-----Original Message-----
From: Rachel Myr <[log in to unmask]>
To: rachelcnm <[log in to unmask]>
Cc: lactnet-request <[log in to unmask]>
Sent: Tue, Apr 24, 2012 9:27 am
Subject: Re: very unusual circumstances


Hi Rachel,
lease check your e-mail settings - this post was probably meant for
he whole list, not the listmothers' administrative address?
[log in to unmask] is the address to post to the list.
actnet-request only comes to us.
heers
achel Myr
On Tue, Apr 24, 2012 at 5:50 AM, [log in to unmask] <[log in to unmask]> wrote:
 This is a comment on very very unusual circumstances, some of which have
 recently been presented here. My PhD dissertation is on parental  adaptation
 to a delay in diagnosis for what was eventually diagnosed as a rare
 disorder. In some cases, this means the difference between something that
 could have been treated and something that is now fatal. In many cases, the
 mothers searched for years and  a surprising number were told that they were
 over-reacting or even that they should see a psychiatrist themselves. PLEASE
 refer mother/baby dyads with very unusual symptoms to the nearest Childrens
 Hospital, if you recognize that this is way off the usual radar screen, even
 if a doctor has told them to "wait and just watch it..." You may need a
 physican to make the referral, and if the pediatrician will not, then help
 them get another doctor who will. The waiting lists are often long and they
 need to get started on the process. It is shocking how many people are told
 that the progress of the child is "normal" when it is clearly not, and the
 parents keep searching, one specialist after the other. What is needed is a
 comprehensive work up at one of over 160  hospitals that belong to the
 National Association of Childrens Hospitals.

 Rachel Reeder, MSN, CNM, MSW
 PhD  candidate in Social Welfare, Wurzweiler School of Social Work
 Taking IBCLE exam for IBCLC in 2012


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