well. When you remember to take them with you.

I pasted in the quesitons I asked the doctor on Monday below, and what their responses were. I actually brought a clip-board and wrote down each answer as I quizzed the docs. The head gastro Dr. and the fellow were both very nice, and I really felt listened to. I could tell they took Maddie's reflux very seriously - especially since she yet again had not gained an ounce when she was weighed that day. We had a great experience. I guess that's why CHOP is the top kid's hospital in the country. :-) THANKS again to my substitute teacher friend, Kathy, and her husband George, for getting us in.

Here's our questions and our answers:

Maddie seems to have an aversion to things associated w/ eating (holding position, bottle, even the chair in her room where we usually fed her before). Will this go away on its own when her tummy feels better or will we have to ‘fix’ it?
Yes, she has an eating aversion. She's learned that it hurts to eat, so she doesn't want to. This will most likely go away when she finds that it doesn't hurt anymore (due to the changes we're making).

Should we give up on bottles and concentrate on sippy cups?
She's really young to be drinking exclusively from sippy cups. Give it a while and with the new meds and cereal in her bottles - give the bottles time.

Is her tight-sounding coughing and occasional congestion related to the reflux, or is it another issue?
Yes, and they're concerned about that cough, because it signals a worse form a relfux, and esophagus scarring. It should go away, but if it doesn't they'll look at her throat with an endoscopy.

Does formula make a difference in reflux? (no known allergies, currently trying Enfamil Gentlease equivalent)
Nope, formula really doesn't matter. Stay on the Gentlease equivalent for now, just for the sake of not changing two things at once.

There's a smell coming from her mouth. I can't describe it, but it's not like any smell that should be coming from a baby's mouth.
That is most likely stomach acid. Yes, ouch.

Would you recommend any testing?
We'll look at it closer on the upper GI that she'll have shortly.

If so, what would that test entail?
She will drink a barium drink and they'll x-ray her as it passes into her system, looking for the path it takes and the shape of her body, making sure it's all shaped right and how much she's refluxing up.

How many ounces of formula a day do you recommend as the minimum for good growth of an active infant?
25, for hydration and to have her gain weight.

To what end do we go to get there? (Is force feeding really necessary, because I hate the idea.)
Don't force feed her. Her intake should improve as we change her meds and make her feel better. Try cereal, be persistent, but don't worry if she won't eat, just try again later.

How much cereal is ok in one day, understanding that we’re only giving her as much as we are to get ounces in her?
Bring on the cereal. The only reason they're concerned about cereal intake is it can cause constipation (not a problem here!) and it can cause babies go gain too much weight because of extra calories (again, clearly not a problem!)

We understand that solids are only for practice at this point, but since she takes them like a pro, will they count towards her nutritional needs?
Bring those on too. Fruits, veggies, and those little meals are great. They also add water, which she needs. All those fruits and veggies are nothing but themselves, and water. And she needs both.

Are the doses she’s on of Zantac (1.2 ml twice daily) and Prevacid (7.5 mg once daily) good?
Nope, we're increasing them, and she' s going to get the Prevacid morning and night now. Should help with the evening feedings.

Who will change them as she improves or grows? (CHOP or regular pediatrician?)
CHOP will. (Good. I think my pediatrician is taking this whole baby-won't-eat thing a little too lightly. And mommies don't take that kind of thing lightly.)

Prevacid: Are we doing it right? (½ of the little orange bubbles floating around in the dissolved solutab water?)
Doesn't matter now, because we will split the pill and dissolve half at dinner and half the next morning, so either way she'll get the full dose in 24 hours.

What timing do you recommend for her medications?
Same as before. 1/2 hour before breakfast and 1/2 hour before dinner.

When should she stop taking the Zantac (or should she stop at all?)
She will stop, but not yet.

Can we give her Mylanta if she seems particularly bad?
Yep, if she seems bad, like she's having trouble eating, give her 1-2 ml.

When should we see improvement (Normal = she’ll eat willingly and eat a normal amount for a 6 month old)?
She should eat better in 3-4 days, definitely see a difference by a week.

If things don't improve, what should we do? (Follow up appointment?)
Call in 2 weeks no matter what, earlier if she gets worse.