Re: new member w/ questions + upset w/ doctor + self

Posted January 26, 2008 · January 26, 2008

Welcome! We've all been there! We as mommies have a lot to do

BUT please don't feel guilty. There are many babies that spend A

LOT of time on their backs and they don't have plagio. My nephew

actually slept in his carseat quite a bit the first few months of

life (due to reflux) and never had " head " issues! I also don't

think it would have been safe to prop him in the carseat (if used in

the car). I think some kiddos are just more prone to plagio than

others for whatever reason. Good news, you can still do something

and you can still get good correction. There are some that find out

about plagiocephally at a much older age. This is what I would do

(and what we did)...it sounds like CT is somewhat close to you so I

would go for a free evaluation. Have CT send measurements to your

pediatrician via fax. Call your ped. to let him/her know that CT is

sending measurements and that you really want your son banded. You

do need a prescription. Pay out of pocket (although since your self

pay, this probably doesn't apply...then appeal insurance if you have

to). We banded at 7.5 months and my son had some great growth

spurts that he only needed the band for 2 months. He is now 19

months and other than when his hair is wet (and even then) it is

hard to tell that there are some existing assymetries. Star or

Hanger (depending on your area) may be good choices too but if CT is

closer then I'd go with them (that's who we went to and had a great

experience). There are some here that have had GREAT STAR or Hanger

orthosists but there are others that haven't so maybe post your area

and people can help 'guide you.'

Good luck...it will all work out.

PS: You can attempt repositioning in the meantime (tips in the repo

folder). As far as a new doctor, that is up to you. If you really

like your doctor other than the whole plagio issue, then I'd stay

with him/her but if you aren't that thrilled with him on other

things then it may be time to switch. Other than the plagio thing

with my doctor, we like him a lot which is why we still go to him.

AND even with the plagio thing, he is the one that pointed it out to

us at 2 months. Part of his reason for lets wait till 4 months,

then 6 months, then not 100% positive if we should wait or not till

9 months (but final thing was wait till 9mos. but we chose not to)

was that he has seen some babies round out and some insurances won't

pay if banding is done at a very young age. Pediatricians are

specializing in plagio which is why some kind of stay away from the

band.

>

> Hello! I was thrilled to find and join your group yesterday. My

son

> is almost 8 months old. He's had what I now know to be

plagiocephly

> since he was approx 2 months. I just learned of the term this week

> doing internet research. His right side is flattened.

>

> I'm really upset because at my son's routine checkups I always

asked

> the doctor about it because it was very obvious his head was

> misshaped. All the doctor did was feel to be sure he still had his

> soft spot and said that my son would grow out of it the older he

got

> and the less time he was on his back, etc.

>

> I made an appointment w/ a different doctor in the practice for

his

> 6 month checkup because I didn't think his head looked any better,

> despite the fact that I got rid of his swing when he 5 months and

> limited his time on his head (except for sleeping and car seats).

> The new doctor had an " emergency, " and I got the same doctor

again.

> I was crying about his head this time, and the doctor

> again " promised me " that " he will grow out of it. " I again

foolishly

> trusted him and kept trying to limit time on his affected side.

>

> Deep down I was feeling that this wasn't right but didn't want to

be

> paranoid. Also, I am a self-pay (have insurance but very high

> deductible; for emergencies only).

>

> I am consumed with guilt because I kept him in the swing so much

for

> the first few months of life. I have a toddler (19 months apart)

and

> often kept the baby in the swing and safely " out of harms way "

> because I couldn't manage both kids. I'm also mad at myself for

not

> getting a second opinion when he was 2 – 3 months old when I knew

> something was wrong. I'm also mad that I didn't get rid of the

swing

> sooner and never propped his head in the car seat or anything.

What

> was I thinking?!!! Now I stress so badly anytime he has to be in

the

> car seat or sleeps that way and continually try to prop him. I

keep

> rehashing all the times I had him unnecessarily in the swing or

car

> seat, etc. and am feeling so bad.

>

> To make me more stressed, we are in the process of getting another

> insurance provider so I can't do anything for probably two weeks.

> I'm thrilled to learn there's a Cranial Technologies within an

> hour's drive. I'm not sure if CT will make me get a doctor's order

> even though I will be paying for this out of pocket. I'm just not

> sure what to do right now. I feel so stressed with each day older

> that he gets now that I found out that there is a solution and not

> a " just wait it out " approach. Also, I feel like I missed my

window

> of opportunity… he should already be wearing the band… now he

> probably won't get one until he's nine months old. Can anyone tell

> me what steps I should take to get this going? Should I make an

> appointment for a few weeks out? Go to a different doctor's

practice

> or a different doctor in the same practice and get a referral? Can

> anyone assure me that waiting a few more weeks is no big deal?

What

> else can I be doing in the meantime????

>

> Thanks so much!!!!!!!!!!!!!!!!!!! Caren

>

Posted January 26, 2008 · January 26, 2008

Hi Caren and welcome to the group. THere is another post I just

responded to from the mom of a 2.5 yr old who has missed her chance

for a helmet, due to bad advice from her doctor. Maybe you can print

out that email and show it to your doctor. It really frustrates me

that doctors are so ignorant about this.

You still have time to get good correction and starting at CT is a

great idea. However they will need an Rx to provide the band. They

can do an evaluation (free) and then send the information to your

doctor to get the Rx. Since you plan to self pay maybe you can get

your old doctor to prescribe.

Let us know how things progress. You are definitely not too late, in

spite of bad advice from your doctor.

-christine

sydney 2 yrs starband grad

>

> Hello! I was thrilled to find and join your group yesterday. My son

> is almost 8 months old. He's had what I now know to be plagiocephly

> since he was approx 2 months. I just learned of the term this week

> doing internet research. His right side is flattened.

>

> I'm really upset because at my son's routine checkups I always asked

> the doctor about it because it was very obvious his head was

> misshaped. All the doctor did was feel to be sure he still had his

> soft spot and said that my son would grow out of it the older he got

> and the less time he was on his back, etc.

>

> I made an appointment w/ a different doctor in the practice for his

> 6 month checkup because I didn't think his head looked any better,

> despite the fact that I got rid of his swing when he 5 months and

> limited his time on his head (except for sleeping and car seats).

> The new doctor had an " emergency, " and I got the same doctor again.

> I was crying about his head this time, and the doctor

> again " promised me " that " he will grow out of it. " I again foolishly

> trusted him and kept trying to limit time on his affected side.

>

> Deep down I was feeling that this wasn't right but didn't want to be

> paranoid. Also, I am a self-pay (have insurance but very high

> deductible; for emergencies only).

>

> I am consumed with guilt because I kept him in the swing so much for

> the first few months of life. I have a toddler (19 months apart) and

> often kept the baby in the swing and safely " out of harms way "

> because I couldn't manage both kids. I'm also mad at myself for not

> getting a second opinion when he was 2 – 3 months old when I knew

> something was wrong. I'm also mad that I didn't get rid of the swing

> sooner and never propped his head in the car seat or anything. What

> was I thinking?!!! Now I stress so badly anytime he has to be in the

> car seat or sleeps that way and continually try to prop him. I keep

> rehashing all the times I had him unnecessarily in the swing or car

> seat, etc. and am feeling so bad.

>

> To make me more stressed, we are in the process of getting another

> insurance provider so I can't do anything for probably two weeks.

> I'm thrilled to learn there's a Cranial Technologies within an

> hour's drive. I'm not sure if CT will make me get a doctor's order

> even though I will be paying for this out of pocket. I'm just not

> sure what to do right now. I feel so stressed with each day older

> that he gets now that I found out that there is a solution and not

> a " just wait it out " approach. Also, I feel like I missed my window

> of opportunity… he should already be wearing the band… now he

> probably won't get one until he's nine months old. Can anyone tell

> me what steps I should take to get this going? Should I make an

> appointment for a few weeks out? Go to a different doctor's practice

> or a different doctor in the same practice and get a referral? Can

> anyone assure me that waiting a few more weeks is no big deal? What

> else can I be doing in the meantime????

>

> Thanks so much!!!!!!!!!!!!!!!!!!! Caren

>

Posted January 26, 2008 · January 26, 2008

Caren-

Welcome. You still have time to correct the problem, so take a deep

breath. It will be okay! I know exactly how you feel. And to a

degree, I probably felt worse than you, because I was completely

aware of my son's problem from very early on. He had tort, and

though I never heard the word " plagiocephaly, " he was a

textbook " before " picture. And I too asked the doctor every well

visit (we also saw 2 different ones), we even saw a neurosurgeon at

4 months old, and they all said it would work itself out on its own.

So we trusted them and let it go. Now, I've finally taken a stand

and Jake will be casted on Monday for his DOCBand at CT in

Charlotte. He's almost 17 months old. We saw another ped at another

practice who took me seriously and said I had a right to be

concerned about Jake's forehead bossing, that it should have

corrected more by now. Then we also saw a craniofacial surgeon who

said he wouldn't band because of his age, but he wrote the Rx anyway

and said he would defer to the orthotist (both of which said they

would band him).

So my guilt right now is not in his condition itself, but that I

didn't push the issue a year ago. I know of a mom from my kids'

preschool who just banded her son at 9 months old, and she's already

seeing great correction. So no need to fret yet about his age.

You're doing the right thing! I would go to CT for the free consult,

and if you can't get a script from your ped, I would see a

craniofacial surgeon. (It might look better for insurance purposes

if the script is from a specialist anyway). The minute you get the

script, you can make an appointment for the casting, and he'll get

his band within 10-14 days. What insurance are you switching too?

Can you find out in advance what their coverage is for " durable

medical equipment " or " orthotics and prosthetics " ? You would also

have to find out if CT is in network or out of network.

Good luck with the process! Keep us posted!

in Raleigh

Jake-16.5 months-future DocBand

Jordan-4