PLEASE HELP!

[Guest guest]

Hi,

No, it's not to late to get him another band. My daughter was 14

months old when she received her second DOCband. We've seen some nice

correction from her second band. was band less for almost 3

weeks, between bands. I thought she'd have a hard time adjusting to

it again. She didn't, at all. I think if you're going to pursue

this,you need to really commit to it. Why bother to go through all of

this, if your not going to keep the band on his head? I know it's a

hard adjustment for us parents, but you need to look at the big

picture! :-)

Good luck with your decision. Please keep us posted.

> My son is 13 months old and we had a starband on him. I am so bad.

> When he outgrew it we never went back for another helmet and he

could

> probably do with another one. Its not nearly as bad as when we

> started but when I heard his uncle referr to him as Gumgy I

realized

> that maybe my eyes have adjusted to his head shaped. Is it to late

to

> get another one. I will post a photo as well. His name is AJ.

Please

> look I really need an opinion from someone other than family. I

even

> find myself just asking strangers sometimes if they notice anything

> about his head. His grandfather has made us feel soooo bad for not

> being on top of his helmet therapy. And says AJ will hate us later

if

> we dont fix it now. I am so confused. I had the worst time getting

> him to wear the thing and he never adjusted to it. Finaly I could

> take his crying no more and I gave him more and more breaks from

the

> helmet until eventually he didnt wear it at all. " Oh were going to

> Disneyland, leave the helmet at home, he will not be able to enjoy

> it. " " Oh were going to Chucky Cheese, take it off so he can see

> everything better and be more comfortable. These are 2 of the many

> excuses I used to take the hateful thing off. I really do think it

> has do a great job on his head:)

[Guest guest]

--- In Plagiocephaly , " adrianmansion <I am so

confused. I had the worst time getting

> him to wear the thing and he never adjusted to it. Finaly I could

> take his crying no more and I gave him more and more breaks from

the

> helmet until eventually he didnt wear it at all

Do you think the band didn't fit him well? It shouldn't bother him

like that, particularly after he has adjusted to it.

How experienced was your ortho?

13 months is not to late to reband, but time is not on your side, so

HURRY!

Dane's mom DOC Grad

[Guest guest]

Welcome to our group!!

Ok, sorry here, but AJ's grandfather sounds incredibally rude and

insensitive! Sorry, I don't know him, but he doesn't need to say such

rude stuff like he has about AJ's headshape, nor does he have to tell

you AJ will hate you later in life if you don't band him again.

That's uncalled for!!!

Shew, now that I got that off my chest, I looked at his pictures, he

is adorable! Love the Superman costume. It's hard to notice his

plagio from the face shots you have posted - do you have any side or

top views of his head?

13 mos is not too old to band. Of course his growth has slowed, but

there's still time for improvment if you band again. My daughter

didn't begin her DOCband til 11.5 mos & still rec'd good correction of

what was severe plagio..

Have you contacted your Dr about this? Or your orthotist?

Welcome again, sorry you're having such a difficult time deciding and

with AJ's grandfather - grrr!

Debbie Abby's mom DOCGrad

MI

>

> > My son is 13 months old and we had a starband on him. I am so bad.

> > When he outgrew it we never went back for another helmet and he

> could

> > probably do with another one. Its not nearly as bad as when we

> > started but when I heard his uncle referr to him as Gumgy I

> realized

> > that maybe my eyes have adjusted to his head shaped. Is it to late

> to

> > get another one. I will post a photo as well. His name is AJ.

> Please

> > look I really need an opinion from someone other than family. I

> even

> > find myself just asking strangers sometimes if they notice anything

> > about his head. His grandfather has made us feel soooo bad for not

> > being on top of his helmet therapy. And says AJ will hate us later

> if

> > we dont fix it now. I am so confused. I had the worst time getting

> > him to wear the thing and he never adjusted to it. Finaly I could

> > take his crying no more and I gave him more and more breaks from

> the

> > helmet until eventually he didnt wear it at all. " Oh were going to

> > Disneyland, leave the helmet at home, he will not be able to enjoy

> > it. " " Oh were going to Chucky Cheese, take it off so he can see

> > everything better and be more comfortable. These are 2 of the many

> > excuses I used to take the hateful thing off. I really do think it

> > has do a great job on his head:)

[Guest guest]

Hello and welcome. It is not too late, but you must act now. The

STARband people will treat babies up to age 18 months and the

DOCband will treat through 24 months if the conditions are right.

If you do decide to get another band you will have to decide to be

very committed to having your son wear it. Since babies are

constantly growing the band really does need to be on 23 hours

a day everyday with little exception. You can do it! I know it is not

easy, but you must keep on remembering how very small this

portion of his life will be. Merely a drop in the bucket when you

look at an entire lifetime. The results of this small amount of time

committment will last AJ for the rest of his life. It's worth it!!

Good luck and let us know what you decide to do.

Marci (mom to )

Oklahoma

> My son is 13 months old and we had a starband on him. I am

so bad.

> When he outgrew it we never went back for another helmet and

he could

> probably do with another one. Its not nearly as bad as when we

> started but when I heard his uncle referr to him as Gumgy I

realized

> that maybe my eyes have adjusted to his head shaped. Is it to

late to

> get another one. I will post a photo as well. His name is AJ.

Please

> look I really need an opinion from someone other than family. I

even

> find myself just asking strangers sometimes if they notice

anything

> about his head. His grandfather has made us feel soooo bad

for not

> being on top of his helmet therapy. And says AJ will hate us

later if

> we dont fix it now. I am so confused. I had the worst time

getting

> him to wear the thing and he never adjusted to it. Finaly I could

> take his crying no more and I gave him more and more breaks

from the

> helmet until eventually he didnt wear it at all. " Oh were going to

> Disneyland, leave the helmet at home, he will not be able to

enjoy

> it. " " Oh were going to Chucky Cheese, take it off so he can see

> everything better and be more comfortable. These are 2 of the

many

> excuses I used to take the hateful thing off. I really do think it

> has do a great job on his head:)

[Guest guest]

My son has been labeled mild plagio by 2 different neurosurgeons but has a lot of facial asymmetry including the same eye issue that you mentioned. I went forward with a DOCBand to see if it would help. It has only been 2 weeks. Although I think my son's asymmetry has more to do with torticollis.

Natasha

emmagrace8902 <tubbs1@...> wrote:

My daughter was diagnosed with plagio at 3 months. She is now almost 8 months and has improved with repositioning. She still has some flatness on her left side. I have been told that her case is mild, but I swear I see some asymmetry in her eyes. The left one appears to be a bit larger than the right. Is this possible in mild cases? I thought that was something that typically occurred in severe cases. Anyway, my question is has anyone had any success with treating a mild case of plagio and does the band also correct the eye asymmetry? I am freaking out. I thought that the flattness was a huge deal and now I am really freaking over the eye issue. I would appreciate any comments or stories that you could share.Thanks.

[Guest guest]

Your story sounds a lot like mine.

's was Dx at 13 weeks. We saw great results with repositioning

until she was 5 months old and then it stopped improving.

's plagio is mild. one eye does seem smaller, and 's ear

is forward and higher than the other. I decided to Band her.

Where do you live?

Do you live by a cranial tech location?

http://www.cranialtech.com/ClinicLocations/clinics.html

Has your DD seem a neurosurgeon or are you working with a Ped?

Take Care,

Heidi-SAHM to 7-1/2, 4-3/4 (Apraxia, DSI) 11-1/2

months (VUR, tort/Plagio-DOCbandit 2/14/03 and FTT)

--- In Plagiocephaly , " emmagrace8902 " <tubbs1@e...>

wrote:

> My daughter was diagnosed with plagio at 3 months. She is now

> almost 8 months and has improved with repositioning. She still has

> some flatness on her left side. I have been told that her case is

> mild, but I swear I see some asymmetry in her eyes. The left one

> appears to be a bit larger than the right. Is this possible in

mild

> cases? I thought that was something that typically occurred in

> severe cases. Anyway, my question is has anyone had any success

> with treating a mild case of plagio and does the band also correct

> the eye asymmetry? I am freaking out. I thought that the

flattness

> was a huge deal and now I am really freaking over the eye issue. I

> would appreciate any comments or stories that you could share.

> Thanks.

[Guest guest]

Hello and welcome. Plagio is pretty much like everything else - each

case is different for each child. It is possible that your dd has eye

assymetry and mild plagio. Determining the severity of plagio is very

subjective - it's hard to say for sure exactly. Banding does help eye

assymetry and other facial assymetry as well, and, of course, it

definitely helps with the flatness. Have you seen a specialist or

just your ped? If you haven't seen a specialist then perhaps you can

ask your ped for a referral or if you have a PPO maybe you can go

ahead and make an appt with a specialist yourself. You can find a

list of band/plagio friendly specialists at www.plagiocephaly.org. If

you could post your location perhaps someone in this group can offer

you suggestions on specialists and orthotists.

I definitely understand your concern. Keep us posted!

Marci (Mom to )

Oklahoma

--- In Plagiocephaly , " emmagrace8902 " <tubbs1@e...>

wrote:

> My daughter was diagnosed with plagio at 3 months. She is now

> almost 8 months and has improved with repositioning. She still has

> some flatness on her left side. I have been told that her case is

> mild, but I swear I see some asymmetry in her eyes. The left one

> appears to be a bit larger than the right. Is this possible in

mild

> cases? I thought that was something that typically occurred in

> severe cases. Anyway, my question is has anyone had any success

> with treating a mild case of plagio and does the band also correct

> the eye asymmetry? I am freaking out. I thought that the

flattness

> was a huge deal and now I am really freaking over the eye issue. I

> would appreciate any comments or stories that you could share.

> Thanks.

[Guest guest]

Hi Heidi,

We have an appointment next week at CT in NJ. At what age did you

band your daughter? You said she was considered mild. What

measurements did they come up with to determine her severity? Did

you see the difference in her eyes at 13 weeks or did it develop

over time? Did your ped recommend the band or was it the

standard " it should round out " ?

Dorothy

- In Plagiocephaly , " Heidi " <saraibeth2@y...> wrote:

> Your story sounds a lot like mine.

> 's was Dx at 13 weeks. We saw great results with

repositioning

> until she was 5 months old and then it stopped improving.

> 's plagio is mild. one eye does seem smaller, and 's

ear

> is forward and higher than the other. I decided to Band her.

> Where do you live?

> Do you live by a cranial tech location?

> http://www.cranialtech.com/ClinicLocations/clinics.html

> Has your DD seem a neurosurgeon or are you working with a Ped?

> Take Care,

> Heidi-SAHM to 7-1/2, 4-3/4 (Apraxia, DSI) 11-

1/2

> months (VUR, tort/Plagio-DOCbandit 2/14/03 and FTT)

>

>

>

>

>

>

> > My daughter was diagnosed with plagio at 3 months. She is now

> > almost 8 months and has improved with repositioning. She still

has

> > some flatness on her left side. I have been told that her case

is

> > mild, but I swear I see some asymmetry in her eyes. The left

one

> > appears to be a bit larger than the right. Is this possible in

> mild

> > cases? I thought that was something that typically occurred in

> > severe cases. Anyway, my question is has anyone had any success

> > with treating a mild case of plagio and does the band also

correct

> > the eye asymmetry? I am freaking out. I thought that the

> flattness

> > was a huge deal and now I am really freaking over the eye

issue. I

> > would appreciate any comments or stories that you could share.

> > Thanks.

[Guest guest]

Hi Dorothy & welcome to our group!

You've already rec'd great replies. I'm happy to hear you have an

appt with Cranial Tech next week already.

The bands can certainly correct assymetries and it is possible to get

assymetry even with a mild case of plagio.

Your daughter is still young enough to get good results if you do

decide to band her.

Good luck next week, please let us know how it goes.

Debbie Abby's mom DOCGrad

MI

> > > My daughter was diagnosed with plagio at 3 months. She is now

> > > almost 8 months and has improved with repositioning. She still

> has

> > > some flatness on her left side. I have been told that her case

> is

> > > mild, but I swear I see some asymmetry in her eyes. The left

> one

> > > appears to be a bit larger than the right. Is this possible in

> > mild

> > > cases? I thought that was something that typically occurred in

> > > severe cases. Anyway, my question is has anyone had any success

> > > with treating a mild case of plagio and does the band also

> correct

> > > the eye asymmetry? I am freaking out. I thought that the

> > flattness

> > > was a huge deal and now I am really freaking over the eye

> issue. I

> > > would appreciate any comments or stories that you could share.

> > > Thanks.

[Guest guest]

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Thank you so much!!!!!

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[Guest guest]

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[Guest guest]

>

> did you mean Long Q? Have a look at this

> http://www.autismcalciumchannelopathy.com/

>

>

> Natasa

>

>

> I found this article on another cite.

>

> http://www.theoneclickgroup.co.uk/documents/ME-CFS_docs/Hannah%

> 20Poling,%20Autism%20and%20ME%20CFS.pdf

>

> Well I have CFS and LQT. My son regressed into Autism the day he had

> the MMR. Is their something I should be doing, finding out etc. A bit

> worried and confused as I didn't realise LQT was connected to CFS or

> Autism.

>

> Advice and more info greatly accepted.

>

>

>

>

>

[Guest guest]

Yes long QT interval. Thank you fo

esponding each time I don't feel so alone being not from US on here x

>

> >

> > did you mean Long Q? Have a look at this

> > http://www.autismcalciumchannelopathy.com/

> >

> >

> > Natasa

> >

> >

> > I found this article on another cite.

> >

> > http://www.theoneclickgroup.co.uk/documents/ME-CFS_docs/Hannah%

> > 20Poling,%20Autism%20and%20ME%20CFS.pdf

> >

> > Well I have CFS and LQT. My son regressed into Autism the day he

had

> > the MMR. Is their something I should be doing, finding out etc. A

bit

> > worried and confused as I didn't realise LQT was connected to CFS

or

> > Autism.

> >

> > Advice and more info greatly accepted.

> >

> >

> >

> >

> >

>

>

>

>

>