Chris' Appointment With The Specialist

Chris' Appointment With The Specialist

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Chris' Appointment With The Specialist

December 7, 2009 in Uncategorized

Hey there everyone. I just wanted to give an update on Chris' appointment on Friday. First of all, thanks to the ones that gave me suggestions for things to ask the doctors while we were there. It is a two hour drive to the specialist center so we wrote a list of questions on the way down there. It really is an easy drive, straight shot down the interstate and our Garmin actually took us to the right place. We got to the center and went to the correct floor/department. It's a pediatric unit but they also see adults. We checked in and went to have a seat in the waiting room when they called us. We didn't even have to get situated :). We met with three different people. The doctor, geneticist, and the dietician. The doctor went over the reasons why Chris should go back on his diet, which he had already decided to do before the appointment, and explained how his symptoms could become permanent damage over time if not addressed now. Penny, the dietician, then sat down with us and went over all of the details. She was very thorough and helpful with all of our questions. We were there for over two hours discussing the different approaches we can take. For now, Chris is going to cut out all meat and is allowed 30 g of protein a day from food and 40 g of protein a day from his formula. He is still going to eat dairy and what not for now and will later cut that out. We were also given the supplies to test his blood. Penny said that this will be more trial and error than anything because every patient with PKU is different. Once they monitor his blood for awhile they are going to try him on Kuvan. They want to see what his levels are before so that they can see if he is a responder. We started his food journal this past Saturday and realized how hard it is to stay under 30 g of protein while still allowing him to have dairy. Chris and I have been talking about it and I think in order for him to keep the breads he is going to cut out dairy for now. Saturday he had 27 g of protein and Sunday he had 37 g of protein. Today we're going to try and get it at or below 30 again. Then tomorrow we will be pricking his finger and sending off his results. I also found this website to help me figure out just how much protein things have. Certain things say 0 g of protein on the box but really have .5 or .6 per serving. This way we can try to keep his journal as accurate as possible. I also need to order the PKU Food List book. Everything seems really positive and I'm really excited to have such a great medical center to go to. This is a life time commitment and I believe we got a really great team of doctors helping us out. This is Shands Medical Plaza, Gainesville, FL. The plan is to go back in three months and reevaluate Chris' progress. As always, I'll keep blogging and let you know how everything goes.

2 Reviews of Chris' Appointment With The Specialist

  1. Registered: Sep 12, 2006

    Posts: 0

    Franklin, Wisconsin

    I am so glad to hear Chris’ doctor appointment went so well. It sounds like you guys definitely have a great professional team supporting you. Use them, they will really come in handy! If you’re looking to order a PKU Food List you can go to They should have Virginia Schuett’s phe books in their store. It’s very helpful, because like you said some nutrition labels say 0 g of protein, but they could really have up to 0.5 g of protein (this is because companies usually round when labeling their products). Tell Chris I said good luck!

  2. Registered: Apr 24, 2009

    Posts: 0

    Cornwall, New York

    Wow – glad to hear all is going well! It sounds like a lot of adjustments right now for Chris, but once a routine is established it will become easier. As his levels decrease too, he will feel better as well. If you need any suggestions of what exactly he could eat in a day, feel free to message me. Right now, I’m eating about 20 grams per day. I am fairly tiny for my size, but have had no trouble eating over that amount. Like I said, message me if you want some suggestions for what he can and cannot eat in a given day!!

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