A million questions! (m)

[Guest guest]

" Second, how do they know it isn't synostosis if they haven't done x-

rays or a scan? Can the neurosurgeon really tell just by sight and

touch? "

I don't think they can tell for SURE by just sight and touch. If you want to

be sure I would push for the 3-D CT or x-ray. Please correct me if I am

wrong, but the CT scan would be more accurate in looking for cranisynostosis.

As far as being undecided about treatment - I think that is normal. Yes, it

is an " ordeal " , but children are adaptable and your child will probably have

virtually no memory of her time in the band other than the pictures. There

are real health concerns associated with plagio although some drs try to

downplay them or deny them. TMJ, vision, developmental and speech to name a

few. That is also something to consider when deciding whether or not to

pursue treatment. Of course, the decision lies squarely with the parents and

I would recommend going with your gut instinct (so to speak). There are some

people who have opted not to go with the band/helmet therapy and have been at

peace with their decision. You will have to do what you think is best for

your baby and your family. Please ask as many questions as you want - this is

the place to speak freely and honestly. You will not find any better

support!!!

Please keep us posted on your decision! :-)

Marci (Mom to )

Oklahoma

[Guest guest]

First, thanks to everyone who answered my frantic post earlier. I am

still upset with her ped for not referring us to the neuro earlier

for evaluation, but extremely glad it's not too late for treatment.

Genna has an appointment for casting next week, but I'm still feeling

wishy washy about this whole thing. I have about a million questions

and would appreciate input from anyone and everyone!

First, G's head is visibly flatter on one side and her ears measured

9mm asymmetrical. Apparently the rest of her measurements came out

within normal range. Has anybody else opted to treat a case like

this? It seems pretty mild to me. She doesn't have much hair and

I'm not sure it would be noticeable at all if she did. Plus, the

neuro said it would get somewhat better on its own, if we just left

it alone, but it would get MORE better if we used the band. I am so

hesitant to put her through the ordeal of casting and the hassle of

months in a DOC band if it's not needed. I keep going back and forth.

Second, how do they know it isn't synostosis if they haven't done x-

rays or a scan? Can the neurosurgeon really tell just by sight and

touch?

Third, has there ever been a case where the band did something bad to

a baby... molded its head wrong or injured it in some way? They

haven't mentioned any risks or mistakes like this but I'd like to

hear from you all about this.

Well, that was only four... not quite a million! I have more but

I'll leave it at these for now. Thanks in advance!

P.S. I'm in Charlotte, NC. Anybody near me?

[Guest guest]

> I don't think they can tell for SURE by just sight and touch. If you

want to

> be sure I would push for the 3-D CT or x-ray. Please correct me if I

am

> wrong, but the CT scan would be more accurate in looking for

cranisynostosis.

>

Our plastic surgeon told us that the only way to confirm his diagnosis

was through 3d CT scan. I would be hesitant to get a band without at

least an x-ray.

Kathy

mom to

l lamdoid cranio CVR 1/18/01

DOC Band 2/26/01

[Guest guest]

> I would be hesitant to get a band without at least an x-ray.

Hi,

Kathy, I agree with you.

To Genna's Mom: several days ago a kind Momma posted a message about

the CranioCap (another brand of helmet-type therapy) and a link to

their Web site. I'd highly encourage you to visit it at:

http://www.gillettechildrens.org/ (Just click on the top article

titled " Deformational Plagiocephaly or Misshapen Head " in the

Winter

issue of A Pediatric Perspective)

The article provides a great diagram that illustrates the typical

visual differences between Cranio and Plagio. It reads, " While there

are certain distinguishing characteristics between deformational

plagiocephaly and craniosynostosis (such as positioning of the ears

as shown in fig. 3), only x-rays can confirm the presence of

craniosynostosis... "

I thought the information was very helpful. Thanks to the sweetie

that posted it

Also, Marci - your a such a supportive member. It's always nice to

hear your encouraging words. Thanks ;-)

Have a great day (evening), everyone!

e

4/00 (Banded 12/00)

Gaylord, Michigan

[Guest guest]

Hi,

My name is Debbie, and my son was diagonosed with mild/moderate

plagio at 7 months (cranial facial dr. said mild, the PT at CT said

it was moderate last Friday at our casting.) I wanted to write you

because I had a lot of the same questions, as I'm sure so many in

this group did, and it sounds like my son is in a similar situation

as your daughter.

's case is pretty mild. So mild, I didn't even notice anything

until my pediatrician pointed out that there was some flattening on

his right side at his 4 month check up. He has so much hair (from

day 1), and the flatness is minor, so it's hard to see unless you

know what to look for. (Which, of course as a first time parent, I

had no idea.) He told us it was no big deal, really common for

babies that sleep on their backs, and to just try and get

to sleep on the 'other' side of his head. (I had no idea that there

was a name for this " condition " at this time - my pediatrician

certainly didn't know....)

Well, this 'repositioning' thing was easier said than done.

Everytime fell asleep and we saw that he was on that spot,

we'd go in his room, and twist his head to the other side. Sometimes

he'd wake up crying when we'd do this (which was such a bummer)and

most of the other times he'd just move his head back to that right

side later on. My pediatrician didn't give me any tips other than to

move his head. I had no idea how serious I needed to take this

repositioning, as my pediatrician didn't make me feel like it was

anything urgent - in fact, I felt like it was normal, and that it

would get better on it's own. Ignorance is such a lame excuse, but

's head looked pretty normal to me. All his features seemed

just fine.

At our 6 month check up, our pediatrician thought it was better - and

I swear, I could barely notice anything. He still said not to

worry. Then I went over to my friend's house. Her son had a similar

problem (and also wears the DOC band), and when she saw 's

head, she suggested we 'override' what our pediatrician said (because

he said the same thing to her - we have the same pediatrician.) She

gave me the name of the cranial facial doctor she saw.

So at 6 1/2 months, we began seeing all these specialists - cranial

facial surgeons, neurosurgeons, etc. Everyone had a different

opinion. The cranial facial surgeon examined 's head with her

hands and determined that all his sutures were still open. The

pediatric neurosurgeon said the same thing. We had no xrays, cat

scans, etc. My husband is a physician (orthopedics) and called

around to all his doctor friends to research this, and I started

researching on the internet, like most other parents here. This

group has been so great with info and so supportive of each other.

doesn't have noticable asymetrical problems, except for his

ears (which are not noticable unless pointed out - at least his own

mother didn't notice until the cranial facial surgeon showed me!!)

Ironically, the whole time my pediatrician kept telling us it was no

big deal because everything WAS symetrical!

Since 's case is not serious, I felt a little better. But

that was short lived. Now that I was educated about plagio and

torticollis (which does not have - the only thing these

doctors have agreed on...) I became obsessed with my son's head. One

day I thought it was fine, the next I felt like if there was

something I could do to try to make it 'perfect' (without waiting it

out and hoping it corrected on its own), and helping to avoid any

other problems untreated plagio could lead to (tmj, developmental,

etc.) then I should do it.

We have gone back and forth a gazillion times on whether or not to do

anything about it. My pediatrician and a pediatric neurosurgeon said

not to do anything, and that his head would round out on its own.

(Especially now that is crawling and sleeping on his

stomach.) But, I have read about parents NOT doing anything and

waiting for their kid's head to round out on its own, and it never

happening!! The cranial facial surgeon said to do the DOC band.

From all the research I have done, I can't find anything harmful that

could happen from using the DOC band. but I can't say for sure,

since I can't possibly read everything. All I know is that I could

second guess myself for the rest of my life.

In the end, both my husband and I knew that we just didn't want to

take the risk of 's head not rounding out on its own, and any

problems that could result from this. We were even considering going

to see more doctors for MORE opinions. We knew we'd continue to get

different opinions, so we are going with our gut.

is getting his DOC band this Friday. Don't get me wrong, I

hated having him get casted (he cried on and off, not too bad - he

hated the bath worse...go figure??) And I am not looking forward to

his getting his DOC band on Friday. But what I DO know now, is that

it is the best thing I can do for my child, and I will have to get

over my hangups of missing his head (for cuddling), worrying about

how he will adjust to it, and people staring. Everyone says that it

is harder for the parents than it is for the baby. I'm sure

will be fine - and I will be too, eventually.

Sorry this is so long, but I hoped giving you our whole story might

help you understand our situation, and hopefully, it may help you.

Hang in there, and know that after you have done enough research to

where you think you know more than all the doctors :-) you just

simply have to go with your gut. Good luck to you and your family!

Best Wishes,

Debbie

Mom to (will be banded 2/23/01)

> First, thanks to everyone who answered my frantic post earlier. I

am

> still upset with her ped for not referring us to the neuro earlier

> for evaluation, but extremely glad it's not too late for treatment.

>

> Genna has an appointment for casting next week, but I'm still

feeling

> wishy washy about this whole thing. I have about a million

questions

> and would appreciate input from anyone and everyone!

>

> First, G's head is visibly flatter on one side and her ears

measured

> 9mm asymmetrical. Apparently the rest of her measurements came out

> within normal range. Has anybody else opted to treat a case like

> this? It seems pretty mild to me. She doesn't have much hair and

> I'm not sure it would be noticeable at all if she did. Plus, the

> neuro said it would get somewhat better on its own, if we just left

> it alone, but it would get MORE better if we used the band. I am

so

> hesitant to put her through the ordeal of casting and the hassle of

> months in a DOC band if it's not needed. I keep going back and

forth.

>

> Second, how do they know it isn't synostosis if they haven't done x-

> rays or a scan? Can the neurosurgeon really tell just by sight and

> touch?

>

> Third, has there ever been a case where the band did something bad

to

> a baby... molded its head wrong or injured it in some way? They

> haven't mentioned any risks or mistakes like this but I'd like to

> hear from you all about this.

>

> Well, that was only four... not quite a million! I have more but

> I'll leave it at these for now. Thanks in advance!

>

> P.S. I'm in Charlotte, NC. Anybody near me?

[Guest guest]

My son was diagnosed with plagiocephaly at 6 1/2 months. The

neurosurgeon said he was a mild/borderline case and it was up to us

whether or not we wanted to go with the DOC band. The CT orthotist

said he was moderate because there was some slight ear misalignment.

When we got measured at CT (there's someone who comes in and just

does measurements, not the orthotist), we were told he was only

slightly off on two measurements. I think she said by .5 to 1 cm.

My son has no facial asymetry, just a flat spot on the right back

side of his head, slight ear misalignment, and his head tended to

slope up from front to back.

By the time we got the actual measurements, we had already committed

to the band. If we had gotten the measurements beforehand we may not

have gone with the band--they seemed so slight. But that being said,

we have seen improvement since we've had the band (five weeks so

far). His head doesn't seem to slope up as severely as it used to.

It just looks rounder. The flat spot is still apparent, but I think

it's starting to fill out.

We were lucky in that my son adjusted to the band very well, we were

doing 22 hrs from the get go. Had a slight problem with a rash early

on but that was it. Because his condition is mild/moderate, I don't

think we had as many fitting problems as I've heard discussed on this

board--maybe because his head's not as asymetrical and there are less

gaps?

We never got a CT or X-rays, the neurosurgeon (one of the best in the

nation I'm told), seemed pretty confident on his diagnosis (he just

looked and felt his head). My son also has a very large head (98%),

so I think if he had craniosyntosis, his head would probably be

pretty misshaped.

I struggled the same way you are, up until the casting, and even

after, but now that I'm seeing results, I'm completely happy with our

decision. Best of luck to you and your decision. What ever you

decide will be right for you.

Regards,

Lily

Drew banded 1/18/01

> First, thanks to everyone who answered my frantic post earlier. I

am

> still upset with her ped for not referring us to the neuro earlier

> for evaluation, but extremely glad it's not too late for treatment.

>

> Genna has an appointment for casting next week, but I'm still

feeling

> wishy washy about this whole thing. I have about a million

questions

> and would appreciate input from anyone and everyone!

>

> First, G's head is visibly flatter on one side and her ears

measured

> 9mm asymmetrical. Apparently the rest of her measurements came out

> within normal range. Has anybody else opted to treat a case like

> this? It seems pretty mild to me. She doesn't have much hair and

> I'm not sure it would be noticeable at all if she did. Plus, the

> neuro said it would get somewhat better on its own, if we just left

> it alone, but it would get MORE better if we used the band. I am

so

> hesitant to put her through the ordeal of casting and the hassle of

> months in a DOC band if it's not needed. I keep going back and

forth.

>

> Second, how do they know it isn't synostosis if they haven't done x-

> rays or a scan? Can the neurosurgeon really tell just by sight and

> touch?

>

> Third, has there ever been a case where the band did something bad

to

> a baby... molded its head wrong or injured it in some way? They

> haven't mentioned any risks or mistakes like this but I'd like to

> hear from you all about this.

>

> Well, that was only four... not quite a million! I have more but

> I'll leave it at these for now. Thanks in advance!

>

> P.S. I'm in Charlotte, NC. Anybody near me?

[Guest guest]

Many doctors do diagnose without x-rays or CT scans (ours included), but if you are the least bit uncomfortable with the diagnosis after you ask for an explanation as to why the Dr. is so sure without further testing, push for a scan. If the doctor sees 20 plagio/cranio kids per week (as ours does), it is likely that s/he can distinguish between the two.

Kendra in Canada

----- Original Message -----

From: Kathy

Plagiocephaly

Sent: Wednesday, February 21, 2001 1:22 PM

Subject: Re: A million questions! (m)

> I don't think they can tell for SURE by just sight and touch. If you want to > be sure I would push for the 3-D CT or x-ray. Please correct me if I am > wrong, but the CT scan would be more accurate in looking for cranisynostosis.> Our plastic surgeon told us that the only way to confirm his diagnosis was through 3d CT scan. I would be hesitant to get a band without at least an x-ray.Kathymom to l lamdoid cranio CVR 1/18/01DOC Band 2/26/01