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Experts including Dr. Barbara Haber and Dr. Elizabeth Rand provided detailed updates on Biliary Atresia at the annual BA Education Day. CHOP's Biliary Atresia Clinical Care Program has been caring for children with the liver disorder since the 1970s.
Audience: When you get the jarred baby foods, do you have a preference of how you fortify them?
Sarah: I do not have a preference. I do have a couple of tricks. When you're getting to the jar of baby food and you're trying to use — is it MCT oil or are you talking about the powder?
Audience: Yes. Stage 1 and stage 2.
Sarah: Stage 1 and stage 2 — I think typically I, kind of, try to do it by food group, so to speak. I find it's easier to use the oils in the meats and things like that. They tend to take relatively well to that because there's a higher, my summarization is because there's a higher protein and a little bit of a fat content there. So I think it mixes better than when you're trying to add it to the fruits and the vegetables. So sometimes I'll use low-dose amounts to do fruits and vegetables, if we can.
Oh, see, now there's questions. Yes?
Audience: Our son rarely ever eats protein. It's really hard to get him to eat anything that is protein. Should we be supplementing his diet with the separate A, D — should we be giving him separate vitamins or just the multivitamins he takes or —
Sarah: So for protein you mean like not a lot of meat and chicken and fish and that kind of stuff?
Audience: Like barely ever.
Sarah: Okay so —
Audience: He's a vegetarian.
Sarah: Okay. So protein comes in many sources. So there's a lot of people think when they think protein, they think meat. Because we're a meat society. I'm a meat lady. But there's also protein in beans, in peanut butter, and things like that. What I would typically recommend is, if you're a patient here at CHOP, you can get a three-day diet record done, and our staff will analyze exactly how much protein he's taking in. Because you also get protein from things like bread and cereal and milk and things that not — there's a little. I mean it's three grams here — here a gram, there a gram, everywhere a gram gram. But like once you do it you realize — Hey, that's really actually quite a lot. I hardly ever see, honestly, true protein deficiency. It's very difficult. But there could be some other things that we could look at, perhaps, and then that might be a good stepping-stone.
Audience: Our son, he's 7 months old (inaudible). I want to give him yogurt because yogurt has the live and active bacteria. Is that bacteria okay? (Inaudible).
Sarah: Yeah, it's totally fine. It's totally fine. It's a different kind of bacteria. When we're giving something like neomycin, like an antibiotic, we're wiping out the stuff that we don't really want hanging out in there. The yogurt is going to help grow back what we do want in there. So there's a lot — yeah, absolutely.
Audience: And then they have new baby cereal out too with probiotics in it. Is that like a same kind of bacteria?
Sarah: Yeah. The jury's a little out for me on the grain-based probiotic piece. So I don't — I'm not quite sure. I haven't gotten to look at the literature from it enough. Whereas, the yogurts, I do know that what they're giving you is actually what they're saying they're giving you. Yes?
Audience: With some of the oils that you can buy over the counter, Do you have any examples? (inaudible).
Sarah: I did on my other slides. There are two that are out that are reputable in terms of the community, the dietitian community. The problem is that when you get to things like oils in terms of you're looking for pure MCT oil content. These oils were developed typically for this patient population, for others too, that want higher MCT oil. But you have to, kind of, have the relationship with the manufacturer to, kind of, prove that you're having as much MCT as say the Novartis product that everyone, kind of, knows and loves in that container. But I can make those brands available to your doctors here, and they can talk to you about them.
Audience: She had bought up that cod liver oil can have too much A. So you have to be careful, not all oils are the same.
Sarah: Yes, absolutely, absolutely. And it can also have a boatload of D in it, which you think would be helpful, but again the A you worry about toxicity. So you definitely always want to talk to your doctor if you're reading things, if you're finding things that are new and different. Nutrition information is one of the most disregulated, unregulated things on the planet. So please make sure that you're talking to your providers because there's a lot of stuff that's out there that's just bogus.
Audience: My daughter, she wasn't hitting the 5 ounces per week weight gain and then they wanted to supplement her with the MCT oil. The MCT oil actually gave her diarrhea so she actually lost 5 ounces in one week. So it wasn't really a good thing. What can I do? Then I was going to start with the cereals. And then (inaudible) stopped and after a little while (inaudible) intake with milk. What can I do about this?
Sarah: In terms of — what was the first part of your question again? I'm sorry.
Audience: It was — she wasn't hitting the 5 ounces per week weight gain thing. She was actually hitting the 4 ounces, something like that.
Sarah: Sometimes when you start MCT oil, there's a little bit of the diarrhea at the beginning just because your body is not quite used to it. A lot of times if you back off on the dose a little bit and then you try to gradually add it back in, your body does just fine. It's like anything else. Has anyone ever here started fiber supplementation not knowing what you're doing yourself? Just been like — Hey, I need more fiber. Yeah, you find out real quick. It's the same kind of concept.
Audience: Okay. So I should be fine with that? And can I just start the cereals again? Or —
Sarah: I usually like to wait a couple — Yeah, I was going to say. I always — usually like to wait until things get a little bit down to baseline before you change anything. Because, if you change two things at one time, you never know what happened.
Anyone else? Yes?
Audience: Can you use soybean oil for vitamin E?
Sarah: Do I use soybean oil for vitamin E? A lot of the soybean oils have higher contents of vitamin E. I typically recommend doing the is it — I forget the name of it. What do we use?
Sarah: Yes, yes, yes, whoever said that. The medication piece of it because typically if I'm trying to go push an oil, if it's a younger kid, I'm usually pushing the MCT because it's going to be absorbed much better.
Audience: Does the MCT oil (inaudible) you start after you're off the Pregestimil? And how do you know (inaudible)?
Sarah: It depends. That's a very clinically relevant question. It really, kind of, depends upon the kid's clinical presentation. The MCT oil, the big bonus of it is that it doesn't have to use your liver to get absorbed, and that's a bonus for this population. So a lot of times it depends on the cholestasis, it depends on a lot of things for each kid.
Sarah: If your docs wanted you to be on it, they'd be prescribing it — is usually the way I would say that.
Anybody else? Yes?
Audience: Our son is 7 months (inaudible) Pregestimil (inaudible) at what age (inaudible)?
Sarah: I use Pregestimil in kids who either won't take the oil or have been on oil before, or they have extra Pregestimil powder. It's just another way of getting the calories and things like that. The benefits of using it are the same as using the MCT — I would use either/or. I wouldn't be supplementing foods with both.
One more? Last one.
Audience: I just want to add a comment. My daughter is 10, and I went through all of this with her and eating. And I spent every waking moment for, like, three months (inaudible) no way that I was not going to be able to do this with food. And I just want to say, if anybody is even thinking about not having a feeding tube, I can't say enough how much it did for my daughter. In fact, there are times when you just can't (inaudible) or it doesn't work--
Sarah: And it's not your fault. That's the part I like to tell parents too.
Audience: We were convinced that we would work with food, and it just didn't. And I always wished that I had not fought the feeding tube and done it earlier because it was a miracle.
Dr. Haber: And it sometimes — I have to say that doctors are reluctant, even when they should be more active. Not in yours per se —
Sarah: I'm not like that.
Dr. Haber: There are times when people go, like "Oh, well let's see at the next visit." There's really — being ahead of the game is always a better thing.
Audience: My question (inaudible) when do you make that call? (Inaudible) make a decision today (inaudible)?
Sarah: Can we bring that up at the panel?
Dr. Haber: Yeah, we can —
Audience: (Inaudible) See what it looks like next week.
Sarah: You know, nutrition is something that almost everybody is willing to talk about all day, and it's very important. But one of the things is let your doctor know that you're not resistant necessarily. Because they may be thinking, "Well, you know, maybe we should wait another week. It will be better." There's hardly any harm in trying it. It's a little bit complicated to set up, but not harmful. It's just more nutrition. Okay.
Sarah: And I'll see you around at the panel.