Lots of Questions

[Guest guest]

My daughter is almost 9 mos old and has a flattened head since

birth. I've always noticed that she has had a tendancy to turn to

the left since the very beginning. To me, she looks crooked when she

is sitting up. Developmentally she seems fine. I pointed it out to

our pediatrician and even showed him where I thought her ear looked a

little deformed. He just wrote me off and said " that's the way she

came down the production line. " So I let it go at that. Her ear no

longer looks deformed, but her head still does. We've been

repositioning her, but cannot tell if it's really helping. She will

now turn to her right to fall asleep, but will turn back to her left

in the middle of the night. Every time I take her to the doctor, he

says she'll grow out of it. I mentioned that I had heard about the

helmut, and he told me she didn't need it and that his neurological

buddies don't think it helps and can cause more damage than good. So

again, I let it go. But still, in the back of my mind I feel like I

should do something. I ran across this message board today by

accident so here I am. . .

Any advice on what to do next? What type of doctor should I look

for? Should I really be worried? What are the long term effects if

I don't do anything? Will she grow out of it? Is it too late to do

anything? Do the helmuts really work (especially now that she is

older)? What " damage " could the helmut cause, if any? Any advice is

appreciated. Thanks. Janette Haas

[Guest guest]

I agree it looks like you need to find another peds doctor that will be understanding about your concerns. My son had another condition called craniosynostosis and alot of peds doctors blow that off the same way and those children need surgery. It seems to me the next thing you need is to go to a neurosurgeon and they will either know just from looking at your child that she has plagiocephaly and will prescribe the DOC band.

You need to for sure talk to someone other then that doctor.

Pitchke

-----Original Message-----From: haaser@... [mailto:haaser@...]Sent: Sunday, August 20, 2000 9:12 PMPlagiocephalyegroupsSubject: Lots of Questions

My daughter is almost 9 mos old and has a flattened head since birth. I've always noticed that she has had a tendancy to turn to the left since the very beginning. To me, she looks crooked when she is sitting up. Developmentally she seems fine. I pointed it out to our pediatrician and even showed him where I thought her ear looked a little deformed. He just wrote me off and said "that's the way she came down the production line." So I let it go at that. Her ear no longer looks deformed, but her head still does. We've been repositioning her, but cannot tell if it's really helping. She will now turn to her right to fall asleep, but will turn back to her left in the middle of the night. Every time I take her to the doctor, he says she'll grow out of it. I mentioned that I had heard about the helmut, and he told me she didn't need it and that his neurological buddies don't think it helps and can cause more damage than good. So again, I let it go. But still, in the back of my mind I feel like I should do something. I ran across this message board today by accident so here I am. . . Any advice on what to do next? What type of doctor should I look for? Should I really be worried? What are the long term effects if I don't do anything? Will she grow out of it? Is it too late to do anything? Do the helmuts really work (especially now that she is older)? What "damage" could the helmut cause, if any? Any advice is appreciated. Thanks. Janette Haas

[Guest guest]

--- I

again, I let it go. But still, in the back of my mind I feel like I

> should do something. I ran across this message board today by

Follow your heart as a mother what you decide will be what is best

for your child.

> Any advice on what to do next? What type of doctor should I look

> for? Should I really be worried?

You are already worried, but if you accumulate all the information

possible and are comfortable with your decisions in the end then all

the worry was worth it. A little about my story. I was not

comfortable with my first ped. So I got a second opinion and

although he was not concerned, he did x-rays to rule out closed

sutures. Although the x-rays turned out good I wanted to know and do

more for my child. I compiled as much infor about repositioning and

physical therapy. Position you can check out www.snuglbuds.com.

Therapy gave me lots of strengthening exercises. Right now we are

happy with the improvements we have seen. So for the time being we

are not going to use the doc band/helmut. (Gunner is 5 1/2 months

old) If you would like you could go to the files under Gunner and

see how his head compares to your childs. Gunner has a very mild

case of Plagio on the front left side, and moderate on the back left

side.

What are the long term effects if

> I don't do anything? Will she grow out of it?

This could be very hard too know. It all depends on the paticular

child. The first 18 months is the most development, but I have been

told heads do change until 5 years of age. Since this started with

us 1 1/2 months ago, I have seen many friends and there kids had flat

and lopsided heads and knew nothing of this and there kids are fine

now. This is a very hard call to make and you have to be comfortable

with it. As I said earlier we are comfortable with not intervening

now with band or helmut, but we have the information if the

improvements do not keep arriving.

Is it too late to do

> anything? Do the helmuts really work (especially now that she is

> older)? What " damage " could the helmut cause, if any? Any advice

is

> appreciated. Thanks. Janette Haas

Best of luck to you, and please ask everyone here is wonderful.

(Gunner's Mommy)

[Guest guest]

Janette:

Tammy wrote a great message and I second her opinions. My son had the same

situation - looked to the right, got flat spot and shifted ears and our ped

said it would round out and if it didn't, his hair would cover it. Not good

enough answers for me!!

The Cranial Technologies people are wonderful to answer questions. You

might also call your local children's hospital and talk to someone in

pediatrics to see if there is a ped neurosurgeon or plastic surgeon who

works with plagio. started the DOC band when he was 7 1/2 months

old and we are still wearing it (he just turned 1). We have seen how much

growth slows as they reach 1 year of age (when the bones harden and growth

slows) so I would encourage you to seek treatment as soon as possible to

gain those precious weeks.

Take photos from above and behind to document how your child's head looks.

Also find a physical therapist who can help you work on stretching the neck

muscles. That needs to be fixed whether you get a band/helmet or not.

You are in the right place to ask questions...the people in this group are

great. Let us know what we can do to help. Most of us were in exactly the

same spot you are.

Sue

----- Original Message -----

From: <bailykuhn@...>

<Plagiocephalyegroups>

Sent: Sunday, August 20, 2000 11:02 PM

Subject: Re: Lots of Questions

> In a message dated 8/20/00 6:13:45 PM Pacific Daylight Time,

haaser@...

> writes:

>

> << Any advice on what to do next? What type of doctor should I look

> for? Should I really be worried? What are the long term effects if

> I don't do anything? Will she grow out of it? Is it too late to do

> anything? Do the helmuts really work (especially now that she is

> older)? What " damage " could the helmut cause, if any? Any advice is

> appreciated. Thanks. Janette Haas

> >>

> Janette - Welcome. I'll try and help with some of the questions.

>

> First check out torticolliskids. Here is also a web site to check out.

> <A HREF= " http://www.orthoseek.com/articles/congenmt.html " >Orthopaedic

> Articles | Torticollis, Congenital Muscular</A> My son was always looking

the

> same direction from birth on. His ear was also folded at birth. This

> condition is called torticollis. You should have physical therapy for

> torticollis and for some, like myself, difficult to get over that tilt.

We

> have full range of motion now but still have a tilt. My son is 8 1/2

months

> and has been tilt free 3 times. Frustrating. That is/can be the cause

for

> plagiocephaly.

>

> Here is the web site for the DOC Band. Go under doctors listing. <A

>

HREF= " http://ssdi.ancestry.families.aol.com/cgi-bin/sse.dll?TI=4300 & GSI=5518

05

> 02 & DB=SSDI & PROX=-1 & F3=KUHN & F4=DAVID & F15= & fh=10 " > </A>C<A

>

HREF= " http://search.aol.com/redirect.adp?appname=QBP & query=%60%9a%5d%68%46%3

a%

>

79%ed%06%bf%84%38%bd%52%26%d6%f1%93%fd%6e%b3%15%ab%c6%52%e7%88%1a%1d%05%e8%9

6%

>

b0%e6%14%a7%e8%7d%3b%5e%e2%cd%99%90%1c%a9%b6%c2%b4%16%49%b5%c8%1e%30%92%bb%7

2%

> 63%12%86%95%5c%8b%7b%b1%bc%47%5a%36%9d%18%92%c5%76%c7%77%93%c3%a1 " >ranial

> Technologies, Inc., Manufacturer of the DOC Band for Positional

Plagioc</A>

> Hopefully someone in the group can help you out with a doctor. Don't be

> afraid to call and ask questions. Find a local helmet maker or DOC Band

and

> call them to see who they recommend. Also call your insurance company too

> and find out services. Cranial facial specialist, plastic surgeon, ped

> neurologist, neurosurgeon are some of the doctors that can help you. We

saw

> a ped nuerologist and was able to help with the torticollis and

> plagiocephaly.

>

> There is a person Debby and , torticolliskids, who had tort and her

> daughter looked so much like my son. They didn't even know about helmet

> treatment and she looks perfectly normal today. She had one check

> smaller/facial asymmetry. She is one reason we opted not for a second

band

> at this time. We are also trying craniosacral therapy.

>

> I think DOC Band can be used up to 18 months??!! They like to start as

early

> as 4 months but the sooner the better. Rapid head growth is when younger

so

> you see results quicker. If older just may take longer. Depends on your

> child's growth. I really don't believe any damage can be done. It is so

> light weight and we had weekly adjustments, I just don't even believe in

any

> talk myself. My opinion.

>

> Well, I hope this helps and keep us posted.

>

> Tammy & 12/8/99

>

>

>

>

[Guest guest]

Hi :

According to the PS I've consulted with, if you're going to get explanted, you will need a mastopexy esp. if you have had implants for a long time--even if you have relatively small breasts. Otherwise, you'll look saggy (the degree varies on how long you were implanted and how large the breast).

Take care,

-Marie

[Guest guest]

Dr Huang is in Colorado in Denver, Dr Feng is in Ohio, they are both good

choices for explants. They are both expensive, but like I have said they are

good, they are both female, Dr Kolb is also female ps she is in Atlanta and

I hear good things about her, there is Dr Melmed in Texas too, and Dr

Barnett in Florida and Dr ROtatori in Florida, I have been hearing great

things about all these PS's lately. I have a dear friend who just went to Dr

Rotatori and is very happy with him. She didn't need a lift though.

The lift I had is a vertical lift, this is what Dr Feng specializes in, as I

was explained all this when I saw her, she did a great job and I know allot

of women who have used her. I had pretty big implants, but she had no

problems making me look normal again plus she is an angle, well worth the

travel and $$ for my health to be restored, so to me that was worht it.

I have heard good things about all the PS above mentioned.

I don't know of anyone still getting the anchor lifts anymore, every PS I

mentioned about does vertical lifts. Of course i am sure the situation may

arise that they need to do something different, but I was told by Feng that

the anchor lift is needless and leaves scar that are not necessary and that

are out of date.

yes I had swelliing in my finger joints which is completely gone, it took

almost a year and a half for many of my problems to go away but I am so

happy to say that they are compelety gone now, the only things I still get

is a back ache and I am not really even sure this is anything to do with

what I had from implants, all my other symptoms are pretty much gone, I

occasionally get fatigued but not much else, lately I am feeling great. Yu

can get better after implants, trust me I was as sick as they come.

Many women have the symptoms you are speaking about.

I am sorry that I cannot help yu with a PS in Iowa, I don't know of any,

hopefully you will find someone soon that can help you, the longer you keep

the implants, unfortuantly the longer you will have to deal with the

symptoms, but the good news is we do get better when we get them out, if it

is all done correctly, meaning capsule and implant are removed and then

detox and healing are done with natural methods if possible.

Hope this will be of help to you.

Love

----- Original Message -----

From: " pjzjf " <TFarley@...>

< >

Sent: Wednesday, April 17, 2002 9:39 PM

Subject: Lots of questions

> Hi Everyone,

> I had a few more questions and I was wandering if anyone could answer

> them for me.

> Where is Dr. Huang located?

> Does anyone know what he charges?

> For the women who did not need a lift- what size implants were they,

> and how long did they have them in? Just curious about what I may be

> looking at.

> Also, what are the different lifts available and how are they

> different from the other?

> Has anyone had a swollen hand that results in the finger bones

> deteriorating? Implant related????????

> Still hoping for a decent pc in Iowa. Any one know of any?

> Thanks for the help!

>

>

>

>

[Guest guest]

, Dr. Huang is a female, and she is located in Denver, CO. She is one of the world renowned ps' who perform the en bloc procedure for explantation. She did my explantation and did an excellent job. She is also very caring and concerned about female issues in general. I did not have a mastopexy (lift) and the total charge for my explant was $3500. That DID include general anesthesia, the OR, and PACU (recovery time). A woman I know who also had an explant done but with a lift was charged total $5000. Her fees may have increased since this was a year ago. As for the size implants I had, I had 300cc capacity implants. Both were overfilled. My breasts went from a A cup to a D--they were HUGE. When I saw my implanting surgeon, we picked out the implant which he and I thought would be best for my figure and body type. It appeared much smaller in his office than it actually turned out to be. I thought for sure I would need a mastopexy, but Dr. Huang was confident that I didn't. However, I did make her promise me that once she got the implants out, if my breasts looked real bad, she would do the lift, and she was very agreeable and amenable to that. My breasts look so much better without the implants, and while there is some sag to them, it is not as bad as I would think after having overfilled 300cc implants in place for 4.5 yrs. I wear underwire demi bras, (not padded or filled with water or gel or any of that crap), and that is enough to lift up my breasts and look "perky." And underwire demi bras are the only type of bras I have ever worn until I got the implants, then I needed full figure bras, which I hated. But Dr. Huang is excellent, although I know some women lately have had trouble with her responding. I'm not sure why but if you're in Denver, it shouldn't be a problem. I am from Denver and had no problem getting in to see her or getting in touch with her and she has always been very responsive to me. Sincerely, e, RN, BSN ----- Original Message ----- From: pjzjf Sent: Wednesday, April 17, 2002 8:44 PM Subject: Lots of questions Hi Everyone,I had a few more questions and I was wandering if anyone could answerthem for me.Where is Dr. Huang located?Does anyone know what he charges?For the women who did not need a lift- what size implants were they,and how long did they have them in? Just curious about what I may belooking at.Also, what are the different lifts available and how are theydifferent from the other?Has anyone had a swollen hand that results in the finger bonesdeteriorating? Implant related????????Still hoping for a decent pc in Iowa. Any one know of any? Thanks for the help!

[Guest guest]

Hi e,

Thanks for responding. OK, I can handle that type of fee! Colorado

is still a long ways from me but still might be worth looking into!

I think you are who I talked to about insurance before. I said I have BC/BC.

If you could refresh my memory on everything, I'd appreciate it.

The only problem is I don't know if any of my current dr's would say it

is medically necessary that I have these out!

It's unbelievable that you didn't have to have a lift! Had you

had any children prior to implants? I had one child before implants, and

one child with implants. Which means even my implants sag more now. (they

look more real now to) But I went from a small B to a small D. If I contacted

Huang, do you think she could send me some info? Thanks for the help.

e Rene wrote:

, Dr. Huang is a female, and she is

located in Denver, CO. She is one of the world renowned ps' who perform

the en bloc procedure for explantation. She did my explantation

and did an excellent job. She is also very caring and concerned about

female issues in general. I did not have a mastopexy (lift) and the

total charge for my explant was $3500. That DID include general anesthesia,

the OR, and PACU (recovery time). A woman I know who also had an

explant done but with a lift was charged total $5000. Her fees may

have increased since this was a year ago. As for the size implants

I had, I had 300cc capacity implants. Both were overfilled.

My breasts went from a A cup to a D--they were HUGE. When I saw my

implanting surgeon, we picked out the implant which he and I thought would

be best for my figure and body type. It appeared much smaller in

his office than it actually turned out to be. I thought for sure

I would need a mastopexy, but Dr. Huang was confident that I didn't.

However, I did make her promise me that once she got the implants out,

if my breasts looked real bad, she would do the lift, and she was very

agreeable and amenable to that. My breasts look so much better without

the implants, and while there is some sag to them, it is not as bad as

I would think after having overfilled 300cc implants in place for 4.5 yrs.

I wear underwire demi bras, (not padded or filled with water or gel or

any of that crap), and that is enough to lift up my breasts and look "perky."

And underwire demi bras are the only type of bras I have ever worn until

I got the implants, then I needed full figure bras, which I hated. But

Dr. Huang is excellent, although I know some women lately have had trouble

with her responding. I'm not sure why but if you're in Denver, it

shouldn't be a problem. I am from Denver and had no problem getting

in to see her or getting in touch with her and she has always been very

responsive to me. Sincerely,e, RN, BSN

----- Original Message -----

From:

pjzjf

Sent: Wednesday, April 17, 2002 8:44

PM

Subject: Lots of questions

Hi Everyone,

I had a few more questions and I was wandering if anyone could answer

them for me.

Where is Dr. Huang located?

Does anyone know what he charges?

For the women who did not need a lift- what size implants were they,

and how long did they have them in? Just curious about what I may be

looking at.

Also, what are the different lifts available and how are they

different from the other?

Has anyone had a swollen hand that results in the finger bones

deteriorating? Implant related????????

Still hoping for a decent pc in Iowa. Any one know of any?

Thanks for the help!