Pam,
I'm so glad to hear that your grandaughter is doing so well.
I do wonder about ways of facilitating breastfeeding but blocking the 
provision of milk from the mum...some babies may not be able to receive 
their mums milk but surely they can be fed at the breast somehow.
Karleen Gribble
Australia


----- Original Message ----- 
From: "Pam Wiggins" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Friday, February 15, 2008 12:22 PM
Subject: Granddaughter's metabolic disorder


> Phyliss and Karleen,
>
> You may remember a year and half ago, I posted about my granddaughter  who 
> has "citrullenemia" which is a very rare metabolic disorder.  Most  babies 
> born with this go into a coma
> and die before one even knows anything is wrong.
> An update on Karly:  She seems to be doing all right with her formula  and 
> can eat 6 grams of protein a day. She eats mostly fruits and  veggies. She 
> is about 3 months behind developmentally and may have a  hearing problem. 
> She is way below the charts in growth, but is a pure  delight to her 
> family. A geneticist in Oregon (Dr. Harding, Portland)  has taken a 
> special interest in her and travels to Idaho periodically  to evaluate 
> her. She is one of the few babies with this disorder to  survive past the 
> first week.
>
> Phyliss, good luck with your case.
>
> Pam Wiggins, IBCLC
>
> www.breastfeedingbooks.com
>
> www.breastfeedingdvds.com
>
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