Re: Advice needed ASAP

[Guest guest]

Hello and welcome to the group!

You mentioned CranioCap - are you in MN? I am, and my son also had a

CranioCap - just graduated this month.

The decision to band is a hard one, and a very personal one. But, if

you think about it, if you feel strongly on your sons head shape and

you are not happy with it now, you kind of made up your mind, right?

He is 9 months (same as my son) and it's best to get him going with

it now.

Though it is true that the CranioCap normally isn't worn beyond 12

months, there are other options for after that time - Cranial Tech

does it- and they have great success rates for older kiddos. Many on

the board have banded their lil ones later.

My son had severe plagio - was told was one of the most severe the

doc had seen. After 4 months of wearing it (and 5 days) he graduated.

He does still have a flat spot that I'm not comfortable with.. may

end up asking for another band.

If you are worrying about what he will say or what will happen when

he's older if he doesnt round on his own, I would say go for the

band. Again, it is your decision. Did you see Dr Wood?

Hoping the best for you!

Kim

mom to Kaela (9) and Jaxson 9 mo

--- In Plagiocephaly , " aboysmom " <deblonde1@a...>

wrote:

> Hello to everyone. I am new here and need some advice ASAP. I

don't

> have the time to search the whole board before making my decision,

> which needs to be made today. (Although, I am finding a ton of

useful

> information and I am so appreciative!)

>

> My 9 month old son has Torticollis and has been in PT for 3

months.

> I have had concerns about his head shape since he was 4 months

old.

> I have not seen any improvement in the shape and just finally got a

> referral to the doc for the Cranio cap. The doc said his head is

> average based on the kids that come in for the cap. He told me the

> decision to get the cap is a Social decision, not a medical one.

He

> did not advise me to go either way (which I think is what I

needed).

> He said there really isnt any 'medical' reason to get it, and that

> his brain will be fine. My concerns are of course, are that his

head

> will not re-shape itself and as a result he will be teased as he

> grows up. He told me if I wanted to do this, we had to do it now,

as

> the results are probably not as good as the child gets older, and

> they never fit children over 12 months. (I am sure you all know

this)

>

> I find this decision very difficult. I am hoping we will see some

> great improvements and wonder if I am expecting too much since he

is

> so old. I wonder how many heads have fixed themselves? One minute

I

> think, we are doing it and then the next minute I think, we don't

> need it.

>

> Any advice or stories of your experiences would be greatly

> appreciated. The doc told me the only downsides are the cost and

the

> time (cuz you have to go in every 2 weeks for re-fitting). Our

> insurance covers 80%, so the cost will be about $450 to us. So I

> would hate to get it and not use it because I hated it. He also

said

> 100% of the people they surveyed were happy and would do it again.

> Do you all agree with that? Sorry so long and if you are still

> reading, you are truly wonderful! Thanks in advance for your help.

[Guest guest]

All I can tell you is what happend to me. One of my twins has

plagio and the drs said it will round out on its own, yadda yadda.

Well at his 15 month appt. the dr. said it might not get any

better. So we went to Cranial Tech and they said that at about 7

months the skull will stop rounding out on it's own. Or at least

slow down alot. They are treating at 16 months (he was a

preemie so adjust 2 months to 14 months) and we had an adjustment

yesterday, and after 3 weeks, we're already seeing some correction.

She said he's right on target for the 4 months correction time. So

he should be done around August. I'm pretty pissed at 2 of the dr.

in our pediatric group because both said the same thing, keep him

off his head and it will round out. Which is right until they're 7

months old or so. But I feel that after 7 months, if it's not

corrected on its own, then get it checked out.

Also, if you go to Cranial Tech, the evaluation appt. is free.

Good luck in your decision.

Debbie

--- In Plagiocephaly , " aboysmom " <deblonde1@a...>

wrote:

> Hello to everyone. I am new here and need some advice ASAP. I

don't

> have the time to search the whole board before making my decision,

> which needs to be made today. (Although, I am finding a ton of

useful

> information and I am so appreciative!)

>

> My 9 month old son has Torticollis and has been in PT for 3

months.

> I have had concerns about his head shape since he was 4 months

old.

> I have not seen any improvement in the shape and just finally got

a

> referral to the doc for the Cranio cap. The doc said his head is

> average based on the kids that come in for the cap. He told me

the

> decision to get the cap is a Social decision, not a medical one.

He

> did not advise me to go either way (which I think is what I

needed).

> He said there really isnt any 'medical' reason to get it, and that

> his brain will be fine. My concerns are of course, are that his

head

> will not re-shape itself and as a result he will be teased as he

> grows up. He told me if I wanted to do this, we had to do it now,

as

> the results are probably not as good as the child gets older, and

> they never fit children over 12 months. (I am sure you all know

this)

>

> I find this decision very difficult. I am hoping we will see some

> great improvements and wonder if I am expecting too much since he

is

> so old. I wonder how many heads have fixed themselves? One

minute I

> think, we are doing it and then the next minute I think, we don't

> need it.

>

> Any advice or stories of your experiences would be greatly

> appreciated. The doc told me the only downsides are the cost and

the

> time (cuz you have to go in every 2 weeks for re-fitting). Our

> insurance covers 80%, so the cost will be about $450 to us. So I

> would hate to get it and not use it because I hated it. He also

said

> 100% of the people they surveyed were happy and would do it

again.

> Do you all agree with that? Sorry so long and if you are still

> reading, you are truly wonderful! Thanks in advance for your help.

[Guest guest]

Hello there and welcome to the group. Sounds like your doc is

keeping out of it. It is nice though that you are given the option

of banding without having to fight for it. May I ask why your

decision HAS to be made today? They should give you more time to

think about this. It is a big decision, and shouldn't be made by now

or never. At 9 months rounding out on its own is unlikely to

happen. Most docs like to feed this story and the toys on the other

side will fix everything. Most of the time though it does not. We

had to band our daughter as well. Willow had an asym of 12mm. The

doc that we saw classified this as moderate. We opted to go for the

helmet. Willow was only 6months old at the time and compared to

before she looks great. There is still a remaining flatspot and a

dent, but nothing compared to before. I did not regret this

decision in anyway and if offered I would have her banded again for

the remaining flattness. Good luck and let us know which way you

decide.

Sandy Willow's mom Torticollis resolved / CranioGermany Grad

--- In Plagiocephaly , " aboysmom " <deblonde1@a...>

wrote:

> Hello to everyone. I am new here and need some advice ASAP. I

don't

> have the time to search the whole board before making my decision,

> which needs to be made today. (Although, I am finding a ton of

useful

> information and I am so appreciative!)

>

> My 9 month old son has Torticollis and has been in PT for 3

months.

> I have had concerns about his head shape since he was 4 months

old.

> I have not seen any improvement in the shape and just finally got

a

> referral to the doc for the Cranio cap. The doc said his head is

> average based on the kids that come in for the cap. He told me

the

> decision to get the cap is a Social decision, not a medical one.

He

> did not advise me to go either way (which I think is what I

needed).

> He said there really isnt any 'medical' reason to get it, and that

> his brain will be fine. My concerns are of course, are that his

head

> will not re-shape itself and as a result he will be teased as he

> grows up. He told me if I wanted to do this, we had to do it now,

as

> the results are probably not as good as the child gets older, and

> they never fit children over 12 months. (I am sure you all know

this)

>

> I find this decision very difficult. I am hoping we will see some

> great improvements and wonder if I am expecting too much since he

is

> so old. I wonder how many heads have fixed themselves? One

minute I

> think, we are doing it and then the next minute I think, we don't

> need it.

>

> Any advice or stories of your experiences would be greatly

> appreciated. The doc told me the only downsides are the cost and

the

> time (cuz you have to go in every 2 weeks for re-fitting). Our

> insurance covers 80%, so the cost will be about $450 to us. So I

> would hate to get it and not use it because I hated it. He also

said

> 100% of the people they surveyed were happy and would do it

again.

> Do you all agree with that? Sorry so long and if you are still

> reading, you are truly wonderful! Thanks in advance for your help.

[Guest guest]

Hi & welcome to our group!

Glad you found us. I've been w/this group 3.5 yrs already and can

honestly tell you, I don't remember hearing any parent regret

getting their child a helmet or band. Even IF the helmet/band didn't

provide good correction, the parents were still happy they tried

it. Babies rarely mind their helmets and go about their happy

life. Is the CranioCap the actual brand you're looking into? We

have had many members recently get the CranioCap, from Gillette's in

MN I think, right?

As for his age, my daughter rec'd her DOCband at age 11.5 mos - and

rec'd good correction of her severe plagio in 4.5 mos treatment

time. Bands are still used in " older " babies, often up til age 2.

The older the child is, the better off you'd be wearing an active

band, like a STAR or DOC - not sure what the CranioCap is? Active

means the bands apply minimal pressures (not harmful or felt by the

child) to the non flat sides of the child's skull, which helps

redirect growth into the flat areas. A passive style helmet, is

simply made into the corrected skull shape which replies solely on

growth spurts to fill in the gaps.

Good luck with all of this! It can be quite overwhelming & scary!

Keep us posted

Debbie Abby's mom DOCGrad

MI

--- In Plagiocephaly , " aboysmom " <deblonde1@a...>

wrote:

> Hello to everyone. I am new here and need some advice ASAP. I

don't

> have the time to search the whole board before making my decision,

> which needs to be made today. (Although, I am finding a ton of

useful

> information and I am so appreciative!)

>

> My 9 month old son has Torticollis and has been in PT for 3

months.

> I have had concerns about his head shape since he was 4 months

old.

> I have not seen any improvement in the shape and just finally got

a

> referral to the doc for the Cranio cap. The doc said his head is

> average based on the kids that come in for the cap. He told me

the

> decision to get the cap is a Social decision, not a medical one.

He

> did not advise me to go either way (which I think is what I

needed).

> He said there really isnt any 'medical' reason to get it, and that

> his brain will be fine. My concerns are of course, are that his

head

> will not re-shape itself and as a result he will be teased as he

> grows up. He told me if I wanted to do this, we had to do it now,

as

> the results are probably not as good as the child gets older, and

> they never fit children over 12 months. (I am sure you all know

this)

>

> I find this decision very difficult. I am hoping we will see some

> great improvements and wonder if I am expecting too much since he

is

> so old. I wonder how many heads have fixed themselves? One

minute I

> think, we are doing it and then the next minute I think, we don't

> need it.

>

> Any advice or stories of your experiences would be greatly

> appreciated. The doc told me the only downsides are the cost and

the

> time (cuz you have to go in every 2 weeks for re-fitting). Our

> insurance covers 80%, so the cost will be about $450 to us. So I

> would hate to get it and not use it because I hated it. He also

said

> 100% of the people they surveyed were happy and would do it

again.

> Do you all agree with that? Sorry so long and if you are still

> reading, you are truly wonderful! Thanks in advance for your help.

[Guest guest]

Hi and welcome to the group. I think that is you're unhappy with

your sons headshape you should do the band. At nine months he

should still get great correction, especially if the Craniocap is

active (I'm not sure?). Nobody can tell you for sure if his head

will get any rounder on it's own, so you need to base your decision

on it staying as is. The banding process isn't bad, and my daughter

even got her third band at 15 mos after a 4 month break and she

readjusted fine. It doesn't bother her at all. Also, plagio isn't

simply a " social " problem. It can lead to other things like chronic

ear infections, migraines, and TMJ. If you have time look through

our files and links section at some of the studies we have. We're

currently in band #3 (my Hannah had severe plagio) and I'm very

happy with our experience and do not regret banding her at all! I

would definitely do it again. How severe do you think your son's

plagio is? We have severity assessments in our links section. Good

luck w/your decision and please keep us posted.

, mom to Hannah, DOCband #3 3/30

Cape Cod, Ma

--- In Plagiocephaly , " aboysmom " <deblonde1@a...>

wrote:

> Hello to everyone. I am new here and need some advice ASAP. I

don't

> have the time to search the whole board before making my decision,

> which needs to be made today. (Although, I am finding a ton of

useful

> information and I am so appreciative!)

>

> My 9 month old son has Torticollis and has been in PT for 3

months.

> I have had concerns about his head shape since he was 4 months

old.

> I have not seen any improvement in the shape and just finally got

a

> referral to the doc for the Cranio cap. The doc said his head is

> average based on the kids that come in for the cap. He told me

the

> decision to get the cap is a Social decision, not a medical one.

He

> did not advise me to go either way (which I think is what I

needed).

> He said there really isnt any 'medical' reason to get it, and that

> his brain will be fine. My concerns are of course, are that his

head

> will not re-shape itself and as a result he will be teased as he

> grows up. He told me if I wanted to do this, we had to do it now,

as

> the results are probably not as good as the child gets older, and

> they never fit children over 12 months. (I am sure you all know

this)

>

> I find this decision very difficult. I am hoping we will see some

> great improvements and wonder if I am expecting too much since he

is

> so old. I wonder how many heads have fixed themselves? One

minute I

> think, we are doing it and then the next minute I think, we don't

> need it.

>

> Any advice or stories of your experiences would be greatly

> appreciated. The doc told me the only downsides are the cost and

the

> time (cuz you have to go in every 2 weeks for re-fitting). Our

> insurance covers 80%, so the cost will be about $450 to us. So I

> would hate to get it and not use it because I hated it. He also

said

> 100% of the people they surveyed were happy and would do it

again.

> Do you all agree with that? Sorry so long and if you are still

> reading, you are truly wonderful! Thanks in advance for your help.

[Guest guest]

May I ask why your decision HAS to be made today? They should give

you more time to

> think about this. It is a big decision, and shouldn't be made by

now

> or never.

Hi again! I just wanted to thank everyone for their advice and

replies. The reason I needed to decide soon is that my son is over 9

months old. The doc said if we were going to do it, we needed to

move on it right away. I am going out of town first thing tomorrow,

so they were trying to get him in and fitted today. However, it

didn't work out, so he will be fitted on Monday morning. We have

decided to go ahead with the Cranio Cap. I talked to some people

(his PT, a close friend of mine, and two moms that used the same doc

recently) and also found all of your advice helpful. I figure if we

don't do it, we may regret it down the road when it is too late. But

if we do it and it doesn't help, atleast we know we did everything we

could to help him out. I am sure I will be sticking around here in

your group if that's ok. Thanks again

in Minnesota

[Guest guest]

Hi ,

What a relief to have made your decision! I wish you guys luck on

Monday and we'd be happy to have you stick around the group!

, mom to Hannah, DOCband #3 3/30

Cape Cod, Ma

--- In Plagiocephaly , " aboysmom " <deblonde1@a...>

wrote:

> May I ask why your decision HAS to be made today? They should

give

> you more time to

> > think about this. It is a big decision, and shouldn't be made by

> now

> > or never.

>

> Hi again! I just wanted to thank everyone for their advice and

> replies. The reason I needed to decide soon is that my son is

over 9

> months old. The doc said if we were going to do it, we needed to

> move on it right away. I am going out of town first thing

tomorrow,

> so they were trying to get him in and fitted today. However, it

> didn't work out, so he will be fitted on Monday morning. We have

> decided to go ahead with the Cranio Cap. I talked to some people

> (his PT, a close friend of mine, and two moms that used the same

doc

> recently) and also found all of your advice helpful. I figure if

we

> don't do it, we may regret it down the road when it is too late.

But

> if we do it and it doesn't help, atleast we know we did everything

we

> could to help him out. I am sure I will be sticking around here

in

> your group if that's ok. Thanks again

>

> in Minnesota

[Guest guest]

Hello

I think you are doing the right thing. I am the same way when it

comes to my daughter. She still has some areas that I see and we

are having her looked at again. Even though everyone around me sais

that it's nothing which it might just be, but I want to know that I

have done everything I could so I don't regreat it later on. Good

luck on Monday and let us know how it went. Please don't forget

your camera so you can post some pictures afterwards.

Sandy Willow's Mom torticollis resolved / CranioGermany Grad

--- In Plagiocephaly , " aboysmom " <deblonde1@a...>

wrote:

> May I ask why your decision HAS to be made today? They should

give

> you more time to

> > think about this. It is a big decision, and shouldn't be made by

> now

> > or never.

>

> Hi again! I just wanted to thank everyone for their advice and

> replies. The reason I needed to decide soon is that my son is

over 9

> months old. The doc said if we were going to do it, we needed to

> move on it right away. I am going out of town first thing

tomorrow,

> so they were trying to get him in and fitted today. However, it

> didn't work out, so he will be fitted on Monday morning. We have

> decided to go ahead with the Cranio Cap. I talked to some people

> (his PT, a close friend of mine, and two moms that used the same

doc

> recently) and also found all of your advice helpful. I figure if

we

> don't do it, we may regret it down the road when it is too late.

But

> if we do it and it doesn't help, atleast we know we did everything

we

> could to help him out. I am sure I will be sticking around here

in

> your group if that's ok. Thanks again

>

> in Minnesota

[Guest guest]

Hi,

I just wanted to write and welcome you to the group - I have been

unable to respond to posts in a timely manner since I just moved and

haven't had computer access.

I see you have already received many replies to your questions, and

that you will be going for the CranioCap(?) We have a lot of

members who have used/are using the CranioCap, so you should be in

like company if you have any questions or concerns.

Have you been to the link to information about the CranioCap? Here

it is if you haven't visited there already:

CranioCap:

http://www.gillettechildrens.org/default.cfm?pid=1.3.6.4#CranioCap

Take care,

Christie (Mom to Repo'd Remy)

--- In Plagiocephaly , " aboysmom " <deblonde1@a...>

wrote:

> Hello to everyone. I am new here and need some advice ASAP. I

don't

> have the time to search the whole board before making my decision,

> which needs to be made today. (Although, I am finding a ton of

useful

> information and I am so appreciative!)

>

> My 9 month old son has Torticollis and has been in PT for 3

months.

> I have had concerns about his head shape since he was 4 months

old.

> I have not seen any improvement in the shape and just finally got

a

> referral to the doc for the Cranio cap. The doc said his head is

> average based on the kids that come in for the cap. He told me

the

> decision to get the cap is a Social decision, not a medical one.

He

> did not advise me to go either way (which I think is what I

needed).

> He said there really isnt any 'medical' reason to get it, and that

> his brain will be fine. My concerns are of course, are that his

head

> will not re-shape itself and as a result he will be teased as he

> grows up. He told me if I wanted to do this, we had to do it now,

as

> the results are probably not as good as the child gets older, and

> they never fit children over 12 months. (I am sure you all know

this)

>

> I find this decision very difficult. I am hoping we will see some

> great improvements and wonder if I am expecting too much since he

is

> so old. I wonder how many heads have fixed themselves? One

minute I

> think, we are doing it and then the next minute I think, we don't

> need it.

>

> Any advice or stories of your experiences would be greatly

> appreciated. The doc told me the only downsides are the cost and

the

> time (cuz you have to go in every 2 weeks for re-fitting). Our

> insurance covers 80%, so the cost will be about $450 to us. So I

> would hate to get it and not use it because I hated it. He also

said

> 100% of the people they surveyed were happy and would do it

again.

> Do you all agree with that? Sorry so long and if you are still

> reading, you are truly wonderful! Thanks in advance for your help.