Re: Please Help a (We're New to All This)

[Guest guest]

I am a medical transcriptionist and I thought I would jump in about the occipital and parietal bones. There is only one occipital bone. It forms the back of the base of the skull. There are two parietal bones which form the largest part of the top and sides of the head. They are fused down the middle at the top of the skull. The parietal bones are fused to the occipital bone. Just a little anatomy lesson for everyone!!!

You did not cause this!!!! Please feel good that you are getting a help and this is correctable. You have definitely come to the right place. The people on this list are so supportive and caring.

Taryn

's mom

Please Help a (We're New to All This)

Hi everyone,Today was one of the saddest days of our lives. For the 1st 2 months of our baby's life, a preferred to lie to her right. We mentioned this to our Pediatrician, but he assured us that this was ok, and that everything would work out ok. We asked if we should rotate her sleeping position but he said not to. He said we didn't need to rotate her or anything, and that things would eventually correct themselves.At the age of 2 months, we noticed that our beautiful baby a's head was beginning to be deformed. She preferred to lie to her right, and it was becoming clear that the right back side of her head was flattening and her right ear was further forward than her left. So we started forcing her to lie more to her left, using a baby positioner, and really encouraging her to avoid the right side. This week (she's now 3 1/2 months old) we took her to see our Pediatrician again and he referred us to a specialisit, as things just haven't improved. We took our baby a to the Craniofacial Specialist today and I can't tell you how traumatic this was ... seeing her cry and cry and cry while they took x-rays ... and knowing that this is all our fault ... why did we let this happen???So the specialist called her situation moderate to severe ... noting that her right ear is more forward than her left ear, noting a very significant flattening of the right "occipital" and "parietal" bones (what does that mean?). He said that there is some hope ... he recommended that we use a DOC band immediately. He said that that it should correct her skull but he doesn't think it will correct her ears.We're SO sad ... I can't tell you how upset we are. We feel like we failed our baby and now she's deformed.Please help educate us ...1. Is the DOC band the way to go? Or are other therapies more effective? Or are there other brands of therapies?2. Does the DOC band correct most cases (she's only 3 1/2 months old)?3. How well do babies tolerate the DOC band? a hates wearing hats so we are concerned that she will not tolerate the DOC band.4. Is the doctor right that her ears will never normalize? How will she ever be able to wear glasses?5. Can we have a sleep on a Tempur Pedic pillow that molds to the head (this would reduce the pressure on her head).6. In an article the doctor gave us, it says to minimize time in the car seat or swing. Is there a way to reduce the tendency of flattening the head when we do have to have a in the car seat?7. Has anyone had success in fixing the head without a DOC band? We are concerned that a will hate wearing it and that this will change her from being a smiley, happy baby.8. Should we get a second opinion?9. Does anyone have tips on getting the insurance company to pay for this?10. How many hours a day should she wear the device? The doctors here say 23 hours a day.11. What else can we do? Thanks in advance for any help you might give. We know we've asked a lot of questions but we are really scared for our baby and don't know much about this or have knowledge of good resources to turn to. Matt & For more plagio info

[Guest guest]

Hi Matt & ,

Your situation sounds so similar to my son . He was dx with tort at 2 months, and the Doctor did not advise repositioning, although we tried as much as possible to no avail. His plagio also started inutero, but was seriously worsened by his tort and preference to the right side ( he did not have full rotation to the left). At 3 months I went to CT for an eval. They told me to aggresively reposition for a month, to exhaust that route to the fullest potential. At the 4 month check up, my Doc(s) blew off my concerns of his misaligned ears, and asymmetrical face with the droop cheek, smaller eye, slight bossing of the forehead. One Doctor even pointed to her own eyes, and said, hers were smaller too- not to worry, nobody's perfect. I went to my usual ped and she also said it was mild and she thought the ear misalignment was an optical illusion. I was fortunate enough to have found this group and seriously educate myself and dh, and was able to come up with our own decision based on all the variables, that we needed the DOC band- that was when I insisted that we get the referall. So, just a little history on us, but I can tell you, that your story and mine is very common where the Docs push this aside and call it "just cosmetic". I disagree as the shifting of the skull bones in my opinion, would also cause some due effect on its function. I'll try to answer some of your questions:

1. Is the DOC band the way to go? Or are other therapies more

effective? Or are there other brands of therapies? Many parents have used the DOC band, and have had great success (us included), others have used STARband, and locally made helmets, the key is to find an experienced orthotist, trained in this speciality, and look for before and after photos for success.

2. Does the DOC band correct most cases (she's only 3 1/2 months

old)? I personally have not heard of any DOC band cases not working here on this Board.

3. How well do babies tolerate the DOC band? a hates wearing

hats so we are concerned that she will not tolerate the DOC band.

had no problems at all wearing the band- a brief cry when first put on, but after that, smooth sailing- for 23 hours a day. (sometimes we deviated to 22 or 21 hours, only because of therapy for tort).

4. Is the doctor right that her ears will never normalize? How will

she ever be able to wear glasses?

Your Doctor is SO wrong about that- had the ear that was further forward, or further back, whichever ear you want to talk about, but after 3 months in the band (started at a week shy of 5 months), his ears are perfectly aligned!!!!!

5. Can we have a sleep on a Tempur Pedic pillow that molds to

the head (this would reduce the pressure on her head).

Anything at all that you can do now is great to help reduce the flattening. Reposition as much as possible, even if you have already decided to get the DOC band, keep repositioning in the interim to keep the severity from worsening.

6. In an article the doctor gave us, it says to minimize time in the

car seat or swing. Is there a way to reduce the tendency of

flattening the head when we do have to have a in the car seat?

This is hard since we do have daily lives to deal with, but I found a rolled up towel, placed at the base of the neck in the swing, helped to prop his head off of the back of the swing. Not sure about this trick in a carseat.

7. Has anyone had success in fixing the head without a DOC band? We

are concerned that a will hate wearing it and that this will

change her from being a smiley, happy baby.

We have had members post great success with repositioning over time. I think severity, circumstances regarding repositioning (for us daycare was involved, so virtually not enough control over that to satisfy our concerns). I feel that each case is an individual one, you have to weigh all circumstances to come to a decision about your child, not everyone has the same set of things going on.

8. Should we get a second opinion?

It never hurts to get a second opinion. Just keep in mind that your basically either going to find a band friendly doctor, or not. I think you've already come to your decision- so this is a moot point!

9. Does anyone have tips on getting the insurance company to pay for

this?

Sorry, but there are many members that can share their experience with you there.

10. How many hours a day should she wear the device? The doctors

here say 23 hours a day.

Yes, ideally 23 hours a day- again we deviated slightly, but the more time spent in the band daily, will potentially mean less time in it overall.

11. What else can we do?

Keep repositioning as much as possible!!!! Does a have tort?

Hope this helps somewhat!!! Good luck and please keep us posted!

' Mom (tort resolved, DOC grad 5-8 months)

[Guest guest]

In a message dated 8/26/2002 11:40:38 AM Eastern Daylight Time, eyeamawake@... writes:

a spent a lot of the weekend in her exersaucer (happily, she

loves it), on her tummy (hates it!), practicing sitting, or in the

Baby Bjorn.

,

It sounds like your doing all of the right things to help prevent any further plagio- way to go Mom and Dad!! I think most kids hate tummy time initially, I know did and soon he could go for 45 min. on his tummy! In a sense we were very fortunate ourselves to get the dx of tort at 2 months, not so lucky with the plagio and the Doc, but so lucky to be part of this group to urge me to push forward and educate me on all things plagio, as well as 100% coverage and CT only 30 min. away. I applaud those parents driving hours and flying the skies to get the help they need- talk about perserverance!!! So glad you are catching this very early, a will get great correction from a DOC band- don't worry!

' Mom

[Guest guest]

Hi ,

Thank you so much for the information and suggestions. In learning

about your story (and other peoples), we feel very fortunate that we

have made the progress we have so quickly. We wish we had been sent

to CT 6 weeks ago, but compared to what other families have gone

through just to get an RX, we have been so lucky with our ped and

specialist.

a does not have torticollis. She had a gaze preference for the

first two months but our ped gave us exercises to do with her and we

worked aggressively in repositioning her life to look to the left!

The specialist wrote in his note " no torticollis " so it looks like we

were successful in preventing that problem.

When a was born, her head was so round and perfect, people

thought she was a C-section. So, this is all positioning issues.

a spent a lot of the weekend in her exersaucer (happily, she

loves it), on her tummy (hates it!), practicing sitting, or in the

Baby Bjorn. She seems to be sleeping fine on the new positioner and

I have the Noggin Nest for when we go in the car. I think we are in

pretty good shape until we can get the band on her little head!

I am hoping to hear today if our insurance will cover the DOCBand.

Crossing my fingers!!

I will post with the response once we get it.

(a's mom, waiting for our DOC Band)

>

> Hi Matt & ,

> Your situation sounds so similar to my son . He was dx

with tort at

> 2 months, and the Doctor did not advise repositioning, although we

tried as

> much as possible to no avail. His plagio also started inutero, but

was

> seriously worsened by his tort and preference to the right side (

he did not

> have full rotation to the left). At 3 months I went to CT for an

eval. They

> told me to aggresively reposition for a month, to exhaust that

route to the

> fullest potential. At the 4 month check up, my Doc(s) blew off my

concerns

> of his misaligned ears, and asymmetrical face with the droop cheek,

smaller

> eye, slight bossing of the forehead. One Doctor even pointed to

her own

> eyes, and said, hers were smaller too- not to worry, nobody's

perfect. I

> went to my usual ped and she also said it was mild and she thought

the ear

> misalignment was an optical illusion. I was fortunate enough to

have found

> this group and seriously educate myself and dh, and was able to

come up with

> our own decision based on all the variables, that we needed the DOC

band-

> that was when I insisted that we get the referall. So, just a

little history

> on us, but I can tell you, that your story and mine is very common

where the

> Docs push this aside and call it " just cosmetic " . I disagree as

the shifting

> of the skull bones in my opinion, would also cause some due effect

on its

> function. I'll try to answer some of your questions:

>

>

> > 1. Is the DOC band the way to go? Or are other therapies more

> > effective? Or are there other brands of therapies? Many parents

have used

> > the DOC band, and have had great success (us included), others

have used

> > STARband, and locally made helmets, the key is to find an

experienced

> > orthotist, trained in this speciality, and look for before and

after photos

> > for success.

> >

> > 2. Does the DOC band correct most cases (she's only 3 1/2 months

> > old)? I personally have not heard of any DOC band cases not

working here

> > on this Board.

> >

> > 3. How well do babies tolerate the DOC band? a hates

wearing

> > hats so we are concerned that she will not tolerate the DOC

band.

>

> had no problems at all wearing the band- a brief cry when

first put

> on, but after that, smooth sailing- for 23 hours a day. (sometimes

we

> deviated to 22 or 21 hours, only because of therapy for tort).

>

> >

> > 4. Is the doctor right that her ears will never normalize? How

will

> > she ever be able to wear glasses?

>

> Your Doctor is SO wrong about that- had the ear that was

further

> forward, or further back, whichever ear you want to talk about, but

after 3

> months in the band (started at a week shy of 5 months), his ears

are

> perfectly aligned!!!!!

>

> >

> > 5. Can we have a sleep on a Tempur Pedic pillow that molds

to

> > the head (this would reduce the pressure on her head).

>

> Anything at all that you can do now is great to help reduce the

flattening.

> Reposition as much as possible, even if you have already decided to

get the

> DOC band, keep repositioning in the interim to keep the severity

from

> worsening.

>

> >

> > 6. In an article the doctor gave us, it says to minimize time in

the

> > car seat or swing. Is there a way to reduce the tendency of

> > flattening the head when we do have to have a in the car seat?

>

> This is hard since we do have daily lives to deal with, but I found

a rolled

> up towel, placed at the base of the neck in the swing, helped to

prop his

> head off of the back of the swing. Not sure about this trick in a

carseat.

>

> >

> > 7. Has anyone had success in fixing the head without a DOC

band? We

> > are concerned that a will hate wearing it and that this will

> > change her from being a smiley, happy baby.

>

> We have had members post great success with repositioning over

time. I think

> severity, circumstances regarding repositioning (for us daycare was

involved,

> so virtually not enough control over that to satisfy our

concerns). I feel

> that each case is an individual one, you have to weigh all

circumstances to

> come to a decision about your child, not everyone has the same set

of things

> going on.

>

> >

> > 8. Should we get a second opinion?

>

> It never hurts to get a second opinion. Just keep in mind that

your

> basically either going to find a band friendly doctor, or not. I

think

> you've already come to your decision- so this is a moot point!

> >

> > 9. Does anyone have tips on getting the insurance company to pay

for

> > this?

>

> Sorry, but there are many members that can share their experience

with you

> there.

>

> >

> > 10. How many hours a day should she wear the device? The

doctors

> > here say 23 hours a day.

>

> Yes, ideally 23 hours a day- again we deviated slightly, but the

more time

> spent in the band daily, will potentially mean less time in it

overall.

>

> >

> > 11. What else can we do?

>

> Keep repositioning as much as possible!!!! Does a have tort?

>

> Hope this helps somewhat!!! Good luck and please keep us posted!

>

> ' Mom (tort resolved, DOC grad 5-8 months)

>

> >

> >