RE: first doctor visit

October 4, 2000

I think most of the people on this site that talk about weekly adjustments

have DOC bands from Cranial Technologies. I have noticed it mentioned by

those with helmets that they don't have to be seen by the dr. nearly as

often, usually once every month or two. I live in Charlotte, NC, and here

we have a pediatric neurosurgeon AND a plastic surgeon who do referrals for

the DOC band. So the fact that your son was referred to a plastic surgeon

isn't necessarily an unusual thing. My pediatrician referred us to the

neurosurgeon, who recommended the DOC band. We got the band and we only see

Cranial Technologies for adjustments. I guess we will eventually see the

neurosurgeon when she gets her band off. And when I go to the pediatrician

it's never for her plagiocephaly, although the dr. does look at my

daughter's head out of curiosity. So none of this treatment is done through

the pediatrician's office, and the neurosurgeon has minimal input while we

are in treatment, only to diagnose and to look at her head when she is done.

Where do you live? If you have such bad feelings about your local helmet

maker, maybe someone else on our webgroup has had experience with that

office or can refer you to another helmet maker or a Cranial Technologies

office.

Good Luck!

Amy Kropka

-----Original Message-----

From: awills@... [mailto:awills@...]

Sent: Wednesday, October 04, 2000 8:59 AM

Plagiocephalyegroups

Subject: first doctor visit

Hello, my name is Abby and I've just recently joined the group. My 6

month old son just had his first visit with the doctor and I've got

some concerns I hope people can comment on. I've been reading posts

in this group as well as some on the plagio page, and I'm worried

about my situation.

First of all, my pediatrician refered us to a plastic surgeon, not a

craniofacial specialist. He in turn said our son has a moderate

case, which I would agree with, because one of his ears is more

forward than the other. He told us it was up to us whether to treat

or not, but his situation would not likely improve on his own. So,

we decided we wanted to go ahead with treatment. He gave us the name

of a helmet center, and told us to come back when we got a helmet. I

did not like this, as I expected the whole process to go through his

office. He did not measure my son's head, and said improvements

would me measured only visually. He also said he would only adjust

the helmet every 6 weeks, and from what I've seen here, most people

seem to adjust weekly. So, we have an appointment Monday with the

helmet center. I called to ask about FDA approval, and they do not

have it. It is a locally made helmet.

I am very upset and not sure what to do. I don't really feel

comfortable with the situation. I want my son to get treatment, but

I'm not sure we're doing the right thing with these doctors. Does

anyone else have a similar situation?

Thanks for your help,

Abby

October 4, 2000

Hello, my name is beth and this is my first time posting.

I am responding to Abby's concerns. My son experienced plagio and

tort at about 3 months of age. My ped told us not to worry about it,

however, maternal instinct said otherwise.

We were referred to a plastic surgeon within the Cranio-Facial Dept. of

Children's Hospital. (Detroit, MI) It is not at all uncommon to be seen by

a plastic surgeon for this condition. I would recommend finding one that

specializes in cranio-facial concerns. They took x-rays of and

confirmed plagio. We were then referred to a clinic in Ann Arbor for a

helmet. was measured and fitted at the clinic and we recv'd the

helmet within a week or two.

We then made periodic visits back to Children's to see our Plastic Surgeon.

She was wonderful...full of information and very knowledgable on the

subject.

also recv'd physical therapy for his tort. Within 6 months, my

sons head was very round and " normal " looking. All of his tort was gone as

well. Needless to say we are very pleased! He will be 3 years old next

month and go for his yearly check-up back to Children's Hospital.

In regard to the helmet.....my son took to it right away and we did not have

any problems with it. I would try to get your son to wear it as much as

possible especially at night as I was advised that this is an opportune time

to use it. Don't fret though..he will get use to it.

In regard to the bands...I have no clue on this since they were not

available at the time had his plagio.

In regard to cost and insurance...we signed up with Children's Special

Health Care (State of MI). This was fantastic! We paid a monthly fee to

them for 1 year (based on your income, family status...etc) and they covered

whatever our insurance did not. In addition, let's say you paid $50 per

month for one year ($600), but the expenses only came to $400...they will

refund you the difference. So you never pay more out than you recieve in

benefits. I would encourage anyone to contact their local state offices to

find out if they have a similar program. This eliminated any of the approval

related hassle that many of you seem to be experiencing.

I hope this helps!

>From: awills@...

>Reply-Plagiocephalyegroups

>Plagiocephalyegroups

>Subject: first doctor visit

>Date: Wed, 04 Oct 2000 12:58:45 -0000

>

>Hello, my name is Abby and I've just recently joined the group. My 6

>month old son just had his first visit with the doctor and I've got

>some concerns I hope people can comment on. I've been reading posts

>in this group as well as some on the plagio page, and I'm worried

>about my situation.

>

>First of all, my pediatrician refered us to a plastic surgeon, not a

>craniofacial specialist. He in turn said our son has a moderate

>case, which I would agree with, because one of his ears is more

>forward than the other. He told us it was up to us whether to treat

>or not, but his situation would not likely improve on his own. So,

>we decided we wanted to go ahead with treatment. He gave us the name

>of a helmet center, and told us to come back when we got a helmet. I

>did not like this, as I expected the whole process to go through his

>office. He did not measure my son's head, and said improvements

>would me measured only visually. He also said he would only adjust

>the helmet every 6 weeks, and from what I've seen here, most people

>seem to adjust weekly. So, we have an appointment Monday with the

>helmet center. I called to ask about FDA approval, and they do not

>have it. It is a locally made helmet.

>

>I am very upset and not sure what to do. I don't really feel

>comfortable with the situation. I want my son to get treatment, but

>I'm not sure we're doing the right thing with these doctors. Does

>anyone else have a similar situation?

>

>Thanks for your help,

>

>Abby

>

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October 4, 2000

Hi Abby - I don't post much and haven't been reading many lately since my

son has finished treatment, but yours happened to catch my attention. First

of all, it's unfortunate that so many people have such bad opinions on

helmets from reading the posts at this site. There are many wonderful

helmet makers and many people who cannot afford the DOC band or the travel

to get to CT.

Here's our story - my son was diagnosed with tort and plagio at 4 months.

We live in the Seattle area and were sent to the cranio-facial team at

Children's Hospital (however, many here have been seen by plastic surgeons).

By the time we waited for appointments went through the casting etc., etc.,

my son was in his helmet a little before he was 6 months old. We were told

that he may have to wear the helmet 6 months depending on how fast he grew

into it. The doctor usually did check-ups every 4-6 weeks again depending

on how fast the child seemed to be growing. Well it ended up that my son

grew into the helmet in 9 weeks and his head is 99% corrected. We are

extremely pleased with the results.

Please check into your local helmet maker and ask a lot of questions -

particularly what their success rate is. It looks like you're on the right

track and you'll feel a lot better once your questions are answered. If

not, then maybe it's time to seek out other avenues. Best of luck to you

and your little one.

and Ethan (12/27/99)

PS Our helmet was not FDA approved either!

----- Original Message -----

From: <awills@...>

Sent: Wednesday, October 04, 2000 5:58 AM

Subject: first doctor visit

> Hello, my name is Abby and I've just recently joined the group. My 6

> month old son just had his first visit with the doctor and I've got

> some concerns I hope people can comment on. I've been reading posts

> in this group as well as some on the plagio page, and I'm worried

> about my situation.

>

> First of all, my pediatrician refered us to a plastic surgeon, not a

> craniofacial specialist. He in turn said our son has a moderate

> case, which I would agree with, because one of his ears is more

> forward than the other. He told us it was up to us whether to treat

> or not, but his situation would not likely improve on his own. So,

> we decided we wanted to go ahead with treatment. He gave us the name

> of a helmet center, and told us to come back when we got a helmet. I

> did not like this, as I expected the whole process to go through his

> office. He did not measure my son's head, and said improvements

> would me measured only visually. He also said he would only adjust

> the helmet every 6 weeks, and from what I've seen here, most people

> seem to adjust weekly. So, we have an appointment Monday with the

> helmet center. I called to ask about FDA approval, and they do not

> have it. It is a locally made helmet.

>

> I am very upset and not sure what to do. I don't really feel

> comfortable with the situation. I want my son to get treatment, but

> I'm not sure we're doing the right thing with these doctors. Does

> anyone else have a similar situation?

>

> Thanks for your help,

>

> Abby

>

October 4, 2000

>Abby,

Welcome to the group. I hope we can help you through this difficult

time! I have found this group to be really great and I'm just trying

to give back a little.

First of all, where are you located and through what hospital/center

is your son getting treatment? Perhaps someone else in the group

lives in your area and can help you out. Please let us know!

I have so many things I want to say to you. So, in no particular order.....

I do not think it is incredibly odd that you were referred to a

plastic surgeon. Our son (Evan) also is getting is treatment through

a plastic surgeon (who specializes in pediatric cranial facial

defects). This plastic surgeon is the one who created the helmet

that our son is wearing. I am not crazy about this guy's

personality, to be honest. But.....I don't think he is a bad doctor,

I think he has great credentials and I think he is well-suited to

oversee the care for my son. And that's what he does - he kind of

oversees the whole process. We check in with the plastic surgeon

periodically during and after the helmet treatment.

From the plastic surgeon's office, we were sent to radiology to have

a cat scan done (to rule out craniosynostosis). We were also

referred to the orthotics & prosthetics department of the hospital

for the actual helmet therapy. We love our orthotist ()!

is the one we work with the most. We have seen him every 2-3 weeks

so far in the 2 months that Evan has had his helmet. is the

one who really knows Evan's case, knows us, etc.

So....our helmet is locally made and not FDA approved. The hospital

has treated lots of plagio babies with their helmet and I know that

we are pleased with the results we are seeing. Evan's helmet does

not need weekly adjusting. Helmets are made very differently from

one another and different from the DOC band. Some kinds of helmets

may need frequent adjusting like the DOC band, and some may not.

You don't seem very happy with the ways things are going so far. Is

this plastic surgeon your only option? Again, if we know where you

live, maybe one of us in the group can help you find another doctor

you'd like better. If you decide to go with this doctor and the

local helmet, ask for measurements of your son's head (maybe the

helmet people with do that). Ask to see a helmet, ask how it is

designed, how it works, what are the success rates, why doesn't it

need to be checked on more frequently, etc. Find out as much as you

possibly can before you proceed! Just because it may not be like my

son's helmet or a DOC band doesn't mean it can't produce good results

for your son!

Good luck! Congratulations on getting this far! A lot of us a 6

months were still getting our doctors to try to acknowledge our

babies had a problem!

We'll look forward to hearing more from you!

Sorry this is so long. As everyone knows by now, brevity is not my

strong suit!

Sharon & Evan (11-22-99)