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Listener Questions

Program: Advice for Adults with PKU: Improving Your Life by Returning to Diet
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Andrew Schorr:

Yeah, It’s certainly, I mean, look, we’re talking about a rare condition and here now you’ve found some friends to help with this.  So here’s a question that came in for you, Matt, from Carrie, and you spoke about it a little bit, but wondered because we have parents of teenagers and children on and they wonder, was there anything in your childhood or teenage years that sort of turned you away from managing your PKU.  Was there any specific thing, or was it just getting to be a teenager and you were just kind of tired of it? 

Matt:

It wasn’t that I was tired of it.  There was no real specific thing in my life that turned me off to it.  I wasn’t teased or anything.  I mean, people were pretty understanding with it, so as I stated a little bit earlier when we first opened that I think it was time constraints.  I was just so busy in high school with sports and home work and meetings, you know, the Boy Scouts, and I couldn’t keep up with it anymore, and my parents didn’t push me to keep up with it anymore, so I kind of faded out.

Andrew Schorr:

When you look back, we mentioned community college, when you look back on those years and maybe some things along the way, and you are outgoing now, terrific conversationalist, really, Matt, do you look back and say, gee, I wish I’d done this earlier? 

Matt:

Oh, yeah, most definitely.  I guess the reason why I didn’t do it earlier is because I really didn’t feel that I needed to.  I didn’t think anything was wrong.  I was off the diet, I was eating regular foods, eating meats, and as far as I was concerned I felt okay.  I felt fine until I actually got back on the diet and then I realized how much better I felt.  I mean, I definitely would have done it a lot earlier if I would have known it was this easy as far as everything, you know.

Andrew Schorr:

Good for you.  We’re going to get your comments for other people in just a minute.  So, Rich Dineen, you’ve probably heard this before, haven’t you, what he just said, that you kind of don’t know what you don’t know until you’ve made the change.  You’ve heard that story many times, haven’t you, Rich? 

Mr. Dineen:

Yeah, I think it’s almost universal that a lot of times someone will come in the clinic and it is hard for them.  I think it’s sometimes hard for any of us to self assess yourself and you feel like you’re doing okay and sometimes only by somebody getting back on treatment and lowering their levels are able to sort of look back and say, you know, I do feel better and I don’t think I would have been able to make that comparison otherwise.  So I think Matt expressed it very well.

Andrew Schorr:

It’s so important.  So here Matt didn’t feel very outgoing, we talked about his social relationships, talked about how long it took him to navigate college and things like that, and a new person is what he said, Melissa and Michelle, his younger sisters, is the way they describe him.  So think about the relationships you have with others. 

So I want to go back to Maryam just about treatment for a minute.  You made the point very clearly about Kuvan and diet, and Diane wrote in on our pku@patientpower.info e-mail and she said, “Why is formula so important even if you’re taking Kuvan?”  Could you explain that, Maryam? 

Ms. Naziri:

Sure.  Again, Kuvan is used primarily to control the Phe levels, to bring them in optimal ranges.  It doesn’t mean that diet doesn’t need to be followed or medical formula doesn’t need to be taken.  When you think of the PKU diet the medical formula, the PKU formulas, are going to be the base of their diet as far as providing the Phe-free protein, calories, vitamins, minerals, nutrients.  And especially if we’re going to be implementing a protein or a Phe restriction we can’t necessarily take away a set of nutrients without replacing them somehow, and the formula is really integral in that.

Andrew Schorr:

Okay.  That explains it.  So, Rich, you and I talked about this on the phone the other day as you kind of giving me the landscape, and we talked about where there are so many health concerns where an adult can go in and have some sort of treatment, consultation and then they’re good to go.  Adults who are coming back into care for PKU can’t look at it at all as they’re just coming in for a tune up, right? 

Matt:

Right.  And I think sometimes people will have high expectations.  They haven’t been seen for many years and they’ll come in for that one clinic visit and they’ll hope and think they’ll get back on track with a single clinic visit and that’s it, but I think probably, as all of us have expressed this evening, that sometimes things have to be broken up in a lot of small steps.  And for some people it can be a fairly great deal of amount of work in terms of trying to meet their goals.  So I think people should expect that you’re wanting to develop sort of a long-term relationship with your PKU center.  It’s not just a short one-time thing.  These often will be people you’ll be working with for many years.

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