Community Discussion Forum Parent support Raised Phe level and mood in baby

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    Avatar of Jennifer

     Hi everyone. I have a quick question. I have a 8 month old son name Ian who has mild PKU. He was born with a level of 5.6 but has been around the lower 3 region since we found out. Anyway, he made it through the fruits and vegetables with only slight raises in his phe level. 2 weeks ago he started on bread… his level jumped to 5.8 (the highest its been since he was born, but I realize not dangerously high) we didn't give him bread for a week and his level lowered to 4.5 again. We have given him pasta now and should get his levels back tomorrow. Anyway, my question/concern is: When his levels were higher after eating the bread he was a lot more irritable then normal and not really himself. Once his levels went down he was back to the old Ian. Now that he's started the pasta he is irritable again. I didn't think phe levels as low as his could affect him but then I was reading a story about a girl with mild PKU that noticed her mood was much worse when her levels were raised like that, and she was much happier and stuff when they were in the 3-4 range. 

    Anyway I was just wondering if anyone had any insight about this. I might just be over-reacting and maybe its just coincidence  that he is in a worse mood after eating these things. Any input would be great! Thank you!


    Avatar of Jennifer

     Oh and one more question. When can you move from the heal sticking blood test to the finger tests?

    Avatar of Hafsa


    now as i'm off the diet now and have been so since the past 4yrs, but from what i remember is that, no matter whether my phe levels were high or low…i would normally just still be the same, even after eating any sort of meal whether it had high phe level or low phe level. maybe it's probably because he's a toddler going through the terrible 2's and 3's stage….having mood swings and all. even if it is due to the levels of phe, im sure he'll grow out of it hopefully.

    i am not sure of the answer to your second question, sorry.

    Avatar of Cook4Love

    First off Ian is such a cutie!  My daughter Molly is almost 10 and has Classical PKU.  Her levels are typically between 3 and 4.  Once they bump up to 4.5 to 6 (still within the acceptable range) her mood changes.  She is more emotional and has a harder time keeping it together.  Another friend whose child has CPKU says the same about her son.  While some people experience no changes with mildly fluctuating levels, some people are just more sensitive to subtle changes. 

    Good Luck!

    Avatar of carrie

     My baby is 5 months old and i see a huge difference- she is sleepy when low and grumpy and cannot sleep when high


    When my son was firt born i noticed a difference when his levels were up, he is normally as sweet and laid back as can bee and when his levels go up just a bit hes very irritable i have noticed….Maverick is 6mths old btw:) and he is considered CPKU….he only has a PHE tolerance of 273mg so its pretty low   

    Avatar of Grace

    thanks for these posts i have to say i think my son is crank…at the high 4's, however that seems to be where they want to have his level….i think i will have to talk to them about that…and Tiffany that ratio sounds a little high to me and my son gets about the same amt of phe per day we goal for about 280-300, what we have noticed is that if he has more calories then he can tolerate a little more ph and when he is eating lower cal foods and still getting the same phe is level goes up… let me know how it goes with his formula. 

    Avatar of Jennifer
    Thank you all for your responses! I talked to his dietitian about it today and they moved up his visit with his geneticist from October to August 31 to address these issues and some other questions we had. I told her about how he is such an amazingly content and happy baby unless his levels are a little higher, and she said (like a lot of you said) some people are just less tolerant to phe and notice the slightest raise in their level.


    Maverick- Ian is on Phenex-1 and he has done really good on it. Right now his dose for a 6 oz bottle is 1 tbls of Phenex and 2 scoops of Similac, three times a day.
Viewing 8 posts - 1 through 8 (of 8 total)
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