To Band or Not. Please advise!

[Guest guest]

Hello,

Our son is almost 7 months old and was recently diagnosed with

plagiocephaly by a neurosurgeon. We were told his case is

borderline, any worse and he would recommend DOC treatment, any less

and he would not recommend treatment. The Dr. didn't mention

torticollis although our son does favor turning towards the right.

We received a prescription and made an appointment with Cranial

Therapies for Thurs for casting.

We're leaning towards treatment but are still struggling with it. My

son has some flattening on the back right side of his head and from

the top view it looks like his right ear is slightly in front of his

left. The right side of his head bulges a little more than the left

side. I think his head tends to be a little more elongated as well.

There are no noticeable facial asymetries. He also has a large head

(98%) so I think the abnormalities are more noticeable. I wish I

could be more certain if his case was mild or moderate.

I was the first person to notice and have been concerned for a couple

of months. My mother/sisters don't seem to think there's a problem

and think it will fix itself.

I would be distraught if we didn't do the treatment and his head

stayed the same/got worse. But, I don't know if his condition is

severe enough to warrent putting him through the treatment and I'm

also worried about the $3400 cost. We have United Health Care out of

California and I haven't heard good things about their covering DOC,

especially if his case is borderline.

I'm pretty sure we'll go with the treatment, but I just wanted to see

if anyone else went through a similar struggle and how you came about

your final decision. Thanks very much for any advice or thoughts you

may have.

Lily

[Guest guest]

Hi Lily,

I'm not sure if I the best to tell you things, because we go to

the neuro on the 3rd. I will tell you this...go with your gut. I

think most Moms notices these things first. (we were the ones that

counted fingers and toes :0)

If you want, you can go to the files section and you will see

pictures of all our babies. As far as the mild, moderate that is a

big debate as there is no set guidelines and I have learned is up to

indiv. dr.s to decide.

Try not to doubt yourself. You do know best. I sure many here

will also respond ...they will be able to tell you more. Good luck.

Sam's MOm

4/11/00

> Hello,

> Our son is almost 7 months old and was recently diagnosed with

> plagiocephaly by a neurosurgeon. We were told his case is

> borderline, any worse and he would recommend DOC treatment, any

less

> and he would not recommend treatment. The Dr. didn't mention

> torticollis although our son does favor turning towards the right.

> We received a prescription and made an appointment with Cranial

> Therapies for Thurs for casting.

> We're leaning towards treatment but are still struggling with it.

My

> son has some flattening on the back right side of his head and from

> the top view it looks like his right ear is slightly in front of

his

> left. The right side of his head bulges a little more than the

left

> side. I think his head tends to be a little more elongated as

well.

> There are no noticeable facial asymetries. He also has a large head

> (98%) so I think the abnormalities are more noticeable. I wish I

> could be more certain if his case was mild or moderate.

> I was the first person to notice and have been concerned for a

couple

> of months. My mother/sisters don't seem to think there's a problem

> and think it will fix itself.

> I would be distraught if we didn't do the treatment and his head

> stayed the same/got worse. But, I don't know if his condition is

> severe enough to warrent putting him through the treatment and I'm

> also worried about the $3400 cost. We have United Health Care out

of

> California and I haven't heard good things about their covering

DOC,

> especially if his case is borderline.

> I'm pretty sure we'll go with the treatment, but I just wanted to

see

> if anyone else went through a similar struggle and how you came

about

> your final decision. Thanks very much for any advice or thoughts

you

> may have.

> Lily

[Guest guest]

Dear Lily,

Your story is so much like mine. We saw many doctors, a plastics, an

ortho a neuro, people at the Shriners Hosp for Children and some said

mild some said moderate. Our older ped said it would round out (at

12 months?) his son agreed to the band. We were so on the fence that

we had the casting done and called Jeanne Pomatto at Ct and siad

don't do the band yet we still didn't know. She said to send her

pics of Maggie at every angle and she would give us her analysis.

She told us things we didn't see but were quite obvious in the

photos. We went forward with the band. One of the reasons is that

suppose Maggie was 16 and comes running through the front door in

tears because she was just at a pool party and someone said her head

was lopsided. Could I tell her then that we knew of the problem and

there was help available but we didn't choose that course of action?

Kids can be very cruel and mean. Perhaps the $3k for the band is

also buying us piece of mind and it is a very small price to pay.

Even though Maggie was older when she got the band, we are seeing

positive changes. Even our family and friends (the ones who said

they saw nothing obvious before)can see the improvement. That's our

story. Kaycee in Albany, NY

- In Plagiocephalyegroups, gpfeiff@m... wrote:

> Hello,

> Our son is almost 7 months old and was recently diagnosed with

> plagiocephaly by a neurosurgeon. We were told his case is

> borderline, any worse and he would recommend DOC treatment, any

less

> and he would not recommend treatment. The Dr. didn't mention

> torticollis although our son does favor turning towards the right.

> We received a prescription and made an appointment with Cranial

> Therapies for Thurs for casting.

> We're leaning towards treatment but are still struggling with it.

My

> son has some flattening on the back right side of his head and from

> the top view it looks like his right ear is slightly in front of

his

> left. The right side of his head bulges a little more than the

left

> side. I think his head tends to be a little more elongated as

well.

> There are no noticeable facial asymetries. He also has a large head

> (98%) so I think the abnormalities are more noticeable. I wish I

> could be more certain if his case was mild or moderate.

> I was the first person to notice and have been concerned for a

couple

> of months. My mother/sisters don't seem to think there's a problem

> and think it will fix itself.

> I would be distraught if we didn't do the treatment and his head

> stayed the same/got worse. But, I don't know if his condition is

> severe enough to warrent putting him through the treatment and I'm

> also worried about the $3400 cost. We have United Health Care out

of

> California and I haven't heard good things about their covering

DOC,

> especially if his case is borderline.

> I'm pretty sure we'll go with the treatment, but I just wanted to

see

> if anyone else went through a similar struggle and how you came

about

> your final decision. Thanks very much for any advice or thoughts

you

> may have.

> Lily

[Guest guest]

Lily,

Your story is similar to ours. I have always thought our sons head

looked a little out of shape,but I thought it was just me.He too has

a big head (98%). It kept getting worse,so I mentioned it to our ped.

at his 4month well check. He said it was not that bad,but if he were

his child he would have it checked.(our ped is wonderful, I really

trust him) So he sent us to a neurosurgeon. I was not happy with the

neurosurgeon! He made me feel like an idiot for bringing my son to

him. He actually asked me,What don't you like about your sons head?

I don't want anything to be wrong with my son, but if there is I want

it corrected. Life is hard enough without having a warped head. So we

went to a plactic and reconstructive surgeon for a second opinion. He

said our son was a mild case,and with a soft shell helmet it would

probably be corrected in about 3months. He was very nice,and he

reasurred me I was doing the right thing by being concerned. My sons

has had his helmet for 3weeks now,and I can already see some

improvement. He favors his right side, so it is a little flat on that

side,and he has a slight bulge on his head and cheek. One of his ears

is also lower than the other one.I don't know if this helps or not,

but I thought I would share our story, since our story is similar to

yours. God Bless

Wanda (Kendalls Mom)

> Hello,

> Our son is almost 7 months old and was recently diagnosed with

> plagiocephaly by a neurosurgeon. We were told his case is

> borderline, any worse and he would recommend DOC treatment, any

less

> and he would not recommend treatment. The Dr. didn't mention

> torticollis although our son does favor turning towards the right.

> We received a prescription and made an appointment with Cranial

> Therapies for Thurs for casting.

> We're leaning towards treatment but are still struggling with it.

My

> son has some flattening on the back right side of his head and from

> the top view it looks like his right ear is slightly in front of

his

> left. The right side of his head bulges a little more than the

left

> side. I think his head tends to be a little more elongated as

well.

> There are no noticeable facial asymetries. He also has a large head

> (98%) so I think the abnormalities are more noticeable. I wish I

> could be more certain if his case was mild or moderate.

> I was the first person to notice and have been concerned for a

couple

> of months. My mother/sisters don't seem to think there's a problem

> and think it will fix itself.

> I would be distraught if we didn't do the treatment and his head

> stayed the same/got worse. But, I don't know if his condition is

> severe enough to warrent putting him through the treatment and I'm

> also worried about the $3400 cost. We have United Health Care out

of

> California and I haven't heard good things about their covering

DOC,

> especially if his case is borderline.

> I'm pretty sure we'll go with the treatment, but I just wanted to

see

> if anyone else went through a similar struggle and how you came

about

> your final decision. Thanks very much for any advice or thoughts

you

> may have.

> Lily