Re: Scared Mom wants to know...

[Guest guest]

, I am so sorry to hear that your peds doctor did nothing. Mine did the same thing, and that she told me that it would round out on its own, until finally I demanded that something be done. But that is when Jeffry was 7 months old. I am really sorry that it was not done earlier, but hopefully someone on this board who has an older child will help you with your questions about helmets with older children. Please keep us posted. Heidi, mom to Jeffry, local helmet #3, MN Scared Mom wants to know... Are there many known cases of successful band treatment after 13 months of age? I am calling a pediatric neurosurgeon tomorrow to make our first appt. My daughter turns 13-months-old next week and I believe she has mild plagiocephaly or moderate Brachycephaly. Either way, the back of her head is flat, tall and wide. I’m just now making this call because (at 4 and then 6 months of age) my pediatrician told me that my daughter’s head would correct itself over time. He didn’t give me any information on repositioning techniques, although I kind of figured it out on my own. He didn’t offer to give me a referral to a neurosurgeon or provide any information what-so-ever. He told me to relax, not to worry. He made me feel like my concerns were really uncalled for. He said that it would correct itself in the next few months. Besides, she’ll grow hair, so it’s no big deal. Lately, family members and close friends have commented on the flatness of her head. It’s clearly obvious to those around us. I feel like a failure trusting our pediatrician and not acting on this sooner. Now I read on the Internet that I’m addressing this at a late stage. Can treatment even be successful at this point? If you know of success stories for infants over 1-year, I’d greatly appreciate reading about them. Thank you for the support group and the chance to ask my question. LNorwicke Colorado For more plagio info

[Guest guest]

Hi ,

You should not feel bad about trusting what your ped told you. I know exactly

how you feel. I still remember my EXACT words to my ped when he told me not to

worry that it would correct itself and she would grow hair. I said, " Okay, I

trust you. I'm not going to worry about it. " Those words echo through my mind

everytime I see a doctor for anything. Never will I blindly trust again. The

good news is that babies can get correction at 13 months. We have many parents

of older babies that started after 12 months and got good correction. I see you

have already received links to Cranial Tech and Orthomerica. At this later age

a DOC or STARband would be the way to go as opposed to a passive locally made

helmet. If you tell us where you are from maybe someone in the group can

recommend a ortho and specialist nearby.

Don't feel like you have done anything wrong - you haven't. We are trained to

believe and trust our doctors - they should be educating parents and being

proactive about plagio and most simply are not. You are working on it now and

you can focus on that and move forward. Everything is going to be okay. I'm glad

you have joined us.

Marci (Mom to )

Oklahoma

[Guest guest]

Thank you for responding. I’m desperate

to talk to someone in my area. I live in Colorado Springs CO. My name is ,

my husband’s name is Glenn and my daughter’s name is Regan. I made

an appointment with a neurosurgeon, Dr. Winston, in Denver. The earliest I can meet

with him is Nov. 20. The receptionist/nurse that took my appointment told me

that their office doesn’t practice using helmets or bands. She said they

don’t believe in them… they only do surgery. I have no idea who

else to call. I would greatly appreciate talking to anyone in my state that can

give me some guidance. Thanks!

Norwicke

7430 Delmonico Drive

Colorado Springs, CO

80919

(719) 599-0215

Re: Scared Mom

wants to know...

Hi ,

You should not feel bad about trusting what your

ped told you. I know exactly how you feel. I still remember my EXACT words to

my ped when he told me not to worry that it would correct itself and she would

grow hair. I said, " Okay, I trust you. I'm not going to worry about

it. " Those words echo through my mind everytime I see a doctor for

anything. Never will I blindly trust again. The good news is that babies can

get correction at 13 months. We have many parents of older babies that started

after 12 months and got good correction. I see you have already received links

to Cranial Tech and Orthomerica. At this later age a DOC or STARband

would be the way to go as opposed to a passive locally made helmet. If you tell

us where you are from maybe someone in the group can recommend a ortho and

specialist nearby.

Don't feel like you have done anything wrong - you

haven't. We are trained to believe and trust our doctors - they should be

educating parents and being proactive about plagio and most simply are not. You

are working on it now and you can focus on that and move forward. Everything is

going to be okay. I'm glad you have joined us.

Marci (Mom to )

Oklahoma

For more plagio info, go to

www.plagiocephaly.org/support

[Guest guest]

I see you live in Oklahoma. Where did go to receive

treatment? Where is the closest ortho or specialist to you?

Norwicke

7430 Delmonico Drive

Colorado Springs, CO

80919

(719) 599-0215

Re: Scared Mom

wants to know...

Hi ,

You should not feel bad about trusting what your

ped told you. I know exactly how you feel. I still remember my EXACT words to

my ped when he told me not to worry that it would correct itself and she would

grow hair. I said, " Okay, I trust you. I'm not going to worry about

it. " Those words echo through my mind everytime I see a doctor for

anything. Never will I blindly trust again. The good news is that babies can

get correction at 13 months. We have many parents of older babies that started

after 12 months and got good correction. I see you have already received links

to Cranial Tech and Orthomerica. At this later age a DOC or STARband

would be the way to go as opposed to a passive locally made helmet. If you tell

us where you are from maybe someone in the group can recommend a ortho and

specialist nearby.

Don't feel like you have done anything wrong - you

haven't. We are trained to believe and trust our doctors - they should be

educating parents and being proactive about plagio and most simply are not. You

are working on it now and you can focus on that and move forward. Everything is

going to be okay. I'm glad you have joined us.

Marci (Mom to )

Oklahoma

For more plagio info, go to

www.plagiocephaly.org/support

[Guest guest]

There is a guy in Oklahoma City that is excellent. He works for the University

Hospital and does nice work. He makes the STARband. If you want more information

on him let me know.

Marci (Mom to )

Oklahoma

[Guest guest]

Marci,

Thanks again for your help. You mentioned Orthomerica,

Inc., and I went to their web site. They have a rep/specialist in Lafayette, CO, which is a couple of

hours north of our home. I left his assistant a message to call me back to make

an appointment.

Is anyone in the group familiar with Greg Smits

of CO pediatric OMP? He fits the Starband?

My nerves are a little calmer knowing

there is someone nearby. I could even probably drive to/from Oklahoma City, if I had to. At this

very early stage, it seems crazy to have to fly somewhere. I have a lot of

research ahead of me!

Again, Thank you so much for your help!

Norwicke

7430 Delmonico Drive

Colorado Springs, CO 80919

(719) 599-0215

RE: Scared Mom

wants to know...

There is a guy in Oklahoma City that is excellent. He

works for the University Hospital and does nice work. He makes the STARband. If

you want more information on him let me know.

Marci (Mom to )

Oklahoma

For more plagio info, go to

www.plagiocephaly.org/support

[Guest guest]

,

I think we have had at least one member from Colorado in the group in the past.

I couldn't get back very far in the archives (it doesn't seem to be working

right for me) so I couldn't check to find that person's name. I remember that

she couldn't find helmet treatment for her child in Colorado either. There are

services that will provide free flights for people seeking medical treatment.

Several people in the group have used this service and I'm sure Beck could

provide you the link. I would be very leary of the doctor that only uses surgery

to correct plagio. This should be a very, very, very last option and is usually

only used to correct craniosynostosis which is a condition caused by the

premature fusing of the bones in the head. I wish I had some names to offer you

in Colorado, but I've checked everywhere I know to check - anyone else have any

luck? In the meanwhile we all know what you are going through to one degree or

another and you will find nothing but support and encouragement here. Hang in

there.

Marci (Mom to )

oklahoma

[Guest guest]

,

You are going to be so tired of hearing from me! I'm glad you found someone that

might be able to help you with a STARband. I'm keeping my fingers crossed for

you. The key here is that you are going to need an RX for the band from a

doctor. If the specialist doesn't belive in helmets/bands then he might not be

willing to give you the RX. Can you try and get one from your ped? You could

still go and see the specialist and get his opinion, but be aware that some

specialists are VERY anti-band. When you get ahold of the ortho you might want

to be prepared with some questions - there is a good listing of " questions to

ask the ortho " at www.plagiocephaly.org/support. You might check that out. You

want to be sure that the ortho has a great deal of experience with the STARband

and has treated many plagio babies successfully. If he/she has not then you may

wish to shop around. The STARband in the hands of a good ortho is very

effective. In the hands of an inexperienced ortho it can actually do more harm

then good. Just ask lots of questions.

Let us know when you hear back from the ortho. Oh by the way - maybe the ortho

can recommend a band friendly specialist.

Marci (mom to )

Oklahoma

[Guest guest]

Thanks for searching Marci! I have

found an orthotist in Denver that fits the Starband and I’m meeting with him Thursday. He

has worked on 15-20 cases including a member. Connie Lang was happy with him. Monday

I’m going to check with Orthomerica to find out if there are other reps

in Colorado too.

Cranio Tech seems impressive, so I’ll

definitely check out the flight link as well. Although my assumption is that

you have to be within a certain income bracket to actually use it. Maybe I’m

wrong. Flying to/from AZ sounds so expensive! However, Cranio Tech says their

bands work up to 24 months whereas Orthomerica says 18 months. I wonder why?

The Denver pediatric neurosurgeons are anti-band, so I doubt they would be of

much use to me. They’d probably just turn me away. Plus they can’t

see me ‘til end of November. Regan is already almost 13 months.

Norwicke

7430 Delmonico Drive

Colorado Springs, CO 80919

(719) 599-0215

RE: Scared Mom

wants to know...

,

I think we have had at least one member from

Colorado in the group in the past. I couldn't get back very far in the archives

(it doesn't seem to be working right for me) so I couldn't check to find that

person's name. I remember that she couldn't find helmet treatment for her child

in Colorado either. There are services that will provide free flights for

people seeking medical treatment. Several people in the group have used this

service and I'm sure Beck could provide you the link. I would be very leary of

the doctor that only uses surgery to correct plagio. This should be a very,

very, very last option and is usually only used to correct craniosynostosis

which is a condition caused by the premature fusing of the bones in the head. I

wish I had some names to offer you in Colorado, but I've checked everywhere I

know to check - anyone else have any luck? In the meanwhile we all know what

you are going through to one degree or another and you will find nothing but

support and encouragement here. Hang in there.

Marci (Mom to )

oklahoma

For more plagio info, go to

www.plagiocephaly.org/support