Community Discussion Forum Adults and PKU Best Clinics Reply To: Best Clinics

Avatar of Breanna

I am from Wisconsin as well, but my sisters and I attend the PKU clinic at Children's Hospital of Wisconsin in Milwaukee. Up until recently the Milwaukee clinic provided absolutely wonderful care. I truly felt like the doctors, dietitians, and genetic counselors really wanted what's best for me, and they cared about me as a person rather than just as a patient. There was a point when I emailed my dietitian weekly, and I loved going to PKU appointments. We now have new doctors, and I am not sure how satisified I am with this new staff.

I do not want to give the new doctors a bad name by any mean, because I am trying not to make any rash judgments before I get to know them. However, there have been more than a few times that we have felt like the clinic has not taken our concerns seriously (ie my ninteen month old sister developed tremors, and my recent lab work showed abnormal thyroid levels). My sisters tremors appeared around the time when we were transitioning from our old doctor to the new ones. The new doctor told my mom it was no big deal. It almost felt like he thought she was a new paranoid parent. She has nine kids, three of which have PKU, so she knows what is normal for a baby and what isn't. When my mom spoke to our old doctor she immediately got my sister in to see a neurologist. With my recent thyroid issues I have decided to take this to my regular physician, because my PKU doctor didn't see it as a problem even though thyroid issues run in my family.

On a more positive note as I'm sure you already know we have wonderful coverage in Wisconsin. If I remember correctly the only difference between coverage for the Madison clinic and the Milwaukee one is that in Milwaukee our blood tests are provided free. The Children's Hospital clinic also does a great job of setting up events such as cooking classes, holiday parties, and baseball tailgating parties.

I hope this helps!

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