Re: New to Group - Son Just Diagnosed

[Guest guest]

> Hi everyone. I've been reading all of the posts for the last

several

> weeks in anticipation of our appointment yesterday with the

> craniofacial group at UCLA. I have " known " for some time (since he

> was 3 weeks old) that Max has Plagiocephaly, but our pediatrician

> blew it off until his 6 month appointment, at which time she

finally

> concurred that it might be worthwhile for him to be seen by a

> specialist. It then took us one month to get an appointment with

the

> cranio group and Max is now 7 months old. At yesterday's

appointment

> the diagnosis was confirmed and this is what we were told:

>

> 1. You can do nothing and it will probably correct itself within

six

> months. I do have to say that in the month he started sleeping on

> his stomach it has actually gotten a little better.

>

> 2. You can try active repositioning techniques.

>

> 3. You can try helmet therapy and it will probably correct itself

> within three months.

>

> 4. It's just cosmetic, there are currently no developmental issues

> with Max and there won't be in the future because of the Plagio.

>

> Supposedly, the doctors we saw are the " experts " in the field, but

I

> didn't get a very warm and fuzzy feeling about them.

>

> At any rate, my husband and I don't know what to do. My husband

was

> leaning toward waiting two months, seeing if there's any

improvement

> and then making a decision. My understanding is that the earlier

you

> start the better, and as it is Max would probably be 8 months old

> before he started helmet therapy. I was leaning toward begining

> helmet therapy as soon as possible, but I have such mixed feelings

> about it (especially the casting). Everyone we know who has gone

> through this said the helmet was the best decision they made but

that

> the casting was horrible.

>

> I know you all probably can't make the decision for me, but I guess

> I'm just looking for support and advice as we go through this.

> Thanks a lot and looking forward to getting to know you better.

>

> Laurie

> mom to Eli and Max

[Guest guest]

Laurie- I also knew Owen had plagio from about 6 weeks old and too

was put off my the pediatrician unitl 6 months and I demanded a

referal. Owen was 8 months old when he was fit with his DOC band and

we are seeing great improvement in just 8 weeks. As for the casting,

we had an unusual experience I guess, Owen did not cry at all. He

just sucked on his pacifier and played with us. He is a very laid

back child and I don't know how your son will react but not all

castings are horrible. It does not hurt and it is over within a short

time. I am very pleased with our DOC band. We tried repositioning but

didn't have any luck. The only down side with us is that we are

having to take our insurance (CIGNA) to the appeals process and

probably and external review and small claims court because they

wouldn't cover the helmet ($3,000). Good luck with whatever you

decide.

mom to Owen 4/2/01 banded 12/5/01

-- In Plagiocephaly@y..., " onthecobb " <onthecobb@y...> wrote:

> Hi everyone. I've been reading all of the posts for the last

several

> weeks in anticipation of our appointment yesterday with the

> craniofacial group at UCLA. I have " known " for some time (since he

> was 3 weeks old) that Max has Plagiocephaly, but our pediatrician

> blew it off until his 6 month appointment, at which time she

finally

> concurred that it might be worthwhile for him to be seen by a

> specialist. It then took us one month to get an appointment with

the

> cranio group and Max is now 7 months old. At yesterday's

appointment

> the diagnosis was confirmed and this is what we were told:

>

> 1. You can do nothing and it will probably correct itself within

six

> months. I do have to say that in the month he started sleeping on

> his stomach it has actually gotten a little better.

>

> 2. You can try active repositioning techniques.

>

> 3. You can try helmet therapy and it will probably correct itself

> within three months.

>

> 4. It's just cosmetic, there are currently no developmental issues

> with Max and there won't be in the future because of the Plagio.

>

> Supposedly, the doctors we saw are the " experts " in the field, but

I

> didn't get a very warm and fuzzy feeling about them.

>

> At any rate, my husband and I don't know what to do. My husband

was

> leaning toward waiting two months, seeing if there's any

improvement

> and then making a decision. My understanding is that the earlier

you

> start the better, and as it is Max would probably be 8 months old

> before he started helmet therapy. I was leaning toward begining

> helmet therapy as soon as possible, but I have such mixed feelings

> about it (especially the casting). Everyone we know who has gone

> through this said the helmet was the best decision they made but

that

> the casting was horrible.

>

> I know you all probably can't make the decision for me, but I guess

> I'm just looking for support and advice as we go through this.

> Thanks a lot and looking forward to getting to know you better.

>

> Laurie

> mom to Eli and Max

[Guest guest]

Laurie:

Hi & welcome to our group!!! I'm glad you've been doing some

studying of our group for a few wks! I hope we've helped you out

some thus far.

You're story is all too common around here. Ped. playing it off as

no big deal, then going to a specialist & being told pretty much the

same thing.

The decision to get a helmet for your son is very difficult. You

said you've seen some improvement since he's slept on his belly a bit

more. That's a good sign. Also now that he's 6 mos, he'll be able

to hold his head up & sit up on his own relieving pressure on his

head. You are right though, the younger helmet therapy begins, the

better the correction you'll see. The casting for a helmet/band is

not fun. But it does not hurt your baby one bit. It just makes them

mad! It's uncomfortable for them to be held down and have their eyes

covered up (to protect them from getting plaster in them). The

casting is over quickly - usually 10 mins. Babies usually return to

their happy little selves within minutes after mom or dad cuddles

them again!

Good luck making this stressful decision. I spent many sleepless

nights over what to do. You'll do what's right for your son! Please

keep us updated on your decision & Max's progress.

Debbie Abby's mom DOCGrad

MI

> Hi everyone. I've been reading all of the posts for the last

several

> weeks in anticipation of our appointment yesterday with the

> craniofacial group at UCLA. I have " known " for some time (since he

> was 3 weeks old) that Max has Plagiocephaly, but our pediatrician

> blew it off until his 6 month appointment, at which time she

finally

> concurred that it might be worthwhile for him to be seen by a

> specialist. It then took us one month to get an appointment with

the

> cranio group and Max is now 7 months old. At yesterday's

appointment

> the diagnosis was confirmed and this is what we were told:

>

> 1. You can do nothing and it will probably correct itself within

six

> months. I do have to say that in the month he started sleeping on

> his stomach it has actually gotten a little better.

>

> 2. You can try active repositioning techniques.

>

> 3. You can try helmet therapy and it will probably correct itself

> within three months.

>

> 4. It's just cosmetic, there are currently no developmental issues

> with Max and there won't be in the future because of the Plagio.

>

> Supposedly, the doctors we saw are the " experts " in the field, but

I

> didn't get a very warm and fuzzy feeling about them.

>

> At any rate, my husband and I don't know what to do. My husband

was

> leaning toward waiting two months, seeing if there's any

improvement

> and then making a decision. My understanding is that the earlier

you

> start the better, and as it is Max would probably be 8 months old

> before he started helmet therapy. I was leaning toward begining

> helmet therapy as soon as possible, but I have such mixed feelings

> about it (especially the casting). Everyone we know who has gone

> through this said the helmet was the best decision they made but

that

> the casting was horrible.

>

> I know you all probably can't make the decision for me, but I guess

> I'm just looking for support and advice as we go through this.

> Thanks a lot and looking forward to getting to know you better.

>

> Laurie

> mom to Eli and Max

[Guest guest]

Hi Laurie!

Your story sounds very similar to mine. I am also new to the group

and new to learning about plagiocephaly. My daughter was diagnosed

at 4 months with mild/moderate flatening and facial asymetry. We

tried repositioning for two months and had some improvement. At her

last evaluation (6 months old) her ears had shifted enough to be

symetrical and her head had rounded by over 1/2 cm. Our doctor told

us the same thing they told you....not very helpful in making a

decision, is it? I just wish they could have said yes she needs it

or no she doesn't. After talking with many people and gathering a

lot of information, we decided to wait two more months and see how

much more her head would round out. The biggest thing for us was

that we decided we were happy with her current head shape (so if it

didn't change that would be ok) and that the asymetry was gone. She

is rarely on her back now so we are hoping for even more

improvement. Many other parents that have opted for the helmet

didn't seem to see any improvement with repositioning, but we did.

There was a posting last week from a mom who has a five year old

that wasn't treated. (it was in response to my message

titled " helmet or not? " ) You should read her input. You are welcome

to look at my daughters picture in the photo folder under "

Photo " . Hope this helps a little. Many people told me to go with

your gut feeling and I think that was the best advice.

Karyn

Mom to

Duvall, WA

> Hi everyone. I've been reading all of the posts for the last

several

> weeks in anticipation of our appointment yesterday with the

> craniofacial group at UCLA. I have " known " for some time (since

he

> was 3 weeks old) that Max has Plagiocephaly, but our pediatrician

> blew it off until his 6 month appointment, at which time she

finally

> concurred that it might be worthwhile for him to be seen by a

> specialist. It then took us one month to get an appointment with

the

> cranio group and Max is now 7 months old. At yesterday's

appointment

> the diagnosis was confirmed and this is what we were told:

>

> 1. You can do nothing and it will probably correct itself within

six

> months. I do have to say that in the month he started sleeping on

> his stomach it has actually gotten a little better.

>

> 2. You can try active repositioning techniques.

>

> 3. You can try helmet therapy and it will probably correct itself

> within three months.

>

> 4. It's just cosmetic, there are currently no developmental

issues

> with Max and there won't be in the future because of the Plagio.

>

> Supposedly, the doctors we saw are the " experts " in the field, but

I

> didn't get a very warm and fuzzy feeling about them.

>

> At any rate, my husband and I don't know what to do. My husband

was

> leaning toward waiting two months, seeing if there's any

improvement

> and then making a decision. My understanding is that the earlier

you

> start the better, and as it is Max would probably be 8 months old

> before he started helmet therapy. I was leaning toward begining

> helmet therapy as soon as possible, but I have such mixed feelings

> about it (especially the casting). Everyone we know who has gone

> through this said the helmet was the best decision they made but

that

> the casting was horrible.

>

> I know you all probably can't make the decision for me, but I

guess

> I'm just looking for support and advice as we go through this.

> Thanks a lot and looking forward to getting to know you better.

>

> Laurie

> mom to Eli and Max

[Guest guest]

hi Laurie -

I know exactly what you are going through. My son will be 7 months

old on Sunday and we are getting the cating done on Thursday. I was

trying to tell myself that Jack's head was getting better, but I knew

it wasn't. My decision to do the DOCBand was based on the fact that

I didn't want to look back and regret not doing it once it was too

late. Hopefully, Jack will only wear the band for 12 weeks. I am

not looking forward to the casting one bit, but from what I hear, it

is only going to hurt me!!! Feel free to contact me with any

questions or concerns, it certainly isn't an easy desicion, trust me

I cried the whole day after we saw the specialist!

mom to Jack (6/27/01)

> Hi everyone. I've been reading all of the posts for the last

several

> weeks in anticipation of our appointment yesterday with the

> craniofacial group at UCLA. I have " known " for some time (since he

> was 3 weeks old) that Max has Plagiocephaly, but our pediatrician

> blew it off until his 6 month appointment, at which time she

finally

> concurred that it might be worthwhile for him to be seen by a

> specialist. It then took us one month to get an appointment with

the

> cranio group and Max is now 7 months old. At yesterday's

appointment

> the diagnosis was confirmed and this is what we were told:

>

> 1. You can do nothing and it will probably correct itself within

six

> months. I do have to say that in the month he started sleeping on

> his stomach it has actually gotten a little better.

>

> 2. You can try active repositioning techniques.

>

> 3. You can try helmet therapy and it will probably correct itself

> within three months.

>

> 4. It's just cosmetic, there are currently no developmental issues

> with Max and there won't be in the future because of the Plagio.

>

> Supposedly, the doctors we saw are the " experts " in the field, but

I

> didn't get a very warm and fuzzy feeling about them.

>

> At any rate, my husband and I don't know what to do. My husband

was

> leaning toward waiting two months, seeing if there's any

improvement

> and then making a decision. My understanding is that the earlier

you

> start the better, and as it is Max would probably be 8 months old

> before he started helmet therapy. I was leaning toward begining

> helmet therapy as soon as possible, but I have such mixed feelings

> about it (especially the casting). Everyone we know who has gone

> through this said the helmet was the best decision they made but

that

> the casting was horrible.

>

> I know you all probably can't make the decision for me, but I guess

> I'm just looking for support and advice as we go through this.

> Thanks a lot and looking forward to getting to know you better.

>

> Laurie

> mom to Eli and Max

[Guest guest]

Hello! I am also in the same type of predicament. My son,Dane,is 4

months old. He has reflux and we were told by the doctors and

nurses at the hospital to only lay him on his right side. 8 weeks

later, we found out what bad advice we received. He has gone to pt

for torticollis for 2 months. We didn't see any improvement until

the last couple of weeks. He really likes being in his Supersaucer

and it takes the pressure off the flat spot. He doesn't have

torticollis anymore, but still prefers the right side. Our doctor

said if we want the helmet now, she will refer us, but she

recommends waiting at least until 6 months (she has 5 patients with

helmets currently so she does agree with the effectiveness). If he

continues to prefer the right side, if we get a helmet and he stills

sleeps like that, will his head go back? His head still looks

pretty crooked from the top and the back, but the symmetry of his

face has improved significantly since his diagnosis.

I am also concerned about waiting. I don't want to wait too long if

he will end up needing it anyhow. Everything I read tells me the

best time is 4-6 months. I am afraid if we wait, he will be stuck

in the helmet for a long time. Do they try to pull them off? I

have a 2 year old and I could see trying to take it off him.

I posted pictures of his lopsided noggin. If anyone had any advice,

I would appreciate it!

Dane's Momma

[Guest guest]

,

I just took a peek at Dane's pictures and they look very similiar to both of my son's heads at that age. Tucker is now 5 months old and has been in his helmet for almost two months and will probably only have to wear it for another month or so. He has tolerated it very well and never cries or wants it off his head. His head is rounding out beautifully and I really feel that because we caught it early (unlike my older son who didn't go into his helmet until 14 months) that we will hopefully get 100% correction. In my case though, I and some doctors think my son's had plagio from the womb because no matter what I did to their position, it didn't help. I never got very big with my pregnancies but had good size babies...Trevor was over 8 lbs and Tucker was over two weeks early and almost 7so I think they might have been crowded for whatever reason. I have read alot about plagio and they do say the best time to get them into a helmet is 4-6 months. I am concerned as well that when I remove the helmet, will the head go back? I am going to keep Tucker in the helmet especially when he sleeps for at least two more months. Also, Trevor went into his helmet late and but he tolerated it very well. He had a chin strap with his (unlike Tucker) and he wore it for 5 months through the hot summer. Good luck and if you have any more questions, please feel free to ask. I'm just so happy to have found a support group of mothers going through what I'm going through.

Lori in Michigan

Re: New to Group - Son Just Diagnosed

Hello! I am also in the same type of predicament. My son,Dane,is 4 months old. He has reflux and we were told by the doctors and nurses at the hospital to only lay him on his right side. 8 weeks later, we found out what bad advice we received. He has gone to pt for torticollis for 2 months. We didn't see any improvement until the last couple of weeks. He really likes being in his Supersaucer and it takes the pressure off the flat spot. He doesn't have torticollis anymore, but still prefers the right side. Our doctor said if we want the helmet now, she will refer us, but she recommends waiting at least until 6 months (she has 5 patients with helmets currently so she does agree with the effectiveness). If he continues to prefer the right side, if we get a helmet and he stills sleeps like that, will his head go back? His head still looks pretty crooked from the top and the back, but the symmetry of his face has improved significantly since his diagnosis. I am also concerned about waiting. I don't want to wait too long if he will end up needing it anyhow. Everything I read tells me the best time is 4-6 months. I am afraid if we wait, he will be stuck in the helmet for a long time. Do they try to pull them off? I have a 2 year old and I could see trying to take it off him. I posted pictures of his lopsided noggin. If anyone had any advice, I would appreciate it!Dane's MommaFor more plagio info