Hi Peeps, I am 31 and have been off the diet for about 13 years and never really looked back until I found this site. Just wondering about all of those who have gone back to the diet after time out what benefits or improvements to your life it has made. I suffer with anxiety, poor concentration and general scattyness and I presumed that was just me, until I started looking at this site. Any comments would be appreciated.
Hello Dan2Earth29. I am very much in the same situation as you. I am 29 and just went back to the doctor for the first time since I was in high school. In response to your question….have things changed….my reply: holy cow, yes they sure have! The doctor said to me that if there was ever a golden age of PKU, this is it right now. I grew up drinking Phenyl-Free, which was this disgusting-tasting, horrible smelling, thick drink that I couldn’t stand to have. Now, formula comes in many different forms (drinks, juice boxes, salad dressings, sorbet pops, bars, gels, it comes in tomato soup…etc.) and it keeps getting better. I have to say that some of the formulas don’t taste that bad anymore. There is a new pill out (Kuvan) that allows you have higher amounts of protein while maintaining a lower blood level (but only if it works for you…15% of people with classic PKU react favorably to the pill). They are also in the process of developing a shot, which would be taken once a week and might not even require a diet at all (however it is currently in the development stage and that is only a speculation)…but we are talking less than five years it could become a reality! I could go on….
Thanks for that Tara, makes me realise how out of touch I am, I used to have the aminogram supplements which tasted dreadful and then I went onto tablets in 1996 which were like swallowing bricks. I had to take 18 before every meal. Have you started back on the diet now ? If so have you felt any different since being on it ?
I have been trying to be much better about what I eat, like no more pizza or Chai’s from Starbucks, my dietician sent me numerous formula samples and I am still in the midst of trying them to see which ones I like. Currently, I think I will try two formulas – PKU Coolers (which come premixed in a foil package similar to a capri sun) and Phenylade Essential. They both taste really pretty good compared to when we were kids. As for how I feel, even taking small amounts of the formula twice a day since I have not yet been prescribed a specific amount has made me more alert, I can concentrate better, I am not always tired, I feel full after eating meals, my mom said that my complexion looks better, I am definitely more with it and I seemingly have better balance. Oh, and I don’t seem to have quite the caffeine addiction that I once had because I am more with it and awake. I used to get headaches if I didn’t have caffeine in the morning, it doesn’t seem to happen anymore. Its pretty cool actually. I feel great. Much better than before. It was a good decision for me to make.
Thats interesting I have a huge caffeine addiction, and as for the tiredness I feel tired more days than I don’t. I guess its time to get in touch with the dietition again. Thanks for all you info its been real helpful. Keep in touch it will be good to hear how you are getting along !!
So, how far off the diet have you been over the past years?
dan2earth i totally agree with your comment. I to have been off the diet for years and have felt bery scattered and hard to concentrate. I have also had a quick temper but when i was 17-21 i was on the diet strictly and i did fell better. I felt like the “real” me..if that makes any sense. Now, i would like to start a family one day and have decided to take it apon myself to do what i should have been doing my whole life..on the diet and feeling better…good luck and be blessed…
Hi everyone, sorry for delay been real busy with work. Answering your question Tara I have been completely off the diet for about 12 years but it happened gradually, so I guess I didn’t notice the changes.
Hi Mayo, its makes sense I have started cutting down my protein, haven’t gone silly but I have already noticed changes in my concentration levels. I am seeing the dietition in a couple of weeks to get things rolling with supplements and all. nKeep in touch, and let us know how its going.
Hi My name is aaron I joined this past week on pku.com and I ‘am still wondering if there are other pku people out there that are having trouble getting their insurance to cover the formula if so please write me back here because I ‘am starting a campaign slowly with the insurance companies you can contact me here. I live in AL and I think there is more awareness needed in this region thanks!
hi to all,wow frm reading ur stories it seem imnot soo by myself afterall. i too are wnating to go back to diet ater10 plus years of offagain, on again cycle. theres stuff i’ve just read about that i didnt knw even existed,i mean i knew about the kuvaan but not the other things like the pku cooler. The one and only pku dr here in tucson just left for new mexico back june soo so im kinda up a creek.having to travel to either phx, or n.m..kinda blows, makes it a little difficult to get a running start.oh and im new here to the site, so any help would be sooo appreciated.
I too have been off diet since 11yrs old,and now i started back about 1 month ago.
I can tell you this my husband appreciates it more.
I was so scatter brain,couldn’t remember what i ate the day before.(Thats embarrassing)
I was moody and mean.Besides PKU seizures.
After going back on i feel i can see clearly as well as think and remember things.
Sometimes too well.LOL
I am borderline PKU and can have 2700 pHE’s a day.( thats alot)60 grams of protien.
I can eat regular cheese, and tofu,but i perfer
Anyways just thought i put my 2 cents in.
Take care, nTracie-PKU
Hi everyone the diet is going fantastic been on it for nearly 8 months now and couldn’t live without it !! Check out my site http://lifewithpku.blogspot.com
Hey I am originally from AL (now in NC) and I am extremely worried about the insuarnce companies turning down my son (11 months) for any kind of coverage when we move back there. I agree there needs to me a lot more awareness in AL. Wish i was there to help start it up!
I can totally relate.I live in a small community,and no-one knows of PKU. nSo iam taking it upon myself to educate the local hospitals,as well as Family prac Drs.
Speak with ur Dr. Whom you see for the PKU. nTell him or her the problems your about to face. nHopefully they will send you pamplets that will help you in the long run.
Also about the cost.Once again talk to your PKU Dr.,and have him or her speak with your insurance Co. nThat is exactly what i had to do,and it worked Thank God!!!! nAlso see if you qualify Genticlly Handicaps Person Program.(GHPP) nThat is an awesome program that covers everything for the PKU person.
I hope i was some help? nFeel free to ask me any questions.Thats what i am here for!