Re: To Jocelyn-daycare repo

[Guest guest]

--- Jocelyn: Just wanted to let you know that repo and daycare are

possible...its not easy but it can be done. I went back to work

full time after 12 weeks of maternity leave, and at that time we

were just begining to aggressively reposition Maddie. If you are

going to do repo at day care you will have to be very stern about

your instructions. Let them know that this is serious business and

that anytime spent on the flat side of her head will make matters

worse. Also, if possible, stop in unannouced at different times

throughout the day. I did this quite often and if I found Maddie on

the wrong side of her head...I expressed my concern and let them

know that I needed them to work with me and that anytime spent on

her flat side was unacceptable (I think they became a little afraid

of me...not really, but they knew I meant business and they

respected me for being so concerned). I also asked that she not be

placed in a bouncy or swing (I bought the bumbo baby bouncer and

would leave it at daycare during the week for her to use). I also

brought in a rolled up receiving blanket that I had them stick in

her onesie before she went down for her nap to prevent her from

turning to her flat side. I also made a very large print

instruction sheet that was posted in the room for all to see

entitled " MADDIE's REPOSITIONING TECHNIQUES (it contained stuff

like: side diaper changes, feeding on opposite side, no bouncies,

swings, towel in onesie, etc)...

Maddie is almost 7 months now and sleeps on her side or stomach and

is never on her back...so repo has now become much easier at daycare

and home. (I should also point out that we never had to deal with

tort).

Good luck with whatever you decide. Repo has been working for us,

but just as a precaution we are going to have her evaluated at

crainial tech on monday. As I said, she is almost 7 months, and if

there is facial asymm or her plagio is more severe than I believe it

to be, we still have time to explore the helmet/band.

Her pics are listed under Maddie H if you are interested.

Good luck

(mom to Maddie)

In Plagiocephaly , Jocelyn <jocelynrm@e...> wrote:

> ,

>

> Thanks so much for the info. This group is sooooo great!

>

> We did get to see Dr. Aronin (neurosurgeon) today. And we were

able to

> get our CT scan in right before we saw her so she could look at it

with

> us. She brought the scans up on her computer for us to see. All

of

> Amethyst's sutures are still open so we DON " T have to deal with

> craniosyntosis! What a relief.

>

> She took about 2 hours with us. I was amazed. She did a pretty

> thorough examination of Amethyst. What a huge contrast to our

> experience with Dr. . Needless to say, I would NOT

> recommend going to see this guy. He was completely dismissive and

> barely even looked at our daughter.

>

> Dr. Aronin, in contrast, had a whole series of questions that she

went

> through. She actually looked at the information that the DOCband

people

> had faxed. She did her own measurements of Amethyst's head,

checked her

> motor skills, asked us all about our work with our PT, what we'd

been

> doing at home with her torticollis, what we'd been doing with

respect to

> repositioning, asked us who was caring for her and what our plans

were

> for future care, asked about her " milestones " ....and more.

>

> She showed us her CT scans and told us that Amethyst definitely

has

> " scoliosis " of the skull. And I thought scoliosis always

pertained to

> the spine. What do I know....

>

> She did conclude that Amethyst DOES have some asymmetry that could

be

> helped by repositioning OR the helmet. She has a bit of a beef

with the

> DOCBand people. She says DOCBand went to the trouble of getting

FDA

> approval and thus made the DOCBand very expensive. In response to

> DOCBand's FDA approval all the other manufacturers had to get

their

> bands approved also, thus driving up the price for all of us.

Early on,

> when she first got the Austin, she had called the DOCBand folks

and

> asked them about getting a DOCBand for one of her patients.

DOCBand

> said to just send her patient up to Dallas. She couldn't

understand why

> they wouldn't just work with an Orthotist in Austin. Or train

some

> Orthotists in Austin.

>

> She gave us some literature from OrthoAmerica. There is an office

of

> their's right here in Austin.

>

> So......she said that she has seen some amazing cases of kids

heads

> rounding out successfully without banding. And if Amethyst were

her

> daughter, she wouldn't band her.

>

> So.......she suggested we wait a month and decide whether or not

we

> think she's improving with our repo/PT efforts. So, I

said, " since

> we're losing you in about 4 days " (BCBS is dropping her from our

> plan....what a shame....she's so wonderful...in my

opinion...) " can you

> give us RX's for the helmet....and we can decide " .....then she

said

> " which company would you like to go with " ...I said... " can you give

us an

> RX for both and we can decide later. "

>

> So...the bottom line....she gave us RXs for both OrthoAmerica's

STARBand

> and Cranial Tech's DOCBand. So, now the decision is mine. Whew!

What

> a relief. But, now....I've got some thinking to do.

>

> Do we keep repo'ing, PTing? Well, we'll keep repoing..and PTing,

but do

> we " help out " the process with a helmet. Amethyst will be in

daycare

> pretty soon. I do worry about her being hot. Can I bring her own

> little window unit that will blow on her while she's in daycare?

Will

> daycare people deal with her repo'ing? Will they help with her

PT? I

> guess we have to go and ask them these questions. I feel like a

helmet

> will help with her head rounding if they DO put her laying on her

flat

> spots.....

>

> And...should I decide to get a band, should I go with STARBand or

DOCBand???

>

> Oh, and she did bring up the " it's summer and hot right now. " I

don't

> know why people keep bringing this up. Here in Texas, we live in

air

> conditioning all summer. We dodge from house to car to office to

store

> to movie theater barely ever setting foot outdoors. (I did do a

little

> walking between doctor's office buildings today...and yep...it's

hot!)

>

> Oh, and do I need to go see Dr. Byrd (Hobar's group) anymore?

I've got

> my script....what do ya'll think. Perhaps he can help me make my

> decision. I dunno...it's very long drive! And I didn't hear

anything

> back from my Ped today about approving a referral to Dr. Byrd.

I'll

> give them a call tomorrow.

>

> Anyway....that's today's update.

>

> Thanks for Listening.....

>

> Jocelyn

>

> hardysmom wrote:

>

> >In this type of situation, plastic surgeons are

> >actually " craniofacial surgeons, " not aesthetic surgeons.

> >Craniosynostosis surgery is reconstructive. All craniofacial

teams

> >that I know of consist of a plastic surgeon and a neurosurgeon.

Dr.

> >Hobar actually heads up the craniofacial fellowship program for

UT

> >Southwestern Medical School.

> >

> >The mirco surgery skills which cosmetic surgeons have to master

make

> >them the specialty which does hand surgery and other delicate

> >surgeries.

> >

> >Even if your pediatrician's nurse is unaware of this, I would

think

> >the doctor should know. If you think she will act as a gatekeeper

> >and not ask the peditrician and/or poo-poo your request, you

might

> >want to call again.

> >

> >If you do a google search for craniosynostosis surgery, the point-

of-

> >entry for most patients is through a plastic surgeon's office,

not

> >necessarily a neurosurgeon. Actually, with my first referral, my

> >pediatrician actually referred to my cranialfacial specialist as

> >a " pediatric neurosurgeon " although he was actually a plactic

> >surgeon.

> >

> >Here is a link to the Children's Hospital Craniofacial Team. It

> >includes Dr Hobar's bio-

> >

> >www.kidsplastsurg.com/hobarbib.html

> >

> >Good luck.

> >

> >

> >--- In Plagiocephaly , " JocelynRM "

<jocelynrm@e...>

> >wrote:

> >

> >

> >>Thanks !

> >>

> >>I'm looking forward to meeting the people from this group with

all

> >>

> >>

> >the

> >

> >

> >>kudos they're getting!

> >>

> >>I'm hoping to get a referral from my pediatrician. The referral

> >>coordinator at my pediatricians office left a message saying

she'd

> >>check with my Ped, but that she didn't think " a plastic surgeon

> >>

> >>

> >would

> >

> >

> >>be the appropriate person to provide a second opinion for a

> >>neurosurgeon. " We'll see what happens.

> >>

> >>When we went to our second neurosurgeon appt. yesterday, she had

> >>called in sick. So, we're making the trek to Dr. Aronin's

office,

> >>

> >>

> >once

> >

> >

> >>again today.

> >>

> >>And...I just got a message saying that they were going to get

our

> >>

> >>

> >CT

> >

> >

> >>appt. scheduled for sometime tomorrow morning.

> >>

> >>Today is my first day back to work, but it seems that I won't be

> >>spending much time in the office this week.

> >>

> >>Oh, well...

> >>

> >>Jocelyn

> >>

> >>

> >>

> >>--- In Plagiocephaly , kelly <docbandbabies@s...>

> >>

> >>

> >wrote:

> >

> >

> >>>HI Jocelyn,

> >>> We also went to Children's Medical in Dallas

to

> >>>

> >>>

> >see

> >

> >

> >>Dr. Hobar. Well we actually saw Trish on, the nurse

> >>practitioner, she is awesome, does very well with the kiddos.

You

> >>

> >>

> >can

> >

> >

> >>ask a ton of questions and they will answer everyone of them or

> >>

> >>

> >find

> >

> >

> >>someone who can. Good Luck and keep us posted.

> >>

> >>

> >>>

> >>> in Texas

> >>>Mom to , DOCband Grad 7/23/04

> >>>Plagio/Brachy(resolved)/Tort

> >>>

> >>>

> >>>Hey Everyone, Visit 's NEW Web Page at:

> >>>www.babiesonline.com/babies/k/kathryn9703

> >>>Make sure to Sign Her guestbook!!!

> >>>Banded Babies Are Beautiful

> >>>

> >>>

> >

> >

> >

> >

> >For more plagio info