Oops.  I was not suggesting that the mother should stop breastfeeding on the 
basis of a PKU diagnosis without thoroughly investigating all the options.

As a non-medical counsellor, I would not want to be responsible for 
encouraging a mother to make a decision which ultimately may be harmful to 
her baby.  If it is not absolutely necessary to stop breastfeeding then the 
harm done is more real than the risk of continuing to breastfeed with this 
condition.  But this is far beyond my mandate as a counsellor.
So the next best is to find some reliable sources of information for her. 
And to help her find a breastfeeding-friendly pediatrician who does not get 
paid by Nestle!

I think that the root of our discomfort with this discussion is that 
sometimes, albeit rarely, we do actually have to support a mother who is 
advised not to breastfeed for very valid medical reasons concerning either 
her own health or that of the baby.  And we owe her our support.

Wendy Blumfield

----- Original Message ----- 
From: "Marianne Vanderveen-Kolkena" <[log in to unmask]>
Sent: Thursday, July 30, 2009 3:44 PM
Subject: Re: PKU


> Hi Wendy,
>
> I'm not sure I fully understand your message correctly, but PKU is NOT the 
> same as galactosemia. With the latter, NO breastmilk is allowed. With PKU, 
> a certain amount of breastmilk is fine.
> It should just be well checked, as breastmilk contains more phenylalanine 
> than the special PKU-formula (oops, artificial milk... hahaha... not 
> meaning to render a scientific odour to the product... ;-)).
> As the infant with PKU cannot metabolize phenylalanine, it must not 
> receive too much of it, but all the other constituents of breastmilk are 
> also for the PKU-infant very important.
>
> Kindly,
>
> Marianne Vanderveen IBCLC, Netherlands (catching up with laundry, 
> administration and e-mail after three weeks in California and even meeting 
> Jaye Simpson at the Folsom Lake-campsite ! ;o))
>
> ----- Original Message ----- 
> From: "Wendy Blumfield" <[log in to unmask]>
> To: <[log in to unmask]>
> Sent: Thursday, July 30, 2009 1:27 PM
> Subject: Re: [LACTNET] PKU
>
>
>>I understood that it isn`t the precise measuring of food that is the issue 
>>with PKU but that the infant must not have natural protein so even a 
>>symbolic breastfeeding may be harmful.  I am not an expert in this field 
>>so don`t quote me on this.  But I do know that the consequences of 
>>undiagnozed PKU can be disastrous and irreversible in terms of brain 
>>development.
>
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