Re: Upset and undecided

[Guest guest]

You will soon find out that a lot of parents have gone through the same experience and the sad part is that many more will.

In my case, I noticed Maysa's flattening when she was 6 weeks old. At her 2 months check up, the doctor told us not to worry. It will round out she said. Just lay her on the opposite side. She didn't even refer her to PT, although she had torticollis. At 4 months, her plagio turned into brachy but still no doctor would prescribe her a band and we saw 4 or 5. Our story is long and I won't get into the details here but it's not until we got her a DOC band when she turned 9.5 months that we actually started seeing her head round out. She wore two DOC bands for a total of 7.5 months and I couldn't be happier that she did. Her plagio is all gone, I would say. You can't see any asymmetry in her forehead, ears or back of her head. I can still see the brachy though but it is nowhere close to what it used to be and most importantly, her head looks round in the back where it used to be as flat as a

book.

By the way, I had to cry in front of her ped for her to finally give me a prescription for a DOC band. Also, nobody could see or honestly tell me that there was anything wrong with her head shape, not even my husband at first, and she had mild plagio and severe brachy.

You can read more about Maysa's story on her blog at www.mymaysa.wordpress.com I just want you to know that you are not alone but that if it is bothering you and your wife to act upon it now before it is really too late. Maysa's plagio was at 8mm or so and it was definitely noticeable to me. With 12mm, I think that it would be even more so.

Good luck,

Leila,Maysa, 23.5 mo, DOC band Grad 5.26.09www.mymaysa.wordpress.com

From: john_and_lincoln <johnrd007@...>Subject: Upset and undecidedPlagiocephaly Date: Wednesday, January 6, 2010, 12:01 AM

My wife had been repeatedly asking our doctor about our son's flat spot on his head, including making a special appointment at 3 months, and we were told not to worry that it would get better as he began to sit more. Well, my wife went in at 8 months and saw a younger new doc who sent us to Physical Theraphy. PT then sent us to Cranial Tech. We were told that he has plagiocephaly with a 12mm difference. They suggested that we get the band. We talked to our regular pediatrician who told us that he wouldn't get the band if it was his kid. Nobody seems to notice the difference, except my wife and I, and even then it doesn't seem that bad. I'm totally confused and upset

[Guest guest]

Hi,

I read your story and it sounds like so many on this board, including mine. I want to say though I was aware of plagio and was repositioning my daughter from birth, but it didn't work. In fact, I first noticed that my daughter favored her right side around 2 months and was told she's just favoring that side and try to move her to the left. Although my daughter does not have tort, she did have vertebrae that were out of alignment causing a pinching sensation making her revert to her right. By three months I asked again about her head and our physician told us more tummy time and keep her off her back and I believed him. By four-five months, I noticed that tummy time was not improving it. A friend told me about Cranial Tech and they measured her with moderate/severe plagio at 17mm CVA using hand measurements with 1-2mm off with asymmetry. Her ears are off as well. She did not display Brachy. I thought by convincing my doctor that I wasn't nuts he would provide a script, but he refused. I went to three other physicians (neurosurgeons and craniofacial) who told me no she doesn't need it. I then took matters into my own hands. I realized that I had a short window of opportunity for any improvement and decided to aggressively reposition her (I mean waking every hour to make sure she was going from one side to the other), refused to use a stroller (I wore her in a carrier on my front) or carseat (unless it was needed), more tummy time and playtime up and about and obtained the care of a chiropractor. After x-rays were taken by a CHIROPRACTOR and not a physician (even though I asked for a PT evaluation), they determined that she did in fact have something going on with her cervical spine and she was unable to lift the right arm past her shoulder. We started treatment with CST thrown in. Today at 9 months, I sit here wondering if I should continue with a band because I received a scarscanner report and my daughter's asymmetry is down to 95% overall, 97.8% for upper head, 3.5CVAI(this is not a typo), 5.5mm ear offset, and 103.3mm for head height. The reality is there is some asymmetry, but it's soo mild that I think that I'm the only one that notices it. The ears are also on the same plane, but off a bit. I'm not even sure a helmet would correct the ears now. I asked the ortho to take measurements of my head and i'm quite off too, inc my ears at 4mm so I tend to wonder how much is genetics now and how much is plagio.

What would other parents do with these numbers? It's still present and still obvious to me, but the average person doesn't even notice it.

As for your son, follow your heart as to what you think is best for your son. Only the parent knows what is best for their son/daughter. If you still need a script, there are plenty of physicians out there that will still write one. I managed to get one from my pediatrician after begging him to do something while we still had time. It turns out, while I fixated on it, it became mild/moderate and I barely noticed. However, I still have to decide either way. My point is enjoy your son too. Don't obsess about his head. This is minor compared to what so many other parents go through, even though we may feel it's the end of the world.

However, I do have to admit I feel like the medical profession as a whole failed my daughter. Her pediatrician laughed it off, neurosurgeons, etc. I had to fight her pediatrician for a referral and then got laughed at for my inexperience as a parent by a neurosurgeon(not literally laughed at but talked down to like it was no big deal). I'm mad at the hospitals for not providing new parents with data about repositioning and to keep them off their back or that when you have a c-section you're more at risk for the baby having spinal alignment problems, esp. if the child is a larger baby. She was also at risk due to the fact that I was unable physically to lift her for a good four weeks until I got better. I'm now on a campaign to get better information to our local hospitals. Before we're discharged here, we were required to watch a video on SIDS and shaken baby syndrome. I can't imagine another better video than about mishapen heads and repositioning.

I wish you the best of luck with your son, but know that there are countless parents on this board that have endured the same thing. You are not alone in this journey.

Upset and undecided

My wife had been repeatedly asking our doctor about our son's flat spot on his head, including making a special appointment at 3 months, and we were told not to worry that it would get better as he began to sit more. Well, my wife went in at 8 months and saw a younger new doc who sent us to Physical Theraphy. PT then sent us to Cranial Tech. We were told that he has plagiocephaly with a 12mm difference. They suggested that we get the band. We talked to our regular pediatrician who told us that he wouldn't get the band if it was his kid. Nobody seems to notice the difference, except my wife and I, and even then it doesn't seem that bad. I'm totally confused and upset

[Guest guest]

I totally agree with Leila, you will find many similar experiences on here.

I am so glad that you have contacted this group. My family's story is very close

to yours. My daughter Zoey was born with a severe conehead that never totally

rounded out. At 2 months I was getting concerned and began doing research on

flat heads. I leanred about Plagio and how we could try repositioning to help it

round out. We did that for a couple months and saw VERY little improvement. Her

head was still noticeably flat on the back right side.

At every well-baby appt I asked the ped about her head and his response was the

same as almost all docs you will read about here. He said it is not abnormal for

kids' heads to be flat the first few months and that it will round out on its

own.

It was at 7 months that I decided I would get her head fixed regardless of what

it took. Our main reasons for getting the band were self-esteem issues down the

road. I pictured her coming to me at 9 years old crying because her head looks

weird in a ponytail. Or not wanting to swim with her friends because people

would notice that her head is flat when she gets her hair wet. Or Zoey having a

hard time finding sunglasses that fit, and not wanting to wear headbands.

I also had concerns about possible developmental delays and safety issues like

not being able to find a bike or snowboarding helmet that fit well.

The process to actually getting the band is a long story but we are so glad that

we have gone through it all. Zoey has 12mm difference which is considered a

moderate case. She has had her band for a few days and seems to be adjusting

well.

For us, what t came down to was our parental instinct. If you feel there is

something not right, then do what you can to right it. Most drs aren't educated

enough on this so it is our responsibility to advocate for our children. I can

only imagine how terrible we would have felt to have her come up to us in

several years asking why we didn't fix her head. By then it would be too late.

You may also want to take a look at the group called Old Plagiocephaly. It

is a group of parents that either did not have the option or chose not to get a

band. The group gives them an outlet to share their regret and guilt about their

kids still having plagio. I know this helped me finally choose to band.

Please keep us updated on what you choose and always feel free to ask any of us

for more information.

-

Zoey 8.5 months STARband for 3 days

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> From: john_and_lincoln <johnrd007@...>

> Subject: Upset and undecided

> Plagiocephaly

> Date: Wednesday, January 6, 2010, 12:01 AM

>

>

>  

>

>

>

> My wife had been repeatedly asking our doctor about our son's flat spot on his

head, including making a special appointment at 3 months, and we were told not

to worry that it would get better as he began to sit more. Well, my wife went in

at 8 months and saw a younger new doc who sent us to Physical Theraphy. PT then

sent us to Cranial Tech. We were told that he has plagiocephaly with a 12mm

difference. They suggested that we get the band. We talked to our regular

pediatrician who told us that he wouldn't get the band if it was his kid. Nobody

seems to notice the difference, except my wife and I, and even then it doesn't

seem that bad. I'm totally confused and upset

>

[Guest guest]

In my opinion 12mm is significant and worth getting a band for.  At that much difference and your son's age, there's not going to be much if any self correction.   Does your son also have torticollis?  That often causes plagio and can be resolved with PT.  It's important to address the tort, but PT won't do anything for the plagio itself.  It's a hard place to be in.  Take a couple days to research options and go with your gut.  There's a good chance his head will never get better on it's own.  In fact if tort is present and he continues to sleep on the flat spot it could worsen a bit yet.  If it never gets any better than it is today, are you ok with that?  Do you think he will be?  If you have any doubt, I would treat it while you have the opportunity.

Elaine (twin A), 20mos, grad 6/09 after 2 helmetsOn Wed, Jan 6, 2010 at 12:01 AM, john_and_lincoln <johnrd007@...> wrote:

 

My wife had been repeatedly asking our doctor about our son's flat spot on his head, including making a special appointment at 3 months, and we were told not to worry that it would get better as he began to sit more. Well, my wife went in at 8 months and saw a younger new doc who sent us to Physical Theraphy. PT then sent us to Cranial Tech. We were told that he has plagiocephaly with a 12mm difference. They suggested that we get the band. We talked to our regular pediatrician who told us that he wouldn't get the band if it was his kid. Nobody seems to notice the difference, except my wife and I, and even then it doesn't seem that bad. I'm totally confused and upset

[Guest guest]

Leila,

Can you please share what Maysa's measurements were at her Docband graduation? I could not find it on your website! Thank you!

Kim

KIM DAVIS, PH.D.

Clinical Psychologist, PSY 21796

Individual, Couples, Adolescent & Child Psychotherapy

16055 Ventura Boulevard, Suite 1033

Encino, California 91436

(310) 281-6645

drkimdavis@...

IMPORTANT WARNING: This email (and any attachments) is only intended for the use of the person or entity to which it is addressed, and may contain information that is privileged and confidential. You, the recipient, are obligated to maintain it in a safe, secure and confidential manner. Unauthorized disclosure or failure to maintain confidentiality may subject you to federal and state penalties. If you are not the intended recipient, please immediately notify us by return email, and delete this message from your computer.

[Guest guest]

Hi Kim,

Here is the link to the post about her graduation: http://mymaysa.wordpress.com/2009/05/26/maysa-graduates-at-last/. At the bottom of the post you will see a chart with her numbers before she started treatment with the DOC band in 10/08 and her graduation numbers on 5/09. Those were hand measurements only and I would really like to take her back to Orthomerica for one final scan. I feel like their measurements are more accurate.

Leila,Maysa, 23.5 mo, DOC band Grad 5.26.09www.mymaysa.wordpress.com

From: Kim , PhD <drkimdavis@...>Subject: Re: Upset and undecidedPlagiocephaly Date: Wednesday, January 6, 2010, 11:47 PM

Leila,

Can you please share what Maysa's measurements were at her Docband graduation? I could not find it on your website! Thank you!

Kim

KIM DAVIS, PH.D.

Clinical Psychologist, PSY 21796

Individual, Couples, Adolescent & Child Psychotherapy

16055 Ventura Boulevard, Suite 1033

Encino, California 91436

(310) 281-6645

drkimdavis@drkimdav is.com

IMPORTANT WARNING: This email (and any attachments) is only intended for the use of the person or entity to which it is addressed, and may contain information that is privileged and confidential. You, the recipient, are obligated to maintain it in a safe, secure and confidential manner. Unauthorized disclosure or failure to maintain confidentiality may subject you to federal and state penalties. If you are not the intended recipient, please immediately notify us by return email, and delete this message from your computer.