Re: need advice...facial asymmetry

[Guest guest]

Pam,

I am by no means an expert on the helmet. But I do know that Cranial Tech's studies show that there can still be improvement on heads up to two year of age (with treatment starting at least by the 18th month), of course 80% of cranial growth is in the first year. I would assume that you could continue helmet therapy a little longer. Or perhaps even look into cranial tech's doc band. Because of difficulties with a starband (we've had three) we just went to Phoenix to get a DOC band for our one year old daughter. I chose the DOC band because they are the only company to have published studies proving that their product does work. There is a wonderful medical study on their website about bands for older children.

While of course a neurosurgeon would know more than I about the subject of a child's head. I would take everything with a grain of salt. We had numerous physicians/surgeons suggest growing our daughters hair long or cosmetic surgery (not an option!). I believe the problem is that this is a relatively new problem and that these physicians see children whose problems are far more profound than our own. They believe a little facial asymmetry isn't so bad, the problem is it isn't their face!!

I have noticed that physicians in towns with no DOC clinic are hesitant to offer any suggestions other than let it round on it's own (which doesn't happen after the third month). Yet physicians in cities with DOC clinics who are familiar with the band and it's positive effects are quick to prescribe it.

At 8.5 months, I believe you've got plenty of time for your son and are in great shape. I'm not sure where your located, but my suggestion to you would be to seek a second opinion, no matter how comfortable you are with your doctor. I would go to the cranial tech website and see if there is a doctor on there site close to you. The doctors listed there are very familiar with plagio and will be more knowledgeable than I.

Good luck,

, Mom to

12 months (3 days in doc band) a few grueling months in a starband

Memphis

[Guest guest]

Pam,

I would discuss with the orthotist if it would be possible to go a little

longer if the helmet is still fitting properly. We didn't start our daughter

in the helmet until she was 9 months old and she wore it until she was 15

months old. So, correction can happen after 9 months of age! I do have to say

that still does have some facial and ear assymetry even after finishing

treatment. It is not noticable to anyone but us and we have come to terms

with it. Sometimes I very much regret that I didn't push the ped to refer us

when I first noticed the problem at 4 months, but I know that I can't live in

the past. My orthotist suggested that some of the ear and facial assymetry

will continue to improve (slowly) over time as the skull lays down more bone

and as she continues to grow taller.

I hope this helps. I really understand the very hard decision that lays

before you, but you will do what is right for your baby and your situation.

It is VERY unfortunate that you have not had the support you deserve from

your daycare and friends/family. Please know that everyone here understand

and supports your decision - you are doing a very good thing!!

Let us know what you decide!

Marci (Mom to )

Oklahoma

[Guest guest]

In a message dated 05/18/2001 9:31:59 AM Central Daylight Time,

pigbroker@... writes:

<< I have noticed that physicians in towns with no DOC clinic are hesitant to

offer any suggestions other than let it round on it's own (which doesn't

happen after the third month). Yet physicians in cities with DOC clinics

who

are familiar with the band and it's positive effects are quick to prescribe

it. >>

I just have to make a side note regarding this. It is unfortunate that there

seems to be a lack of education on plagio amongst peds all over the country -

even in DOC clinic areas. On the flip side, even in states where there are no

DOC clinics within the entire state there are some AWESOME specialists and

orthotists who have tons of experience with the diagnosis and treatment of

plagio. I live in Oklahoma where there is no DOC clinic, but we have some

really, really good orthotists who have tremendous experience and talent in

treating babies with locally made helmets and STARbands. These orthotists are

also making some very good headway in the area of research and study which we

all know is so very vital. The DOCband is an AWESOME product and has really

saved the day for a whole bunch of babies. Kudos to CT for that!!! CT has

also promoted the study of and treatment of plagio and that is something we

desperately need. However, the locally made helmets and STARbands have done

the same in lots of instances. They can be (notice I did not say they WILL

be) great alternatives when long distance travel and added expense are simply

not an option.

I would totally agree that more education is needed, but I just wanted to

give three cheers for all the outstanding orthos and specialist in all areas

(DOC, STAR and helmets) who give their all to help our babies and promote

awareness across the US and abroad.

Marci (Mom to )

Oklahoma

[Guest guest]

Marci is of course right. The STARband and helmets are also wonderful, in the

hands of the right orthodist. There are so many wonderful and educated

professionals out there; the key is to find them. On retrospect I wish I'd had

asked our orthodist how many helmets they had done. I know that if I had found

out none, I would have hunted for a more knowledgeable orthodist. Our problem

was not with the STARband but with our orthodist. If you are not near a DOC

clinic and traveling to one is too arduous your best bet (perhaps only bet) is a

STARband or locally made helmet.

The moral of this story, interview the prospective orthodist. Ask what they

plan to use and how many they & #8217;ve done!

[Guest guest]

Pam- Welcome and glad you have been around awhile so you have seen a lot I am sure. A lot of parents have had luck with correcting or atleast improving the asymmetry with the helmet therapy-but I think you got good advice and don't use the mirror as a guide. Do you have before pictures? You may want to take some now and then compare them that way and head on. We have had improvement with our asymmetry and is 5 months old now. I don't believe you should have to stop Helmet therapy at 9 months-we have had many parents start later than that and the head is still growing so you may want to re-question your neuro and ortho about that. Continuing therapy might be the trick to getting the asymmetry corrected or atleast improved.

Click here: Plagiocephaly Information Center - Cranial Technologies, Inc.

although not the star band here is a link with a lot of articles and information that you may be able to use as support with your DR's to continue. Talk to your ortho though and see how much experience they have had with helmet therapy and maybe he/she just needs a little guidance. We have had a lot of success stories with the Star band and a lot of ortho's who have been receptive to learning all they can and that might be the trick. Please let us know how it goes and what happens from here and stick around. Your experience will surely help other mommies out there. Welcome and you are doing a great job!

Beck Mom to banded 3,26,01

Memphis, TN

[Guest guest]

PS Pam-you are a good Mom who is doing the right thing for your child. Those that have given yo negative comments just disregard them-you are doing the most you can to save your little one troubles later and be at Peace with that. Those in my life who felt we should just let it go- I gave them some articles on what could happen if we didn't treat and let it go at that. Although the peer issue is a big one there are a lot of medical complications that could result as well. You are a great Mom and if you follow your heart you are doing what is right. No one knows our children like we do. SO you keep plugging along and do what you know is best and everything will be fine and to heck with all of the rest of them.

Beck Mom to banded 3.26.01

Memphis, TN

[Guest guest]

I couldn't agree more - the orthotist is the key!!!

Marci

[Guest guest]

Pam, I was told that there would be no improvement

with the asymmetry once band therapy has been

completed. That was the reason we went with band # 2

for my daughter. Her head rounded out nicely but she

had one fuller cheek. My daughter started treatment

at 6.5 months and will be 10 months at the end of this

month. Good luck.

B., Charlotte

--- psmiller@... wrote:

> I have been lurking here for three months, but have

> never posted. I

> now need some advice/reassurance.

> Here is some background info. My son is in a

> locally made helmet.

> Started at 6.5 months of age and has been in it for

> 2 months. We

> only see a neurosurgeon once a month for a check,

> and have only been

> back to the ortho once when an adjustment was

> necessary...no regular

> adjustments. My son's plagio was mild-moderate when

> we started

> treatment. The neurosurgeon told us that my son

> only needs to wear

> the helmet for another month since the skull hardens

> at around 9

> months of age.

> OK, here is my concern. My son's skull has rounded

> out nicely in the

> back/side, but not up front. He still has facial

> asymmetry. It is

> not noticeable to those who don't know it is there

> unless you see it

> through a mirror...very clear then. We decided to

> do the helmet

> therapy mostly for his face and ear alignment. We

> worry about his

> self-esteem when he gets older. I know that we

> still have another

> month in the helmet, but the neurosurgeon didn't

> give us much hope

> for facial improvement during that time. He did say

> that we could opt

> for surgery, but I won't consider that as an option.

>

> Does anyone know if facial anomalies improve with

> time after helmet

> treatment is complete? This has been a very trying

> time on me. My

> husband and I have received a lot of negative

> feedback during the

> past two months for putting him in the helmet...from

> daycare and even

> friends/family. I have since removed him from the

> daycare

> center...he now has a babysitter that is familiar

> with the helmet. I

> will be relieved when this is all over, but I can't

> help wondering.

> Should I push for more time in the helmet? Will

> that help? Am I

> wanting too much? Any comments will be appreciated.

> - Pam

>

>

>

__________________________________________________

[Guest guest]

Pam,

I could not add anything more to jennifer's post; I agree whole heartedly

with her. My son didn't get his band until 10 1/2 months and after

two weeks a see a slight change in the back of his head and his forehead.

If you are willing to continue treatment it is well worth a little bit

more research. I know all of the differing opinions from doctors

is frustrating but follow your heart and you'll be fine. No matter

what your decision, you'll get support here. Take Care,

Corey's mommy (DOC banded 5/4/01)

pigbroker@... wrote:

Pam,

I am by no means an expert

on the helmet. But I do know that Cranial Tech's

studies show that there

can still be improvement on heads up to two year of

age (with treatment starting

at least by the 18th month), of course 80% of

cranial growth is in the

first year. I would assume that you could continue

helmet therapy a little

longer. Or perhaps even look into cranial tech's doc

band. Because of difficulties

with a starband (we've had three) we just went

to Phoenix to get a DOC

band for our one year old daughter. I chose the DOC

band because they are the

only company to have published studies proving that

their product does work.

There is a wonderful medical study on their website

about bands for older children.

While of course a neurosurgeon

would know more than I about the subject of a

child's head. I would

take everything with a grain of salt. We had numerous

physicians/surgeons suggest

growing our daughters hair long or cosmetic

surgery (not an option!).

I believe the problem is that this is a relatively

new problem and that these

physicians see children whose problems are far

more profound than our own.

They believe a little facial asymmetry isn't so

bad, the problem is it isn't

their face!!

I have noticed that physicians

in towns with no DOC clinic are hesitant to

offer any suggestions other

than let it round on it's own (which doesn't

happen after the third month).

Yet physicians in cities with DOC clinics who

are familiar with the band

and it's positive effects are quick to prescribe

it.

At 8.5 months, I believe

you've got plenty of time for your son and are in

great shape. I'm not

sure where your located, but my suggestion to you would

be to seek a second opinion,

no matter how comfortable you are with your

doctor. I would go

to the cranial tech website and see if there is a doctor

on there site close to you.

The doctors listed there are very familiar with

plagio and will be more

knowledgeable than I.

Good luck,

, Mom to

12 months (3 days in doc

band) a few grueling months in a starband

Memphis

For more plagio info

[Guest guest]

Pam, Welcome to the group. Where are you from? Belinda(Indiana)

[Guest guest]

Belinda,

I'm from southern Indiana, near Louisville, Ky.

> Pam, Welcome to the group. Where are you from? Belinda(Indiana)