New with lots of questions

October 11, 2003

Hi ,

We live in Florence,Ky and have a 9 month old girl with

plagiocephaly. Our daughter just received her Doc band this week.

Our pediatrician kept saying it would round out, but of course it

never did. We finally got an appointment to Cincinnati Children's

hospital neurology, after bringing it up on several well visit

appointments. After waiting 5 weeks. We spent the better part of a

day at the hospital and in the end never saw a neurologist. We saw a

nurse practitioner who looked at my girls x-rays and stated that her

sutures were not fused therefore there was nothing they could do for

her. They do not treat plagiocephaly. Period. We got a nice pamphlet

on repositioning though.

My advice to you would be this. Don't wait for the neurology

appointment if it is at Cincinnati Children's. It wastes valuable

time. There are several options for banding, though unfortunately

none are local. You can ask your pediatrician for the prescription.

The closest Doc band clinic is in Cleveland. There is a locally made

helmet available in Louisville but it just didn't sound like

something we wanted to try, but you might feel different. We were

able to convince our pediatrician to write the prescription for the

Doc band and he even ended up helping us get it approved by our

insurance company, Humana-Choicecare.

We wasted so much time. The woman who fit my daughters Doc band said

that we would probably only get a 50% correction because of our late

start. It seems that Children under 6 months of age have the best

opportunities for correction.

In the end the choice is yours. I know your experiences could be

different from mine. You can email me at this email address if you

want or post here. I will help with what I can.

Rob

October 11, 2003

Hi Rob.

I wanted to add to 's comments....my daughter did not get her

first doc band until she was 9 mos old (also after being put off for

6 mos). she wore the band for 7 mos and we also received 90% +

correction. She ended up wearing 3 bands and in fact, I felt most of

the correction we were looking for came with the second and third

bands when she was 14 - 17 mos old. We had two docs tell us that

the second band would be a waste of time but we knew that she was

still growing. Please don't be discouraged yet. You are doing the

right thing and it may take longer than a 6 mo old, but your daughter

has a great chance at correction until she is 24 mos old. Good

Luck. Pics of my daughter are in the photo section under Jess.

Kim

Mom to Jess (doc band grad)

> Hi ,

> We live in Florence,Ky and have a 9 month old girl with

> plagiocephaly. Our daughter just received her Doc band this week.

>

> Our pediatrician kept saying it would round out, but of course it

> never did. We finally got an appointment to Cincinnati Children's

> hospital neurology, after bringing it up on several well visit

> appointments. After waiting 5 weeks. We spent the better part of a

> day at the hospital and in the end never saw a neurologist. We saw

a

> nurse practitioner who looked at my girls x-rays and stated that

her

> sutures were not fused therefore there was nothing they could do

for

> her. They do not treat plagiocephaly. Period. We got a nice

pamphlet

> on repositioning though.

>

> My advice to you would be this. Don't wait for the neurology

> appointment if it is at Cincinnati Children's. It wastes valuable

> time. There are several options for banding, though unfortunately

> none are local. You can ask your pediatrician for the

prescription.

> The closest Doc band clinic is in Cleveland. There is a locally

made

> helmet available in Louisville but it just didn't sound like

> something we wanted to try, but you might feel different. We were

> able to convince our pediatrician to write the prescription for the

> Doc band and he even ended up helping us get it approved by our

> insurance company, Humana-Choicecare.

>

> We wasted so much time. The woman who fit my daughters Doc band

said

> that we would probably only get a 50% correction because of our

late

> start. It seems that Children under 6 months of age have the best

> opportunities for correction.

>

> In the end the choice is yours. I know your experiences could be

> different from mine. You can email me at this email address if you

> want or post here. I will help with what I can.

>

> Rob

October 12, 2003

Hi !

I just wanted to post and welcome you to the group! I live north of

Lexington, Ky.

I'm unable to help you with your insurance question, etc. because we

ended up not having to band our daughter. However, we looked around

our area for helmet/band locations before we decided not to

helet/band. There really isn't anything super close by, but there

are options, a couple of places where current members have

experience.

I am working on creating a Helmet/Band database in the database

section of this group. If you double-click on the state header, the

information will sort by state. There are some places in Indiana

and Ohio.

Please take care,

Christie (Mom to Remy)

--- In Plagiocephaly , " cheekygirlbrat " <lmj@f...>

wrote:

> My name is , and I'm a mother of a 4 1/2 month old daughter

> . Our ped has referred us to a neuro surgeon in Cincinnati,

OH

> but the appt. isn't until Nov. He is also going to send her to PT.

> 1st question... should we be getting pre-approval from the

insurance

> company to go to neuro and PT? The entire insurance thing is

> confusing enough to me as I moved here from Canada just 3 years

ago.

> 2nd... is there anyone in the Cincinnati/Northern Kentucky area

> willing to share info on their experience?

>

> It's been great to read others experiences, but it's also been

very

> scary. The insurance aspect is my bigggest worry although I will

do

> whatever it takes to fix things for my angel. I'm very anxious, as

I

> don't know what to expect at the neuro surgeon, and how many steps

> there will be until we can do something to correct her plagio.

>

> I would really appreciate any suggestions.

>

> Thanks,

>

> , mom of , 4 1/2 mos., waiting on docs

February 18, 2004

Hi & welcome to our group!

Good luck receiving Nico's STARband tomorrow It's a very nerve

wracking time for us parents. Meanwhile, most of the time, the child

doesn't mind their new band for a second!!

For the first week or so, it's very common for the child to sweat a

lot. Once their body temp adjusts to the new band on top their head,

the sweating should decrease.

I'm sure your orthotist will give you " break in " instructions. They

usually have the child go one hr on, one hr off for the first day or

so while banded to check for any red spots, etc..

Really though, it should go pretty smoothly!! Most babies sleep fine

while banded too.

As for repositioning your daughter, we've got several repo only

members in the group. It sounds like your daughter is mild & it's

great she's off her head so much now, that'll help a ton.

Good luck tomorrow!!! Where are you going? We have a few other

STARbanded babies in CA. Let us know how it goes.

Debbie

MI

--- In Plagiocephaly , " thehults " <thehults@y...>

wrote:

> Hi all- I am new to the board and feel lucky to be able to have a

> place to ask questions and get support! I have 6 month old boy/girl

> twins and my son Nicolas has plagio. My mother noticed it at birth

> but he had tons of hair and I thought she was being neurotic--aagh,

I

> guess mom really does know best. I was exhausted and overwhelmed

with

> the babies the first few months and didn't do anything to help the

> situation by having them sleep in bouncy chairs (only way they

would

> sleep). So at the four month visit I asked their ped about it and

she

> said it wasn't that bad and just to try and repo. I felt like it

was

> pretty noticeable especially with bulge on side of head and beg to

> see in forehead, so I made appt with the only place in the bay area

> (California) that measures for helmets (Star band). He was then

> remeasured and was getting worse, so we ordered the helmet!

>

> SO...sorry so long...wanted to see if I could ask all of you to

send

> me some advice since Nico will be getting his helmet tomorrow. Any

> questions I should ask, anything you wish you would have known at

the

> start of treatment and how to make it a smooth transition.

>

> Also, for anyone just repositioning, my daughter has mild plagio

from

> all those days/nights in the bouncy seats (4.2mm ass) and I am

trying

> to repo aggressively with her now. She sleeps on the tummy now, and

> spends 95% of the day off her head. Is there chance it's early

enough

> for her head to re-round?? (it was perfect when she was born..oh

the

> regrets!)

> thanks for any advice and input it is greatly appreciated

>

February 18, 2004

Thanks so much Debbie for the encouragement. Hopefully he won't be

too upset (actually hopefully I won't!)We are going to Center for

Independent Rehabilitative Services in Palo Alto. Unfortunately there

is no way to get a DOC band in our area. Their offices are in

southern california, about an 8 hour drive each way! So we are

crossing our fingers with the STARband, our orthotist is supposed to

be really good and has been doing this for like 15 years.

If anyone else happens to look at this message, I would love to hear

about anyone's experience with this office or advice regarding these

first few weeks-thanks so much!!!

> > Hi all- I am new to the board and feel lucky to be able to have a

> > place to ask questions and get support! I have 6 month old

boy/girl

> > twins and my son Nicolas has plagio. My mother noticed it at

birth

> > but he had tons of hair and I thought she was being neurotic--

aagh,

> I

> > guess mom really does know best. I was exhausted and overwhelmed

> with

> > the babies the first few months and didn't do anything to help

the

> > situation by having them sleep in bouncy chairs (only way they

> would

> > sleep). So at the four month visit I asked their ped about it and

> she

> > said it wasn't that bad and just to try and repo. I felt like it

> was

> > pretty noticeable especially with bulge on side of head and beg

to

> > see in forehead, so I made appt with the only place in the bay

area

> > (California) that measures for helmets (Star band). He was then

> > remeasured and was getting worse, so we ordered the helmet!

> >

> > SO...sorry so long...wanted to see if I could ask all of you to

> send

> > me some advice since Nico will be getting his helmet tomorrow.

Any

> > questions I should ask, anything you wish you would have known at

> the

> > start of treatment and how to make it a smooth transition.

> >

> > Also, for anyone just repositioning, my daughter has mild plagio

> from

> > all those days/nights in the bouncy seats (4.2mm ass) and I am

> trying

> > to repo aggressively with her now. She sleeps on the tummy now,

and

> > spends 95% of the day off her head. Is there chance it's early

> enough

> > for her head to re-round?? (it was perfect when she was born..oh

> the

> > regrets!)

> > thanks for any advice and input it is greatly appreciated

> >

February 18, 2004

Just make sure your do your periodic checks when Nicolas first gets his helmet to look for red spots and ensure a good fit. Your ortho should explain this when you pick it up. Also be sure to clean it with just alcohol, no soap, etc.

The only other advice I would have right now is that if you live far from the clinic or if they ortho will not be available for the next few days, stay at the clinic for a little extra time so that they could check the fit before you leave. For example, we had them check the fit, do an adjustment, then we went to a nearby mall for a while, then came back to they could do another check and adjustment. It's often common for a band to need a few adjustments in the first few days, and by hanging out for a while we were able to avoid another trip back to the clinic the following day. (We had a 2-2.5 hour drive).

At 4 months, I think you still have a chance to get some good results with repo for your daughter.....I'm sure the repo parents will chime in shortly. At least you'll only have one to worry about repo with...I can't imagine repoing twins! Actually, I can't imagine taking care of twins....my hat goes off to all you parents out there with multiples!

Also, remember, we're here for you if you have more questions once you get home.

and (DOCgrad/2-13-04/10-14mos./PA)thehults <thehults@...> wrote:

Hi all- I am new to the board and feel lucky to be able to have a place to ask questions and get support! I have 6 month old boy/girl twins and my son Nicolas has plagio. My mother noticed it at birth but he had tons of hair and I thought she was being neurotic--aagh, I guess mom really does know best. I was exhausted and overwhelmed with the babies the first few months and didn't do anything to help the situation by having them sleep in bouncy chairs (only way they would sleep). So at the four month visit I asked their ped about it and she said it wasn't that bad and just to try and repo. I felt like it was pretty noticeable especially with bulge on side of head and beg to see in forehead, so I made appt with the only place in the bay area (California) that measures for helmets (Star band). He was then remeasured and was getting

worse, so we ordered the helmet!SO...sorry so long...wanted to see if I could ask all of you to send me some advice since Nico will be getting his helmet tomorrow. Any questions I should ask, anything you wish you would have known at the start of treatment and how to make it a smooth transition. Also, for anyone just repositioning, my daughter has mild plagio from all those days/nights in the bouncy seats (4.2mm ass) and I am trying to repo aggressively with her now. She sleeps on the tummy now, and spends 95% of the day off her head. Is there chance it's early enough for her head to re-round?? (it was perfect when she was born..oh the regrets!)thanks for any advice and input it is greatly appreciated For more plagio info

February 18, 2004

Hi ,

Welcome to the group. I agree with everything Debbie has told you

already! I'll just add this link:

http://www.bumboseat.com/

--- In Plagiocephaly , " thehults " <thehults@y...>

wrote:

> Hi all- I am new to the board and feel lucky to be able to have a

> place to ask questions and get support! I have 6 month old boy/girl

> twins and my son Nicolas has plagio. My mother noticed it at birth

> but he had tons of hair and I thought she was being neurotic--aagh,

I

> guess mom really does know best. I was exhausted and overwhelmed

with

> the babies the first few months and didn't do anything to help the

> situation by having them sleep in bouncy chairs (only way they

would

> sleep). So at the four month visit I asked their ped about it and

she

> said it wasn't that bad and just to try and repo. I felt like it

was

> pretty noticeable especially with bulge on side of head and beg to

> see in forehead, so I made appt with the only place in the bay area

> (California) that measures for helmets (Star band). He was then

> remeasured and was getting worse, so we ordered the helmet!

>

> SO...sorry so long...wanted to see if I could ask all of you to

send

> me some advice since Nico will be getting his helmet tomorrow. Any

> questions I should ask, anything you wish you would have known at

the

> start of treatment and how to make it a smooth transition.

>

> Also, for anyone just repositioning, my daughter has mild plagio

from

> all those days/nights in the bouncy seats (4.2mm ass) and I am

trying

> to repo aggressively with her now. She sleeps on the tummy now, and

> spends 95% of the day off her head. Is there chance it's early

enough

> for her head to re-round?? (it was perfect when she was born..oh

the

> regrets!)

> thanks for any advice and input it is greatly appreciated

>

February 19, 2004

, I'm right there with you on the repo. My son, h is 4.5

months and although we've been half-hartedly repoing since 2 months,

we're being much more dilligent now and hoping for improvement. I

just joined this group less than a week ago, and they've been an

invaluable source of info!! Let us know how things are going.

Kim

--- In Plagiocephaly , " thehults " <thehults@y...>

wrote:

> Hi all- I am new to the board and feel lucky to be able to have a

> place to ask questions and get support! I have 6 month old boy/girl

> twins and my son Nicolas has plagio. My mother noticed it at birth

> but he had tons of hair and I thought she was being neurotic--aagh,

I

> guess mom really does know best. I was exhausted and overwhelmed

with

> the babies the first few months and didn't do anything to help the

> situation by having them sleep in bouncy chairs (only way they

would

> sleep). So at the four month visit I asked their ped about it and

she

> said it wasn't that bad and just to try and repo. I felt like it

was

> pretty noticeable especially with bulge on side of head and beg to

> see in forehead, so I made appt with the only place in the bay area

> (California) that measures for helmets (Star band). He was then

> remeasured and was getting worse, so we ordered the helmet!

>

> SO...sorry so long...wanted to see if I could ask all of you to

send

> me some advice since Nico will be getting his helmet tomorrow. Any

> questions I should ask, anything you wish you would have known at

the

> start of treatment and how to make it a smooth transition.

>

> Also, for anyone just repositioning, my daughter has mild plagio

from

> all those days/nights in the bouncy seats (4.2mm ass) and I am

trying

> to repo aggressively with her now. She sleeps on the tummy now, and

> spends 95% of the day off her head. Is there chance it's early

enough

> for her head to re-round?? (it was perfect when she was born..oh

the

> regrets!)

> thanks for any advice and input it is greatly appreciated

>

February 19, 2004

Hi ,

Welcome to the group! I'm currently repositioning my 7 month old

son, . We've been aggressively repositioning him for 3 months

and have seen a big improvement! His pictures are in the photo

section under P. (I've just updated his pics.) I will be glad

to help you with any repo questions you may have. I'm not sure if

Christie has replied yet, but she is the repo moderator and a great

resource for advice on repositioning!

It sounds like you have one aspect of repositioning taking care of

itself since your daughter willingly sleeps on her tummy at night.

It seems like nighttime repositioning is a problem area with many

repo'ing parents (myself included).

For daytime repo, several members are using the Baby Bumbo seat.

There is a link in the repo link section if you would like to check

it out. One aspect of the seat that makes it appealing is that the

baby's head doesn't rest against anything. (This may help since you

have two little ones to keep up with!)

Again, welcome to the group and please keep us updated on the

progress of both of your babies!

(currently repo'ing 7 month old )

--- In Plagiocephaly , " thehults " <thehults@y...>

wrote:

> Hi all- I am new to the board and feel lucky to be able to have a

> place to ask questions and get support! I have 6 month old

boy/girl

> twins and my son Nicolas has plagio. My mother noticed it at birth

> but he had tons of hair and I thought she was being neurotic--

aagh, I

> guess mom really does know best. I was exhausted and overwhelmed

with

> the babies the first few months and didn't do anything to help the

> situation by having them sleep in bouncy chairs (only way they

would

> sleep). So at the four month visit I asked their ped about it and

she

> said it wasn't that bad and just to try and repo. I felt like it

was

> pretty noticeable especially with bulge on side of head and beg to

> see in forehead, so I made appt with the only place in the bay

area

> (California) that measures for helmets (Star band). He was then

> remeasured and was getting worse, so we ordered the helmet!

>

> SO...sorry so long...wanted to see if I could ask all of you to

send

> me some advice since Nico will be getting his helmet tomorrow. Any

> questions I should ask, anything you wish you would have known at

the

> start of treatment and how to make it a smooth transition.

>

> Also, for anyone just repositioning, my daughter has mild plagio

from

> all those days/nights in the bouncy seats (4.2mm ass) and I am

trying

> to repo aggressively with her now. She sleeps on the tummy now,

and

> spends 95% of the day off her head. Is there chance it's early

enough

> for her head to re-round?? (it was perfect when she was born..oh

the

> regrets!)

> thanks for any advice and input it is greatly appreciated

>

December 5, 2004

Hello Eager Beaver

has anyone used the enzymes without implementing the diet

simultaneously?

>>Yep lots, not a problem

is there any benefit to using the peptizyde over afp-peptizyde? i

would rather just get the AFP version and avoid any problem with him

not taking it.

>>We use regular Peptizyde because AFp wasn;t about when we started. I think

either is fine

let's say he uses the enzymes at meals. what about if he has a

beverage or snack in between that has g/c in it. will enzymes from

earlier work or do i have to add more enzymes.

>>Depends how soon after. Most people empty stomach 90 mins or so. Many

redose after an hour to be on the safe side. My son is a grazer, so he gets his

in his juice every time he has some.

if so, smaller amount

for a snack?

>>Yes, Start out slowly and build over over a few weeks. 1/2 cap is usually

fine for a small snack.

Good luck, be sure and post if you have any queries and post the good stuff

too

Mandi in UK

December 5, 2004

Hi : I have not done diet and started enzymes 47 days ago. My son

is a young man so it may take longer to see anything with him if at all.

Start off slowly. There are alot of people not doing the diet. You have to

do what is best for your situation. Eileen

>From: " " <tsj14609@...>

>Reply-

>

>Subject: New with lots of questions

>Date: Sun, 05 Dec 2004 18:54:43 -0000

>

>Hi. My name is . I have a 27 mos old with ASD. Reluctantly,

>we started with the casein free diet and did it for 2 weeks. The

>reason i was reluctant is that he has normal bm's, doesn't seem to

>have the typical symptoms that people say are consistent with casein

>and gluten problems. we had the peptide test done which did show

>peptides present. on the diet, which was casein with just a little

>gluten left in it, he did not improve nor did he get worse. it was

>like it wasn't any different. then i stumbled across the enzyme info.

>

>i have karen defelice's book and am reading it. but i have some

>questions i would love answers to now from those who have BTDT, as i

>want to start immediately

>

>has anyone used the enzymes without implementing the diet

>simultaneously?

>

>is there any benefit to using the peptizyde over afp-peptizyde? i

>would rather just get the AFP version and avoid any problem with him

>not taking it.

>

>let's say he uses the enzymes at meals. what about if he has a

>beverage or snack in between that has g/c in it. will enzymes from

>earlier work or do i have to add more enzymes. if so, smaller amount

>for a snack?

>

>thank you!

>

December 5, 2004

>>>we had the peptide test done which did show peptides present.

Just a note on this, the peptide test is not 100% accurate to tell

you if you have a problem with casein or gluten, or if diet or

enzymes will help. It is a test that is sort of *there* but it

doesn't give you proper direction on what to do. The results measure

other things besides sources of peptides from casein and gluten.

Also, about 25% of people (1 out of 4 NT people) will have a high

reading on the peptide test.

>>>> has anyone used the enzymes without implementing the diet

> simultaneously?

Yes, lots with great success if you use Peptizyde. In fact, a fair

number of kids do much better off GFCF with enzymes than even doing

both GFCF and enzymes. You will need to work out what is best for

your situation, but everyone is here to help with ideas.

If you want to do one of the diets, enzymes are still a good thing to

start because they can help with:

- gut healing (food eliminations don't necessarily do this)

- breaking down other foods you might not know are a problem

- help improve the results of restrictive diets (enzymes get sources

you don't know about, hidden stuff, peptides created internally, etc.)

>>> is there any benefit to using the peptizyde over afp-peptizyde?

Not really...the regular might be a smidgeon better, but if tastes or

smell is an issue, go with the AFP. Also, if the phenols are a

problem, use the AFP.

>>>> let's say he uses the enzymes at meals. what about if he has a

> beverage or snack in between that has g/c in it. will enzymes from

> earlier work or do i have to add more enzymes. if so, smaller

amount for a snack?

Enzymes work on contact. Figure that the enzymes will be in the

stomach abou 60 minutes more or less. If the snack is 2 hours later

(for example), then yes, you would need more. I would err on the side

of giving lots when you aren't sure rather then too little.

Particularly in the first couple months. After that, keep an eye on

your own child's needs to see how often he really needs them.

About the 5th month with Peptizyde, my older son could start having

dairy without enzymes here and there without any problems. Now he

only needs them about half the time and the other son doesn't need

them at all (but we still give a maintenance amount with meals just

for good measure).

.

June 27, 2005

Becky,

6 months is definitely not too late for a band, yes they like to see

babies in at the 4-6 month mark but my Dominick got his Doc band at 5

months and we have seen awesome improvement. Most of our parents are

starting at around 6 months and some much later, so your plastic

surgeon is mis informed. Are you sure of his ability to treat her

plagio? The key to successful treatment is the orthotist, a good OT

can giv you awesome results, a untrained OT can give you poor results

and in some cases make the problem worse. Here are some things to ask

and think about. What type of helmet/band is he going to use? What

training has he had in the treatment and use of the helmets. How many

babies has he done and with what results? Are there parents who have

used him that you can contact? How severe is Sam's plagio? Yes it is

important that the tort be resolved, either before or during the

helmet treatment. Your PT sounds like they are well informed on the

subject and that's a great thing. It is important to do the whole

body, my Dominick was delayed two months in gross motor skills

because of his severe plagio and not being able to turn his head off

the flat spot. It affects the muscles all the way down the body. Take

a look at the photo section here and see the before and after photos

to see what you can expect in correction. Please be sure to read the

files on " getting a good fit " and " helping baby adjust to the

band/helmet " . Keep up the work on the tort. I can tell you first hand

that it works. I know that I have given you alot to take in, but ask

any other questions you may have. Triplets, my goodness you must have

your hands full,literally,lol. Welcome to the group,

CAROLG

--- In Plagiocephaly , " schevesix " <scheve12@f...>

wrote:

> Hi, my name is Becky and this is my first time posting. I have gbb

> triplets who just turned 6 mo. My daughter has congenital

> plagio / tort. My husdand and I noticed something was wrong with

her

> at about three months. She didn't seem to turn her head to the

left.

> She had mild flattening. I brought her to the pediatrician and he

> referred us to PT. Well last week we saw a plastic surgeon and he

DX

> her with congenital plagio/tort. Basically her brothers squished

her

> during the pregnancy. We have been doing PT for two months and

will

> be getting fitted for the helmut in a couple of weeks. The PT just

> took a 20 hour class on torticillis so we have tons of new

stretches

> for her whole left side, not just her neck. I ordered a bumbo

chair

> thinking that may help. I sleep her on her stomach and give her as

> much tummy time as possible. What else can I do?? The plastic

> surgeon made me feel so quilty that I hadn't brought her in

sooner.

> He said he can't guarantee that he can totally " fix " her head since

> hers is " congenital " . My PT says that is doing great and

> that it's not too late to get her in the helmut. She said many

people

> start later. Have I totally missed the best months to get her in a

> helmut? Isn't the PT as important as the helmut? If I don't fix

the

> muscles the head will just go back after the helmut is off!? Two

> months ago couldn't even look to the left - now she turns

> that way without help and even sleeps to the bad side. Sorry I am

> rambling, I just have so many questions. I just want to do what's

> best for Sam. Any advice would be welcome. TIA

>

> Becky,

> Cincinnati, OH

June 27, 2005