There are varying degrees of PKU. Some children need a more restricted diet 
than others.  Some people with PKU need to stay on a strict diet all their 
lives, others can loosen up after reaching school age.  Some need to carry 
small scales around with them and weigh all proteins, others don't.  There is 
no one answer for all cases.  PKU was originally identified by a Norwegian 
doctor whose own child had it and here nobody knows what PKU is, they call 
it Følling's disease.

Therefore, my advice to the heartbroken mother and grandmother would be to 
push hard to get to the specialist who will certainly be following the child long 
term, fast, to determine a safe schedule for measuring this baby's 
phenylalanine levels in order to work out how best to preserve breastfeeding 
for them.   Breastmilk contains more phenylalanine than the product designed 
to replace milk in the diet of an infant with PKU, but it contains much less 
than cow's milk does.  It is in fact likely that breastmilk can remain a part of 
this baby's diet for a long time, since it would be inadvisable to phase it out in 
toddlerhood in favor of cow's milk, as most Western children experience.

Good luck to them.  They have a healthy baby who can stay healthy, thanks 
to the screening test that showed the presence of this congenital inborn error 
of metabolism in plenty of time to plan a diet that will prevent any acquired 
health injury.  In places where PKU screening and appropriate follow-up is part 
of routine care, no child needs to suffer more than a lot of inconvenience from 
the condition. 

Rachel Myr
who has spent a lot of time through the years explaining to parents why 
Norway does PKU screening of 60 000 babies every year in order to find the 5 
amongst them with the condition

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