Phenylketonuria (Pku) In 2 Year Old Girl. Help?

Hi Dave and The Bulletproof Executive crew,

 

I'd like some help if you don't mind. A dear friend of mine Elle Moxham has a beautiful 2 year old daughter named Siena. Siena has Phenylketonuria (PKU), it occurs when the body cannot break down a substance in food, called phenylalanine. As phenylalanine builds up in the blood, it causes brain damage. Early detection and intervention with a special diet can prevent intellectual disability and result in normal growth and development. 

 

I understand that L-Phenylalanine is converted into L-tyrosine. L-tyrosine is converted into L-DOPA, which is further converted into dopamine, norepinephrine (noradrenaline), and epinephrine (adrenaline). These are important hormones for healthy, happy developing kids. 

 

Does anyone have any lifestyle and nutrition tips to make Siena's young and promising life more awesome?

 

Thank you,

Dave, Sydney Aust

Comments

  • edited December 2013

    I feel for you.  My wife has PKU and it is such a struggle.  She was on diet with a protein powder as a child until the age of twelve and at the time they thought it was safe to quit.  She developed a lot of mental problems until around 19 when I talked her into getting back on diet.  So first advice, and I'm sure you've been told this, do not let your her child stop their diet.  Also the Cambrooke and other foods are horrible so it's better from what we've found to eat as close to BP as possible, and get protein from safer sources other than meat such as broccoli and of course her protein drink.  I got her to start drinking BP coffee which has shown huge changes in her food craving and mental clarity.  Tyrosine was recommended to her by a physician from Boston, who's name I do not know, it also helped a lot.  


     


    I'm pretty new into the whole being healthy way of life and haven't done enough research yet for her and PKU, but at 30yrs old a brain scan shows lesions on the brain.  After hearing the podcast concerning MCT oil and alzheimer's we started her taking it and it seemed to help with a lot of memory loss and other problems she was having.  I've been thinking that she should take curcumin or something like that to help with heading off any more brain damage.  Unfortunately her doctors at UT are not BP and their brains are definitely not optimal so they offer very little advise. 


     


    I've actually been wondering about PKU and bulletproof way of life.  The changes I've experience by getting my life in order have been phenomenal and I want to make sure that my wife is also as healthy as possible.  So really I don't have a ton of advice except to make sure to stay on diet for life.  We go to some walk-a-thon fund raisers and I see the people who are not on diet or haven't been on diet and can tell a huge difference between them and "normal" people.  They don't look healthy at all and a lot are morbidly obese.  They also show major signs of cognitive decline.  Not necessarily mentally handicapped, just slower than they should be.


  • Hi Dave, we are also in Australia (WA) and have two young boys (6 years and 11 months) who both have PKU. Hubby and I are trying as to do paelo/bulletproof diet/lifestyle and really struggle as the recommendations for PKU are almost the opposite and with little research on the condition there's not a lot of support or alternative options. I don't know if you follow this page anymore but if interested and possible through this page I'd love to get your friend's details to speak to someone like minded. :)

  • edited December 2016

    To all you amazing people who are facing or care about those who do face these challenges with PKU, I feel for you. I have never shared on a forum but today felt compelled to share.

    Although I have not had the same experience, my daughter had debilitating back pain, leg pain starting at 6 months to 5 years old and even after 5 days straight of workups, Mayo Clinic could not offer any consolation or clue. We also have anaphylaxis allergies to all tree nuts, shellfish, peas, penicillin, etc., A naturopath helped us discover that MSG (considered a neurotoxin in the toxicology world) was the culprit for the leg pain. eating organic, avoiding the usual suspects, etc. is not enough.

    In my quest to find better health for my family, I have found an amazing local Functional Medicine practitioner and I would encourage you to explore physicians and D.O.s with this additional training and very different mindset about healing and prevention. Amazing results with mine regarding my adrenal fatigue, total turnaround in 6 months, also my daughter is much better after intensive work that resulted in gut repair and continues to work hard at learning how to live with severe allergies.

    Blessings to you all on your quest to help your kids and friends.

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