PKU Clinics

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    • PKU Clinics

      How many of you out there attend a PKU/metabolic clinic? Do you find them helpful at all?

      We have a new PKU/metabolic adult's clinic here in Sydney Australia and I really don't get much out of the appointments. The staff are nice and helpful but they don't seem to have much understanding of PKU. First I had to prove that I had classical PKU which was lucky for me that I had my mutations documents with me to prove it. I felt like I was back in the 60's again.
      debbie colyer
    • Hey Debbie,

      Did you see Jane or go to the new clinic. I had the new guy. He is young, and seems eager to help or learn. But he did say I had fantastic control of my levels and maybe I can do my levels 2-3 times a year. :huh: But I honestly think that would be detrimental to encourage. Also I asked about new treatments and he said I would be too old if anything was ever approved because its all too expensive. X( The only hope would be if I was intending on having more children. I am over 40yo so I think that is not likely although I would love a sibling for Evan.

      Thats funny I dont think I even have documents to prove I am classic pku? I dont even know what PKU I am, but one thing is for certain. My PKU is their and it seems I tolerate LESS protein then I did when I was young. The effects of too much protein are more severe. I think its an age thing. Like metabolising some things is harder for the body to do than when we were teens. I do my best to stay in my limits but sometimes I do get caught out.

      The new clinic is very daunting to walk into. It seemed to flow but you need to know what to do and you cetainly never get to meet the other PKU patients, which is something I actually always looked forward to during my appointments.

      Hope you are well
    • Hey,

      PKU clinics are a very interesting topic. I think there are quite some problems here in Austria as well. For example there are four treatment centers for inborn errors of metabolism over here. Those are situated within generals hospitals and are only very small units. Also those units are within the infant / children parts of the hospital which is kind of awkward by now.

      As far as treatment concerns I always feel as I know more about my diet / PKU. Also my visit confies to a blood sample and a short talk. I think there is room for improvement but I also know that there is nearly nil budget available that allows hospitals to improve treatment.

      greetings - since 2004 - Invite your friends
    • Thanks GreXXL and Raelene for your comments about PKU clinic. It seems like the adults are educating the staff at these PKU clinic! Money is always so limited to be able to improve these clinics. I agree Raelene the doctor is young and is eager to help and learn which is always a great start. I saw the young doctor at my last appointment but like you I like to speak to other PKU adults at the clinic. Just as well Jill and I go to clinic on the same day! Justing sitting in the outpatient setting it just reminds you that you are just another number in the system and you do need to know everything such as being able to book an appointment who you are seeing etc.
      I am really interested in clinics in other parts of the world. Do you all know how much Phe you should have each day?
      I agree with you Raelene about the Phe tolerance going down as you get older.
      debbie colyer
    • Hi,

      Meeting PKUs is very important. That's why we got our local society in Austria that I'm also part of. We do organize meetings where you are able to meet other PKUs. That's the best way as at the clinic I would never have met anther PKU I guess.

      As for tolerance: I get help with that from the clinic. But I'm also sure it does not decrease by age this has more likely got something to do with you eating habits. You need to eat healthy throughout the day and really stick to your tolerance. If you have a healthy and balanced eating tolerance will more likely increase. But if you eat random stuff like fast food and do not calculate that srickt well then it might differ? That's not a professional speeking just what I noticed from myself and fellow PKUs.

      Greetings - since 2004 - Invite your friends
    • Thanks GreXXL I agree with you. I am the public officer of the PKU Association of NSW Inc which is based in Sydney, NSW Australia and also the teen/adult co-ordinator as well. A couple of PKU Adults and I am planning a general discussion for the adults with the medical professionals for the 8th October. We are only at the beginning stages of planning this event which will be good.
      The problem is that our clinic can't advise us on how much Phe that I should be taking a day as they are new to PKU. I know that I am very classical so I try to keep to 10 grams of natural protein a day. I believe that the healthier the diet and as long as you get lots of exercise your body should tolerate a little more Phe. What kind of care do you receive at clinic? Does your doctor do an examination such as feel your stomach etc. I get my chemistry profile done by my local doctor such as vitamins, mineral, levels, sugar, cholesterol, omega 3 and 6, B12, B6 :) etc
      debbie colyer
    • Hey,

      Well as far as tolerance concerns I thinknyou can help yourself pretty well. If you know you bloodlevels then you can determine how many protein youn can take. I think there is no accurate measure to determine how much protein you can take it's more like trial and error. If bloodlevels gow up (and you are not sick and you are sticking to your diet) then you take to much protein and the other way round. So you can get your tolerance yourself pretty well although this may not be the official medical way. I tryto keep my bloodlevels as low as possible and I do achieve that despite not calculating every bit I eat.

      As far as medical treatment goes it's not that much that's done at the clinic. It's pretty much just bloodlevels and a bit of talking. There is however occasionally some extra stuff like a brain analysis to see if everything is normal. Other than that there isn't much to tell. There is no "normal" stuff like feeling the stomach involved :) Also interesting is that there are studies from time to time that you can contribute in.

      Hope it helps,
      Greets - since 2004 - Invite your friends
    • Thank so much GreXXL really appreciate your feedback. My Phe levels are ok at 500 though to 700 sometime higher just depending on my busy life schedule. I play competition softball each Saturday and trained hard on Tuesday night also my job is really active and hectic so sometimes I guess I don't eat enough for my activity level other times I eat too much. Right now I am trying to balance everything out so I can be my best. I have the vitaflo coolers 20 and take three of them a day! Sometimes I think that I should have a bit more formula but I love my food too much!
      debbie colyer
    • Hey,

      It's really much true that with busy work shedules it gets increasingly difficult to manage the diet absolutely perfect. But I really think it's very necessary to get things as harmonized as possible. What I'm always thinking is that my body is obviously damaged and can not cope with phenylalanine. Therefore I think you need to separate your Phe consumption throughout the day as good as possible. Let's say you try to save up and eat something with much protein in the evening I think your body will cope worse with it as if you would have eaten half the protein amount with another meal. That said this is only my opinion but it has worked out good for me so far. So getting the diet balanced is probably the most important thing to do.

      As for the formula It depends on your own body weight (you can actualy calculate that one) as well as a bit to your natural protein consumption. Amino acids provide not only the missing protein but also essential vitamins and other stuff that your body needs. So getting the right amount is absolutely curtail. Taking less formula will raise problems as to missing vitamins or lower tolerances. Maybe you can check if you really get the right amount of formula?

      Greetings - since 2004 - Invite your friends
    • I am in the UK and attend the metabolic clinic at the National Hospital in London, twice a year.

      They are good. They record my stats (height / weight), take blood pressure, do a full blood workup, and last time also had a DEXA.

      I always ask them loads of questions which they happy respond to. If they can't answer there and then (as I do ask some awkward questions) they will email me the answer.

      The doctor and his staff are on hand via email should I have any questions between appointments.