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

[Guest guest]

Caren first of all you will need a script for treatment. Try a different doctor or a neurologist in your area. Where are you from as others may know a doctor who is supportive of banding. Second, I would go to Cranial Tech now for a FREE consultation. They will do measurments and be able to tell you how severe it is. This number may aid you in getting your ped on board. It is free so go asap. You need to know how severe it is! Third, save up because it costs 3300 on the payment plan and 3100 up front to do the band. This is before any insurance might and I highlight MIGHT kick in. We banded and payed and then went through insurance as we did not want to hold up anymore time. Be firm. Tell the doctor you want the band and to write the script. It is your right to seek services. Do not let them push you around and tell you that it will be fine. It

will not get better on its own. Tammy christineashok <christineashok@...> wrote: Hi Caren and welcome to the group. THere is another post I justresponded to from the mom of a 2.5 yr old who has missed her chancefor a helmet, due to bad advice from her doctor. Maybe you can printout that email and show it to your doctor. It really frustrates methat doctors are so ignorant about this.You still have time to get good correction and starting at CT is agreat idea. However they will need an Rx to

provide the band. Theycan do an evaluation (free) and then send the information to yourdoctor to get the Rx. Since you plan to self pay maybe you can getyour old doctor to prescribe. Let us know how things progress. You are definitely not too late, inspite of bad advice from your doctor.-christinesydney 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>

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[Guest guest]

I suggest you call Cranial Technologies

and ask them for the names of several pediatricians in the area who are “band

friendly.” They will surely know of several doctors who will happily

write a script for a band. If it is an hour’s drive you could easily

make an appointment with CT for a free evaluation, and have a pediatrician

appointment scheduled for the same day. CT will give you the measurements and

a prescription form to take to the doctor.

And don’t feel so guilty. I was

also told the same things about my son’s head getting better on its own.

He is now 9 months old and getting his second band on Monday – and I am

feeling like he could have been done with this if I had gone to CT from the

beginning…. Or if any of the people I had consulted had said anything

other than “don’t worry, he’ll grow out of it.” Anyway,

we are all doing the best we can for our kids!

From: Plagiocephaly [mailto:Plagiocephaly ] On Behalf Of nwilkens2275

Sent: Sunday, January 27, 2008

9:46 AM

Plagiocephaly

Subject: Re: new member

w/ questions + upset w/ doctor + self

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

>

> 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

>

[Guest guest]

Hi caren and nicole and others ridden with guilt! Not to worry 8 months is not too old to band a baby. Our orthotist told us between the ages of 5-10 months is a GREAT TIME TO DO IT!!! so don't worry your babies' heads are going to be fine. You can't beat yourself up . If your doctor told you not to worry then you trust the opinion of a medical profressional and if you knew that your baby's head was flat but was hoping it would round out- you're not to blame either- I think most parents are like that- wait and hope it takes care of it self. I was like that. I knew damian was flat and that i had to make a decision (according to my pedi by the time he was 6 months old) As for limiting time in the car seat, swing etc. We did all that and it didn't matter - Infants sleep and they sleep on their back which is what causes the plagio and if they have tort it makes it worse. my son still loves his swing and he's not really sitting up yet on his

own so though he spends alot of time on his tummy he's on his back a lot as well. You can't stress about the swing and car seat - infact what can you do they do spend alot of time in the car seat and swing. And you want your babies to be happy- sometimes when we stress so much about how they're laying we end stressing the baby out. So relax, the helmet is going to take care of it. And as for the insurance- we have 80/20 and my son was very very sick when he was born- almost died due to doctor's mistakes - any how- we have huge medical bills- but we have given up worrying about them. we worry and they're STILL there- so don't worry everything always works out- you have found a good group here- and we're all here for each other. Best mom of Damian 7 months old, Massachusetts, Starbandnwilkens2275 <nwilkens2275@...> wrote: 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 RaleighJake-16.5 months-future DocBandJordan-4>> 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>

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