Hi I havent been on in a while, since I was last on I have had a baby who also has pku. So I have 2 with pku and 1 without. Cyra is going to be 5 in 3 weeks she has pku and Chase is 3 he does not have pku and Kenny is 8months old and he does have pku. okay so the point of this email is that we are moving to wisconsin, so I was wondering if anybody is from that area. We just wanted to know about the doctors there…we have found out there are 2 clinics there, and we where wondering how it works…on pkunews it has the list of states that provide foods and formula, and it says wisconsin provides both, so we where wondering if anybody has any information on that. njanice
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
Hi i am so glad you responded I was really looking for someone in the area to talk to about the doctors. I called the clinic in Milwaukee today and they said the kids would be with Pamela if we go to the Milwaukee clinic we are still waiting to see if the insurance company is going to specify which clinic we have to go to. So I am glad to hear you like Pamela. SO you like the other people at the clinic too? What about the hospital itself is it pretty nice? We have had some doctors we really do not like….they thought they where know-it-alls!! Anyway do you know how I would go about getting the foods you said the state provided? And is there a Wisconsin group website. We live in Indiana right now but we have always went to the Illinois group they have a family camp that we go to every year. Have you ever went to the weisman center? That is the other clinic we have heard of there. ANyway thanks again for responding we will talk to you later. nJanice
The hospital is okay. I’ve never gone anywhere else for my PKU, so I really don’t have much to base it off of. We go to the curative center for PKU appointments, which is actually a small separate building from Children’s main building. The genetics center moved to Curative when I was about 12 I think, you might have to check out a map to know what I’m talking about.
Both me and my sister love the whole staff at the clinic. Compared to the staff we used to work with they are amazing. If you see Dr T I’m guessing you will probably see Bridget aswell, she works wonders lol.
When we get low pro foods we just call Children’s Hospital and put in an order and then a day or so later we drive down to the warehouse near Childrens and pick up what we ordered. If I’m correct I believe if you live 50 miles or more away they will ship the food to you, but I’m not 100% sure.
I’ve never actually been to the Waisman center. I have meet Lisa (the dietitian there) at Maternal PKU camp for teen girls last summer. She was really nice. I think the organizations website is PADOW.org, but I’m really not sure. nBre
Okay well thanks for the info. I dont have any other questions for right now, but I am sure I will!!!HAHAHA!!! We will be moving sometime over the next 2 months…as soon as we find a house, but my husband will be staying in hotels there starting next week until we find a place. we have actually had 3 different PKU doctors so far…and Cyra is only 4!! We where in the military and stationed in Texas when Cyra was born so she went to a clinic there first. Then we moved to Indiana and she was with a doctor at Rileys Childrens Hospital. Then on of the doctors there died, and so she got switched to a different doc. we did not really like the 1st doctor and Cyra was a little afraid of him. But we are sad to leave the new doc. she is really great and the kids love her. So anyway I will talk to you later Bye
Aww, I always hate it when things like that happen. My mom said my very first Dr retired when I ws about 3 or 4 and she said I loved her! I don’t remember her though. Good luck with moving! nBre