Re: COPC/ KY Helmet/ / Repost

[Guest guest]

, thanks for posting ' story for the newbies seeking

treatment in your area.

Dustie

> Hi all!

>

> I got email from a few members of the group asking about our

> experience with COPC in New Albany, Indiana. I was on vacation

when

> those messages came in, and unfortunately managed to obliterate

most

> of my inbox. I hope the parents that wrote to me will see this.

>

> I'm reposting ' story. It's very long - sorry for sending

such

> a big file.

>

> I'll be keeping an eye on the KY discussions. I'm expecting a new

> baby in October! Obviously we will be going out of our way to

> prevent plagio problems this time around, but if we find we need

> treatment, we're going to be much smarter and proactive.

>

> -

> mom to (28 mo. brachy/plagio), COPC local helmet dropout,

> Indiana

>

> We noticed ' plagio at 4 months, in the bath. He

> had a

> flattened right side and a slight bulge to the left.

> We brought it

> up to the ped at his 4-month check up, and she

> basically said to

> reposition him -- get him off his back during the day,

> and get him to

> turn his head to the other side while sleeping,

> carseat, bouncy

> chair, etc. We tried that but were mostly

> unsuccessful. He hated

> tummy time, but was OK with the exersaucer although I

> didn't want to

> leave him in that all day. He was quite determined to

> look off to

> the right side no matter what. At night if I tried to

> turn his head,

> he'd either wake up, or within ½ hour was back on the

> flat spot. In

> retrospect, he probably had at least mild torticollis,

> but that was

> not noticed by our ped and we didn't know anything

> about it.

>

> At his 6 month appointment there was no real

> improvement. Our ped

> offered to send us to a specialist and told us about

> helmet therapy,

> but said that she really didn't think it was

> necessary. She told the

> story of the " worst case " she had ever seen -- a boy

> so flat you

> could see both ears from the side, but his parents

> weren't diligent

> about his helmet and he still turned out " fine " . We

> got the name and

> number of the neurosurgeon anyway. At that time, we

> had to go out of

> state on family emergency, and then there was a wait

> to see the

> doctor. We were able to get him an appt when he was

> about 8 months.

> All this time we continued to try repositioning, but

> still with

> limited success. His condition stabilized and didn't

> get any worse.

> I did notice that he had some bossing of his right

> forehead and some

> asymmetry that was apparent when you looked at him in

> the mirror.

> Now that I know what to look for, I can see it in

> person and in

> pictures.

>

> I read more about plagio on the net and became

> concerned and wanted

> to get into a band or helmet. My husband was on

> the side of

> those who wanted to wait-and-see.

>

> Our appt with the neurosurgeon ( Moriarity of

> Kosair hospital

> in Louisville) went OK. Sort of. We were kept waiting

> for 4 hours,

> and then he examined for about 5 minutes. He

> measured his

> head (50th percentile), did some neuro checks, and

> basically told us

> we could go either way. He would prescribe us a helmet

> if we wanted

> it, that most kids did well with it, but that because

> his face looked

> fine, it wasn't really necessary. I asked if there

> would be any

> natural improvement, and he said he didn't think it

> was likely. He

> rated ' plagio at a 5 on a scale of 1-10. He

> diagnosed by

> sight and did not do any imaging studies to confirm

> the diagnosis.

>

> We waffled for a week and opted to give the helmet a

> try. We went to

> the Center for Orthotic and Prosthetic care in New

> Albany, IN, and

> met with their orthotist. was older than most

> of the babies

> they'd helmeted. Oh, I should mention that neither the

> orthotist nor

> Dr. Moriarity could give me before/after pictures or

> any case

> histories of other plagio babies. They did not cast

> for the helmet --

> they took measurements using calipers and photographs

> to develop the

> helmet. There was a fitting for the measurements, a

> fitting for the

> foam interior, and at 9 months we picked up the

> finished helmet.

>

> We could not get to tolerate the helmet AT ALL.

> It did not

> seem to fit right, although the ortho said it was

> normal because the

> helmet was the shape we wanted his head to grow into,

> so it would

> appear not to fit correctly at first. got red

> spots at the

> right points that faded within an hour, so all

> appeared OK with the

> basic fit. He still wasn't sitting up on his own or

> crawling at this

> point, and the helmet would shift as he'd roll on the

> floor. He

> could push the helmet off rather easily. We took him

> back to the

> ortho to get the fit checked, and he gave us a chin

> strap. After that we had a hard time getting in touch

> with and getting assistance from the ortho.

>

> Trying to get to wear the helmet was a

> disaster. He'd fight

> having it put on, and scream until it was off. If we

> managed to get

> in on him without him noticing, we'd have to go to

> great lengths to

> keep him from touching it, because if he noticed it

> was there, he'd

> scream. So we had to very energetically and actively

> get in his face

> and distract him. Even so, within an hour, he'd be

> screaming and

> would not stop until the helmet came off. Once off, he

> was calm.

> But then we'd have to wait a few hours before he was

> even game to try

> again. He would NOT sleep in the helmet, unless we

> were holding him

> upright and rocking him. He would wake as soon as you

> laid him down

> (and scream). He's always been a bad sleeper, so this

> was pretty

> much more than we could take. We kept trying for

> almost two weeks to

> get him to accept the helmet. Finally, frustrated and

> exhausted, we

> gave up on it. My baby went back to being his cheerful

> self and I

> became a basket case of " what will happen to him now? "

>

> After that, we did notice that on its own, his

> headshape was

> improving. Not perfecting, but better than it was at 6

> months.

>

> We fired our ped (the plagio among many reasons) and

> decided to take

> him to our family doctor for his one-year visit. She

> was aghast that

> Kosair had made the diagnosis without imaging studies.

> While she

> didn't think that much could be done for him at this

> point, she

> wanted the diagnosis confirmed, and referred us to

> Children's

> Hospital in Cincinnati. We took for Xrays and a

> consult. The

> good news is that he doesn't have cranio. The " bad "

> news was that

> they wouldn't recommend another attempt at banding,

> given his age and

> how his previous experience had been. They were very

> very nice with

> us, and showed us their lit that they give to new

> parents. Their

> policy is to stress education and prevention, then

> repositioning with

> PT for tort, and then helmets only in the most severe

> or unresponsive

> cases. It has been their experience that compliance

> (for both the

> parents and the baby) is a significant problem with

> the older

> babies. They did not think his plagio was all that bad

> (actually,

> he's really mostly brachy with some asymmetry) and had

> to feel and

> look for it. She asked where his flat spot was, so it

> wasn't

> immediately apparent. His full head of wavy hair

> helps. We got to

> see his Xrays -- I was afraid to, afraid I'd see his

> skull angular

> and misshapen, but it ended up looking almost

> perfectly normal.

>

> is now 27 months old (picture of him at 25

> months: http://www.elucem.com/baby/xmasjammies.jpg)

> and we did see some natural improvement of his

> headshape through 18 months (he had a big growth spurt

> at 16 months that helped) but little to none since

> then (some days he looks better than others to me) and

> it's not perfect, but we think cosmetically his

> headshape is acceptable. When his hair is wet, or with

> some angles you may notice the assymmetry, and I'm

> worried about the long-term effects but at this point

> what's done is done and we just have to love him and

> teach him to love himself.

>

> As for the STARband/Hangar Orthotics -- we didn't know there was a

> local option for it, and I even looked at the

> orthomerica site and they listed nobody in our area at

> the time we were treating . The closest DOC

> clinic to us in Chicago and for many reasons wasn't a

> possiblilty.

>

> That's our story. I encourage you to get in

> touch with as many people as you can because I get the

> sense from my time with the group that COPC has more

> unsatisfied customers than a lot of other providers.

> If it were me doing it again now I would look into the STARband

> option.

>

> One other thing, we have Anthem and they did not

> cover the cost of the helmet even after two appeals.

> Dr. Moriarty and COPC were supposed to provide letters

> of medical necessity to the insurance and didn't. if

> you go with COPC be sure to hound them about that.

[Guest guest]

,

Thanks for taking the time to post about your experience with COPC.

> Hi all!

>

> I got email from a few members of the group asking about our

> experience with COPC in New Albany, Indiana. I was on vacation when

> those messages came in, and unfortunately managed to obliterate

most

> of my inbox. I hope the parents that wrote to me will see this.

>

> I'm reposting ' story. It's very long - sorry for sending

such

> a big file.

>

> I'll be keeping an eye on the KY discussions. I'm expecting a new

> baby in October! Obviously we will be going out of our way to

> prevent plagio problems this time around, but if we find we need

> treatment, we're going to be much smarter and proactive.

>

> -

> mom to (28 mo. brachy/plagio), COPC local helmet dropout,

> Indiana

>

> We noticed ' plagio at 4 months, in the bath. He

> had a

> flattened right side and a slight bulge to the left.

> We brought it

> up to the ped at his 4-month check up, and she

> basically said to

> reposition him -- get him off his back during the day,

> and get him to

> turn his head to the other side while sleeping,

> carseat, bouncy

> chair, etc. We tried that but were mostly

> unsuccessful. He hated

> tummy time, but was OK with the exersaucer although I

> didn't want to

> leave him in that all day. He was quite determined to

> look off to

> the right side no matter what. At night if I tried to

> turn his head,

> he'd either wake up, or within ½ hour was back on the

> flat spot. In

> retrospect, he probably had at least mild torticollis,

> but that was

> not noticed by our ped and we didn't know anything

> about it.

>

> At his 6 month appointment there was no real

> improvement. Our ped

> offered to send us to a specialist and told us about

> helmet therapy,

> but said that she really didn't think it was

> necessary. She told the

> story of the " worst case " she had ever seen -- a boy

> so flat you

> could see both ears from the side, but his parents

> weren't diligent

> about his helmet and he still turned out " fine " . We

> got the name and

> number of the neurosurgeon anyway. At that time, we

> had to go out of

> state on family emergency, and then there was a wait

> to see the

> doctor. We were able to get him an appt when he was

> about 8 months.

> All this time we continued to try repositioning, but

> still with

> limited success. His condition stabilized and didn't

> get any worse.

> I did notice that he had some bossing of his right

> forehead and some

> asymmetry that was apparent when you looked at him in

> the mirror.

> Now that I know what to look for, I can see it in

> person and in

> pictures.

>

> I read more about plagio on the net and became

> concerned and wanted

> to get into a band or helmet. My husband was on

> the side of

> those who wanted to wait-and-see.

>

> Our appt with the neurosurgeon ( Moriarity of

> Kosair hospital

> in Louisville) went OK. Sort of. We were kept waiting

> for 4 hours,

> and then he examined for about 5 minutes. He

> measured his

> head (50th percentile), did some neuro checks, and

> basically told us

> we could go either way. He would prescribe us a helmet

> if we wanted

> it, that most kids did well with it, but that because

> his face looked

> fine, it wasn't really necessary. I asked if there

> would be any

> natural improvement, and he said he didn't think it

> was likely. He

> rated ' plagio at a 5 on a scale of 1-10. He

> diagnosed by

> sight and did not do any imaging studies to confirm

> the diagnosis.

>

> We waffled for a week and opted to give the helmet a

> try. We went to

> the Center for Orthotic and Prosthetic care in New

> Albany, IN, and

> met with their orthotist. was older than most

> of the babies

> they'd helmeted. Oh, I should mention that neither the

> orthotist nor

> Dr. Moriarity could give me before/after pictures or

> any case

> histories of other plagio babies. They did not cast

> for the helmet --

> they took measurements using calipers and photographs

> to develop the

> helmet. There was a fitting for the measurements, a

> fitting for the

> foam interior, and at 9 months we picked up the

> finished helmet.

>

> We could not get to tolerate the helmet AT ALL.

> It did not

> seem to fit right, although the ortho said it was

> normal because the

> helmet was the shape we wanted his head to grow into,

> so it would

> appear not to fit correctly at first. got red

> spots at the

> right points that faded within an hour, so all

> appeared OK with the

> basic fit. He still wasn't sitting up on his own or

> crawling at this

> point, and the helmet would shift as he'd roll on the

> floor. He

> could push the helmet off rather easily. We took him

> back to the

> ortho to get the fit checked, and he gave us a chin

> strap. After that we had a hard time getting in touch

> with and getting assistance from the ortho.

>

> Trying to get to wear the helmet was a

> disaster. He'd fight

> having it put on, and scream until it was off. If we

> managed to get

> in on him without him noticing, we'd have to go to

> great lengths to

> keep him from touching it, because if he noticed it

> was there, he'd

> scream. So we had to very energetically and actively

> get in his face

> and distract him. Even so, within an hour, he'd be

> screaming and

> would not stop until the helmet came off. Once off, he

> was calm.

> But then we'd have to wait a few hours before he was

> even game to try

> again. He would NOT sleep in the helmet, unless we

> were holding him

> upright and rocking him. He would wake as soon as you

> laid him down

> (and scream). He's always been a bad sleeper, so this

> was pretty

> much more than we could take. We kept trying for

> almost two weeks to

> get him to accept the helmet. Finally, frustrated and

> exhausted, we

> gave up on it. My baby went back to being his cheerful

> self and I

> became a basket case of " what will happen to him now? "

>

> After that, we did notice that on its own, his

> headshape was

> improving. Not perfecting, but better than it was at 6

> months.

>

> We fired our ped (the plagio among many reasons) and

> decided to take

> him to our family doctor for his one-year visit. She

> was aghast that

> Kosair had made the diagnosis without imaging studies.

> While she

> didn't think that much could be done for him at this

> point, she

> wanted the diagnosis confirmed, and referred us to

> Children's

> Hospital in Cincinnati. We took for Xrays and a

> consult. The

> good news is that he doesn't have cranio. The " bad "

> news was that

> they wouldn't recommend another attempt at banding,

> given his age and

> how his previous experience had been. They were very

> very nice with

> us, and showed us their lit that they give to new

> parents. Their

> policy is to stress education and prevention, then

> repositioning with

> PT for tort, and then helmets only in the most severe

> or unresponsive

> cases. It has been their experience that compliance

> (for both the

> parents and the baby) is a significant problem with

> the older

> babies. They did not think his plagio was all that bad

> (actually,

> he's really mostly brachy with some asymmetry) and had

> to feel and

> look for it. She asked where his flat spot was, so it

> wasn't

> immediately apparent. His full head of wavy hair

> helps. We got to

> see his Xrays -- I was afraid to, afraid I'd see his

> skull angular

> and misshapen, but it ended up looking almost

> perfectly normal.

>

> is now 27 months old (picture of him at 25

> months: http://www.elucem.com/baby/xmasjammies.jpg)

> and we did see some natural improvement of his

> headshape through 18 months (he had a big growth spurt

> at 16 months that helped) but little to none since

> then (some days he looks better than others to me) and

> it's not perfect, but we think cosmetically his

> headshape is acceptable. When his hair is wet, or with

> some angles you may notice the assymmetry, and I'm

> worried about the long-term effects but at this point

> what's done is done and we just have to love him and

> teach him to love himself.

>

> As for the STARband/Hangar Orthotics -- we didn't know there was a

> local option for it, and I even looked at the

> orthomerica site and they listed nobody in our area at

> the time we were treating . The closest DOC

> clinic to us in Chicago and for many reasons wasn't a

> possiblilty.

>

> That's our story. I encourage you to get in

> touch with as many people as you can because I get the

> sense from my time with the group that COPC has more

> unsatisfied customers than a lot of other providers.

> If it were me doing it again now I would look into the STARband

> option.

>

> One other thing, we have Anthem and they did not

> cover the cost of the helmet even after two appeals.

> Dr. Moriarty and COPC were supposed to provide letters

> of medical necessity to the insurance and didn't. if

> you go with COPC be sure to hound them about that.

[Guest guest]

,

Thank you againg for taking the time to post your personal

experience at COPC in New Albany, IN. And I really appreciate your

keeping an eye out for KY subject lines, since you have actually

been in the same situation as many of these new parents!

The Hanger option in Louisville is one that the group has only

recently learned of... I think it was (Mom to Philip) who

first posted that she found this facility, after dropping out from

her COPC helmet. I did find the Louisville Hanger facility listed

in the www.hanger.com website under facility locator. They are a

huge company, and a minority of their locations offer cranial

banding. Hanger has it's own band, the Hanger Cranial Band, which

is an FDA approved active band, similar in appearance to the

Starband. Sometimes their facility will also offer the Starband,

and I don't know how long the Hanger location in Louisville has been

offering it. When I spoke with this orthotist a few months ago, I

found that he doesn't have a wealth of experience, but does have

some, and also has some specialty interest and training in

plagiocephaly and cranial orthoses. I am very excited that we have

a new member giving them a try, because we need some reviews and

feedback on other options in our Kentucky area. If you ever come

across anyone from Ky looking for options, we have this new one

listed in the Helmet/Band Database for consideration.

Take care,

Christie (Mom to Repo'd Remy)

> Hi all!

>

> I got email from a few members of the group asking about our

> experience with COPC in New Albany, Indiana. I was on vacation

when

> those messages came in, and unfortunately managed to obliterate

most

> of my inbox. I hope the parents that wrote to me will see this.

>

> I'm reposting ' story. It's very long - sorry for sending

such

> a big file.

>

> I'll be keeping an eye on the KY discussions. I'm expecting a new

> baby in October! Obviously we will be going out of our way to

> prevent plagio problems this time around, but if we find we need

> treatment, we're going to be much smarter and proactive.

>

> -

> mom to (28 mo. brachy/plagio), COPC local helmet dropout,

> Indiana

>

> We noticed ' plagio at 4 months, in the bath. He

> had a

> flattened right side and a slight bulge to the left.

> We brought it

> up to the ped at his 4-month check up, and she

> basically said to

> reposition him -- get him off his back during the day,

> and get him to

> turn his head to the other side while sleeping,

> carseat, bouncy

> chair, etc. We tried that but were mostly

> unsuccessful. He hated

> tummy time, but was OK with the exersaucer although I

> didn't want to

> leave him in that all day. He was quite determined to

> look off to

> the right side no matter what. At night if I tried to

> turn his head,

> he'd either wake up, or within ½ hour was back on the

> flat spot. In

> retrospect, he probably had at least mild torticollis,

> but that was

> not noticed by our ped and we didn't know anything

> about it.

>

> At his 6 month appointment there was no real

> improvement. Our ped

> offered to send us to a specialist and told us about

> helmet therapy,

> but said that she really didn't think it was

> necessary. She told the

> story of the " worst case " she had ever seen -- a boy

> so flat you

> could see both ears from the side, but his parents

> weren't diligent

> about his helmet and he still turned out " fine " . We

> got the name and

> number of the neurosurgeon anyway. At that time, we

> had to go out of

> state on family emergency, and then there was a wait

> to see the

> doctor. We were able to get him an appt when he was

> about 8 months.

> All this time we continued to try repositioning, but

> still with

> limited success. His condition stabilized and didn't

> get any worse.

> I did notice that he had some bossing of his right

> forehead and some

> asymmetry that was apparent when you looked at him in

> the mirror.

> Now that I know what to look for, I can see it in

> person and in

> pictures.

>

> I read more about plagio on the net and became

> concerned and wanted

> to get into a band or helmet. My husband was on

> the side of

> those who wanted to wait-and-see.

>

> Our appt with the neurosurgeon ( Moriarity of

> Kosair hospital

> in Louisville) went OK. Sort of. We were kept waiting

> for 4 hours,

> and then he examined for about 5 minutes. He

> measured his

> head (50th percentile), did some neuro checks, and

> basically told us

> we could go either way. He would prescribe us a helmet

> if we wanted

> it, that most kids did well with it, but that because

> his face looked

> fine, it wasn't really necessary. I asked if there

> would be any

> natural improvement, and he said he didn't think it

> was likely. He

> rated ' plagio at a 5 on a scale of 1-10. He

> diagnosed by

> sight and did not do any imaging studies to confirm

> the diagnosis.

>

> We waffled for a week and opted to give the helmet a

> try. We went to

> the Center for Orthotic and Prosthetic care in New

> Albany, IN, and

> met with their orthotist. was older than most

> of the babies

> they'd helmeted. Oh, I should mention that neither the

> orthotist nor

> Dr. Moriarity could give me before/after pictures or

> any case

> histories of other plagio babies. They did not cast

> for the helmet --

> they took measurements using calipers and photographs

> to develop the

> helmet. There was a fitting for the measurements, a

> fitting for the

> foam interior, and at 9 months we picked up the

> finished helmet.

>

> We could not get to tolerate the helmet AT ALL.

> It did not

> seem to fit right, although the ortho said it was

> normal because the

> helmet was the shape we wanted his head to grow into,

> so it would

> appear not to fit correctly at first. got red

> spots at the

> right points that faded within an hour, so all

> appeared OK with the

> basic fit. He still wasn't sitting up on his own or

> crawling at this

> point, and the helmet would shift as he'd roll on the

> floor. He

> could push the helmet off rather easily. We took him

> back to the

> ortho to get the fit checked, and he gave us a chin

> strap. After that we had a hard time getting in touch

> with and getting assistance from the ortho.

>

> Trying to get to wear the helmet was a

> disaster. He'd fight

> having it put on, and scream until it was off. If we

> managed to get

> in on him without him noticing, we'd have to go to

> great lengths to

> keep him from touching it, because if he noticed it

> was there, he'd

> scream. So we had to very energetically and actively

> get in his face

> and distract him. Even so, within an hour, he'd be

> screaming and

> would not stop until the helmet came off. Once off, he

> was calm.

> But then we'd have to wait a few hours before he was

> even game to try

> again. He would NOT sleep in the helmet, unless we

> were holding him

> upright and rocking him. He would wake as soon as you

> laid him down

> (and scream). He's always been a bad sleeper, so this

> was pretty

> much more than we could take. We kept trying for

> almost two weeks to

> get him to accept the helmet. Finally, frustrated and

> exhausted, we

> gave up on it. My baby went back to being his cheerful

> self and I

> became a basket case of " what will happen to him now? "

>

> After that, we did notice that on its own, his

> headshape was

> improving. Not perfecting, but better than it was at 6

> months.

>

> We fired our ped (the plagio among many reasons) and

> decided to take

> him to our family doctor for his one-year visit. She

> was aghast that

> Kosair had made the diagnosis without imaging studies.

> While she

> didn't think that much could be done for him at this

> point, she

> wanted the diagnosis confirmed, and referred us to

> Children's

> Hospital in Cincinnati. We took for Xrays and a

> consult. The

> good news is that he doesn't have cranio. The " bad "

> news was that

> they wouldn't recommend another attempt at banding,

> given his age and

> how his previous experience had been. They were very

> very nice with

> us, and showed us their lit that they give to new

> parents. Their

> policy is to stress education and prevention, then

> repositioning with

> PT for tort, and then helmets only in the most severe

> or unresponsive

> cases. It has been their experience that compliance

> (for both the

> parents and the baby) is a significant problem with

> the older

> babies. They did not think his plagio was all that bad

> (actually,

> he's really mostly brachy with some asymmetry) and had

> to feel and

> look for it. She asked where his flat spot was, so it

> wasn't

> immediately apparent. His full head of wavy hair

> helps. We got to

> see his Xrays -- I was afraid to, afraid I'd see his

> skull angular

> and misshapen, but it ended up looking almost

> perfectly normal.

>

> is now 27 months old (picture of him at 25

> months: http://www.elucem.com/baby/xmasjammies.jpg)

> and we did see some natural improvement of his

> headshape through 18 months (he had a big growth spurt

> at 16 months that helped) but little to none since

> then (some days he looks better than others to me) and

> it's not perfect, but we think cosmetically his

> headshape is acceptable. When his hair is wet, or with

> some angles you may notice the assymmetry, and I'm

> worried about the long-term effects but at this point

> what's done is done and we just have to love him and

> teach him to love himself.

>

> As for the STARband/Hangar Orthotics -- we didn't know there was a

> local option for it, and I even looked at the

> orthomerica site and they listed nobody in our area at

> the time we were treating . The closest DOC

> clinic to us in Chicago and for many reasons wasn't a

> possiblilty.

>

> That's our story. I encourage you to get in

> touch with as many people as you can because I get the

> sense from my time with the group that COPC has more

> unsatisfied customers than a lot of other providers.

> If it were me doing it again now I would look into the STARband

> option.

>

> One other thing, we have Anthem and they did not

> cover the cost of the helmet even after two appeals.

> Dr. Moriarty and COPC were supposed to provide letters

> of medical necessity to the insurance and didn't. if

> you go with COPC be sure to hound them about that.