Re: Please tell me more about alternative therapies for toddlers... I feel lost.

[Guest guest]

I'm so sorry to hear about your concerns. I get the sense you feel guilty about

the situation, and I hope you can let that go. You sought out treatment and took

good care of your son's condition. Perhaps your son did regress - I don't know -

but if he did, I'm sure there's no way it could be your fault. There's nothing

to feel guilty about.

If you really feel like your son still has a little tort, why not ask for a PT

evaluation? I thought my son's range of motion issue was resolved and found out

at PT that it actually wasn't fully resolved and he needed more stretching. My

point is that it can be hard for someone not specially trained in PT to tell if

there is still a mild case of tort or not. An evaluation would either ease your

mind or give you a tangible goal so you know you are helping the situation.

I can't help with the alternate therapies, but I'm sure others can. You might

want to browse through past posts for more info on that.

>

> Quick recap - and I apologize for being repetitive - this is the first time

I'[ve " talked " about any of this, I've just been keeping it all inside. Cannot

even bring up with my husband right now.

>

> My son wore a helmet for 15 weeks last summer - age 6 months to 10 months.

>

> He is 19.5 months now - his forehead bossing is still noticeable and possibly

worse - and his eyes are more asymmetrical than they were when he first got his

helmet off. I am so anxious and upset over this - it has happened so slowly of

course - I don't even trust my eyes anymore. I stare at him from different

angles - questioning what I'm seeing. From some angles his eyes look fine -

then I'll catch an alternate angle and they look SO OFF I will literally feel

nauseous. I in no way mean to insinuate that looking at my son makes me sick -

I feel sick because I feel like I failed him, like it's my fault, and like my

beautiful, beautiful little boy may be stuck with a slightly asymmetrical face

and maybe have to deal with teasing someday - it makes me cry as I type this.

>

> My starband orthotist was WAY too laid back too. Did very few scans. My son

grew out of his helmet, that's why we had to take it off - it was starting to

smash into one side of his face (which could have caused all sorts of other

problems.) But although his head was not completely rounded out at the time - I

thought it was " good enough " and he was fine. Now I wish I would have demanded

we get a second helmet - and seen it through to the end. Why didn't I? Because

I was tired of the helmet and orthotist said he looked " great. " And they don't

" do " second helmets there. But he wasn't done.

>

> These " new " developments may be related to tort - he has good neck mobility

and strength but I wonder if he may still have a mild case - maybe this is

pulling his face down on one side, I don't know. To me though - it just looks

like his plag side is more " forward " - including the bossed forehead - and this

appears to be what is pushing his eye down slightly. His cheek still looks

slightly fuller on that side - although less so as he has thinned out a lot.

>

> Another poster suggested investigating osteopathy and some other alternative

therapies. I need more info on these alternative therapies, I don't know

anything about these options - where to start? which one makes the most sense?

And any recs would be great - I'm in Pittsburgh, PA. Thank you.

>

> Also - is 18 months REALLY the helmet cut off? Anybody heard of an older

toddler getting a helmet? If recommended - I'd do it - even though we'd all

hate it. But given how long EVERYTHING takes - it would probably be at least a

month from now - and he'd be 20.5 months by then.

>

> Please - any thoughts - explanations of how alternative therapies can help - I

really need some guidance, I just feel really lost and upset.

>

> Thank you so much.

>

[Guest guest]

Sorry this is so tough for you. I can relate since sometimes I still see my

daughter's problem spots, but in our case she looks good overall. Cranial Tech

will sometimes band at an older age. You can try and schedule an evaluation with

them - of course this will mane traveling. You can also get him evaluated for

torticollis again and work on PT. This may help some with facial asymmetry. In

terms of alternative treatments, I haven't tried any, can therefore can't

recommend them. There are parents who do cranial sacral therapy.

It also might help to put the head shape in perspective, which can be quite hard

to do. You certainly haven't failed your son, and have done what you thought was

needed to fix the plagio once it was found. You might not have had the best

ortho, but that isn't something you have much control over. I hope you did get

some good correction in the band. Hopefully you'll be able to relax and stop

looking at his head so critically. Some days I still do this to my daughter, but

honestly I'm not nearly as critical now as I was previously. Also realize that

everyone won't be drawn to the flaws the way we plagio-moms are. They will just

see your adorable son.

-christine

sydney, 4.5 yrs, starband grad

>

> Quick recap - and I apologize for being repetitive - this is the first time

I'[ve " talked " about any of this, I've just been keeping it all inside. Cannot

even bring up with my husband right now.

>

> My son wore a helmet for 15 weeks last summer - age 6 months to 10 months.

>

> He is 19.5 months now - his forehead bossing is still noticeable and possibly

worse - and his eyes are more asymmetrical than they were when he first got his

helmet off. I am so anxious and upset over this - it has happened so slowly of

course - I don't even trust my eyes anymore. I stare at him from different

angles - questioning what I'm seeing. From some angles his eyes look fine -

then I'll catch an alternate angle and they look SO OFF I will literally feel

nauseous. I in no way mean to insinuate that looking at my son makes me sick -

I feel sick because I feel like I failed him, like it's my fault, and like my

beautiful, beautiful little boy may be stuck with a slightly asymmetrical face

and maybe have to deal with teasing someday - it makes me cry as I type this.

>

> My starband orthotist was WAY too laid back too. Did very few scans. My son

grew out of his helmet, that's why we had to take it off - it was starting to

smash into one side of his face (which could have caused all sorts of other

problems.) But although his head was not completely rounded out at the time - I

thought it was " good enough " and he was fine. Now I wish I would have demanded

we get a second helmet - and seen it through to the end. Why didn't I? Because

I was tired of the helmet and orthotist said he looked " great. " And they don't

" do " second helmets there. But he wasn't done.

>

> These " new " developments may be related to tort - he has good neck mobility

and strength but I wonder if he may still have a mild case - maybe this is

pulling his face down on one side, I don't know. To me though - it just looks

like his plag side is more " forward " - including the bossed forehead - and this

appears to be what is pushing his eye down slightly. His cheek still looks

slightly fuller on that side - although less so as he has thinned out a lot.

>

> Another poster suggested investigating osteopathy and some other alternative

therapies. I need more info on these alternative therapies, I don't know

anything about these options - where to start? which one makes the most sense?

And any recs would be great - I'm in Pittsburgh, PA. Thank you.

>

> Also - is 18 months REALLY the helmet cut off? Anybody heard of an older

toddler getting a helmet? If recommended - I'd do it - even though we'd all

hate it. But given how long EVERYTHING takes - it would probably be at least a

month from now - and he'd be 20.5 months by then.

>

> Please - any thoughts - explanations of how alternative therapies can help - I

really need some guidance, I just feel really lost and upset.

>

> Thank you so much.

>

[Guest guest]

First of all, yes babies do get banded at older ages, but sometimes it is hard to get someone to agree to do it and the benefits are much smaller. But, it might be worth looking into.

Alternative therapies are discussed quite a bit in the older plagio group - olderplag I would really encourage you to go there and ask the same question. Some of us here on also with that group (me included).

We have done CST and chiro after my daughter graduated from her band. I feel that she benefited, but don't have proof in terms of numbers. Some would recommend an ostepath instead and some have also done something called NCR, but that is more expensive and a little more drastic - usually resorted to for the older kids (like 5 or 6) because it involves putting something up in the nose. Plus, you have to travel a long distance to find someone who can do it. Kathy has done this for both of her boys and could perhaps discuss it with you.

You should note that there is less scientific evidence documenting these therapies. However, I have seen studies done that show improvement for plagio and tort using chiro in infants, but these were infants and not toddlers. I haven't done the research in a year so there may be some additional studies since then - I don't know. It was those studies plus the testimonies of some moms on the older plagio group that convinced me to try the chiro. In terms of CST, my cranial doctor told me that there have been studies showing that it helps with plagio, but I didn't ask her for the details and I haven't seen her in a long time. I did contact her about a year ago when I was considering another band ( was about 22 months then) and she felt that we would get more improvement from going back to CST than doing a band at that age. I have never looked up NCR, but there are moms on the older plagio list that claim it is the only thing that has helped their

older children.

CST involves light touch, mostly on the head. It is through the energy that flows through the blood in the head that changes are made. It basically releases the sutures so that they are not keeping the head from rounding out. It sounds kind of weird, but I swear that I noticed a difference in 's head during the month before she got her band. Chiro looks very different depending upon the style used. My chiro adjusts the spine and the head using her hands and special tool. Some other do more like a massage. I don't want to answer for the other methods because we haven't used them. Please post your question on the older plagio group. Many of them can help you more than I can.

, mom to , 2 3/4 years

STARband grad May 2009

Chiro and CST

land

From: stephaniebilliel <SBilliel@...>Plagiocephaly Sent: Sun, June 27, 2010 10:15:38 PMSubject: Re: Please tell me more about alternative therapies for toddlers... I feel lost.

I'm so sorry to hear about your concerns. I get the sense you feel guilty about the situation, and I hope you can let that go. You sought out treatment and took good care of your son's condition. Perhaps your son did regress - I don't know - but if he did, I'm sure there's no way it could be your fault. There's nothing to feel guilty about. If you really feel like your son still has a little tort, why not ask for a PT evaluation? I thought my son's range of motion issue was resolved and found out at PT that it actually wasn't fully resolved and he needed more stretching. My point is that it can be hard for someone not specially trained in PT to tell if there is still a mild case of tort or not. An evaluation would either ease your mind or give you a tangible goal so you know you are helping the situation.I can't help with the alternate therapies, but I'm sure others can. You might want to browse through past posts for more info on that.

>> Quick recap - and I apologize for being repetitive - this is the first time I'[ve "talked" about any of this, I've just been keeping it all inside. Cannot even bring up with my husband right now.> > My son wore a helmet for 15 weeks last summer - age 6 months to 10 months. > > He is 19.5 months now - his forehead bossing is still noticeable and possibly worse - and his eyes are more asymmetrical than they were when he first got his helmet off. I am so anxious and upset over this - it has happened so slowly of course - I don't even trust my eyes anymore. I stare at him from different angles - questioning what I'm seeing. From some angles his eyes look fine - then I'll catch an alternate

angle and they look SO OFF I will literally feel nauseous. I in no way mean to insinuate that looking at my son makes me sick - I feel sick because I feel like I failed him, like it's my fault, and like my beautiful, beautiful little boy may be stuck with a slightly asymmetrical face and maybe have to deal with teasing someday - it makes me cry as I type this. > > My starband orthotist was WAY too laid back too. Did very few scans. My son grew out of his helmet, that's why we had to take it off - it was starting to smash into one side of his face (which could have caused all sorts of other problems.) But although his head was not completely rounded out at the time - I thought it was "good enough" and he was fine. Now I wish I would have demanded we get a second helmet - and seen it through to the end. Why didn't I? Because I was tired of the helmet and orthotist said he looked "great." And they don't "do" second helmets there. But he

wasn't done. > > These "new" developments may be related to tort - he has good neck mobility and strength but I wonder if he may still have a mild case - maybe this is pulling his face down on one side, I don't know. To me though - it just looks like his plag side is more "forward" - including the bossed forehead - and this appears to be what is pushing his eye down slightly. His cheek still looks slightly fuller on that side - although less so as he has thinned out a lot. > > Another poster suggested investigating osteopathy and some other alternative therapies. I need more info on these alternative therapies, I don't know anything about these options - where to start? which one makes the most sense? And any recs would be great - I'm in Pittsburgh, PA. Thank you. > > Also - is 18 months REALLY the helmet cut off? Anybody heard of an older toddler getting a helmet? If recommended - I'd do it - even though we'd

all hate it. But given how long EVERYTHING takes - it would probably be at least a month from now - and he'd be 20.5 months by then. > > Please - any thoughts - explanations of how alternative therapies can help - I really need some guidance, I just feel really lost and upset. > > Thank you so much.>

[Guest guest]

Hi, I'm sorry I don't really have any constructive advice, but I just wanted to

say that I have gone through almost exactly what you are. My son wore a helmet

from 6-9 months. It pretty much corrected his asymmetry, but he was left with

what I thought was unacceptable brachy. His head isn't flat, but it is

definitely wide. I didn't push for a second helmet because I sensed (correctly)

that the orthotist, my husband, my parents, all the teachers at my son's

daycare, etal, would think I was crazy. But I should have because looking at my

son's head has actually driven me close to that. I tried to get him a second

helmet when he was 15 months, but couldn't get a prescription. Now he will be

two in a week. It is really too late, and I am coming to terms with it.

In your son's case, I am hoping that perhaps some of the facial asymmetry is

muscular and there is some remaining tort that could be resolved, resulting in

more symmetry. Definitely take any recommendations for alternative therapy that

you can (chiro, etc.) At least you will feel like you are doing something. And

I would say if you are near a different banding location and can get a

prescription why not get another helmet.

In any case, I hope you can shake some of the terrible guilt you seem to be

feeling. I myself am trying to do that. It seems like these days it is nearly

100% the job of the one person who actually has her eyes open and her brain

working (usually the mother) to take care of everything for a child. You can't

count on doctors, teachers, or anyone to do their jobs. Pediatricians really

should be doing more to prevent plagio in the first place, for example. It is

really too big a job, especially when many of us have other jobs too! Give

yourself a break. You did way better than most do simply by getting a helmet at

all.

I also want to say that the things we notice about our own kids are really not

going to be seen so easily by others. I seriously doubt your son will be teased

for his mild facial asymmetry. My husband has a scar on his forehead that I

didn't even notice until I'd been with him for two years, and I have always

loved looking at his handsome face.

Anyway, you are not alone....

>

> Quick recap - and I apologize for being repetitive - this is the first time

I'[ve " talked " about any of this, I've just been keeping it all inside. Cannot

even bring up with my husband right now.

>

> My son wore a helmet for 15 weeks last summer - age 6 months to 10 months.

>

> He is 19.5 months now - his forehead bossing is still noticeable and possibly

worse - and his eyes are more asymmetrical than they were when he first got his

helmet off. I am so anxious and upset over this - it has happened so slowly of

course - I don't even trust my eyes anymore. I stare at him from different

angles - questioning what I'm seeing. From some angles his eyes look fine -

then I'll catch an alternate angle and they look SO OFF I will literally feel

nauseous. I in no way mean to insinuate that looking at my son makes me sick -

I feel sick because I feel like I failed him, like it's my fault, and like my

beautiful, beautiful little boy may be stuck with a slightly asymmetrical face

and maybe have to deal with teasing someday - it makes me cry as I type this.

>

> My starband orthotist was WAY too laid back too. Did very few scans. My son

grew out of his helmet, that's why we had to take it off - it was starting to

smash into one side of his face (which could have caused all sorts of other

problems.) But although his head was not completely rounded out at the time - I

thought it was " good enough " and he was fine. Now I wish I would have demanded

we get a second helmet - and seen it through to the end. Why didn't I? Because

I was tired of the helmet and orthotist said he looked " great. " And they don't

" do " second helmets there. But he wasn't done.

>

> These " new " developments may be related to tort - he has good neck mobility

and strength but I wonder if he may still have a mild case - maybe this is

pulling his face down on one side, I don't know. To me though - it just looks

like his plag side is more " forward " - including the bossed forehead - and this

appears to be what is pushing his eye down slightly. His cheek still looks

slightly fuller on that side - although less so as he has thinned out a lot.

>

> Another poster suggested investigating osteopathy and some other alternative

therapies. I need more info on these alternative therapies, I don't know

anything about these options - where to start? which one makes the most sense?

And any recs would be great - I'm in Pittsburgh, PA. Thank you.

>

> Also - is 18 months REALLY the helmet cut off? Anybody heard of an older

toddler getting a helmet? If recommended - I'd do it - even though we'd all

hate it. But given how long EVERYTHING takes - it would probably be at least a

month from now - and he'd be 20.5 months by then.

>

> Please - any thoughts - explanations of how alternative therapies can help - I

really need some guidance, I just feel really lost and upset.

>

> Thank you so much.

>