Re: New Member- Tell Me I'm Not Crazy

[Guest guest]

>

> ever since my 3 month old was born, I have been asking the

> pedicatrician why his head is shaped strangely. He has always blown

me

> off. Well, yesterday was his 2 month check, I know it was a month

> late, and the nurse measured his head at 15.5. They plotted it wrong

> (on the 2 month instead of 3 month). So after I got home and did it

> online, saw that his HC was on the 5th percentile, and spent all

night

> long worrying about what could be wrong, i took him back to the dr

> this morning and asked them to remeasure it. They wouldnt let me in

> the room, then came out and said it was in the 20th percentile but

> would not tell me the measurement. I asked the dr AGAIN about the

> shape of his head and he said " well some people just have funny

shaped

> heads. "

>

> Today I found pictures that I think match my son completely.

Pictures

> of triconcephaly. I called the dr back and left a message for him to

> call me monoday morning as I want a referral to a neurologist. We do

> not have any cranio facial doctors in this area.

>

> I don't know if I could post pics or not, but I thought some of you

> might be able to tell me if I am overeacting or if you notice

anything

> different about the shape of my son's head.

>you absoloutly are NOT over reacting nd do not let the dr tell u

different if he wont give u a referral find a dr who will. we went

through that and now our daughter is 7 months old and will just be

getting her helmet in about a week she is getting a late start

because the dr said dont worry about it. So go for it be pushy u are

the parent and u know when something is not right. GOOD LUCK and

remember dont take no for an answer.

Siobhan mommy of le

[Guest guest]

You are certainly not crazy. I can't tell you how many moms post that

their doc won't take their concern seriously. If it is cranio then it

is essential that your baby be evaluated to see if it is causing

excess pressure on the brain (or may in the future). Plagio should

also be take seriously, but it isn't as serious.

Plagio has increased dramatically since the back-to-sleep campaign, so

it isn't that some people just have funny shaped heads. It is that

back sleeping and time in bouncy seats, car seats and swings can

deform the head. I don't know why some doctors don't get it.

You need to find a new doctor who will take this seriously! Where do

you live? Maybe someone can recommend a doctor within a reasonable

distance. Please let us know what happens next, and keep pushing until

you get someone who will seriously look into this. I would be happy to

give my (non-expert) opinion if you can post some pics.

take care. -christine

sydney 20 mo starband grad

>

> ever since my 3 month old was born, I have been asking the

> pedicatrician why his head is shaped strangely. He has always blown me

> off. Well, yesterday was his 2 month check, I know it was a month

> late, and the nurse measured his head at 15.5. They plotted it wrong

> (on the 2 month instead of 3 month). So after I got home and did it

> online, saw that his HC was on the 5th percentile, and spent all night

> long worrying about what could be wrong, i took him back to the dr

> this morning and asked them to remeasure it. They wouldnt let me in

> the room, then came out and said it was in the 20th percentile but

> would not tell me the measurement. I asked the dr AGAIN about the

> shape of his head and he said " well some people just have funny shaped

> heads. "

>

> Today I found pictures that I think match my son completely. Pictures

> of triconcephaly. I called the dr back and left a message for him to

> call me monoday morning as I want a referral to a neurologist. We do

> not have any cranio facial doctors in this area.

>

> I don't know if I could post pics or not, but I thought some of you

> might be able to tell me if I am overeacting or if you notice anything

> different about the shape of my son's head.

>

[Guest guest]

I posted a few photos in an album so maybe some of you could give me

your two cents. Like I said I am not concerned so much with

plagiocephaly as with trigoncephaly for which he could not wear a

helmet, surgery is the only option. You can see the ridge in the

middle of his forehead, in fact the flash bounces off of it. Also, his

head seems to be egg shaped. I might also mention that he has a very

small pointy chin and I can barely feel the sockets of his eyes. i

don't know if that is normal or not.

Thanks for looking and offering your opinion whether I should have him

evaulated further.

http://health.ph./group/Plagiocephaly/photos/browse/2d8f

[Guest guest]

I would go to a cranial facial Dr or a Neurosurgeon to get a 2nd

opinion. I looked at the pics, and am concerned a little about the

ridge and the pinching around his temples. He may in fact be ok, but

those are both possible signs of cranio, which does require surgery.

My Daughter had tort and plagio and also has a metopic ridge (the

boney ridge down her forehead), but it is not very prominant and also

she didn't have the pinching around the temples.

Let us know how it goes. Don't let the Dr bully you. MAKE him give

you a referral if you need one for your Insurance. (make sure your

Ins needs a referall to go to a specialist, some don't even need that)

Jen

(3 yrs), tort resolved, Hanger Band Grad

(5 1/2 yrs)

>

> ever since my 3 month old was born, I have been asking the

> pedicatrician why his head is shaped strangely. He has always blown

me

> off. Well, yesterday was his 2 month check, I know it was a month

> late, and the nurse measured his head at 15.5. They plotted it wrong

> (on the 2 month instead of 3 month). So after I got home and did it

> online, saw that his HC was on the 5th percentile, and spent all

night

> long worrying about what could be wrong, i took him back to the dr

> this morning and asked them to remeasure it. They wouldnt let me in

> the room, then came out and said it was in the 20th percentile but

> would not tell me the measurement. I asked the dr AGAIN about the

> shape of his head and he said " well some people just have funny

shaped

> heads. "

>

> Today I found pictures that I think match my son completely.

Pictures

> of triconcephaly. I called the dr back and left a message for him to

> call me monoday morning as I want a referral to a neurologist. We do

> not have any cranio facial doctors in this area.

>

> I don't know if I could post pics or not, but I thought some of you

> might be able to tell me if I am overeacting or if you notice

anything

> different about the shape of my son's head.

>

[Guest guest]

It seems odd to me that they wouldn't answer your simple questions

regarding measurements and that they wouldn't let you in the room.

Something seems very wrong about that. I would switch peds. You

can always go to CT or another band provider for a consult to get

measurements. Even though it sounds they aren't in your area, it

may be worth traveling. Maybe they could refer you to a pro-band

doctor or send the measurements to your current ped. Also, don't

let 5th percentile or 20th percentile worry you. The important

thing is that your child is growing consistant with their

percentile. For example, if your child had been growing at the 5th

percentile and all of a sudden jumped to 50th there may be cause for

concern. Every baby has their own growth pattern. Good luck in

finding a new ped....one that listens to your concerns.

lisa

PS: YOu can post pics. One of the moderators could help explain

how.

> >

> > New Member- Tell Me I'm Not Crazy

> >

> >

> >

> >

> >

> >

> > ever since my 3 month old was born, I have been asking the

> > pedicatrician why his head is shaped strangely. He has always

blown

> me

> > off. Well, yesterday was his 2 month check, I know it was a month

> > late, and the nurse measured his head at 15.5. They plotted it

wrong

> > (on the 2 month instead of 3 month). So after I got home and did

it

> > online, saw that his HC was on the 5th percentile, and spent all

> night

> > long worrying about what could be wrong, i took him back to the

dr

> > this morning and asked them to remeasure it. They wouldnt let me

in

> > the room, then came out and said it was in the 20th percentile

but

> > would not tell me the measurement. I asked the dr AGAIN about the

> > shape of his head and he said " well some people just have funny

> shaped

> > heads. "

> >

> > Today I found pictures that I think match my son completely.

> Pictures

> > of triconcephaly. I called the dr back and left a message for

him to

> > call me monoday morning as I want a referral to a neurologist.

We do

> > not have any cranio facial doctors in this area.

> >

> > I don't know if I could post pics or not, but I thought some of

you

> > might be able to tell me if I am overeacting or if you notice

> anything

> > different about the shape of my son's head.

> >

> >

> >

> >

> >

> >

>

_____________________________________________________________________

_

> __

> > Email and AIM finally together. You've gotta check out free AOL

> Mail! - http://mail.aol.com

> >

>

[Guest guest]

Like you said his head does appear egg shaped. Does he have plagio

or just the trigoncephaly? I haven't heard of the trigoncephaly. I

do see what you are talking about with his forehead. I would go to

a neurologist or CT or another band provider. I'm not sure about

the eyes...they look pretty normal to me but I would think you

should be able to feel the sockets. Good luck.

>

> I posted a few photos in an album so maybe some of you could give

me

> your two cents. Like I said I am not concerned so much with

> plagiocephaly as with trigoncephaly for which he could not wear a

> helmet, surgery is the only option. You can see the ridge in the

> middle of his forehead, in fact the flash bounces off of it. Also,

his

> head seems to be egg shaped. I might also mention that he has a

very

> small pointy chin and I can barely feel the sockets of his eyes. i

> don't know if that is normal or not.

>

> Thanks for looking and offering your opinion whether I should have

him

> evaulated further.

>

>

http://health.ph./group/Plagiocephaly/photos/browse/2

d8f

>

[Guest guest]

I looked at your pics before I looked at what trigoncephaly is. I

looked at them again after looking up trigoncephaly. From a non-

expert opinion, I would agree with you that trigocephaly is a

possibilitiy. His forehead is idented on both sides as well. I

would definitely have him evaluated to be sure. If you post where

you live, maybe someone her can give a good recommendation.

>

> I posted a few photos in an album so maybe some of you could give

me

> your two cents. Like I said I am not concerned so much with

> plagiocephaly as with trigoncephaly for which he could not wear a

> helmet, surgery is the only option. You can see the ridge in the

> middle of his forehead, in fact the flash bounces off of it. Also,

his

> head seems to be egg shaped. I might also mention that he has a

very

> small pointy chin and I can barely feel the sockets of his eyes. i

> don't know if that is normal or not.

>

> Thanks for looking and offering your opinion whether I should have

him

> evaulated further.

>

>

http://health.ph./group/Plagiocephaly/photos/browse/2

d8f

>

[Guest guest]

Hi, His head is definitely a little different than most I've seen. I

would push for a referral to a neuro. No matter what happens I would

start looking for a new ped. Please let us know what you find out.

Also there is a cranio organization called cappskids.org that you

should check out.

take care. -christine

sydney 20 mo starband grad

>

> I posted a few photos in an album so maybe some of you could give me

> your two cents. Like I said I am not concerned so much with

> plagiocephaly as with trigoncephaly for which he could not wear a

> helmet, surgery is the only option. You can see the ridge in the

> middle of his forehead, in fact the flash bounces off of it. Also, his

> head seems to be egg shaped. I might also mention that he has a very

> small pointy chin and I can barely feel the sockets of his eyes. i

> don't know if that is normal or not.

>

> Thanks for looking and offering your opinion whether I should have him

> evaulated further.

>

> http://health.ph./group/Plagiocephaly/photos/browse/2d8f

>

[Guest guest]

I agree, this does look to be a case where you cannot let your

doctor manipulate the situation.

My now 15-mo old always has the bony ridge in his forehead and I

didn't pay attention to it at first, pedia didn't notice either.

What Dr always ignored was the plagio. As I was doing research on

plagio, I came across craniosynostosis. I went to see the Dr

immediately to get a consult - and Dr referred us to get a skull

xray. When the results came out - Dr said there were no signs of

complete closure of the metopic sutures. My son did not have pinched

temples, just a ridge on the forehead.

Mind you - I had sleepless nights reading up about this condition,

I'd cry once in a while, because the only solution for this is

surgery, couldn't bear to see my son go through this. I even told my

boss that I am likely going to take a leave contingent on my son's

diagnosis.

I was still not convinced, so since I had an upcoming appointment

with an orthopedist (Dr Cunningham, Children's) about my

son's head tilt - I took the xrays with us and showed him. He didn't

see any issues with it.

Then I took my son to a pedia neurosurgeon (Dr Krieger - Children's

Hospital LA) - via a self-referral since it was taking forever for

our pedia to do this, I just had the pedia's office fax notes from

our recent visits. I also showed him the xrays and didn't see

anything requiring further surgery for my son's metopic ridge. I

think I was only able to breathe well at that point. Our visit was

actually for the plagio consult which he thought was mild.

I still worry about the ridge from time to time, but my son's head

is not triangular shaped when viewed from above the head, like the

classic trigonocephaly. Dr said some kids develop a bony structure

as their heads grow bigger but the important thing to look at is if

the sutures are fused already or not. Since my son's is not yet - no

need to worry. (I hope!)

I guess bottom line is - you have to take action yourself if you

don't see support from your pedia. I do regret having listened to

our first one since the beginning that " it will correct itself " . Now

my son is 15mos, still has tort and plagio and is just getting

banded at such an old age.

If it's at all possible for you to do a consult with a neuro or

craniofacial specialist without a referral, - try so (likely

impossible?) - I remember crying over the phone talking to the

appointment person at CHLA because they wouldn't take us in w/o a

referral. Eventually someone called me scheduling me for an

appointment - don't know how or whether they called my pedia's

office or nto. Otherwise, find another pedia who is proactive about

these situations.

Maybe you can look up children's hospitals around or closest to you

and get the name of their neuro or cranio doctors. Then ask them

which pedia they get the most referral from. Maybe that would be

your best option in finding a good or helpful pedia to switch to.

sorry my post is very long...

Love,

Donna

(mom to IsaiahMalik, 15mos - right tort, mild left plagio waiting

for our band on 9/18)

> >

> > I posted a few photos in an album so maybe some of you could

give me

> > your two cents. Like I said I am not concerned so much with

> > plagiocephaly as with trigoncephaly for which he could not wear a

> > helmet, surgery is the only option. You can see the ridge in the

> > middle of his forehead, in fact the flash bounces off of it.

Also, his

> > head seems to be egg shaped. I might also mention that he has a

very

> > small pointy chin and I can barely feel the sockets of his eyes.

i

> > don't know if that is normal or not.

> >

> > Thanks for looking and offering your opinion whether I should

have him

> > evaulated further.

> >

> >

http://health.ph./group/Plagiocephaly/photos/browse/2

d8f

> >

>

[Guest guest]

Hello,

I don't post here often, my son in now 6 1/2. I visited your pix of

your boy. There may be one other option for your little man outside

of surgery. Like I said...there MAY be... Have you ever heard of

NCR? It stands for Neuro Cranial Restructuring. Many parents find

this to be controversial, so you have to do all of your reading and

research on your own. When I saw the forehead pic. of your son, I

immediately thought of a little boy named Chad who had NCR done as

an infant for the same problem as your son. Visit

www.ncrdoctors.com Click on " find NCR doctor " Then go to Dr.

J. Arrandt's website. I think you might be amazed. This technique

is not well known, but has been around for over 30 years. Perhaps

Dr. Arrandt can put you in touch with Chad's mom?? If you email

him, and send your pix, he will respond. I emailed him once and he

responded. We did NCR for our then 5 1/2 year old son. We did 3

series (12 treatment). The results were not nearly as profound as

they would be for an infant. Our son had small change (probably a

couple of mm's) But something was better than nothing for us. We

wish we knew of NCR when our boy was much, much younger. I

definitely don't think you should let many days pass with out doing

something. Let me know if you talk to Dr. Arrandt.

I hope this was even a little bit helpful..

My heart goes out to you...

Sincerely, Tara

>

> I posted a few photos in an album so maybe some of you could give

me

> your two cents. Like I said I am not concerned so much with

> plagiocephaly as with trigoncephaly for which he could not wear a

> helmet, surgery is the only option. You can see the ridge in the

> middle of his forehead, in fact the flash bounces off of it. Also,

his

> head seems to be egg shaped. I might also mention that he has a

very

> small pointy chin and I can barely feel the sockets of his eyes. i

> don't know if that is normal or not.

>

> Thanks for looking and offering your opinion whether I should have

him

> evaulated further.

>

>

http://health.ph./group/Plagiocephaly/photos/browse/2

d8f

>

[Guest guest]

I had the same problem with my ped.. when the neurosurgeon told me

my daughter had severe plagio and tort, I was so mad at my ped that

I went off on him, he refused to acknowledge that he'd done a

mistake. My daughter will not get her DOC band until she is 8 mos.

I completely missed her good growth spurs. Hopefully you can get a

quick answer.

-Frances

>

> I posted a few photos in an album so maybe some of you could give

me

> your two cents. Like I said I am not concerned so much with

> plagiocephaly as with trigoncephaly for which he could not wear a

> helmet, surgery is the only option. You can see the ridge in the

> middle of his forehead, in fact the flash bounces off of it. Also,

his

> head seems to be egg shaped. I might also mention that he has a

very

> small pointy chin and I can barely feel the sockets of his eyes. i

> don't know if that is normal or not.

>

> Thanks for looking and offering your opinion whether I should have

him

> evaulated further.

>

>

http://health.ph./group/Plagiocephaly/photos/browse/2

d8f

>