PKU.com Community Discussion Forum Parent support out of control levels

Viewing 5 posts - 1 through 5 (of 5 total)
  • Author
    Posts
  • #9190
    Avatar of Grace
    gracie1605
    Participant

    I have a 18 month old son…we are having a really hard time getting his levels back under control is seems that since july they have been all over he is a spiratic eatier and i can't make him eat he does not like most of the low protein foods. he loves the pasta…I am starting  to think we need to give him that 3x a day to give him enough calories, he has dropped his phe tolerence in half and his last two levels were still 9.2 and 9.7, Help has this happened to anyone before we are all wondering how this can happen.

    #9191
    Avatar of Kenneth
    kennyboy
    Member

    Gracie,

    Often times, from what I've learned, when your child won't eat, or does not eat as much (not meeting his prescribed amount of PHE) as he should for his age, it has the same effect as if he were eating more than he should.

    Have you spoke with your nutricianist and doctor about this?

    That's what I've learned.

    -Kenneth

    21, Classic PKU

    #9192
    Avatar of carrie
    clenk
    Member

     sending e- hugs i know how frusterating it can be to have your child have out of control issues!! Is this your first child? I know that my two older ones all had food issues at this time- eating only pasta and veggies when i put parm cheese on them- it was very annoying but hopefully it will pass- keep introducing new foods, stay positive and if they eat pasta 2x a day- then so be it!! good luck! 

    #9197
    Avatar of Becky
    beckyboo
    Participant

    HI there,

    I am on a very strict diet myself and I am being monitered 3x a week! 

    I agree with kennyboy, it could be because they are not getting enough phe…..however, my levels have gone up simply when I am not getting enough calories! 

    Does your lil man eat enough calories? When we are restricted on how much protein we can have, it can be tricky to get enough calories in (thats my problem).

    My levels tend to go up when Im not eating enough generally so if you can find something he likes with calories in I agree with clenk that even if it is pasta twice a day, then it would be better than having high levels?!

    I hope I have helped x x

    #9208
    Avatar of
    Anonymous

    A matchup between two teams history and not too much can book, the colts jerseys tied in 2003 and meeting 2007 was the colts, just sweep, scored 55 points and 41 points, however, before this, to keep the saints pony five-game winning streak, Personally, he is steelers jerseys manning in colts and the saints is 2-2, including the manning in 13-19 rookie lost overtime war, Boris in saints only with the nfl football jerseys a meeting 2007, is that a 10-41.For Payton – manning, for the saints have special significance, his father ghd mk4 was manning the golden era of his career in the saints and to the saints in 11 seasons despite never helps the old manning team into the ghd pink, but still have won numerous fans respect and respect. In the old manning played the University of Mississippi of Mississippi, leads (as to), Ole highway for 18 miles per hour speed, the respect for the old manning in the school play manning (ghd iv salon styler).

    So, when the fat has received little league trophy McAllister, represent the cheap nfl jerseys when he spoke to the saints, I understand the meaning (even if he has hurt the whole year, and his contract, full of human nature), understand his excitement, understand this city. First for rivers and Tomlinson’s leave super bowl jerseys.Now we have a question: if, though so far only if this year, jet to get into the super bowl, this is the biggest Cinderella saints jerseys.In the history of the super bowl, only four teams with regular below (contain 10-10 -), ultimately win the super bowl. But one of the “pro bowl jerseys ” twice, once is worthy of 1968, they finally BaoZhuangGong green bay with a 9-4 1 draw ended the season. But that was great in the 1960s vikings jerseys “humbug Kenneth star — the combination of” the cowboys jerseys moment of death than thin camels, and Martha then NFL regular-season altogether 14 games, chicago bears jerseys 9 – can still in the central league top, not bad.

    So, only half a year, and I have become saints most familiar team, then air max 2009  watching them create miracle, the aftermath of hurricane air max 95 from the league’s first leap into the playoffs, death, Boris clutching at the first playoff game ball, and this bowl combined playoff bad breath of a season, For they that air max 90 attack-minded and Shouting, but also for the air max ltd and sorry…To tell you the truth, I love method, I want to see the 40-year-old man “, “create another miracle, but today, I explain the heart, but always slant to help the air max skyline. See the last time the air max tn was punished because of the delay in game 5 yards, I inwardly rejoice, At last the passing through law, I was relieved, See this play is the farthest hart ray scored 38 yards, I and nervous, When the cheap air max in the middle of the flight, somebody I hold the boxing…

    Each other’s back for the gap and ghd iv styler mk4 gold. But we centre-back linebacker (see) to each other, broken in the balls into the hands of each player jump up before the ball. The truncated Yes! By the end of the ghd hair straighteners! Then I excitedly cried out, because I still am not very clear. My teammates lean over to say to me: “congratulations! You can’t play today. We can do is to bring you win.” I will never forget those words. In time, the ghd for all of our students rushed to the pitch. A group of boys lift me high and cast in the air. This is the most perfect end to such dramatic manner in Yale (linked) at Yale victory is my air max 24-7.When the end of me and all the air max 2011 many senior quasi graduates were bittersweet, such as tension and miraculously win over the next air max 2010 shoes weeks will also occur. But the saints, experienced team in five years ago.

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