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

[Guest guest]

Matt &

My husband and I have been in your same place emotionally. Logan

preferred to sleep on his right side. Our ped also said he would out

grow it. We noticed his ear moving forward, and one eye looking

larger than the other. At four months we did some research on the

internet. I realized that Logan would NOT grow out of it and I was

so upset. I read about 23 hour a day helmets and sat at this

computer and bawled.

First of all, IT'S NOT YOUR FAULT. We trust our pediatricians to

tell us what's best. It's the medical community who failed baby

a NOT YOU GUYS. We have all felt this guilt. I had a wave of it

last night as a matter of fact. But we shouldn't feel guilty!

Second, a is soooooo young! She will get awesome correction! It

took 2 1/2 months for us to get a prescription for Logan's DOC band.

You are so lucky that you've started this journey while a is so

young. And I don't know about the ear correction. I've heard great

stories of babies ears aligning, I am hoping that will be the case

for Logan.

Third, it sounds like a may have torticollis. I would definitely

get that looked at. When you look at her from behind, is her left

ear closer to her shoulder than the right? Logan tilts to the left

and looks to the right.

Boy, this is a long post! There are a lot of links you can go to,

I'm sure someone will post them. I just want to let you know that

EVERYTHING WILL BE OKAY. It's hard right now because it's all new.

But get her in the DOC band and it will be great. Logan has been in

his band for 2 days. He doesn't even notice it.

-/Logan 6.5 months DOC 2 days

PA

> 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 &

[Guest guest]

Hi Matt & - welcome to our group!!!!

We're sooo happy you have found us, it sounds like you are very

frightened, guilt-ridden (for NO reason!) and need some good

support.

First, let me tell you - this is NOT YOUR FAULT!!! I feel like a

broken record telling new members this, but really, you have done

absolutely nothing wrong! You've slept a on her back as you were

instructed to do to reduce the risk of SIDS which is terrific. All

of us in this group have had the same thing happen to our baby, and

we most certainly didn't do it on purpose! There isn't enough

education about plagio out there today for soon to be parents, that

is when we need to learn about plagio, BEFORE it happens, but

unfortunatley that doesn't happen :'(.

a sounds like my daughter Abby, absolutely always faced the right

while she slept or was lying down. I tried repositioning &

repositioning but that unfortunately did not help her. It sounds

like you've been trying this as well, it does work for some, but

unfortunately not all.

So please please please, stop feeling guilty about this.! I cannot

stress enough that this is NOT your fault. Some babies are more

prone to plagio than others. I often wondered how sooo many other

babies who spent as much time on their back as Abby did, had

perfectly round heads and Abby didn't.

It is possible that a's plagio began in utero? Did you Dr ever

mention this to you? Abby's did, as have a lot of our member's

babies.

I am happy to hear the specialist did Xrays of a to rule out

craniosynostosis, that is great, a's case does sound like

plagio, but it's best to be safe to rule out cranio.

Let me also say it sounds like you have both a super ped. and a super

specialist! So many of our members have struggled to get their baby

even referred to a specialist, then they go to the specialist & get

the " don't worry, it'll round on it's own " speech. I always like

hearing of a good ped & specialist!

Let me answer your questions below:

>

> 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?

A) YES, I cannot say enough great things about the DOCband! Are you

near a Cranial Technologies clinic? Must be if your specialist

referred you there. All the occupational therapists (we usually call

them orthotists) have gone thru extensive training of the DOCband and

plagio before they are allowed to treat babies with the product.

Cranial Tech. makes ONLY the DOCband, so that is their specialty.

Their expertise is amazing!!!

>

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

> old)?

A) YES, especially at your daughter's young age, really, she's at a

great age to begin treatmetn if that's the route you decide to take.

My Abby didn't begin her DOCband til age 11.5 mos when growth

significanlty slows, Abby's plagio was severe, but we were still able

to get 50-60% correction, which I " m very thrilled with!

>

> 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.

A) I have been a member of this group since 11/99, and I've only

heard fo MAYBE a handful (at most) of babies who did not tolerate

their band well. Believe it or not, the baby doesn't even know it's

on their pretty lil head! I didn't believe it when people told me

that, figuring Abby would be miserable with hers on, but she honestly

didn't care for a second. She slept just fine in it and went about

her normal routine (with a nice protection hat as she learned to

walk!, it seriously did a great job protecting her too!)

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

will

> she ever be able to wear glasses?

A) No, your Dr is wrong there. The DOCband definitely improves

assyemtries. As the head rounds, the ears slowly shift back into the

correct location on the baby's head. Seriously, the DOCband does

wonders for most assymetries!

>

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

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

A) I've never heard of this so can't give you an opinion here!

> 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?

A) Of course you're gonna have to drive places with a, I simply

rolled a towel up to keep Abby off her right side while we traveled,

but I'm sure someone else will give you a better tip on this one.

> 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.

A) Yes, I'm happy to say, we've had several successful repositioners

in our group. Repositioning is best when begun younger, as a is.

Don't worry about her changing IF you decide to band her, honestly ,

it's very very very rare for a DOCband baby to be upset.

> 8. Should we get a second opinion?

A) Sure, if you'd feel more comfortable, 2nd opinions never hurt!

Do you live near a Cranial Tech? If so, they do offer free (most

clinics, double check though) consultations. Cranial Tech will be

completely honest with you , they won't just tell you she needs a

band if they don't feel she does, they don't " sell " their product

unless they feel it's necessary.

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

for

> this?

A) What insurance do you have?

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

> here say 23 hours a day.

A) Yes, 23 hrs a day, they recommend this to get the maximum amt of

correction possible. Babies heads are constantly growing, you don't

want to miss out on any available growth time.

> 11. What else can we do?

A) Again you can try repositioning.

>

>

For more helpful information go to www.plagiocephaly.org/support -

there's loads of GREAT plagio info on this site, from repositoning,

to helmets/bands to decorating tips.

Also visit www.cranialtech.com for DOCband information.

These sights will help you a lot!

Good luck - I'm sorry you're so upset, but honestly, a would be

just fine IF you band her!

Debbie Abby's mom 3/1/00 DOCGrad 2/16/01-6/22/01

Michigan

[Guest guest]

>>I have been a member of this group since 11/99<<

Correction! I've been a member since 11/00 - doh! Sorry!

Debbie Abby's mom

MI

[Guest guest]

Hi Matt and ,

Welcome to the group, you have definitely come to the right place!

First and foremost, you need to know that this was NOT your fault!

Repeat after me, 'This is not my fault.' One more time with

conviction, 'This is not my fault!' Unfortunately, a lot of

pediatricians and specialists aren't fully educated on plagio and

they dispense bad advice, such as what you were given. You did the

best that you could with the information at hand. I applaud you for

taking matters into your own hands now and doing all of this research.

The DOCband is a very effective device for treating plagio, and that

includes facial and ear assymetries. And with your daughter being as

young as she is, she should see correction faster than anticipated.

While it is true that the band is worn for 23 hours a day, most

babies don't even realize that they are wearing anything. The band

may look very bulky, but in fact it is very light.

For more information, including repositioning techniques, insurance

issues, torticollis, etc., there is a wonderfully informative

website. It should answer any other lingering questions that you

might have.

http://www.plagiocephaly.org/support

Good luck to you all, and please keep us up to date!

Niki

Kaylie & Danny (STAR grads)

Phila., PA