New member needs help/advice

[Guest guest]

Hi everyone:

I just joined the group the other day and am so happy to have found

you! I am so grateful for the wealth of information that I have

stumbled upon here and wish I knew about this group months ago.

I'll tell you our story and any help or advice any of you can provide

would be very much appreciated, since my husband and I are feeling

confused and frustrated.

Our son Miles will be 9 months old this week and was diagnosed with

Torticollis when he was 4 months old. We were also concerned that

his head was flat in the back (and particularly on the left side),

but our Dr. told us " not to worry, it will round out in time " . Since

then, our concern about the flattening has continued to grow, but our

Dr. keeps saying " it should round out " . When we went to Phys. Therapy

this past week we were told, to our dismay, that Miles is now approx.

3 months developmentally delayed. I brought up the topic of his head

being flat and she told us that his amt. of flattening is moderate.

I mentioned the possibility of helmet therapy, and even though she

sees many kids with tort/plagio, she said she has never referred one

to get a helmet! I find this very strange! In spite of that, at my

request she has referred us to an Orthotist who we will see this week.

Neither our Dr. or Phys. Therapist has ever said the words

" positional plagiocephaly " to us, which I don't understand since

Miles has moderate flattening. The Phys. Therapist even told me she

wouldn't worry about the flattening. Am I crazy?! I don't

think so - I'm trying to trust my " Mommy instincts " and do what I

think is right for our son. I feel like we've lost valuable time

and now I'm scrambling to make up for it. We're not really sure how

to proceed...should we be seeing a neurosurgeon? Should we get a

second opinion from another pediatrician? In addition, if anyone

lives in the Denver, CO area and knows of any valuable resources,

please let me know!

Thanks for listening!

-

[Guest guest]

1st-yes! trust your mommy insticnt always. my son as well as almost

everyone on here has been thru the doctors saying it will round out.

it hasnt for us (my son just started therapy a week ago at almost 11

months. ) my old pediatrician said he'd round out as soon as he

started sitting. not a chance-even though we tried waiting. we knew

early on that he was getting flatter and flatter but we trusted the

docs because after seeing several general docs that say the same

thing, you do start to think you are the crazy ones. BUT....as you see

on this site, there r many of us that wasted valuable time. i WOULD go

see a neuro to check it out like u said. it cant hurt, if your

insurance covers this. also, gather ur info and maybe print out some

info to bring with you. if you go to plagiocephaly.org , they have

lots of info there. they also have links to sites such as

cranialtech.com where you can show them before and after photos. there

r many options u have with helmets/bands. personally i think that if

we don't do anything to help our son now, we would be filled with

regret later. we were afraid of not only him being teased later, but

also of the possibility of vision problems/tmj/hearing etc... later.

i'm sure you will get lots of resposnes so just keep doing what u r

doing by researching and prepairing yourself for your appts. and trust

yourself. all the best-lisa

> Hi everyone:

> I just joined the group the other day and am so happy to have found

> you! I am so grateful for the wealth of information that I have

> stumbled upon here and wish I knew about this group months ago.

> I'll tell you our story and any help or advice any of you can

provide

> would be very much appreciated, since my husband and I are feeling

> confused and frustrated.

> Our son Miles will be 9 months old this week and was diagnosed with

> Torticollis when he was 4 months old. We were also concerned that

> his head was flat in the back (and particularly on the left side),

> but our Dr. told us " not to worry, it will round out in time " .

Since

> then, our concern about the flattening has continued to grow, but

our

> Dr. keeps saying " it should round out " . When we went to Phys.

Therapy

> this past week we were told, to our dismay, that Miles is now

approx.

> 3 months developmentally delayed. I brought up the topic of his head

> being flat and she told us that his amt. of flattening is moderate.

> I mentioned the possibility of helmet therapy, and even though she

> sees many kids with tort/plagio, she said she has never referred one

> to get a helmet! I find this very strange! In spite of that, at my

> request she has referred us to an Orthotist who we will see this

week.

> Neither our Dr. or Phys. Therapist has ever said the words

> " positional plagiocephaly " to us, which I don't understand since

> Miles has moderate flattening. The Phys. Therapist even told me she

> wouldn't worry about the flattening. Am I crazy?! I don't

> think so - I'm trying to trust my " Mommy instincts " and do what I

> think is right for our son. I feel like we've lost valuable time

> and now I'm scrambling to make up for it. We're not really sure how

> to proceed...should we be seeing a neurosurgeon? Should we get a

> second opinion from another pediatrician? In addition, if anyone

> lives in the Denver, CO area and knows of any valuable resources,

> please let me know!

> Thanks for listening!

> -

[Guest guest]

Hello,

Trust your instincts!!!!!!!! You are not crazy!!!!!!!! Bring the

info you can get off of the Caps site to them and if that dosn't work

you probably need to find a new Dr. The problem is that alot of Dr.'s

are not aware of anything more than Craniosynostosis and if that is

rulled out then they let it be. Hopefully you will be as lucky as

we were and your Dr. will be grateful to you for makeing him aware of

Plagiocephaly. Wishing you and yours well.

April

> Hi everyone:

> I just joined the group the other day and am so happy to have found

> you! I am so grateful for the wealth of information that I have

> stumbled upon here and wish I knew about this group months ago.

> I'll tell you our story and any help or advice any of you can

provide

> would be very much appreciated, since my husband and I are feeling

> confused and frustrated.

> Our son Miles will be 9 months old this week and was diagnosed with

> Torticollis when he was 4 months old. We were also concerned that

> his head was flat in the back (and particularly on the left side),

> but our Dr. told us " not to worry, it will round out in time " .

Since

> then, our concern about the flattening has continued to grow, but

our

> Dr. keeps saying " it should round out " . When we went to Phys.

Therapy

> this past week we were told, to our dismay, that Miles is now

approx.

> 3 months developmentally delayed. I brought up the topic of his head

> being flat and she told us that his amt. of flattening is moderate.

> I mentioned the possibility of helmet therapy, and even though she

> sees many kids with tort/plagio, she said she has never referred one

> to get a helmet! I find this very strange! In spite of that, at my

> request she has referred us to an Orthotist who we will see this

week.

> Neither our Dr. or Phys. Therapist has ever said the words

> " positional plagiocephaly " to us, which I don't understand since

> Miles has moderate flattening. The Phys. Therapist even told me she

> wouldn't worry about the flattening. Am I crazy?! I don't

> think so - I'm trying to trust my " Mommy instincts " and do what I

> think is right for our son. I feel like we've lost valuable time

> and now I'm scrambling to make up for it. We're not really sure how

> to proceed...should we be seeing a neurosurgeon? Should we get a

> second opinion from another pediatrician? In addition, if anyone

> lives in the Denver, CO area and knows of any valuable resources,

> please let me know!

> Thanks for listening!

> -

[Guest guest]

In a message dated 3/17/01 6:34:37 AM Pacific Standard Time, kberquist@... writes:

When we went to Phys. Therapy this past week we were told, to our dismay, that Miles is now approx. 3 months developmentally delayed. I brought up the topic of his head being flat and she told us that his amt. of flattening is moderate.

- It isn't uncommon for kids with tort to be behind in gross motor skills. Miles will get caught up in time. Are you seeing any periods of none tilt! It will come and go most likely until walking or shortly after.

Join torticolliskids in groups too! Many are in both!

If you want to treat Miles, just insist. It is every parents right to make that decision. You can see a pediatric neurologist, neurosurgeon, cranial facial, plastic or others. Hopefully a member in your area can recommend someone to you and a place of treatment.

[Guest guest]

,

Welcome - I'm glad you found us! You should try to see a specialist possibly

before you see the orthotist. It is kind of unusual to see the orthotist

before the specialist. You could see a neurosurgeon or a plastic surgoen.

They are usually the ones who have to right the prescription for the band or

helmet and then refer you to an orthotist. Soooo many of us have heard those

infamous words, " it will round out on its own " and that was NOT the case. I

would push to see a specialist as soon as possible. 9 months is not too late,

but the sooner the better. The improvement slows down as the child gets older

because growth spurts become fewer and further apart. The word positional

plagio never came up with my ped either, I first heard it from the neuro.

I hope you will stick with us and let us know what you decide to do and keep

us posted as you go through this experience. You will find that this group is

an AWESOME source of support and answers to any and all questions you might

have! Welcome!!

Marci (Mom to )

Oklahoma