Re: New to the board---Our story ( a little long)

July 11, 2002

Hi Grier!

Nice to finally meet you & your son! I'm glad you've been a " lurker "

for some time & reading everyone's posts has helped you a bit!

Let me say, how great it is to FINALLY hear a good story about an

educated specialist who actually urged your to go ahead with banding

Chandler, especially with a mild case It's great he did so well

during his casting! That's amazing he didn't cry - at least not til

mean mommy dressed him again LOL...kids!

Also SO great to hear he already has full ROM and his tort sounds to

be resolved.

Good luck with the fitting today - I'm sure Chandler will adjust just

fine w/no problems. Be prepared for him to sweat quite abit for the

first week or 2. After that, his body temp. will adjust to wearing

the band on his head & the sweating will greatly diminish, he will

still sweat, but not as much!

Again, it's great to meet you - we look forward to getting to know

you & Chandler better as his little head rounds!

Let us know how today goes...good luck again.

Debbie Abby's mom DOCGrad

MI

p.s...Abby was not breech, but was stuck in the same position as

shown on wkly ultrasounds in the womb, he plagio began inutero.

> Hi, everyone! My name is Grier and I have a son, Chandler, who is

> just over 5 months and has positional plagiocephaly. All

throughout

> my pregnancy, Chandler was breech and refused to " make the turn " .

> Due to hypertension, he was delivered by c-section about 4 weeks

> early. I am very petite (5 feet) and I could tell that Chandler

was

> very restricted in the womb during his last couple of months due to

> my short torso and I feel like that had a lot to do with his

> torticollis. No one at our hospital recognized the torticollis,

even

> though Chandler refused to turn his head to the left. Instead, all

> of my nurses and doctors just showed me how to nurse around the

fact

> that he wouldn't turn to the left. Unfortunately, even though I

> consider myself pretty well-educated, I continued to hold Chandler

in

> a way that allowed him to continue favoring his right side and he

> always slept facing the right. Obviously, now I know that we

> probably could have prevented the whole plagio issue had this been

> recognized by our pediatricians earlier than they did. Luckily, the

> doctor we saw at his 2 month appointment recognized the torticollis

> and plagiocephaly. We immediately began the stretches and

> repositioning therapy that very day and were amazed that Chandler

> ended up with full range of motion in only a few weeks. The

flatness

> on his right side has also improved, but his ears are still out of

> alignment. We had an appointment with a neurosurgeon who advised

us

> that even though Chandler's case of plagio is mild, he urged us to

> consider putting him in a helmet and wrote us a prescription. Last

> week, we had Chandler's casting done, which went much easier than I

> had expected- -no tears at all until he was all clean and decided

he

> didn't want to put his clothes back on (ha, ha). Oh, I forgot to

> mention that we live in eastern NC and are quite a ways from the

> nearest CT, so we have chosen to go with an experienced ortho that

> our neurosurgeon recommended who makes the helmets himself. Today

at

> 3:30pm we will be having the helmet fitting and I am having mixed

> emotions- -happy to finally be on our way with getting a rounder

> head, but also worried about how Chandler will adjust. I've been

> reading posts on this board for several months and the messages

that

> I've read have really helped me. None of you realized I was out

there

> because I wasn't posting, but I just wanted each of you to know how

> wonderful it is knowing that there is a place I can turn when I

need

> support.

>

> Oh yeah, I would like to know if any of your " plagio babies " were

> breech? I'm just curious if that really may have had something to

do

> with this.

>

> Thanks for listening!!! I'll post again tomorrow and update

everyone

> on how our first night with the helmet went.

>

> Grier

> Mom to Chandler (5 months- -In helmet as of 7/11/02)

July 11, 2002

Hi Grier:

How wonderful that your Chandler is doing so well, and that you are

able to get such an experienced team on your side! Now, just to wait

for the rounder head!

My daughter was not breech, but when she turned, she was " stuck " in

an ackward position for almost 2 months, which I believe caused her

torticollis (many of her neck muscles were quite underdeveloped, and

of course the famouse scm was very tight and " pulled " .)

It has taken many months of therapies for us, and we are in our

second helmet, but the professional consensus is that she will not

have residual problems down the road, based on how far she's come to

this point.

We are still working on the tort, and hope to be done with helmet

therapy in 2 months. It has been long, it has been hard, but hey, in

the end I will have a healed daughter, so it is all worth it!

Good luck to you and Chandler!

Kind regards,

, Rhiannon's mom