PKU.com Community Discussion Forum That’s PKU life! Suprising news

Viewing 5 posts - 1 through 5 (of 5 total)
  • Author
    Posts
  • #5231
    Avatar of Breanna
    BreaMarie91
    Member

    Well as some of you may know I went to a PKU conference this weekend and my dietian was there so I saw her. Anyway me and my mom spent a good majority of the time talking with her. I found out she said that lately my blood levels have been some of the best out of the others my age at childrens hospital!!! That was so suprising to me because with my older dietian (we got a new one about 6 months ago) always made it seem like my levels were absolutely horrible and my mom was screwing everything up. She fought with my mom all the time to and they never liked eachother, it go so bad that when I turned 10 my mom stopped taking me to appointments and my dad did but now that we have a new dietian my mom is going to start taking us again when we go back in march. Anyway I found this extremely weird since I always grew up thinking my levels were horrible because thats what my old dietian always told me.

    #5234
    Avatar of debbie
    debbieco
    Member

    There are always some horrible people in the medical field but it is great that your new dietitian is really good and nice! I am sure that your blood test are great! Glad that your mum is able to go to the appointments with you once again.

    #5235
    Avatar of Breanna
    BreaMarie91
    Member

    Yeah, I’m just glad that I have a new dietian now because it has been alot easier for me to handle the diet since my last dietian left. This dietian is open to alot more things (ie she’s letting me try any new formulas I want) which my older dietian was totally against! Plus since sept I’ve noticed a pattern in my levels….they’re all going down! My last one was 2.2 and in Sept I was all the way up at like 11.6 which was what most of my levels were like with my old dietian. They were usually around 7-11 ish, 12 at the most, so not good but they could have defintally been alot worse.

    #5412
    Avatar of Randy
    rshauter
    Member

    I’m sure you know that you have the right to have different staff members at any time and for any or no reason. Even the best dietician in the world may not be right for some person. The forms they give you about pt rights aren’t just to make sure that the hospital doesn’t get sued (although is part of it) but to ensure that you get good care. It sounds that since the change, you’re doing better, and your ‘primary caregiver’ is getting re-involved in the clinic visits. nFor anyone out there, make your voice heard. That’s how we get rid of bad eggs and get good matches between staff and consumers. nAnyway, off my professional soapbox. Congrats on the great blood levels. nRandy

    #5416
    Avatar of Breanna
    BreaMarie91
    Member

    Randy- nYes things have been getting alot better since we got a new dietitian. Believe me we tried to switch dietitians alot of times but there weren’t any others in the area. If we wanted a new dietitian we would have had to drive atleast acouple of hours to a different clinic which unfortentually we couldn’t do. But I guess in the end everything worked out. nBreanna

Viewing 5 posts - 1 through 5 (of 5 total)
Quick Poll
Which of the following best describes you?
Parent/caregiver of an infant with PKU
Parent/caregiver of a child with PKU
Teenager with PKU
Adult with PKU
Grandparent of a child with PKU
Know someone with PKU
Healthcare professional