Stories from families who have opted not to have treatment

[Guest guest]

Hello all,

my beautiful 13 month old baby has PC and has a very flat head at the back that

is slightly flatter on the right. I have spoken to a few NHS professionals,

nurses, Dr's and health visitors and also his great uncle who is a

paediatrician, who all reassure me that the condition will correct itself over

time and there is no real consequence other than cosmetic (but lets face it in

this day and age cosmetic issues can be very upsetting for some). I haven't

pushed to see a neuro surgeon but am considering whether I should.

He is rolling around in his sleep now and sleeping on his front so is not always

on his back as he used to be, but to be honest over the last few months I

haven't noticed any real change.

I was wondering if there were any parents out there who had opted not to seek

private treatment or use of helmet but who have seen improvements in their

baby's condition? A lot of the charity websites and other medical websites I

have visited seem to really push the use of helmet but don't seem to have

anything re: advice for those who aren't on the helmet route yet or opting not

to.

Should I push for a referral to the neuro surgeon at our local hospital? What

do people think? I would really love to hear from anyone who has thoughts or

advice.

JoJo

[Guest guest]

Hi JoJo,

Most people in this group do decide to band. Those who decide against banding

often don't remain active in the group. There is an older plagio group in

too - I believe mostly people who didn't band often because they didn't know

about it or were told it wasn't needed. I think the group is OlderPlag, but you

can search for it on .

At 13 months if you are not happy with your child's head, you should band him.

If you don't you have no control of rounding that may or may not happen. His

head will continue to grow, but without a band the growth will likely be all

over, rather than only in the problem area. Thus the overall proportion of his

head may stay the same. Since he doesn't spend much time on the flat spot it

shouldn't get worse, but there is no way to know if it will improve. My daughter

graduated from her band at 10 mo old, and her head is still more or less the

same shape. She had brachy (flat in back with extra width, but very little

asymmetry). She got good correction in her starband, but once she was out the

growth was pretty evenly distributed. I took her back to measure at 14 months

and her head was basically the same. I think that is still the case at 5 years

old.

-christine

sydney, 5 yrs, starband grad

>

> Hello all,

>

> my beautiful 13 month old baby has PC and has a very flat head at the back

that is slightly flatter on the right. I have spoken to a few NHS

professionals, nurses, Dr's and health visitors and also his great uncle who is

a paediatrician, who all reassure me that the condition will correct itself over

time and there is no real consequence other than cosmetic (but lets face it in

this day and age cosmetic issues can be very upsetting for some). I haven't

pushed to see a neuro surgeon but am considering whether I should.

>

> He is rolling around in his sleep now and sleeping on his front so is not

always on his back as he used to be, but to be honest over the last few months I

haven't noticed any real change.

>

> I was wondering if there were any parents out there who had opted not to seek

private treatment or use of helmet but who have seen improvements in their

baby's condition? A lot of the charity websites and other medical websites I

have visited seem to really push the use of helmet but don't seem to have

anything re: advice for those who aren't on the helmet route yet or opting not

to.

>

> Should I push for a referral to the neuro surgeon at our local hospital? What

do people think? I would really love to hear from anyone who has thoughts or

advice.

>

> JoJo

>

[Guest guest]

Hi ,

thanks for your reply, it has been really helpful. You wouldn't happen to know to what age the helmet is effective, am ow worried that as I have waited 13 months I may have missed the boat so to speak.

Thank you again,

JoJo

From: christineashok <christineashok@...>Subject: Re: Stories from families who have opted not to have treatmentPlagiocephaly Date: Thursday, 27 January, 2011, 14:47

Hi JoJo,Most people in this group do decide to band. Those who decide against banding often don't remain active in the group. There is an older plagio group in too - I believe mostly people who didn't band often because they didn't know about it or were told it wasn't needed. I think the group is OlderPlag, but you can search for it on .At 13 months if you are not happy with your child's head, you should band him. If you don't you have no control of rounding that may or may not happen. His head will continue to grow, but without a band the growth will likely be all over, rather than only in the problem area. Thus the overall proportion of his head may stay the same. Since he doesn't spend much time on the flat spot it shouldn't get worse, but there is no way to know if it will improve. My daughter graduated from her band at 10 mo old, and her head is still more or less the same shape. She had brachy (flat in back with extra

width, but very little asymmetry). She got good correction in her starband, but once she was out the growth was pretty evenly distributed. I took her back to measure at 14 months and her head was basically the same. I think that is still the case at 5 years old. -christinesydney, 5 yrs, starband grad>> Hello all,> > my beautiful 13 month old baby has PC and has a very flat head at the back that is slightly flatter on the right. I have spoken to a few NHS professionals, nurses, Dr's and health visitors and also his great uncle who is a paediatrician, who all reassure me that the condition will correct itself over time and there is no real consequence other than

cosmetic (but lets face it in this day and age cosmetic issues can be very upsetting for some). I haven't pushed to see a neuro surgeon but am considering whether I should.> > He is rolling around in his sleep now and sleeping on his front so is not always on his back as he used to be, but to be honest over the last few months I haven't noticed any real change. > > I was wondering if there were any parents out there who had opted not to seek private treatment or use of helmet but who have seen improvements in their baby's condition? A lot of the charity websites and other medical websites I have visited seem to really push the use of helmet but don't seem to have anything re: advice for those who aren't on the helmet route yet or opting not to.> > Should I push for a referral to the neuro surgeon at our local hospital? What do people think? I would really love to hear from anyone who has thoughts or

advice.> > JoJo>

[Guest guest]

(this reply came to my email, but I believe it was intended for the group)

Hi JoJo,

I joined this group about a month ago.. I opt'd not to have treatment. My

daughter is only 4 months old we caught hers early. I am happy to report with

therapy and the aggressive positioning I received from this website she has

improved greatly.. She went from moderate to mild... in 6 weeks time. My Sophia

has tortacolis also. We have been in therapy less then a month she went from

every week to now twice a month. We are a rare case and there was extream

invention on my part. He her TP is amazed at how well we have done... Her

tortacolis is almost gone as well and her symmetry is returning to normal. Her

left cheek was much thinner then the right and her ear was bent.. NOT ANY MORE

ALL IS NORMAL I am not gonna say it's been an easy journey for us.. But the

information I received from this website played a significant role in whats

happened with my Sophia... It's true I have not posted because we are doing so

well so this is my update also! I had all intentions of banding my daughter if

there was no improvements by 6 months old...We are a rare case and it was caught

very early! During high periods of growth. My doctor does not believe in banding

at all either. But I had all intentions on finding one that did if it did not

get better... Many blessing to you on your journey... I found power in prayer!

oxox

>

> Hello all,

>

> my beautiful 13 month old baby has PC and has a very flat head at the back

that is slightly flatter on the right. I have spoken to a few NHS

professionals, nurses, Dr's and health visitors and also his great uncle who is

a paediatrician, who all reassure me that the condition will correct itself over

time and there is no real consequence other than cosmetic (but lets face it in

this day and age cosmetic issues can be very upsetting for some). I haven't

pushed to see a neuro surgeon but am considering whether I should.

>

> He is rolling around in his sleep now and sleeping on his front so is not

always on his back as he used to be, but to be honest over the last few months I

haven't noticed any real change.

>

> I was wondering if there were any parents out there who had opted not to seek

private treatment or use of helmet but who have seen improvements in their

baby's condition? A lot of the charity websites and other medical websites I

have visited seem to really push the use of helmet but don't seem to have

anything re: advice for those who aren't on the helmet route yet or opting not

to.

>

> Should I push for a referral to the neuro surgeon at our local hospital? What

do people think? I would really love to hear from anyone who has thoughts or

advice.

>

> JoJo

>

[Guest guest]

Hi Jo

 

Looks as though you are in the UK as I am. Unfortunately in the UK it is very difficult to receive treatment on the NHS, because they do regard the condition purely as comosmetic. We saw several doctors and health visitors which all assured us that it would improve over time. And it did...... but not enough for us to be happy with.  So at 11months we went to a clinic in London to get him assessed and then decided to proceed with the banding. He was then Banded at 11 1/2 months

 

Unfortunately this meant we had to fund the Band ourselves but even though it has been a struggle to pay for it I am very glad we did. He is now 15 months and we had seen a very good improvement. His Plagio has reduced from 8mm to 4mm and his Brac from 90% to 87%. We have another appointment next week and hope to see further improvements.

 

Jack really only had a mild/moderate case, and I wish we would have had banded sooner, but I still think its worth doing even at a later stage.

 

There are several companies in the UK that provide private treatment- and usually the inital consultation is free -  so what is to stop you just seeing what they have to say.

 

http://www.londonorthotics.co.uk/plagiocephaly.html?gclid=CPO2gK_C3KYCFc0f4QodnmfXzw

The link above if where we went to (the Clinic in Kingston) because it was the closest to us, but I here the other providers are also very good.

 

LOC also let us pay in installments over a period of 4 months which helped.

 

Let us know what you decide.

 

Kind Regards

Nicki

 

On 27 January 2011 17:33, Jo Britton <jobritton42@...> wrote:

 

Hi ,

 

thanks for your reply, it has been really helpful.  You wouldn't happen to know to what age the helmet is effective, am ow worried that as I have waited 13 months I may have missed the boat so to speak.

 

Thank you again,

JoJo

From: christineashok <christineashok@...>Subject: Re: Stories from families who have opted not to have treatment

Plagiocephaly Date: Thursday, 27 January, 2011, 14:47

 

Hi JoJo,Most people in this group do decide to band. Those who decide against banding often don't remain active in the group. There is an older plagio group in too - I believe mostly people who didn't band often because they didn't know about it or were told it wasn't needed. I think the group is OlderPlag, but you can search for it on .

At 13 months if you are not happy with your child's head, you should band him. If you don't you have no control of rounding that may or may not happen. His head will continue to grow, but without a band the growth will likely be all over, rather than only in the problem area. Thus the overall proportion of his head may stay the same. Since he doesn't spend much time on the flat spot it shouldn't get worse, but there is no way to know if it will improve. My daughter graduated from her band at 10 mo old, and her head is still more or less the same shape. She had brachy (flat in back with extra width, but very little asymmetry). She got good correction in her starband, but once she was out the growth was pretty evenly distributed. I took her back to measure at 14 months and her head was basically the same. I think that is still the case at 5 years old.

-christinesydney, 5 yrs, starband grad

>> Hello all,> > my beautiful 13 month old baby has PC and has a very flat head at the back that is slightly flatter on the right. I have spoken to a few NHS professionals, nurses, Dr's and health visitors and also his great uncle who is a paediatrician, who all reassure me that the condition will correct itself over time and there is no real consequence other than cosmetic (but lets face it in this day and age cosmetic issues can be very upsetting for some). I haven't pushed to see a neuro surgeon but am considering whether I should.

> > He is rolling around in his sleep now and sleeping on his front so is not always on his back as he used to be, but to be honest over the last few months I haven't noticed any real change. > > I was wondering if there were any parents out there who had opted not to seek private treatment or use of helmet but who have seen improvements in their baby's condition? A lot of the charity websites and other medical websites I have visited seem to really push the use of helmet but don't seem to have anything re: advice for those who aren't on the helmet route yet or opting not to.

> > Should I push for a referral to the neuro surgeon at our local hospital? What do people think? I would really love to hear from anyone who has thoughts or advice.> > JoJo>

[Guest guest]

Hi again

 

Sorry I meant to mention that LOC will band up to 14 months, so its worth moving quickly if you are seriously considering it.

 

 

Kind Regards

Nicki

On 28 January 2011 08:58, Nicki Jacombs <nickijacombs@...> wrote:

Hi Jo

 

Looks as though you are in the UK as I am. Unfortunately in the UK it is very difficult to receive treatment on the NHS, because they do regard the condition purely as comosmetic. We saw several doctors and health visitors which all assured us that it would improve over time. And it did...... but not enough for us to be happy with.  So at 11months we went to a clinic in London to get him assessed and then decided to proceed with the banding. He was then Banded at 11 1/2 months

 

Unfortunately this meant we had to fund the Band ourselves but even though it has been a struggle to pay for it I am very glad we did. He is now 15 months and we had seen a very good improvement. His Plagio has reduced from 8mm to 4mm and his Brac from 90% to 87%. We have another appointment next week and hope to see further improvements.

 

Jack really only had a mild/moderate case, and I wish we would have had banded sooner, but I still think its worth doing even at a later stage.

 

There are several companies in the UK that provide private treatment- and usually the inital consultation is free -  so what is to stop you just seeing what they have to say.

 

http://www.londonorthotics.co.uk/plagiocephaly.html?gclid=CPO2gK_C3KYCFc0f4QodnmfXzw

The link above if where we went to (the Clinic in Kingston) because it was the closest to us, but I here the other providers are also very good.

 

LOC also let us pay in installments over a period of 4 months which helped.

 

Let us know what you decide.

 

Kind Regards

Nicki

 

On 27 January 2011 17:33, Jo Britton <jobritton42@...> wrote:

 

Hi ,

 

thanks for your reply, it has been really helpful.  You wouldn't happen to know to what age the helmet is effective, am ow worried that as I have waited 13 months I may have missed the boat so to speak.

 

Thank you again,

JoJo

From: christineashok <christineashok@...>Subject: Re: Stories from families who have opted not to have treatment

Plagiocephaly Date: Thursday, 27 January, 2011, 14:47

 

Hi JoJo,Most people in this group do decide to band. Those who decide against banding often don't remain active in the group. There is an older plagio group in too - I believe mostly people who didn't band often because they didn't know about it or were told it wasn't needed. I think the group is OlderPlag, but you can search for it on .

At 13 months if you are not happy with your child's head, you should band him. If you don't you have no control of rounding that may or may not happen. His head will continue to grow, but without a band the growth will likely be all over, rather than only in the problem area. Thus the overall proportion of his head may stay the same. Since he doesn't spend much time on the flat spot it shouldn't get worse, but there is no way to know if it will improve. My daughter graduated from her band at 10 mo old, and her head is still more or less the same shape. She had brachy (flat in back with extra width, but very little asymmetry). She got good correction in her starband, but once she was out the growth was pretty evenly distributed. I took her back to measure at 14 months and her head was basically the same. I think that is still the case at 5 years old.

-christinesydney, 5 yrs, starband grad

>> Hello all,> > my beautiful 13 month old baby has PC and has a very flat head at the back that is slightly flatter on the right. I have spoken to a few NHS professionals, nurses, Dr's and health visitors and also his great uncle who is a paediatrician, who all reassure me that the condition will correct itself over time and there is no real consequence other than cosmetic (but lets face it in this day and age cosmetic issues can be very upsetting for some). I haven't pushed to see a neuro surgeon but am considering whether I should.

> > He is rolling around in his sleep now and sleeping on his front so is not always on his back as he used to be, but to be honest over the last few months I haven't noticed any real change. > > I was wondering if there were any parents out there who had opted not to seek private treatment or use of helmet but who have seen improvements in their baby's condition? A lot of the charity websites and other medical websites I have visited seem to really push the use of helmet but don't seem to have anything re: advice for those who aren't on the helmet route yet or opting not to.

> > Should I push for a referral to the neuro surgeon at our local hospital? What do people think? I would really love to hear from anyone who has thoughts or advice.> > JoJo>

[Guest guest]

Hello JoJo,It still amazes me that there are so many peds who are uninformed about banding. Have you asked the health care professionals that you have consulted for studies that show plagio corrects itself after six months of age? All the research indicates that the skull is too rigid for self-correction after about six months of age. It's really a shame that your son is already 13 months b/c his chances for correction with banding would have been so much better at a younger age. Your son has already reached 80% of his cranial growth and growth must be present for correction to occur. Before I decided to band, I conducted extensive research and everything I found showed that while the head will grow larger, it will retain the deformed shape if banding is not pursued. Cranial Tech has done

some great research on this. As far as the "cosmetic" issue is concerned, there are some studies that indicate otherwise, such as the condition causing TMJ, vision problems, headaches, etc. There is still research being conducted on this as well. However, I will pose this question to you--do you really think that insurance companies would cover the band if it were only cosmetic? Of course, not! Even insurance companies are acknowledging this by covering treatment. My daughter was banded at 8 months(severe tort & plagio) after being referred to a neurosurgeon by a ped who refused to be concerned about her head shape until I put my foot down. I began noticing her irregular head shape at 8 weeks and brought this up to the ped, who just brushed aside my concerns at every subsequent well check up. She finally noticed my daughter's tort at 6 months and referred us to PT. It was the PT who brought up the helmet issue. And thank goodness she

did as I was uneducated about plagio and banding along with our ped. Generally speaking, it seems to be the older peds, who are less educated about banding. I would have loved to avoid the band and corrected through repositioning(I tried this religiously, but my daughter's undiagnosed tort made it a fruitless effort.)Some parents have reported improvement with banding in older babies, but the sad truth is that the window of opportunity for optimum correction for your son has closed. Before I booked an appt. w/ a neurosurgeon, I would call ahead to make sure that that they refer for banding(some neuros don't bother w/ it.) A craniofacial specialist may be a better choice. I would also be sure to rule out tort since your son is flatter on one side. Good luck to you.-AmyFrom: jobritton42 <jobritton42@...>Plagiocephaly Sent: Thu, January 27, 2011 5:50:14 AMSubject: Stories from families who have opted not to have treatment

Hello all,

my beautiful 13 month old baby has PC and has a very flat head at the back that is slightly flatter on the right. I have spoken to a few NHS professionals, nurses, Dr's and health visitors and also his great uncle who is a paediatrician, who all reassure me that the condition will correct itself over time and there is no real consequence other than cosmetic (but lets face it in this day and age cosmetic issues can be very upsetting for some). I haven't pushed to see a neuro surgeon but am considering whether I should.

He is rolling around in his sleep now and sleeping on his front so is not always on his back as he used to be, but to be honest over the last few months I haven't noticed any real change.

I was wondering if there were any parents out there who had opted not to seek private treatment or use of helmet but who have seen improvements in their baby's condition? A lot of the charity websites and other medical websites I have visited seem to really push the use of helmet but don't seem to have anything re: advice for those who aren't on the helmet route yet or opting not to.

Should I push for a referral to the neuro surgeon at our local hospital? What do people think? I would really love to hear from anyone who has thoughts or advice.

JoJo

[Guest guest]

I do not think the results are so dismal for older children. My child had a Hanger helmet from 11 to 15 months and is in a Cranial band now (17 mos to present) and I feel that we have gotten very good correction. Yes it will never be perfect but I could really tell the difference after the two good growth spurts she had. However I do wish we had gone with CT the whole time - the Hanger helmet just didn't fit as well except for maybe a month but note satisfaction from Hanger really seems to vary by location depending on the orthotist...good luck!Sent from my Verizon Wireless BlackBerryFrom: Amy McGinnis <mcg_woo@...>Sender: Plagiocephaly Date: Fri, 28 Jan 2011 06:55:01 -0800 (PST)<Plagiocephaly >Reply Plagiocephaly Subject: Re: Stories from families who have opted not to have treatment Hello JoJo,It still amazes me that there are so many peds who are uninformed about banding. Have you asked the health care professionals that you have consulted for studies that show plagio corrects itself after six months of age? All the research indicates that the skull is too rigid for self-correction after about six months of age. It's really a shame that your son is already 13 months b/c his chances for correction with banding would have been so much better at a younger age. Your son has already reached 80% of his cranial growth and growth must be present for correction to occur. Before I decided to band, I conducted extensive research and everything I found showed that while the head will grow larger, it will retain the deformed shape if banding is not pursued. Cranial Tech has donesome great research on this. As far as the "cosmetic" issue is concerned, there are some studies that indicate otherwise, such as the condition causing TMJ, vision problems, headaches, etc. There is still research being conducted on this as well. However, I will pose this question to you--do you really think that insurance companies would cover the band if it were only cosmetic? Of course, not! Even insurance companies are acknowledging this by covering treatment. My daughter was banded at 8 months(severe tort & plagio) after being referred to a neurosurgeon by a ped who refused to be concerned about her head shape until I put my foot down. I began noticing her irregular head shape at 8 weeks and brought this up to the ped, who just brushed aside my concerns at every subsequent well check up. She finally noticed my daughter's tort at 6 months and referred us to PT. It was the PT who brought up the helmet issue. And thank goodness shedid as I was uneducated about plagio and banding along with our ped. Generally speaking, it seems to be the older peds, who are less educated about banding. I would have loved to avoid the band and corrected through repositioning(I tried this religiously, but my daughter's undiagnosed tort made it a fruitless effort.)Some parents have reported improvement with banding in older babies, but the sad truth is that the window of opportunity for optimum correction for your son has closed. Before I booked an appt. w/ a neurosurgeon, I would call ahead to make sure that that they refer for banding(some neuros don't bother w/ it.) A craniofacial specialist may be a better choice. I would also be sure to rule out tort since your son is flatter on one side. Good luck to you.-AmyFrom: jobritton42 <jobritton42@...>Plagiocephaly Sent: Thu, January 27, 2011 5:50:14 AMSubject: Stories from families who have opted not to have treatment Hello all,my beautiful 13 month old baby has PC and has a very flat head at the back that is slightly flatter on the right. I have spoken to a few NHS professionals, nurses, Dr's and health visitors and also his great uncle who is a paediatrician, who all reassure me that the condition will correct itself over time and there is no real consequence other than cosmetic (but lets face it in this day and age cosmetic issues can be very upsetting for some). I haven't pushed to see a neuro surgeon but am considering whether I should.He is rolling around in his sleep now and sleeping on his front so is not always on his back as he used to be, but to be honest over the last few months I haven't noticed any real change. I was wondering if there were any parents out there who had opted not to seek private treatment or use of helmet but who have seen improvements in their baby's condition? A lot of the charity websites and other medical websites I have visited seem to really push the use of helmet but don't seem to have anything re: advice for those who aren't on the helmet route yet or opting not to.Should I push for a referral to the neuro surgeon at our local hospital? What do people think? I would really love to hear from anyone who has thoughts or advice.JoJo