Photos posted - opinions appreciated.

June 4, 2004

Hello All,

I am fairly new here. My ds is just over 8 mos. old and I too have

been brushed off by peds about his head rounding out on it's own. I

still have hope that that may be the case but we are seeing a

neurosurgeon on Weds. for what I hope is a more experienced honest

2nd opinion. If you do not mind looking and giving me your truly

honest opinion about my ds's head, I would greatly appreciate it. We

have been repo'ing him for several mos. now but not as aggressively

as I should have in the early mos.(I was scared to death of SIDS of

course.) He is in our plagio kids album under Colin F. I really

would not like to have to " band " him but if we have to then of course

we will. I have seen so much strength in all of you that have gone

thru this and it really is admirable. You all have such beautiful

children and I am happy to see so much success in their treatment.

Thank you so much.

Sue

Colin F. 8 mos.+(brachy?)

NY

June 4, 2004

Hi Sue-

Welcome to the group.

Your son's head resembles the shape of my son . When you get the

time please look at his album under ph.

I also had a Ped who said, " it will round out " and I was a wreck about

the SIDS thing too. I am sorry to say this but this type of head

(brachy) is exhausting and it hardly works with repro. without a band

(at least for us). I tried repro. from 3- 5months but still

sleeping on his back. At 5-7 months I exhausted myself repro. I would

wake up throughout the night making sure he didn't roll on his back. I

had him sleeping on his side by 5 1/2 months. I would stay home because

it wasn't worth having him lay on his back in his car seat. I would

wait to do things when my husband was home. After ALL the repro. I

saw nothing in all of our toil. It was like the head thought it was

suppose to grow outward and stay flat on the back. It was like a

pancake head. He needed the band to help his sides of his head to stop

growing. I wish we banded him sooner because the growth spurts slow

down after 6 months and then slow down after 12 months. I was so

stressed out over the head shape, but also banding my child. It is

all very upsetting. It is a very hard decision. I am sorry you are in

that place right now. I will say that I am glad now that I banded

because I see results. The first 2 weeks were horrible. Hopefully

you will not be as depressed as I was, but everyone adjusts at their

own pace. This website has wonderful, intelligent, caring, mothers.

They helped me through a lot.

If you do consider banding, look for a 3-d scanner. There is one in

White Plains. I do not know of the facility but under Orthomerica they

have a listing of the scanners. I say this because the plaster casting

literally sucks compared to the very quick and easy 3-d scanner. It

takes 2 seconds for the Orthotist to get the measurement and the baby

is not under any stress at all in comparison. It was night and day. I

have photos of it in my album. Also, try to find the best Orthotist in

the area. This is the most important!!! To make a long story short, we

had a horrible experience with an Orthotist. We are now in fantastic

hands and we are happy with our Starband.

Please write me anytime,

Krissy

ph's mom

Starband 5/28/04

On Jun 4, 2004, at 4:20 PM, Sue wrote:

> Hello All,

>

> I am fairly new here. My ds is just over 8 mos. old and I too have

> been brushed off by peds about his head rounding out on it's own. I

> still have hope that that may be the case but we are seeing a

> neurosurgeon on Weds. for what I hope is a more experienced honest

> 2nd opinion. If you do not mind looking and giving me your truly

> honest opinion about my ds's head, I would greatly appreciate it. We

> have been repo'ing him for several mos. now but not as aggressively

> as I should have in the early mos.(I was scared to death of SIDS of

> course.) He is in our plagio kids album under Colin F. I really

> would not like to have to " band " him but if we have to then of course

> we will. I have seen so much strength in all of you that have gone

> thru this and it really is admirable. You all have such beautiful

> children and I am happy to see so much success in their treatment.

> Thank you so much.

>

> Sue

> Colin F. 8 mos.+(brachy?)

> NY

>

> For more plagio info

June 5, 2004

Hi Sue,

Welcome to the group! I hope we are able to help you with some

questions and concerns. I just took a look at Colin's progress

photos that you posted - the first thing I notice is that it doesn't

look like he's had much of a headshape change in the last 4 months

from repo.

We used repositioning only for our daughter Remy, and saw the most

dramatic improvement from 5 to 7 months, and got a decent amount of

correction from 7 to 9 months. If you would like to see what kind

of correction we were able to see, her photos are in the

photos/before and after/repositioned folder.

Repo doesn't/won't work in every case - perhaps the baby has tort,

is in daycare, or there may be other children to take care of, or

the nighttime repo proves too challenging to keep the baby off of

the flat area at night - there are many, many reasons, but the

important thing is to know when repo isn't working so that you can

move on to other treatment. I'm so glad you took that picture at 4

months, because it does show that you have seen very little, if any,

results from repo. You should definitely take these photos to the

neurosurgeon's appt. to show him/her the lack of change.

I think that Colin looks like, to me, he would benefit from

helmeting or banding if you are open to this suggestion. Although I

have heard of some babies rounding out on their own, there is no way

to tell which ones will and which ones won't. The vast majority of

parents here at the group have used helmets or bands, and can help

you every step of the way with any concerns you might have it you

decide to investigate banding for Colin. Do you know what types of

helmets and bands are available in your area?

Take care,

Christie (Mom to Repo'd Remy)

> Hello All,

>

> I am fairly new here. My ds is just over 8 mos. old and I too

have

> been brushed off by peds about his head rounding out on it's own.

I

> still have hope that that may be the case but we are seeing a

> neurosurgeon on Weds. for what I hope is a more experienced honest

> 2nd opinion. If you do not mind looking and giving me your truly

> honest opinion about my ds's head, I would greatly appreciate it.

We

> have been repo'ing him for several mos. now but not as

aggressively

> as I should have in the early mos.(I was scared to death of SIDS

of

> course.) He is in our plagio kids album under Colin F. I really

> would not like to have to " band " him but if we have to then of

course

> we will. I have seen so much strength in all of you that have

gone

> thru this and it really is admirable. You all have such beautiful

> children and I am happy to see so much success in their

treatment.

> Thank you so much.

>

> Sue

> Colin F. 8 mos.+(brachy?)

> NY

June 5, 2004

Hello,

In addition to seeing the neurosurgeon, I would also recommend making

an evaluation appointment at an orthotics clinic that specializes in

skull remolding helmets. What part of NY are you in? Check out the

cranial tech website (for Doc band clinics) and the Orthomerica

website (for STAR band clinics) to see if any are near (or within

driving distance). The helmet makers have seen all kinds of headshapes

and can give you additional assessment information about your son that

will help you make decisions.

As you can see from reading posts on this site - doctor's opinions of

if and when banding is warranted vary greatly. And, in addition, it is

really your opinion of your son's headshape that matters more to you

and and him than the doctor's opinion. I think at this age (beyond

significant repositioning change as others have posted) that the

doctor will offer you a prescription for a helmet. I would definitely

push for one if he/she doesn't offer - you need it even to have the

option of banding (regardless of whether you use it).

Having been through 2 bands last year - my experience was that any

costs, trouble, stares, etc required to get and have the band did not

end up mattering at all in comparison with the possiblity of a

deformed head for life. Once we got a band that fit well (beware -

choosing the right orthotics provider requires careful selection), my

daughter had no problems wearing it - it did not interfere with her

activities at all - it just looks unusual.

Best Wishes,