DOC band buddy in Chicago

May 12, 2010

Hi all,

First off, I just want to say how happy I am that this group exists! It puts our

minds at ease that there are other people out there fighting pediatricians who

don't take you seriously when you mention plagio, and that helmets do work.

We're having our first appointment for our 4-month daughter Ella with Cranial

Tech in Glenview, Chicago on 5/13. I'm just wondering if there's anybody else in

this group who lives in Chicago and has started the band recently (or will start

soon). We would love to connect with others who are going through the same

situation and share thoughts, experiences, etc(our story is below).

Thank you,

Ana

Our story

Ella (4.5 m.o.) has developed plagio on the right side of her head since she was

2 weeks old. She really favored sleeping on her right side but since we had no

idea what could happen, we let her sleep that way.

At the two-week check up the pediatrician noticed the flat spot, but said it

would correct with tummy time, and he also said he had never recommended helmets

to any of his patients. So we went home assured that things would get better.

Fast forward a few weeks and we started to get really concerned about the flat

spot - it was getting worse. She was favoring the right side more than ever, she

could barely turn her head to the left.

At the two month check up, the pediatrician again reassured us that she was fine

although we noticed that the situation was getting much worse with each passing

week. Solution? Lots of tummy time as if 15 minute a day on her tummy (Ella

doesn't really like being on her tummy, despite our best efforts to keep her

interested) would balance off 15 hours of sleep on her right side. We asked the

dr. if Ella had torticollis but she said she didn't.

A few weeks later were getting very anxious and decided to see a pediatric

neurosurgeon. He said the plagio was mild but noticed she had torticollis albeit

mild. So he referred us to a physical therapist who has helped Ella

tremendously. In 5 or so weeks, she's gained almost 100% of the neck muscle

strength which allows her to keep her head very steady and we can keep her in a

Baby Bjorn carrier a few hours a day to take some of the pressure on her head.

Despite making great strides at PT, her plagio improved very, very little, so at

a recent follow up visit with the neurosurgeon he recommended that we get the

helmet. Coincidentally, she had her 4-month shots the next day and we mentioned

our decision to the dr. who went from being cheerful to being very defensive. He

said he was against the bands and that heads round up (the usual story). What

really upset us was the fact that he, AGAIN!, did not take our concerns

seriously. " Her hair will grow and she'll never notice, " he said. We were just

flabbergasted - how can a pediatrician, presumably concerned with the well being

of a child (both physical and psychological), say such a ridiculous thing?

Anyways, we're having our first appointment at Cranial Tech on 5/13 and we'll

see how that goes. I just wanted to vent our frustration which, all to often,

seems to be the story of thousands of concerned parents.

May 12, 2010

Hi Ana,

Your story sounds very similar to ours unfortunately. We are in Chicago, north

side of the city in Lakeview (mother in Law lives in Northbrook close to you).

My son is 4 months old and has severe plagio (18mm) and severe brachy (96.1%),

and just an overall funky head shape:( We too noticed fairly early on and

mentioned it to our ped, whom I love by the way. But were given the same song

and dance and was told to turn him to the other side when sleeping. We did that

for 2 months and it got worse! Long story short, I went around him and went to

CT on my own, did the evaluation and he reluctantly issued the script for the

band. We went today for the DSI and will get the band next Wed. Oddly enough we

had our 4 month visit just before the DSI apt and our ped was still very pro

" non-banding " saying he did not feel there were any studies to support the

bands, blah, blah, blah. Whilke he still supported our decision he did let us

know how he really feels- Honestly, had I not done the research myself I

probably would have fallen for his theory.

I believe pur son did have tort to a certain degree but he worked it out on his

own. After we started turning him the other way for sleeping we saw a big

improvement. But he definitely did favor the left side when looking at things,

etc. But we just thought it was a preference. His doc does not feel like he has

tort any longer, if he did at all. Still not sure. He also has a very tought

labor and was head down for several weeks in utero as he came out with a

sideways cone that never really went away.

So anyway, I am happy to stay in touch! I am certainly not looking forward to

the band but I have a huge sense of relief that something is being done, no more

guessing, etc.

Good luck at your appointment tomorrow they are really great. Are you going to

the Skokie office?

Tammi

>

> Hi all,

>

> First off, I just want to say how happy I am that this group exists! It puts

our minds at ease that there are other people out there fighting pediatricians

who don't take you seriously when you mention plagio, and that helmets do work.

>

> We're having our first appointment for our 4-month daughter Ella with Cranial

Tech in Glenview, Chicago on 5/13. I'm just wondering if there's anybody else in

this group who lives in Chicago and has started the band recently (or will start

soon). We would love to connect with others who are going through the same

situation and share thoughts, experiences, etc(our story is below).

>

> Thank you,

> Ana

>

> Our story

>

> Ella (4.5 m.o.) has developed plagio on the right side of her head since she

was 2 weeks old. She really favored sleeping on her right side but since we had

no idea what could happen, we let her sleep that way.

>

> At the two-week check up the pediatrician noticed the flat spot, but said it

would correct with tummy time, and he also said he had never recommended helmets

to any of his patients. So we went home assured that things would get better.

Fast forward a few weeks and we started to get really concerned about the flat

spot - it was getting worse. She was favoring the right side more than ever, she

could barely turn her head to the left.

>

> At the two month check up, the pediatrician again reassured us that she was

fine although we noticed that the situation was getting much worse with each

passing week. Solution? Lots of tummy time as if 15 minute a day on her tummy

(Ella doesn't really like being on her tummy, despite our best efforts to keep

her interested) would balance off 15 hours of sleep on her right side. We asked

the dr. if Ella had torticollis but she said she didn't.

>

> A few weeks later were getting very anxious and decided to see a pediatric

neurosurgeon. He said the plagio was mild but noticed she had torticollis albeit

mild. So he referred us to a physical therapist who has helped Ella

tremendously. In 5 or so weeks, she's gained almost 100% of the neck muscle

strength which allows her to keep her head very steady and we can keep her in a

Baby Bjorn carrier a few hours a day to take some of the pressure on her head.

>

> Despite making great strides at PT, her plagio improved very, very little, so

at a recent follow up visit with the neurosurgeon he recommended that we get the

helmet. Coincidentally, she had her 4-month shots the next day and we mentioned

our decision to the dr. who went from being cheerful to being very defensive. He

said he was against the bands and that heads round up (the usual story). What

really upset us was the fact that he, AGAIN!, did not take our concerns

seriously. " Her hair will grow and she'll never notice, " he said. We were just

flabbergasted - how can a pediatrician, presumably concerned with the well being

of a child (both physical and psychological), say such a ridiculous thing?

>

> Anyways, we're having our first appointment at Cranial Tech on 5/13 and we'll

see how that goes. I just wanted to vent our frustration which, all to often,

seems to be the story of thousands of concerned parents.

>

May 13, 2010

Hello!

My daughter Jillian is 7 months and she got her band 4/29. We are going to the

Oakbrook location (we live in the western suburbs). The band has been good for

her, she is rolling more and it does not seem to bother her. We are currently

on a " break " from the band as she developed a red spot that got worse, and the

PT did not seem too concerned. I brought her back and they said to have her not

wear the band until that spot heals. Bit frustrating as I think she is going

through a growth spurt AND the spot was mentioned... Oh well, no use crying

over spilled milk. Other than that, CT has been great and the band does not

bother her. It too me more time to get used to it than it took her.

In regards to her doctors, I mentioned my concern at her 3 month appointment,

the doctor recommended re-positioning and more tummy time to round it out. At

her 6 month, I did not feel it had improved at all and mentioned it to the

doctor (different doctor, same " group " ). She gave me the info for CT and

Childrens'. I really wish I would have gotten her into a band earlier, but as

she is my first, I trusted the doctors.

Anyway, that is our story in a nutshell.

Good luck! You will have to keep us posted on her progress!

Christy

Mom to Jillian 7 (almost 8) months