Thank you to all who have replied! I really appreciate the input, and look
forward to hearing more!


-----Original Message-----
From: parentsoflittlepeople2@yahoogroups.com
[mailto:parentsoflittlepeople2@yahoogroups.com] On Behalf Of Barraza Family
Sent: Saturday, March 24, 2007 2:06 PM
To: parentsoflittlepeople2@yahoogroups.com
Subject: RE: RE: [Parents of Little People 2] New Here and LOTS of
questions!



I don't know personally, but I have seen postings from others who have done
so. You can call Dr. Mackenzie's office at 302-651-5890, and discuss it with
them. I do not have contact info for Hopkins, but I beleive that it is on
the LPA site, under Medical.

_____

From: parentsoflittlepeop <mailto:parentsoflittlepeople2%40yahoogroups.com>
le2@yahoogroups.com
[mailto:parentsoflittlepeop
<mailto:parentsoflittlepeople2%40yahoogroups.com> le2@yahoogroups.com] On
Behalf Of
drmazur@tampabay. <mailto:drmazur%40tampabay.rr.com> rr.com
Sent: Monday, March 26, 2007 12:00 PM
To: parentsoflittlepeop <mailto:parentsoflittlepeople2%40yahoogroups.com>
le2@yahoogroups.com
Subject: Re: RE: [Parents of Little People 2] New Here and LOTS of
questions!

Do you know if they will let you schedule an appointment before the
baby is born?

----- Original Message -----
From: Barraza Family <eeladnil@gmail. <mailto:eeladnil%40gmail.com> com>
Date: Monday, March 26, 2007 12:26 pm
Subject: RE: [Parents of Little People 2] New Here and LOTS of
questions!
To: parentsoflittlepeop <mailto:parentsoflittlepeople2%40yahoogroups.com>
le2@yahoogroups. <mailto:le2%40yahoogroups.com> com

> If you choose to see the doctors at DuPont, you might be able to also
> coordinate in between care at the Nemours CLinic (Nemours is DuPont's
> "parent") in JAX. I can;t speak for the doctors themselves, but
> certainly I
> would think that they would prefer to see them as early as
> possible, mainly
> to assess "baselines". Different types of dwarfism have different
> concerns;you want to see whether 1) there is a problem now, and 2)
> if there have been
> changes. A baseline will help you determines if there have been
> changes. For
> instance, achons =can= have a tighter foramen magnum.
>
> At least at DuPont, for Dr. Mackenzie, they are booking 3-4 months
> out. So,
> if you want to set something up now, that would give you a few
> months to
> "gather" questions, etc. :)
>
> HTH
>
> Linda in TX
>
> _____
>
> From: parentsoflittlepeop
<mailto:parentsoflittlepeople2%40yahoogroups.com> le2@yahoogroups.
<mailto:le2%40yahoogroups.com> com
> [mailto:parentsoflittlepeop
<mailto:parentsoflittlepeople2%40yahoogroups.com> le2@yahoogroups.
<mailto:le2%40yahoogroups.com> com] On
Behalf Of danielle
> Sent: Monday, March 26, 2007 10:28 AM
> To: parentsoflittlepeop <mailto:parentsoflittlepeople2%40yahoogroups.com>
le2@yahoogroups. <mailto:le2%40yahoogroups.com> com
> Subject: RE: [Parents of Little People 2] New Here and LOTS of
> questions!
>
>
> I guess I should have mentioned that! We are outside of Tampa, FL. It
> seems that Shriner's is the best starting point for us, but we
> figure we
> will end up seeing the Drs at either Dupont or Johns Hopkins at
> least one
> time. I am from NJ originally, so it wouldn't be too hard to make
> a trip
> out of it.
> Actually, that reminds me of another question, is there a certain
> age that
> the dr's at those two hospitals prefer to see the children at, and
> how long
> (average) does it take to be seen from when you initially call?
>
> Thanks,
> Danielle
>
>
> -----Original Message-----
> From: parentsoflittlepeop
> <mailto:parentsoflittlepeople2%40yahoogroups.com>le2@yahoogroups.
<mailto:le2%40yahoogroups.com> com
> [mailto:parentsoflittlepeop
> <mailto:parentsoflittlepeople2%40yahoogroups.com>
> le2@yahoogroups. <mailto:le2%40yahoogroups.com> com] On
> Behalf Of Barraza Family
> Sent: Saturday, March 24, 2007 11:14 AM
> To: parentsoflittlepeop
> <mailto:parentsoflittlepeople2%40yahoogroups.com>le2@yahoogroups.
<mailto:le2%40yahoogroups.com> com
> Subject: RE: [Parents of Little People 2] New Here and LOTS of
> questions!
> I can understand your concerns at this point, and let me say that
> you seem
> very confident!! (That's a good thing!!) I think having other
> children will
> help you a great deal. I can't speak on achon issues (my son, 11
> has SED,
> another form of dwarfism), but I can try some of the other questions.
>
> When my son was born, they had a neonatal team standing by, just
> in case (he
> was born c-sec, after induced labor failed). He did not need the
> team'sassistance, however. Standard newborn tests.
>
> I don't know where you live, but there may be someone who can
> recommend a
> dwarfism specialist, or a doctor familiar with dwarfism. Shriner's
> is a good
> starting point.
>
> Let us know where you are. In the meantime, if you haven't already
> pokedaround the LPA online site for further info. Many physicians
> diagnose all
> dwarfism as achondroplasia prenatally, as there is really no way
> to tell for
> sure until they are born. The orthopedists at Shriner's will
> probably take
> some X-Rays, etc., expecially if tehre is a question on diagnosis.
> You or
> they can also consult with several of the top dwarfism specialists
> long-distance, even if it is just to confirm a diagnosis, etc.
>
> I hope this helped somewhat!!
>
> Linda in TX
>
> _____
>
> From: parentsoflittlepeop
> <mailto:parentsoflittlepeople2%40yahoogroups.com>le2@yahoogroups.
> <mailto:le2%40yahoogroups.com> com
> [mailto:parentsoflittlepeop
> <mailto:parentsoflittlepeople2%40yahoogroups.com> le2@yahoogroups.
> <mailto:le2%40yahoogroups.com> com] On
> Behalf Of Danielle
> Sent: Monday, March 26, 2007 9:39 AM
> To: parentsoflittlepeop
> <mailto:parentsoflittlepeople2%40yahoogroups.com>le2@yahoogroups.
> <mailto:le2%40yahoogroups.com> com
> Subject: [Parents of Little People 2] New Here and LOTS of questions!
>
> Hi, my name is Danielle and I am 35 and a half weeks pregnant with
> our third daugther. We found out 3 weeks ago that she most likely
> has Achondroplasia. Since we have been researching everything we
> can
> (unfortunately all online because there are no drs to see around
> here
> until after we have the baby). I have gained a lot of useful
> information, but I still have some questions.
>
> First of all, I have read a few places that sometimes a c-section
> is
> suggested over a vaginal delivery. Our baby's head is already
> measuring full-term on ultrasound, but my OB isn't concerned
> because
> my other two (AH) daugthers had larger heads. She said there is
> not
> any fluid in the ventricles, so she isn't concerned about any
> danger
> to her. I was wondering if anyone was told of different reasons to
> have a c-section over a vaginal delivery?
>
> What kinds of tests/diagnostics did they do in the hospital after
> delivery? I want to make sure everything is done that needs to be
> before we are discharged. My ob wasn't able to answer that for me.
>
> My other questions center around what is ok/not ok to do with her.
> I
> understand you want them flat as much as possible. But is it ok to
> let her sit in a swing or a bouncy seat for a little bit here and
> there? I totally understand it's not something you would do for
> extended periods, but if she spent maybe 30 minutes in one of
> those a
> few times a week, is that enough to cause damage? I also have a
> couple of different carriers that strap to the body (with a 4 yr
> and
> 18-mos old i had planned on using them a lot prior to her
> potential
> diagnosis). After she can hold her head up on her own, is it ok to
> use those sporadically? As I was saying before, if we were going
> somewhere and I wanted to use one for a while, would a short time
> in
> one be ok or would it be enough to harm her?
>
> I know after she's born and we get to take her to Shriner's (it's
> the
> only hospital near that will see her) I can ask these questions,
> but
> sometimes helps to get the opinions of other parents who have
> dealt
> with different drs/experiences.
>
> Thanks in advance for you help/insights. Already having 2 girls is
> making it hard to imagine different ways to do things. Sorry this
> is
> so long also and thanks for taking the time to read!
>
> Danielle
>
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