Community Discussion Forum That’s PKU life! anybody in Wisconsin Reply To: anybody in Wisconsin

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Hi Janice, I’m from Wisconsin. Here in Wisconsin formula is covered and foods such as pastas, baking mixes, peanut butter, cereal and a few other things.
I go to the clinic in Milwaukee (Children’s Hospital). Me and my younger sister see Dr Pamela Trapane (medical geneticist), Bridget Reineking (dietitian) and Heather (genetic counselor), I never remember her name even though I have been seeing her since I was about 6. I started seeing Dr T and Bridget in Sept of 2006 and before that I really didn’t like going to my PKU appointments at all. It was mainly because the previous dietitian that I saw was…controling. Everything had to go her way or no way at all, which was a huge problem because my mom was the same way. For example, my mom used to run the PKU organization of WI from when I was about 3-10 and my mom wanted to do things like holiday parties, summer picnics etc but my dietitian at the time didn’t want to do that.
BUT let me reassure you she has retired and in the past 2 years or so the clinic at Children’s has changed drastically and all for the better. Everybody at the clinic is so very nice and helpful, I email my dietitian anytime I have questions which is something I would never have done in the past. Whenever we go for appointments things are always explained in terms that I understand (which isn’t too hard since I have a really good understanding about a lot of things that they tell me ), but they also make sure that my sister understands what they are saying aswell since she is only 9.
The clinic at childrens has even started to put together holiday parties and such like my mom used to do. Wisconsin does have an organization, but they didn’t do a holiday cookie exchange this year so my clinic did. My dietitian even said she is trying to get almost like a Cambrooke’s store at the clinic so we can get food from there to avoid paying shipping, waiting for the food to be mailed etc.
Anyway, sorry this was kind of long but ask me anytime you have questions!!! nBreanna 16 CPKU

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