phe level after changing fomular

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    • phe level after changing fomular

      I wonder whether the Phe level would change if change the brand/kind of fomular. My daughter is two years old, she just takes XP-2(SHS) instead of XP-1, and the Phe level has gone up. I do not know whether is has any relations with the fomular. Your any experience would be much appreciated!

      Maggie
    • I know what you mean exactly as I had maxamum xp for years which always worked well for me then I was supervising at a PKU camp and some of the kids and other supervisors drank phenex 2 so I thought that I would change to phenex 2 which was horrible on the tin there wasn't any instruction on powder/water ratio. On my sister's birthday I had to drink this formula quickly as I was running late for her birthday party at her friend's house. I felt really dizzy all of a sudden and went white then I just started to throw up all night long I could leave the bathroom. After this horrible experience I then return to having my maxamum xp again. Now I have the vitaflo coolers which are nice. My Phe levels were affected by phenex 2 as well but I wasn't on this formula terribly long.
      debbie colyer
    • I had a conversation with my doctor a few weeks ago on the subject of formulas and Phe levels.

      Sometimes I am a little flexible with my diet, and eat some of those tasty but high Phe food stuffs :whistling: . My doctor pointed out that at these times I should always ensure that I take my formula (Phlexy-10 tablets). It was explained that by taking the formula my body will process more of the free Phe in my bloodstream. I am unsure of the bio-chemisty behind this , or how the effects differ between someone with mild or classical PKU.

      So it seems logical that different formulas could produce differing blood Phe levels.
    • More protein = more Phe.

      The implication from my doctor was that formula helped my body respond to Phe in a more postive manner than it would without taking the formula.

      However, I would not for one minute suggest that you take excess PHE in the hope that by taking the formula it will keep overall PHE levels low. It goes without saying that you should keep to the levels set by your doctor, this is critical, especially for babies and young children.

      Also everyone is different, I think I am borderline mild-classical. I don’t think you can make a generalisation about the response of different people on different formulas.

      Different formulas can have different quantities of amino acids in them. Maybe this in turn could have an effect on the rate at which your body is able to respond and handle PHE (*pure speculation on my part*).

      For example I used to take 3 Lophlex Drinks a day which had a total of 5.625g of L-Tyrosine. I have changed and now take 75 phlexy-10 tablets a day which have a total of 7.275g of L-Tyrosine. (The quantities of both formulas were as prescribed by my doctor). I find this discrepancy between the two formulas intriguing as the amount of L-Tyrosine in the body is directly impacted by those with PKU. It is generally considered a non-essential amino acid, but for those with PKU it is more 'essential'.

      As always these things are best discussed directly with your doctor!