Developmental Pedi Update -

As everyone knows our appointment with the developmental pedi  was less than stellar. I wasn't happy, but chose not to dwell to much on it. I'm sure this particular dr has her merits in very specific areas. It appears, however, that Down syndrome is not one of these areas. And that's fine. I just wish we had known. I waited to see what Sean's assessment would say before I took any action regarding this appointment.

Before writing this letter to the dr, I was concerned that my speaking up would create waves for someone close to us. That was not my intention. I was concerned that someone close to us would think I was ungrateful for her help. Again..... that was not my intention.

In the end, I did email the dr. Here is my email.

On May 10, 2011, we met with you in the hopes that you would help to guide
us in the development of our son, Sean Scott. 

While you spoke with us in great detail about the many "possibilities" for a
person with Down syndrome, we were left with many more questions than
answers. We also left feeling more than a little disappointed that it seemed
you were quoting from outdated textbook rather than actually looking into
Sean's individual development. You not only didn't look into Sean's physical
development as you were quite sure that his regular pediatrician was
following that, but you also chose to ignore very specific questions from
us. 

We asked very specific questions regarding Sean's different therapies &
therapeutic exercises and what you, as the developmental pediatrician, felt
Sean would benefit most from. Your answer, "Just continue doing what the
therapists prescribe" left us angry. We also asked you whether there were
any exercises we could do with Sean regarding his open mouth posture. You
chose to ignore this question by not even offering up a generalized answer. 

You completed an assessment on Sean. Feeling as though maybe this would at
least give us some guidance as to where in his development Sean was lacking,
we chose not to email you or the department head about our disappointment
with the appointment. I was under the impression that we would have the
results from that assessment approximately 2 weeks after our meeting. My
understanding is that the results from that assessment is no longer be valid
in aiding us in the best way to proceed with Sean's therapies as we are now
4 weeks passed the date the assessment was done. As I'm sure you're well
aware, many things change in a 4 week span when infant development is
involved. New skills are acquired and mastered. Skills already obtained are
refined. 

You told us Sean, 10 mos old at the time, was to young to give us an
accurate cognitive assessment. When we inquired whether Sean was in fact to
young for an appointment, we were assured he was not. So your comment  left
us confused. We also felt more than a little disappointed by your suggestion
that our marriage must have major problems since Sean was born. 

Given the fact that we have not yet received the assessment and our
appointment with you was less than stellar, I am requesting that we either
be granted a new appointment & assessment with a different developmental
pediatrician at no cost to us or be reimbursed for our appointment. Kindly
advise which option works best for you. 


I was so nervous when I hit "send". I didn't know what would come of it. I didn't know whether we'd receive any resolution. If I didn't get any resolution, would I feel more frustrated? And if I didn't get any resolution, how far would I take it? 


I am happy to report that I did get some resolution. Ok well....... it looks like I will get resolution. I received an email back from the dr. I really think the dr not answering my concerns, speaks volumes. 


Dear Mrs. Scott,
I am sorry that I was behind in getting Sean's report sent to you but it is
in the mail.
I will be in touch with our billing office regarding a refund.
Sincerely, 


"the dr"


I have chosen not to use the dr's name. I'm sure she is a good dr. As I said above, I'm sure she has her merits in other fields. I just really want to illustrate that unless you speak up, you really can't complain. You really can't speak about how unfair things are for kids & adults with Down syndrome if you don't speak up. I hope that this post serves as someone's motivation to speak up. I hope that moms, dads, siblings, etc. realize that if something doesn't sound right. ; if something doesn't feel right; if things just don't add up; if you don't understand..... say something. 


I'm looking forward to putting this appointment behind us & hopefully finding someone that can help us to help Sean. Or at the very least reassure us that we're doing everything we can for Sean and to keep up the good work.