I was recently visiting Ukraine and I had a young mother approach me with a question about PKU. Her daughter was diagnosed with PKU at the age of 3, right now she is 11. Unfortunately, doctors were unable to provide family with instructions how to maintain a proper diet, so child was not restricted by any foods. This child is suffering from mental retardation. This family resides in a small village and has very limited financial resources and/or access to medical care. Could anyone please advice this family on how to develop a diet for this young girl.
thank you very much for any help or suggestions.
PKU is one of the best known metabolic syndroms in the USA. All babaies are tested here at birth. If PKU is identified, the bay is automatically put on a PKU diet to prevent brain ratrdation. The diet is strict and I believe that milk and soy is the first type of food that needs to be eliminated from the baby's diet at birth when the sysndrom is identified by the doctors (I am not an expert). There are many web sites that explain this syndrom. You might want to Google PKU. There are also some free organizations that you can identify by using Google. These organizations might be able to help her and give you a brochure in her language to help her. She also should try to find a local European PKU organization, maybe sponsered / funded by the European Union Health Department to help her. Helping her from the USA would be hard because of the diet. It is my undersatnding that the diet is hard. She should have been on this diet since birth. I am surprised that her doctor did not help her. I am also from a very poor country in Europe and a very poor village and I know that the help is out there in Europe (if she has the web and the resourses). You can try to Google PKU Europe.
Hi again - If you google IBIS (an organization for birth disabilities), you will see that this organization has an Ukraine link. They also have an American-Ukraine alliance that might be able to help you. Further, under their topics choice and baby choice, they have a PKU subject that might actually give you a brochure in Ukraine that you can send to this mother. Good luck.
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