Help a PKU child

Help a PKU child

Avatar of sailendra

Help a PKU child

October 1, 2009 in Uncategorized

Himaja aged 3 years and 6 months has been suffering from a disease called PKU (Phenylketonuria) which blocks the growth of the brain. Phenylketonuria (PKU) is an autosomal recessive genetic disorder characterized by a deficiency in the enzyme phenylalanine hydroxylase (PAH). This enzyme is necessary to metabolize the amino acid phenylalanine to the amino acid tyrosine. When at the age of 1 year, she was not all behaving like a normal child, we visited our local doctor near our suburbs in INDIA and he suggested that calcium was so low and give calcium related food so that she can attain the growth, the mistake we had was that we had given only the calcium related food which totally blocks all other minerals and proteins and made a thick layer in the brain. At 18 months, some one had suggested us to go to Madras hospital which belongs to INDIAN Railways, after 4 months of course of medicines, the doctors suggested us to go to one of the premier institute in India called National Institute of Mental health and Neuro Sciences popularly called as NIMHANS( one of the premier institute in INDIA in R & D). It is at almost at 23rd month of the child, we visited NIMHANS and we came to know that the brain stops growing at the 24th month. But they insisted that with low protein diet they can get some good results. Since then we are using low protein diet and there has been a slow and steady improvement we are able to see in the child. The low protein diet is to control the increasing dose of Phenalyannine, but we are able to control the increasing levels of Phenalyannine which stands around > 1500 mg( normally to be below 100 mg in a normal child). This low protein diet should convert the Phenalyannine into Tyrosine, but in this case it is not at all reducing. Please help me out for a good diagnosis.....

2 Reviews of Help a PKU child

  1. Registered: May 7, 2009

    Posts: 0

    New Westminster, British Columbia

    Is your child taking the medical formula that goes along with the diet? If your child is not taking the formula with the diet it can cause levels of phe in the blood to stay high.

  2. Registered: Oct 22, 2009

    Posts: 0

    , New York

    Your child needs to be on medical formula in order for the diet to even work. The medical formula provides everything to your child. You need to also be on a low protein diet to assist in contorlling your phe levels.Good luck with everything.

Add Comment Register


Your email address will not be published. Required fields are marked *

Comment *

You may use these HTML tags and attributes: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <strike> <strong>

Processing your request, Please wait....


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