New to Group

[Guest guest]

,

Hi we have the scanner where I go to. And the first time we saw a great deal of improvement then the next time none at all. I guess it all depends on if they have a growth spurt or not. It is discouraging though when you dont see it! Sigh.....

and L

Covington GA fab520032003 <s.myer@...> wrote:

They do have a scanner where I go. It does help with the accuracy of any changes but I was discouraged to see no change. Myer - P'town, CAMother to (6mo)STARband 2weeks> > > > Hi !> > >

> Welcome to the group. As you may have noticed, we are pretty > active group> > that loves to talk to new people. Please feel free to add > pictures of your> > son so we can get to know him better. What is his name? How has > his> > progress band in his band so far? The first couple of weeks can > be the most> > difficult, with many adjustments and trips to see the orthotist. > Hopefully> > his journey to a rounder head has been smooth so far!! Let us > know how is> > check went today.> > > > > > - mom to Aidan> > STARband 8/26/03> > GR MI >

> > > > > > > > > New to Group> > > > > > Hi my name is and I am new to this group. I have a 6 > month > > old son who has been wearing his STARband for 2weeks now. We are > > going in today for our first check-up. How does this group work? > I > > need all the support that I can get. Wondering if we can try to > > connect with other moms and kids in our area. We live in

> > Pleasanton, CA. Let me know. Thanks> > > > > > > >

[Guest guest]

I bet next time you go you will see a change. If not i would discuss it with the ortho. We have had a babies who haven't shwon change in the first few weeks then hit a big spurt. At 6 months of age i would think at your next visit you should see some improvement. When does he go back?

Angie and Jenna(STAR band grad)

New to Group> > > > > > Hi my name is and I am new to this group. I have a 6 > month > > old son who has been wearing his STARband for 2weeks now. We are > > going in today for our first check-up. How does this group work? > I > > need all the support that I can get. Wondering if we can try to > > connect with other moms and kids in our area. We live in > > Pleasanton, CA. Let me know. Thanks> > > > > > > >

[Guest guest]

Hi ,

Just wanted to say welcome to the group!

Sherri & Catriona (DOC banded 9-25)

Acworth GAfab520032003 <s.myer@...> wrote:

Hi my name is and I am new to this group. I have a 6 month old son who has been wearing his STARband for 2weeks now. We are going in today for our first check-up. How does this group work? I need all the support that I can get. Wondering if we can try to connect with other moms and kids in our area. We live in Pleasanton, CA. Let me know. ThanksFor more plagio info

[Guest guest]

Hi Jo

> I have been using the CF/GF diet now for 3 months with very promising

> results. I have also cut out yeast and sugar as harry has a candida problem

which

> is yet untreated.I must admit i am very confused after reading information

regarding enyzymes, > as to where to start and if i should if the diet is partly

> working.

>>>Enzymes are a good idea whether you continue with the diet or not as they

do much more than the diet can. I use HNI and highly recommend them - we have

UK supplier now with excellent service

>

> Do a parent use enyzme treatment themselves or are there specialist doctors

> that help?

>>>Enzymes are VERY safe, no Dr required (Thank goodness seeing as we don;t

have an abundance of interested medics in the uk <--- UNDERSTATEMENT lol)

> Any advice on how to start, would be greatly received

>>.Can you give us an idea of issues eg poops, behaviours and stuff, maybe

those you see improving with the diet. When you figure out what you are trying

to achieve and the most pressing issues, its easier to decide where to start.

Peptizyde is the HNI product for G & C, HNZyme for general digestion (also has

some Pep type enzymes in ) and No Fenol addresses phenol reactions and is most

helpful for yeast issues.

Did you see some withdrawal starting the diet or reducing the sugar and yeast

foods? It is likely you will see more of this on starting enzymes,

particularly the Pep or No Fenol.

I am in the UK too, quite a few of us here, happy to chat anytime on

Messenger or by email (Messenger addy Mum231ASD@...)

Good luck, if in doubt, shout! I also highly recommned s book and site,

see

<A HREF= " www.enzymestuff.com " >www.enzymestuff.com</A>

HTH

Mandi in Poole Dorset

Mum to Sam 14.1.97 47XYY, Autism, Heavy Metal Toxicity -off diet with HNI 2.5

years now

[Guest guest]

> I must admit i am very confused after reading information regarding enyzymes,

as to where to start and if i should if the diet is partly

working.

If diet is partly working, then enzymes will probably address other food issues

that your child has. Definitely consider enzymes to

address his other possible food issues.

Dana

[Guest guest]

I would do a little more research I does not make sence that every baby's head is different and by putting on a generic band sounds a little fishy. I do not know where you are from but you might want to look up www.cranialtech.com to find more information, I would hate for you to be losing valuable time on getting correction. In our case my son had plagiocephaly (flattening on one side and forehead protrusion) and Torticollis (shortened neck muscle which made him prefer his left side) So when we were casted for the DOC band It was made to hold the forehead side that stuck out so that the other side would fill in and it and hold the back right side of his head so that the left would fill in the open space left in the helmet. I hope this helps.

(DOCband grads mom)newmomat40 <newmomat40@...> wrote:

Hi!I was surfing the web to find info on my son's plagio & was so happy to find this group! I live in a large city & have only met 2 other people who have children wearing helmets.My son was not referred to be fitted for a helmet until he was 6 months old. His pediatrician kept saying his case was not severe & we had plenty of time, that we just needed to reposition him during sleep. When we finally insisted on be referred to NC Baptist Hospital, the dr in plastic surgery keeps stressing that we are running out of time as his fontanel is closing quickly. How could this happen? She also informed us that his case of brachiocphaly((is that spelled right?) is severe & will take more time to correct than most.Are there any other parents in the group who have kids wearing the helmet? I noticed that most are talking

about the starband. The first visit to the hospital, my son was fitted within 15 minutes.The dr measured his head & brought a helmet in, tried it on him, adding strips of foam to customize it. He was not fitted by a cast of his head. When he developed blisters on his head the next morning, the nurse told me to remove some of the foam strips.My question is: Can this method be as effective as the band that seems to be specially fitted for an individual child? Thanks for any help you can give me.I feel so bad that my little miracle baby is now going through this.For more plagio info

[Guest guest]

Welcome to the group. I have been in the group for over a year now. I must admit that i have never heard of a helmet like that. So you are the one who removes strips of foam? I would definitely check out orthomerica and cranial techs website. I would think that a customized band would be more effective. Congratulations on your baby!!!!

Angie and Jenna(STAR band grad 1/21/03)

new to group

Hi!I was surfing the web to find info on my son's plagio & was so happy to find this group! I live in a large city & have only met 2 other people who have children wearing helmets.My son was not referred to be fitted for a helmet until he was 6 months old. His pediatrician kept saying his case was not severe & we had plenty of time, that we just needed to reposition him during sleep. When we finally insisted on be referred to NC Baptist Hospital, the dr in plastic surgery keeps stressing that we are running out of time as his fontanel is closing quickly. How could this happen? She also informed us that his case of brachiocphaly((is that spelled right?) is severe & will take more time to correct than most.Are there any other parents in the group who have kids wearing the helmet? I noticed that most are talking about the starband. The first visit to the hospital, my son was fitted within 15 minutes.The dr measured his head & brought a helmet in, tried it on him, adding strips of foam to customize it. He was not fitted by a cast of his head. When he developed blisters on his head the next morning, the nurse told me to remove some of the foam strips.My question is: Can this method be as effective as the band that seems to be specially fitted for an individual child? Thanks for any help you can give me.I feel so bad that my little miracle baby is now going through this.For more plagio info

[Guest guest]

Hi & welcome to our group:

The fitting your son rec'd for his helmet sounds to be different

than what is most commonly used. Most baby's are casted for their

band/helmet (DOCband/STARband, most local helmets) or scanned using

a STARscanner for the STARband. I'm so sorry he developed those

blisters. How is he doing in his helmet now?

I see you're in NC. There are 2 diff. Cranial Tech locations in NC.

Cranial Tech makes the DOCband and is one of the more commonly used

treatments discussed in our group. You can see their website

www.cranialtech.com Here are there 2 locations in NC with

addresses, clinicians & phone #'s from our group " database " . If

you'd feel more comfortable getting a 2nd opinion on your son's

headshape you should call them, esp if you're nearby, they provide

free evaluations/consultations and do not require a referral from a

Dr for this.

>>North Carolina DOCband* Cranial Technologies, Inc., 309 E.

Morehead St. Suite 280; Charlotte, NC 28202 Michele Hurni,

Klemm, Hendricks (704) 344-1290, (866) 344-1290

www.cranialtech.com

>>North Carolina DOCband* Cranial Technologies, Inc., 200

Meredith Dr. Suite 100; Hwy 55, Durham, NC 27713 a Sykes

(919) 361-9216, (866) 304-9216 www.cranialtech.com

We have several Brachycephaly babies in our group. There are some

helpful " severity assessment forms " for brachy babies in our " files "

section.

Best of luck, please keep us posted.

Debbie Abby's mom DOCGrad

MI

--- In Plagiocephaly , " newmomat40 " <newmomat40@y...>

wrote:

> Hi!

> I was surfing the web to find info on my son's plagio & was so

happy

> to find this group! I live in a large city & have only met 2 other

> people who have children wearing helmets.

> My son was not referred to be fitted for a helmet until he was 6

> months old. His pediatrician kept saying his case was not severe &

we

> had plenty of time, that we just needed to reposition him during

> sleep. When we finally insisted on be referred to NC Baptist

> Hospital, the dr in plastic surgery keeps stressing that we are

> running out of time as his fontanel is closing quickly. How could

> this happen? She also informed us that his case of brachiocphaly

((is

> that spelled right?) is severe & will take more time to correct

than

> most.

> Are there any other parents in the group who have kids wearing the

> helmet? I noticed that most are talking about the starband.

> The first visit to the hospital, my son was fitted within 15

minutes.

> The dr measured his head & brought a helmet in, tried it on him,

> adding strips of foam to customize it. He was not fitted by a cast

of

> his head. When he developed blisters on his head the next morning,

> the nurse told me to remove some of the foam strips.

> My question is: Can this method be as effective as the band that

> seems to be specially fitted for an individual child?

> Thanks for any help you can give me.

> I feel so bad that my little miracle baby is now going through

this.

[Guest guest]

I would be a little iffy about this too. I'd definitely take

Debbie's advice and do a free evaluation at CT just to get a second

opinion. With Hannah's helmet we've had to go every week or two to

have it adjusted and have had excellent correction. If you look on

the cranial tech website you can see how differently shaped the

helmets are. They have pressure points that are custom to the

specific baby's needs. Good luck and let us know what happens.

, mom to Hannah, DOCbanded 5/12 and 8/12

Cape Cod, Ma

--- In Plagiocephaly , " newmomat40 " <newmomat40@y...>

wrote:

> Hi!

> I was surfing the web to find info on my son's plagio & was so

happy

> to find this group! I live in a large city & have only met 2 other

> people who have children wearing helmets.

> My son was not referred to be fitted for a helmet until he was 6

> months old. His pediatrician kept saying his case was not severe &

we

> had plenty of time, that we just needed to reposition him during

> sleep. When we finally insisted on be referred to NC Baptist

> Hospital, the dr in plastic surgery keeps stressing that we are

> running out of time as his fontanel is closing quickly. How could

> this happen? She also informed us that his case of brachiocphaly

((is

> that spelled right?) is severe & will take more time to correct

than

> most.

> Are there any other parents in the group who have kids wearing the

> helmet? I noticed that most are talking about the starband.

> The first visit to the hospital, my son was fitted within 15

minutes.

> The dr measured his head & brought a helmet in, tried it on him,

> adding strips of foam to customize it. He was not fitted by a cast

of

> his head. When he developed blisters on his head the next morning,

> the nurse told me to remove some of the foam strips.

> My question is: Can this method be as effective as the band that

> seems to be specially fitted for an individual child?

> Thanks for any help you can give me.

> I feel so bad that my little miracle baby is now going through

this.

[Guest guest]

I just wanted to agree with the others...it does seem a little odd

that he was not casted for a customized helmet. I would call Cranial

Tech to get a second opinion, if you can. Those blisters just don't

sound right.

My daughter is 6.5 months old and has had her band for a little over

four weeks. She is brachy, too. CT didn't say that this

was " harder " to correct necessarily, and they don't believe she'll be

in it for longer than two or two and a half months. Jordyn's case is

moderate, but you could look at the severity assessment graphs in the

files section to help determine how severe his brachy is. Of course,

the more severe the brachy or the older the baby, the longer it would

take to correct.

& Jordyn (DOCband 10/13)

Dallas

--- In Plagiocephaly , " newmomat40 " <newmomat40@y...>

wrote:

> Hi!

> I was surfing the web to find info on my son's plagio & was so

happy

> to find this group! I live in a large city & have only met 2 other

> people who have children wearing helmets.

> My son was not referred to be fitted for a helmet until he was 6

> months old. His pediatrician kept saying his case was not severe &

we

> had plenty of time, that we just needed to reposition him during

> sleep. When we finally insisted on be referred to NC Baptist

> Hospital, the dr in plastic surgery keeps stressing that we are

> running out of time as his fontanel is closing quickly. How could

> this happen? She also informed us that his case of brachiocphaly

((is

> that spelled right?) is severe & will take more time to correct

than

> most.

> Are there any other parents in the group who have kids wearing the

> helmet? I noticed that most are talking about the starband.

> The first visit to the hospital, my son was fitted within 15

minutes.

> The dr measured his head & brought a helmet in, tried it on him,

> adding strips of foam to customize it. He was not fitted by a cast

of

> his head. When he developed blisters on his head the next morning,

> the nurse told me to remove some of the foam strips.

> My question is: Can this method be as effective as the band that

> seems to be specially fitted for an individual child?

> Thanks for any help you can give me.

> I feel so bad that my little miracle baby is now going through this.

[Guest guest]

Hi,

I just want to second everything Debbie has already said and welcome

you to the group.

> > Hi!

> > I was surfing the web to find info on my son's plagio & was so

> happy

> > to find this group! I live in a large city & have only met 2

other

> > people who have children wearing helmets.

> > My son was not referred to be fitted for a helmet until he was 6

> > months old. His pediatrician kept saying his case was not severe

&

> we

> > had plenty of time, that we just needed to reposition him during

> > sleep. When we finally insisted on be referred to NC Baptist

> > Hospital, the dr in plastic surgery keeps stressing that we are

> > running out of time as his fontanel is closing quickly. How could

> > this happen? She also informed us that his case of brachiocphaly

> ((is

> > that spelled right?) is severe & will take more time to correct

> than

> > most.

> > Are there any other parents in the group who have kids wearing

the

> > helmet? I noticed that most are talking about the starband.

> > The first visit to the hospital, my son was fitted within 15

> minutes.

> > The dr measured his head & brought a helmet in, tried it on him,

> > adding strips of foam to customize it. He was not fitted by a

cast

> of

> > his head. When he developed blisters on his head the next

morning,

> > the nurse told me to remove some of the foam strips.

> > My question is: Can this method be as effective as the band that

> > seems to be specially fitted for an individual child?

> > Thanks for any help you can give me.

> > I feel so bad that my little miracle baby is now going through

> this.

[Guest guest]

Hi and welcome to the group. I used to live in Winston-Salem and now

live in Cary, NC. My son was banded at 7.5 mos and we are using the

Cranial Technologies site in Durham. There is also one in

Charlotte. My husband has a good friend whose baby used a locally

made helmet of some type from Baptist in W-S and it worked well for

them. I know it was A LOT different than any of the bands/helmets

talked about on this site, and I don't believe they had any trouble

whatsoever w/ it. He wore it for 14 weeks, but was banded around 4

mos if I remember correctly. I would make sure you are seeing some

progress at least w/i the first month, and if not, then look into one

of the CT locations. At least you have options!! Good luck and feel

free to email me outside the group at kim.daeke@... if you

have any questions.

Kim--Gus' mom

DOC Band 8/21/03

--- In Plagiocephaly , " newmomat40 " <newmomat40@y...>

wrote:

> Hi!

> I was surfing the web to find info on my son's plagio & was so

happy

> to find this group! I live in a large city & have only met 2 other

> people who have children wearing helmets.

> My son was not referred to be fitted for a helmet until he was 6

> months old. His pediatrician kept saying his case was not severe &

we

> had plenty of time, that we just needed to reposition him during

> sleep. When we finally insisted on be referred to NC Baptist

> Hospital, the dr in plastic surgery keeps stressing that we are

> running out of time as his fontanel is closing quickly. How could

> this happen? She also informed us that his case of brachiocphaly

((is

> that spelled right?) is severe & will take more time to correct

than

> most.

> Are there any other parents in the group who have kids wearing the

> helmet? I noticed that most are talking about the starband.

> The first visit to the hospital, my son was fitted within 15

minutes.

> The dr measured his head & brought a helmet in, tried it on him,

> adding strips of foam to customize it. He was not fitted by a cast

of

> his head. When he developed blisters on his head the next morning,

> the nurse told me to remove some of the foam strips.

> My question is: Can this method be as effective as the band that

> seems to be specially fitted for an individual child?

> Thanks for any help you can give me.

> I feel so bad that my little miracle baby is now going through this.

[Guest guest]

Hi and welcome to the group! I hope you find the answers your

looking for.

Dustie

--- In Plagiocephaly , " newmomat40 " <newmomat40@y...>

wrote:

> Hi!

> I was surfing the web to find info on my son's plagio & was so

happy

> to find this group! I live in a large city & have only met 2 other

> people who have children wearing helmets.

> My son was not referred to be fitted for a helmet until he was 6

> months old. His pediatrician kept saying his case was not severe &

we

> had plenty of time, that we just needed to reposition him during

> sleep. When we finally insisted on be referred to NC Baptist

> Hospital, the dr in plastic surgery keeps stressing that we are

> running out of time as his fontanel is closing quickly. How could

> this happen? She also informed us that his case of brachiocphaly

((is

> that spelled right?) is severe & will take more time to correct

than

> most.

> Are there any other parents in the group who have kids wearing the

> helmet? I noticed that most are talking about the starband.

> The first visit to the hospital, my son was fitted within 15

minutes.

> The dr measured his head & brought a helmet in, tried it on him,

> adding strips of foam to customize it. He was not fitted by a cast

of

> his head. When he developed blisters on his head the next morning,

> the nurse told me to remove some of the foam strips.

> My question is: Can this method be as effective as the band that

> seems to be specially fitted for an individual child?

> Thanks for any help you can give me.

> I feel so bad that my little miracle baby is now going through this.

[Guest guest]

We've not had any guidance by the Doctors who treat our son, but self education

and the support of parents who have gone through it have helped us enormously. I

recommend DeFelice's book Enzymes for Autism. Good luck to you.

new to group

I am new to this group, I have a 2yr7month boy, who regressed at 18months, he

now only uses 4 words and has some autistic tendencies. I have been using the

CF/GF diet now for 3 months with very promising results. I have also cut out

yeast and sugar as harry has a candida problem which is yet untreated.

I must admit i am very confused after reading information regarding enyzymes,

as to where to start and if i should if the diet is partly working.

Do a parent use enyzme treatment themselves or are there specialist doctors

that help?

Any advice on how to start, would be greatly received

with thanks

jo davies

jo@...

[Guest guest]

Domenique,

Where in southern New Jersey are you located.

judi

[Guest guest]

judi

I'm in Burlington County

Domenique

Re: [ ] new to group

> Domenique,

> Where in southern New Jersey are you located.

> judi

>

>

[Guest guest]

We are in Salem County. Exit one NJ turnpike.

Judi

Re: [ ] new to group

> Domenique,

> Where in southern New Jersey are you located.

> judi

>

>

[Guest guest]

Hi Alan & welcome to our group!

It's great to have you with us. Yes the internet has helped soooo

many people out there, myself included!

GOOD for you not taking your dr's laid back approach to 's

torticollis and plagio & pursuing treatment and help for him! You

should be very proud of you.

We have several UK members in our group who are using Dr Blecher &

his helmet treatment for their baby's plagio. You should be in good

hands if you decide to get him a helmet. I've added " UK " to your

subject line to get those members attn to reply to you.

Welcome again, let us know how your appt goes with Dr. Blecher.

Debbie Abby's mom

MI USA

> Hi,

> Our son, was born 4th Aug 2003.

>

> After about 5 weeks we noticed that he always preferred sleeping on

> his left side I discussed this with the health visitor & she

> suggested encouraging him to look right with interesting toys etc.

&

> to bring it up with the doctor at his 8 wk check.

>

> We did this, only to be told not to worry & that there was nothing

> wrong with his neck. (the health visitor did mention torticollis -

> but I had never heard of this before). I knew that something was

> wrong & after a number of visits to the local doctors we managed to

> get a referral to the pediatrician - they diagnosed torticollis,

> recommended PT & said don't worry about the 'flat head' this would

> correct itself as grows.

>

> We could not wait for our NHS PT appointment, was 16 weeks

old

> by then & we were really getting frustrated that everything seemed

to

> take so long & his condition was not seen as a priority. We have

been

> stretching & re-positioning him ever since. However although his

ROM

> has improved he still prefers to sleep on his left & his flat spot

> has not really improved.

>

> We recently noticed his facial assymetry & went back to the Peds,

> again we were told that this condition was not a disease & that it

> would just correct as he grows.

>

> Luckily we found some info on the web & we have an appointment with

> Dr Blecher on the 12th Jan.

>

> We have found the whole process frustrating and that no-one is

> actively on 'our side'. The progress we have made seems to e 'in

> spite' of the advice we have received rather than beacause of it,

as

> far as the health professionals are concerned.

>

> Our concerns have tended to be dismissed as over anxiousness due

> first time parenthood. However we know there is a problem and are

> determined to pursue effective treatment

>

> The internet has proved a goldmine

>

> Alan & Josie ( & )

>

> Bedfordshire, UK

[Guest guest]

Hi---I wanted to just second your experience and feelings of frustration regarding this condition and the medical community. We went through this whole thing with the doctors a few months ago and it still concerns me that the medical community is so divided regarding tx. In one city, the docs recommend banding, in another (mine) they could not be more against it. I wonder if this is a medical phenomena that takes place as new conditions come into view---a lot of discrepancy in tx. recommendations. It is frustrating and I just want to let you know that you are not alone. I do have a belief in the medical community and I still find myself second guessing my decision to band my son. I'm always searching for proof that I made the right decision. I think I just wanted an MD of some type to recommend the band. In my experience in Tampa, FL, it never ended up happening, and my son was no mild case. I ended up asking for what I wanted and my ped. agreed. I always kinda wonder if the docs are snickering behind my back---but that is probably just my neuroses. Like most of us in this group, we just want what is best for our kids. Too bad it is so confusing. This group has been great and you will find a lot of support here. Maybe in another 10 years, banding will be more commonplace. I just don't know what is to be gained by not recommending treatment to children in need. I wish someone could explain to me who the heck benefits from that?

B.Mom to B.STARBand drop out 8/03DOCBand #1 9/4/03DOCBand #2 12/18/03Miami

[Guest guest]

Hi,

Welcome to the group! I've only heard great things about Dr. Blecher.

You'll be in very good hands. Please let us know how you make out on

the 12th.

> Hi,

> Our son, was born 4th Aug 2003.

>

> After about 5 weeks we noticed that he always preferred sleeping on

> his left side I discussed this with the health visitor & she

> suggested encouraging him to look right with interesting toys etc.

&

> to bring it up with the doctor at his 8 wk check.

>

> We did this, only to be told not to worry & that there was nothing

> wrong with his neck. (the health visitor did mention torticollis -

> but I had never heard of this before). I knew that something was

> wrong & after a number of visits to the local doctors we managed to

> get a referral to the pediatrician - they diagnosed torticollis,

> recommended PT & said don't worry about the 'flat head' this would

> correct itself as grows.

>

> We could not wait for our NHS PT appointment, was 16 weeks

old

> by then & we were really getting frustrated that everything seemed

to

> take so long & his condition was not seen as a priority. We have

been

> stretching & re-positioning him ever since. However although his

ROM

> has improved he still prefers to sleep on his left & his flat spot

> has not really improved.

>

> We recently noticed his facial assymetry & went back to the Peds,

> again we were told that this condition was not a disease & that it

> would just correct as he grows.

>

> Luckily we found some info on the web & we have an appointment with

> Dr Blecher on the 12th Jan.

>

> We have found the whole process frustrating and that no-one is

> actively on 'our side'. The progress we have made seems to e 'in

> spite' of the advice we have received rather than beacause of it,

as

> far as the health professionals are concerned.

>

> Our concerns have tended to be dismissed as over anxiousness due

> first time parenthood. However we know there is a problem and are

> determined to pursue effective treatment

>

> The internet has proved a goldmine

>

> Alan & Josie ( & )

>

> Bedfordshire, UK

[Guest guest]

I am really glad you managed to find Dr Blecher in time for effective treatment. I live in London and like you I kept being fobbed off by my doctor & health visitor. The NHS pediatrician I saw told me it would round out by the time by baby was one and if I didn't like it I could always put a hat on him.

I foolishly waited because I thought my doctors knew best !!!! I managed to find Dr Blecher and my son was fitted with a helmet at 14 months old.

Good luck with the treatment.

Trisha

Freddies mum

ayceeuk <mitten@...> wrote:

Hi,Our son, was born 4th Aug 2003. After about 5 weeks we noticed that he always preferred sleeping on his left side I discussed this with the health visitor & she suggested encouraging him to look right with interesting toys etc. & to bring it up with the doctor at his 8 wk check. We did this, only to be told not to worry & that there was nothing wrong with his neck. (the health visitor did mention torticollis - but I had never heard of this before). I knew that something was wrong & after a number of visits to the local doctors we managed to get a referral to the pediatrician - they diagnosed torticollis, recommended PT & said don't worry about the 'flat head' this would correct itself as grows.We could not wait for our NHS PT appointment, was 16 weeks old by then &

we were really getting frustrated that everything seemed to take so long & his condition was not seen as a priority. We have been stretching & re-positioning him ever since. However although his ROM has improved he still prefers to sleep on his left & his flat spot has not really improved. We recently noticed his facial assymetry & went back to the Peds, again we were told that this condition was not a disease & that it would just correct as he grows. Luckily we found some info on the web & we have an appointment with Dr Blecher on the 12th Jan. We have found the whole process frustrating and that no-one is actively on 'our side'. The progress we have made seems to e 'in spite' of the advice we have received rather than beacause of it, as far as the health professionals are concerned.Our concerns have tended to be dismissed as over anxiousness due first time parenthood. However

we know there is a problem and are determined to pursue effective treatmentThe internet has proved a goldmineAlan & Josie ( & )Bedfordshire, UKFor more plagio info

[Guest guest]

Welcome to the group! I'm so sorry for the frustration, many of us

have been right there with you. My ped dismissed my concerns for 9

months before I left and took matters into my own hands. The good

news for you is that Dr Blecher has an excellent reputation and your

son is still very young. I'm sure the outcome will be fantastic.

Good luck and keep us posted, Natasha

> Hi,

> Our son, was born 4th Aug 2003.

>

> After about 5 weeks we noticed that he always preferred sleeping on

> his left side I discussed this with the health visitor & she

> suggested encouraging him to look right with interesting toys etc.

&

> to bring it up with the doctor at his 8 wk check.

>

> We did this, only to be told not to worry & that there was nothing

> wrong with his neck. (the health visitor did mention torticollis -

> but I had never heard of this before). I knew that something was

> wrong & after a number of visits to the local doctors we managed to

> get a referral to the pediatrician - they diagnosed torticollis,

> recommended PT & said don't worry about the 'flat head' this would

> correct itself as grows.

>

> We could not wait for our NHS PT appointment, was 16 weeks

old

> by then & we were really getting frustrated that everything seemed

to

> take so long & his condition was not seen as a priority. We have

been

> stretching & re-positioning him ever since. However although his

ROM

> has improved he still prefers to sleep on his left & his flat spot

> has not really improved.

>

> We recently noticed his facial assymetry & went back to the Peds,

> again we were told that this condition was not a disease & that it

> would just correct as he grows.

>

> Luckily we found some info on the web & we have an appointment with

> Dr Blecher on the 12th Jan.

>

> We have found the whole process frustrating and that no-one is

> actively on 'our side'. The progress we have made seems to e 'in

> spite' of the advice we have received rather than beacause of it,

as

> far as the health professionals are concerned.

>

> Our concerns have tended to be dismissed as over anxiousness due

> first time parenthood. However we know there is a problem and are

> determined to pursue effective treatment

>

> The internet has proved a goldmine

>

> Alan & Josie ( & )

>

> Bedfordshire, UK

[Guest guest]

I see that you have received numreous replies already, but I wanted

to extend a warm welcome nonetheless. Please keep us posted on

's progress with Dr. Blecher's helmet. I have heard nothing

but good things about that treatment.

Best of luck!

- mom to Aidan

STARband 08/26/03 12/19/03

GR MI

> Hi,

> Our son, was born 4th Aug 2003.

>

> After about 5 weeks we noticed that he always preferred sleeping on

> his left side I discussed this with the health visitor & she

> suggested encouraging him to look right with interesting toys etc.

&

> to bring it up with the doctor at his 8 wk check.

>

> We did this, only to be told not to worry & that there was nothing

> wrong with his neck. (the health visitor did mention torticollis -

> but I had never heard of this before). I knew that something was

> wrong & after a number of visits to the local doctors we managed to

> get a referral to the pediatrician - they diagnosed torticollis,

> recommended PT & said don't worry about the 'flat head' this would

> correct itself as grows.

>

> We could not wait for our NHS PT appointment, was 16 weeks

old

> by then & we were really getting frustrated that everything seemed

to

> take so long & his condition was not seen as a priority. We have

been

> stretching & re-positioning him ever since. However although his

ROM

> has improved he still prefers to sleep on his left & his flat spot

> has not really improved.

>

> We recently noticed his facial assymetry & went back to the Peds,

> again we were told that this condition was not a disease & that it

> would just correct as he grows.

>

> Luckily we found some info on the web & we have an appointment with

> Dr Blecher on the 12th Jan.

>

> We have found the whole process frustrating and that no-one is

> actively on 'our side'. The progress we have made seems to e 'in

> spite' of the advice we have received rather than beacause of it,

as

> far as the health professionals are concerned.

>

> Our concerns have tended to be dismissed as over anxiousness due

> first time parenthood. However we know there is a problem and are

> determined to pursue effective treatment

>

> The internet has proved a goldmine

>

> Alan & Josie ( & )

>

> Bedfordshire, UK

[Guest guest]

Welcome to the group. Please let us know how your son's sppointment goes on the 12th. I have heard wonderful things about Dr. Blecher.

Angie and Jenna(STARband grad 1/21/03)

New to Group

Hi,Our son, was born 4th Aug 2003. After about 5 weeks we noticed that he always preferred sleeping on his left side I discussed this with the health visitor & she suggested encouraging him to look right with interesting toys etc. & to bring it up with the doctor at his 8 wk check. We did this, only to be told not to worry & that there was nothing wrong with his neck. (the health visitor did mention torticollis - but I had never heard of this before). I knew that something was wrong & after a number of visits to the local doctors we managed to get a referral to the pediatrician - they diagnosed torticollis, recommended PT & said don't worry about the 'flat head' this would correct itself as grows.We could not wait for our NHS PT appointment, was 16 weeks old by then & we were really getting frustrated that everything seemed to take so long & his condition was not seen as a priority. We have been stretching & re-positioning him ever since. However although his ROM has improved he still prefers to sleep on his left & his flat spot has not really improved. We recently noticed his facial assymetry & went back to the Peds, again we were told that this condition was not a disease & that it would just correct as he grows. Luckily we found some info on the web & we have an appointment with Dr Blecher on the 12th Jan. We have found the whole process frustrating and that no-one is actively on 'our side'. The progress we have made seems to e 'in spite' of the advice we have received rather than beacause of it, as far as the health professionals are concerned.Our concerns have tended to be dismissed as over anxiousness due first time parenthood. However we know there is a problem and are determined to pursue effective treatmentThe internet has proved a goldmineAlan & Josie ( & )Bedfordshire, UKFor more plagio info

[Guest guest]

In a message dated 07/01/2004 13:49:12 Central Standard Time,

Thotful560@... writes:

> I am a cook, and I must be able to lift and carry 40-50 lb cases of

> produce, etc. YIKES!!

> Thanks,

>

>

>

Hi

I am also seronegative and a nurse in a hospital. I have to lift/move/roll

patients, adults. Sometimes it is reallyreally hard. I get very tired and I

hurt. But the meds I'm on are helping me, and I have to work, so I'm still at

it. I have some joint deformities from the RA, mainly in my feet and a little

in my hands. Pain in many joints. The course of the RA is so different for

everyone, and that will tell you what you are able to handle physically. I

take more sick days sometimes than my coworkers. My boss is pretty

understanding, which also helps. I guess what I am saying is hang in there and

hopefully

you'll find a med combination that will keep you functional.

Good luck........Cary