I recently moved to Melbourne Beach fl. My son recently started kindergarden and is having a hard time adjusting. Having come from a big city with other children with PKU, it was easy to find children that had the same thing. I moved here about 1.5 yrs ago and just now am finding how difficult it is to find friends with PKU that he can relate to. Please if anybody knows of any thing closer than Tampa or Olrando please help.
I would also like to find other parents on the East Coast of FL that have PKU kids. My daughter is only 6 mos. old. It sure would be nice to have some local support over the next several years! We live in Titusville, by the way.
Dear Kristy, nOh a new dx and a baby is hard but it gets easier as they get older. Who is your Genetisist?
I will be seeing MD Renolds on Nov 2 2007.
I am trying to get a support group together but I really dont know where to begin. Any suggestions. I will be speaking to MD Renolds about this to hopefully get some insight. nVivian
We see Dr. McReynolds at Nemours in Orlando. He’s great, but he cut his hours down b/c he’s working on retiring. I love the dietician there also (Sandy). What I’ve been having trouble with is the nurse that takes Hailey’s blood (you can read all about it on a thread I started titled blood tests (under “new to PKU”). I’m going to talk to them next time about letting us do the tests at home or at least letting our pediatrician do it. It’s quite a hike to Orlando, plus all the other stress that I wrote about in the blood test forum. Anyway, the only other people that I know of with PKU are from this site…in other words, I haven’t found anybody local yet, except for you. I think it’s a great idea to start a support group though so let me know if you need any help! n–Kristi
Sorry guys, I don’t mean to invade the parents section (again…I seem to do this alot). I just thought I would point out that there is a website called http://www.PKUworldlink.org that has a listing of people with PKU throughout the world. Obviously it isn’t everybody with PKU, but I believe there are 15 listened there in Florida (ranging from parents listing their infants to PKU adults). nThere aren’t any PKU support groups through your PKU clinics in Florida? nBre
As far as I’m concerned, you can “invade” the parents section anytime you want . As I’ve said before, you are full of information and I think most new parents love what you have to say and how positive you are about everything. Thanks for the additional info on the website. I added Ashley’s name to the list of people in FL.
I have finally met with MD Mcrenolds, he is actually a great physician. I love Sandy as well she is such a great wealth of knowledge . I told her about my idea to arrange an organization for children with metabolic disorders, there are many children out there that may not have PKU but have metabolic disorders. It would be great to have something like we had in NY that many children, parents and young adults each year would get together and have a huge picnic the turn out was amazing. I am as I have said before from NY where demographically was much more ava. That is why I believe we really need to be more proactive here in Fl . Although I can say it is difficult due to HIPPA and all the other varibles that come with it.
I am trying so any info as to how to start something would be great. nPS Bre I think your an amazing girl and it is wonderful that you are so involved in this site. You also have said something about a program for schools that require a PKU lunch do you have more info?
I actually don’t have much information about PKU school lunches. I think if you go to cambrookefoods.com you can call/email and I believe they have some sort of lunch program that you can find out about. But I’m not 100% positive. All I remember is that when I was in 4th grade and starting school my mom fought with my school because apparently in Wisconsin they are required by law to provide me with a lunch.
By the way good luck with trying to set up an organization for children/people with metabolic disorders. When I was about 2 my mom started the PKU organization of Wisconsin, but she had to stop when I was 10 because life was getting to hectic and now it is run by somebody else and called PKU and allied disorders of wisconsin (padow). I think the way my mom got past hippa was by giving flyers to my dietitian and she gave them to the families and whoever wanted to be apart of the organization contacted my mom. Eventually she somehow got a hold of addresses of all the PKU people so she was able to just mail everything directly to their houses. nBre
I’m glad that you’re appointment w/ Dr. M went well. Yeah, Sandy is awesome. I have no idea about how to get started on creating a support group here in FL, but I’m totally on board with helping anyway I can. How is your son adjusting…is it getting any better for him? At our last appointment at Nemours, they told us that we could start doing blood tests at home as soon as they teach us how (which will be next week). We’re also going to be starting Ashley on fruits and veggies next week so wish me luck! n–Kristi
Our dietician in Tampa came across your post. We live in Bradenton, our son has pku and my husband is currently the director of USMD in Florida. It is part of Unified to Support Metabolic Disorders. The group is in it’s infancy in Florida, but we held a golf outing in May 2007 for pku research and raised $16500. We also had a statewide social and info meeting in November at the zoo in Tampa, which was attended by aprox 30 PKU families (130 people) from all over Fl. After the new year we hope to have a membership drive, get more people involved and establish a more formal organization, with officers, committees etc. Please let us know if you would be interested in getting involved. Florida is a big state and we forsee needing “regional” committees. Our golf outing is May 17th in Bradenton this year. nCindy
In my eagerness to respond to Florida families, I broke some site rules. Two if you are counting. Listed an email address and my last name. So sorry………….
We went to the PKU day at the zoo… we enjoyed it very much. My daughter is only two, so to be in a room full of people with PKU is extremely surreal, to say the least. We traveled all the way from Pensacola which is up on the panhandle, right under Alabama. It took us 8 hours to get there, but I felt like it was worth it. We only have 4 PKU children in our entire area that I have met. Two of them live half an hour to an hour away from us, so I know what it’s like to feel like your stuck out there alone. I have found the internet to be a great resource to keep in touch with other PKU people. (Can you imagine how people with PKU felt BEFORE the internet?! *L*)
hi, my name is hannah i know i’m not an adult but i am a child with pku and i’m doing my speach on it. i was wondering if your could tell me what it was like haveing a child with pku. it would mean the world.