Waiting?

[Guest guest]

Amy,

Your situation is SO similar to mine- that it is killing me so bad to write

to you ASAP!! My son was dx with tort at 8 weeks- developed plagio inutero

as well- but the tort aggravated the situation and it is virtually impossible

in my opinion to keep those tort kids off that flat spot- they can't help it-

their necks are so tight its forcing them that way! I was so fortunate to

find this group, that I was way ahead of my Docs in knowledge by the time we

went for his 4 month check up. I secretly went to Cranial Tech also and got

their eval (really went at 3 months and they said try to reposition for a

month to exhaust that route). Well, obviously it didn't work. I addressed

this with ' ped and she said on his misaligned ears, " its an optical

illusion because of the tort " " she's seen worse " - ok- I left. I knew this

was not correct, I analyzed that kid more than the 5 min. she took to examine

him. I called the next day and demanded for the referall for the helmet and

he was in it a week shy of 5 months. I urge you to take your Doctor up on

that offer now, while time is still on your side. if you wait, you will have

regrets, trust me! I really don't believe that repositioning can " fix " what

has already been done. It may help it in terms of not progressively getting

worse, but I don't feel that repositioning alone would have shifted my son's

ears back or fixed the facial asymmetry. I would look in the mirror and see

that smaller eye, the fuller cheek, etc. My husband was not online everyday

talking to other Moms and Dads that had been there done that- and I am so

grateful that I educated myself and used this great board as a tool in

helping my son early. He was in it for 3 months, it flew by! He has no

facial asymmetry to notice, and his ears are in alignment (one used to look

like it was sliding off his head!), although one is just smaller anyway. My

ped know thinks we made the right decision!!!! I cannot tell you how many

times she has commented on how great his head looks and everything else! I

could strangle her for the plagio, but kiss her for dx the tort so early.

Please use this opportunity to do this - you will be so happy you did! It

was a hard decision to make (looking back I think why?) to band- but once we

made it, we were so at peace with it and it really, really helped my son

immensely. If I had listened to my Doctor, perhaps I would be one of the

moms saying, we waited until 11 months, and got less correction because the

Doctor said it would work itself out! I was so stressed because I felt like

the Coach of our team, I would bring the play by play back to my husband, and

he would be just as uncertain as to whether this was the right decision. He

ultimately left it up to me as I was so researched on the topic. Educate

yourself, learn from everyone here, and make your decision based on YOUR gut

instincts- I'm sure others will tell you just how badly their Docs let them

down. Good luck! Please keep us posted and feel free to email me anytime!

' Mom

[Guest guest]

Amy, Hi. I agree with . I would get the helmet. I don't know why these

Dr.s are so bent on waiting when help is available now. Since you don't know

if waiting will help then why not do something you know will help. We didn't

see a neurosurgeon til after our Jessie was in the helmet. The PT who

measured Jessie said she was off 21 mm. and considered her severe. The

neurosurgeon looked at her and said she was mild to moderate, told us she had

a " windswept appearance " and said if we had come to him first he 's not sure

he would have recommended the helmet. He said he only recommends helmets for

severe cases. I don't get that at all. He might think windswept is ok for an

appearance. My husband and I don't. We also asked the neurosurgeon if he

wouldn't have recommended the helmet, then what would he have recommended? He

said other forms of therapy. We asked what those other forms of therapy were.

He said waiting for it to round out and he also felt repositionong would

still help. His answer reinforced our confidence in our decision to put our

daughter in the helmet. Our Jessie was also getting comments from strangers.

A little girl in my daughter's 4th grade class said innocently " Your little

sister has a flat head in back " . I wish I would have known about tort and

plagio earlier so I could have acted sooner. Pray with your husband for the

right decision. You will get your answer. Theresa (Jessie's mom) DOC band

2-16-02

[Guest guest]

Amy,

I am so glad to hear that! Your Mom is a smart woman too! You have

everything to gain and nothing to lose. As for the $3000- if you have

insurance- ask CT if yours if covered there or if they have problems getting

that type to pay. There are lots of parents here that can advise you as to

the appeal process also. It may not be up your alley, but some parents have

also had auctions or charity events to raise money. I think that is a great

idea (softball tournaments, bowling, golf, etc.)- you never know! Good luck!

You will sleep better tonight just knowing that this problem will be

resolved over the coming months. Tell CT that torticollis is also involved,

and make sure your getting professional pt or doing stretches at home, please

email me for more info if you need it!

All the best,

' Mom (tort resolved, DOC grad)

[Guest guest]

Amy,

If it were my child I would not wait. If you've already been repositioning

for over a month with little progress then I would not wait another day. Six

months is still in the ideal range, but much past that the correction is

slower and less complete. Not to say that you couldn't still get some good

correction later, but the earlier the better. This is, of course, my own

personal opinion.

Good luck and let us know how it goes.

Marci (Mom to )

Oklahoma

[Guest guest]

hi. emma and i had our appointment with the pediatric neurosurgeon at

Duke's children's hospital yesterday. he said her plagio was

" moderate, " but at this time he just recommended repositioning. he

wants us to come back in one month to see if the repositioning

improves her condition. emma is already six months old, and we have

been repositioning ever since i initially made the appointment with

the neurosurgeon 6 weeks ago. her tort is improving, but she still

favors sleeping with her head turned to the right. i can put her to

sleep one way, but she moves during the night.

what are people's thoughts on waiting another month? the doctor said

he would write us a prescription for the helmet, if that's what we

really wanted, but he didn't recommend it at this time. i keep reading

that the longer you wait, the less full correction is possible. my

husband does not want to do the helmet, but i would never forgive

myself if we did nothing and then she never improved. her ears are

really misaligned and her forehead is higher on one side. i had her in

the baby bjorn the other day, and some woman in line commented that

one of her cheeks was much bigger than the other - so i know i'm not

the obsessed mom my husband seems to think i am. other people can see

it too.

i'd appreciate any feedback.

thanks!

amy

mom to emma (born 9/24/01)

[Guest guest]

thank you cindy. i just got off the phone with my mom, who had called

to check on emma's appointment with the neurosurgeon yesterday. i told

her about all the great feedback i've been getting from this group,

and the fact that i've been agonizing over whether to wait a month or

not. and she put it to me pretty clearly. she asked, " can the helmet

make things worse? what is the disadvantage to getting it? " as far as

i can tell, the only thing that can hurt by getting emma banded is the

fact that it cost $3,000. which, of course, we do not have. my mom

also told me to go with my gut instinct, and she understood that i

would never forgive myself if i waited to do something until it was

too late. i'm going to call cranial tech for an evaluation and also

call the neurosurgeon and see if he will send me the script.

i'm so glad i found this group!

amy

> Amy,

> Your situation is SO similar to mine- that it is killing me so bad

to write

> to you ASAP!! My son was dx with tort at 8 weeks- developed plagio

inutero

> as well- but the tort aggravated the situation and it is virtually

impossible

> in my opinion to keep those tort kids off that flat spot- they can't

help it-

> their necks are so tight its forcing them that way! I was so

fortunate to

> find this group, that I was way ahead of my Docs in knowledge by the

time we

> went for his 4 month check up. I secretly went to Cranial Tech also

and got

> their eval (really went at 3 months and they said try to reposition

for a

> month to exhaust that route). Well, obviously it didn't work. I

addressed

> this with ' ped and she said on his misaligned ears, " its an

optical

> illusion because of the tort " " she's seen worse " - ok- I left. I

knew this

> was not correct, I analyzed that kid more than the 5 min. she took

to examine

> him. I called the next day and demanded for the referall for the

helmet and

> he was in it a week shy of 5 months. I urge you to take your Doctor

up on

> that offer now, while time is still on your side. if you wait, you

will have

> regrets, trust me! I really don't believe that repositioning can

" fix " what

> has already been done. It may help it in terms of not progressively

getting

> worse, but I don't feel that repositioning alone would have shifted

my son's

> ears back or fixed the facial asymmetry. I would look in the mirror

and see

> that smaller eye, the fuller cheek, etc. My husband was not online

everyday

> talking to other Moms and Dads that had been there done that- and I

am so

> grateful that I educated myself and used this great board as a tool

in

> helping my son early. He was in it for 3 months, it flew by! He

has no

> facial asymmetry to notice, and his ears are in alignment (one used

to look

> like it was sliding off his head!), although one is just smaller

anyway. My

> ped know thinks we made the right decision!!!! I cannot tell you

how many

> times she has commented on how great his head looks and everything

else! I

> could strangle her for the plagio, but kiss her for dx the tort so

early.

> Please use this opportunity to do this - you will be so happy you

did! It

> was a hard decision to make (looking back I think why?) to band- but

once we

> made it, we were so at peace with it and it really, really helped my

son

> immensely. If I had listened to my Doctor, perhaps I would be one

of the

> moms saying, we waited until 11 months, and got less correction

because the

> Doctor said it would work itself out! I was so stressed because I

felt like

> the Coach of our team, I would bring the play by play back to my

husband, and

> he would be just as uncertain as to whether this was the right

decision. He

> ultimately left it up to me as I was so researched on the topic.

Educate

> yourself, learn from everyone here, and make your decision based on

YOUR gut

> instincts- I'm sure others will tell you just how badly their Docs

let them

> down. Good luck! Please keep us posted and feel free to email me

anytime!

>

> ' Mom