hello my is anne i had learnt about my disorder when i was about age of 18 at time i was planning to have a family sadly things went wrong if any one wont’s information on pku i will try to help hope it hear from anyone soon
hello my name is georgannei’m 40 years old found out i had pku at 10 days old . but i did not know there was more then one kind i have bin off the diet for 26 years and i’m haveing some medical problums and i need to talk with some one so i can figer out what i need to do i live in florida and i’m looking for freinds to chat with about this i need more info cuase i did not know there were different kinds of pku please help me .i need freinds that have pku . thank you , georganne
Amanda, my name is Amanda too but i have PKU. im 21 and was digaosed at 1 week old. i have a website about PKU check it out im pretty sure it could help u understand pku. its just to much to write out here rigth now. u can find my site at http://pkuersunited.squarespace.com i hope it helps you!
no prob brea its so cool to see other ppl talking about my site. it makes it all so worth it. when i get back to my home after the flood damamge is cleaned up im gonna add a few more pages and even one on MPKU!! i cant wait i love working on the site!!!
I have a question. I went to the top of the page to locate a clinic close to me. I tried to do a 50 mile radius and also a 100 mile and there was no results. What should I do? Do I really need one? Would i be able to get what I need by my dietitian or regular doctor.. I have been off my diet since I was 18. I’m trying to get back on my diet, so I can start to try to have a kid. I am waiting on a referral from my insurance company to see a Dietitian. I have a apt. with my new OBGYN on Feb. 12. I’ve been told that he is familiar with Pku, so I’m just winging it until then.Can somebody please help me. thanks Kerrie
i noticed that the clinic locator dosnet show alot of places and it would be best that u called around , its very important to have both a regular doctor or obgyn and ur pku medical staff. they work toghter to inusre that the phe levels in ur body arent toxic and help u plan for a healthy baby, its also important to remember that phe levles are higher in the uterus then they are anywere else so u need ur levels really low before conseption and during pregnacy, my clinc and staff recomend that there between 2-6 mg/dl 6 months prior to conception and all through out. thats why its a good idea to contact them now so they can help u find ur tolernace, plan food records and monitor ur blood levels so u have a happy and healthy baby! good luck and let me know how it works out!!
Try going to this link http://www.macpad.org/page.aspx?id=92187 There are 3 clinics in California listed on this page. I’m not sure how close they all are to you, but it lists all the clinics in the USA (or atleast I think that is all of them). nBre 16 CPKU
Thank you for all of your information. Should I try to get referred by my primary doctor or would I even need a referral? I will check out the web site Breanne gave me. Do you guys have your own dietitian or is it through your metabolic clinic. Through the clinic is that where I get the formula, cuz I’m not drinking any right now and I’m aware that I have to start. Thanks for your guys help. Breanna you are knowledgeable in Pku. I am amazed on how much you know. Me I’m a 30 year old and I don’t know Jack Crap! Thanks for your help.