Re: 's Appt. with KKR

April 16, 2002

Ann Marie -

Well, I'm glad you got some great exercises from . She has

helped Dane so much.

Please don't beat yourself up. The ped (not our regular one) who dx

Dane with tort didn't refer us to for pt, he sent us to

someone else at the same practice. I can't understand this! We

wasted 2.5 months and is just 15 minutes away. We had a

HORRIBLE experience at the hospital where Dane was born and I beat

myself up everyday for 5 months thinking I made the wrong choice

where to deliver. Finally I realized making myself feel bad wasn't

doing him any good! Hindsight is always 20/20 and when you get

advice from the so called experts (dr.), you sometimes blindly trust

their judgment (something I will never do again!).

If you do decide to go with the DOC Band, I can be there to help you

with the casting if you'd like. I don't like the thought of Dane

being banded in the summer either, but it may come down to it for

him.

I'm sure this will be a tough week for you. I'm sure you will find

peace in your decision. you obviously are a great mom. You are

concerned about him and hauled him to Cleveland, didn't you? Cheer

up. You have done so much for him and you know you always put his

interests first.

Did you get any hassles here in Cleveland over the Steelers Band? I

didn't see a picture attachment with your post.

Dane's mom

> Hi all!

>

> Our trip to see KKR in Cleveland was very frustrating!! KKR is

totally amazing, and so very helpful and informative!! I would love

to have her as our reg. PT for . Kudos to all of you out

there who do!!!! We were with for approx. 5 hrs. Three of

which was basically showing us all of the stretching/strenghtening

exercises that should have been getting over the past 9

mos. he has been in PT. KKR said does have complete ROM

and he also has no spinal rotation -- which is very good. She did

say that he has a good bit of tightness in his major neck muscles

and also that his occipitals were very tight. He also has moderate

jaw asymmetry. For this we must do the stretching and

strengthening. Am I so PISSED OFF at our reg. PT right now. I

feel that has been " cheated " so badly over the past 9

mos. that she has been with him . Last fall I requested a meeting

with our PT and the head of EI ( goes through EI for his

PT) about the lack of therapy he was getting at home. I had

mentioned being in the tort and plagio support groups and that

everyone does stretching/strenghtening exercises at home. I was

told by his PT that this was not necessary in 's case

because his tort was extremely mild. I was also told NOT to do

anymore PT than what he was getting 2X mo., at daycare, because I

could actually do him more harm than good!!!! So, believing her, we

didn't do anything. As time went on, deep down I thought we should

be doing more but fearing it could actually be worse for him -- we

didn't!! I feel like such a failure to him. Why did I listen to

her. I should have known better, after all, being in these groups I

learned so much and with the internet and my own readings -- I just

shouldn't have listened to her. KKR said that has

approx. a 25 degree tilt!! I thought maybe 5 degrees tops! He is

teething (1yr. molars) right now, so I do think his tilt was a

little worse on Saturday than it normally is. We brought home with

us a video tape of knowledge (actually 2 tapes)!!! We made a tape

of the entire session for our reg. PT. I called her supervisor (the

coordinator of EI)yesterday, she wasn't in until the afternoon. By

the time she got back to me I was ready to leave work. I told her I

did not have enough time to talk to her on the phone and we made

arrangements that I will call her this morning at 8:30 a.m. I am

going to tell her about our consult with KKR and what she had to say

about the at home therapy (it is a must and we are soooo willing to

do it!!!!!) We should have been given exercises to do at home for

9 mos. ago!!! Now he is almost 15 mos. and I feel we

are just starting out!! I will tell her that we now want the PT

done weekly. We want our reg. PT to do the exercises that KKR is

performing on done at those sessions and that we are

starting them rigorously at home. If this cannot be done -- we will

look for another PT. Where we will find one we have no idea -- our

PT, like I said is through EI, and she is supposed to be the best

pediatric PT in our immediate area and actually the only one that I

know of!! (We looked around for one before we went through EI.) I

can't wait to see what our PT has to say after she sees this video

tape -- she acts like such a know-it-all!!

> KKR would like to see back in about 8 wks. to check on

his progress. I will keep you all posted.

>

> The other problem we encountered was the measurements that KKR

took of 's head. We were completely astounded!! He had

been in his STARband for 7 mos. and we thought that he got great

correction, but after her measurements I am completely dumbfounded.

He had a cranial vault measurement of 21 mm and a facial asym. of 4

mm!!!!! How can this be!!! That puts him in the severe plagio

range!!!! Anything over 10 mm cv they recommend banding. When he

first started his STAR treatment he was considered to have mild

plagio. His neurologist thought he should be finished with his STAR

after 3 mos. in it!!! Now how can his plagio be severe!!! He looks

so much better now than he did when he first started out!! Anyone

who sees him thinks he looks wonderful and said they see NO facial

asymmetry!! We see slight facial asymmetry and a slightly flattened

area to the right-back-side of his head. Now that his hair is

getting thicker (he's had his second haircut) you can barely even

notice it. KKR said that if we do decide to band him, at his age,

we would be lucky to get 50% correction. He would have to wear it

for 3 -4 mos. over the summer months. Out of the 15 mos. he has

been alive he has worn a helmet/band so far for 7 of them!!! She

also said that his asymmetries will never go away they will

just " grow with him " . Although KKR did say our main concern right

now is his correcting his tort. I am so confused!!! I have not

slept since our appt. on Sat. I couldn't even concentrate at work

yesterday -- I was going to take the day off but I didn't --

probably should have. I am sick with worry about this!! My husband

is totally against putting him in a DOCband. He said his head and

face look fine and he sees no need for another band and that he has

spent 7 mos. in one already and he thinks it has done wonders for

him. As for the jaw asymmetry KKR said a lot of her tort/plagio

patients who have asymmetries of the jaw need orthodontic work later

on in life anyhow. I keep telling myself, and my husband, that it

can only do good for him it cannot make it worse, but I too, hate

the thought of putting him in another band. I feel he has already

done his time, so to speak. Another thing was, towards the end of

's STAR therapy he was starting to try and take off his

band. What if we went ahead and got the DOC, would he keep it on

his head?!?! I certainly do not want to ruffle any feathers here,

but one more thing - I think CT has done wonders and that the DOC

band is truly a godsend, and I in no way doubt the good it has done,

but how accurate are the measurements. I was told by our orthotist

that for the STARband they do not take measurements because the

margin for error is so great. My husband agreed, saying when

measuring with calipers how do you know if you are putting the one

end (the guide end) of the caliper in the same exact spot for each

measurement, unless you somehow put a mark on the skull to use as a

guide (like maybe even a dot from a felt-tip marker) -- after all

you are measuring in millimeters -- you must be very accurate. My

husband said for s measurements there was no guide

markers used. I was to busy holding to pay any

attention. If you are off a teeny, tiny bit it could be the

difference of 5-10 mm's. I just find it so hard to believe that

's asymmetries are that bad!!!!!! Just before Easter I

brought in to the office where I work, they hadn't seen him since he

was in his STAR. They thought he looked great! When they heard

that he may be getting banded again they could not imagine why!!!!

Maybe I'm grasping for some, any, answers I can get!!! I have

attached a pic of taken when he was about 10 mos. old

(best one I could find that is a semi close-up of his face). He is

showing his tilt in this pic, but you look at his face, and please

let me know what you think of his asymmetries. I know that you all

have a " trained eye " for this kind of thing. I thought I did to,

but maybe when it is your own child you just don't see it!! I

thought I could see it even more, because I look for it all of the

time. Do you think his asymmetries are mild, moderate or severe? I

do not have a pic on the computer of any before and after photos of

the back of his head, when I do, I will put them on here. Again, I

am soooo confused!!! Should we or shouldn't we - and I do have my

husband to deal with!!! I know that me and my husband can only make

that answer, it is such a huge decision to make. His life is in our

hands and we all want to do what's best for our children. I am so

afraid that once he loses the " babyfat " in his facial features that

the asymmetries will be more apparent. I do not want my child to

look like some kind of freak (other kids can be so cruel) or have

serious medical problems in the future because of these

asymmetries. I would not be able to live with myself for not doing

EVERYTHING remotely possible to help him. I already feel like I

have failed him with the torticollis, but I thought I was doing the

right thing by listening to his PT even though I read (from the tort

support group) about all the therapy that needs to be done at home.

I tentatively have an appt. penciled in with CT at Straight Ahead

this Sunday for a casting (that will be a nightmare all over

again!). KKR said to think it over a couple of days and if I want I

can cancel the appt. Straight Ahead was about a 3 hr. drive for us,

so distance-wise if we get the band, is not that bad. I'm so sorry

that this was so long (if anyone has even read the whole thing), but

I had to get everything out. I know all of you can will understand

what I'm going through right now. I do not know what to do. I've

placed an email to Dulcey Lima (from Orthomerica - makers of the

STARband) and I'm waiting to hear from her. ( What I'm waiting to

hear, I don't know.) She had been in contact with me when she heard

graduated from the STAR and wanted him to be on their

website homepage. I guess I'm curious what she thinks of the

measurements. I am also going to contact 's orthotist

and see what he has to say. Well, thanks to whoever decides to read

all of this. I have a huge decision to make. I will keep you all

posted as to our decision. Take care.

>

> AnnMarie & (14 mos.)

> STAR grad

> 9 mos. into PT for tort

April 16, 2002

Ann Marie, I know how you feel. My son Logan is 15 months old. He has

been in his Locally made helment for more than 8 months. He is still

wearing it. The Orthotist actually sawed off the top of the helmet to

try and make it fit a little while longer. His head still needs some

correction, but we were told a second helmet wouldn't be worth while.

We are just going to wear this one until it no longer fits. We have

definatly gotten our moneies worth out of it.

I wouldn't trust those measurements too much if I were you. Every

time I go and get Logan's head measured they come up with different

measurements. Sometimes his head grows and sometimes his head

shrinks! I don't think the lady knows what she is doing. He puts up a

huge fuss when she comes near him, but I am holding him still and she

measures each spot three times. She still comes up with bizzare

measurements. I brought the cast of his head because I wanted her to

measure it to see exactly how bad off he was when we started. She

said she couldn't measure because it didn't have eyes. There was a

seam in the front where the two halfs go together. I measured it

myself when I go home. I am totally not impressed with her. Do you

have a cast of 's head. If you compare this to his head

now I am sure you will see a huge improvement. This is what we go by.

I too am worried that my son will never have a perfect round head. I

think we just notice too much because we are always looking for it.

Anyone else doesn't see anything wrong with Logan. I wish you good

luck with everything. You are doing a great job.

Steffany & Logan (15 months)

-- In Plagiocephaly@y..., " Ann Marie " <aober@h...> wrote:

> Hi all!

>

> Our trip to see KKR in Cleveland was very frustrating!! KKR is

totally amazing, and so very helpful and informative!! I would love

to have her as our reg. PT for . Kudos to all of you out

there who do!!!! We were with for approx. 5 hrs. Three of

which was basically showing us all of the stretching/strenghtening

exercises that should have been getting over the past 9

mos. he has been in PT. KKR said does have complete ROM

and he also has no spinal rotation -- which is very good. She did

say that he has a good bit of tightness in his major neck muscles and

also that his occipitals were very tight. He also has moderate jaw

asymmetry. For this we must do the stretching and strengthening. Am

I so PISSED OFF at our reg. PT right now. I feel that

has been " cheated " so badly over the past 9 mos. that she has been

with him . Last fall I requested a meeting with our PT and the head

of EI ( goes through EI for his PT) about the lack of

therapy he was getting at home. I had mentioned being in the tort

and plagio support groups and that everyone does

stretching/strenghtening exercises at home. I was told by his PT

that this was not necessary in 's case because his tort

was extremely mild. I was also told NOT to do anymore PT than what

he was getting 2X mo., at daycare, because I could actually do him

more harm than good!!!! So, believing her, we didn't do anything.

As time went on, deep down I thought we should be doing more but

fearing it could actually be worse for him -- we didn't!! I feel

like such a failure to him. Why did I listen to her. I should have

known better, after all, being in these groups I learned so much and

with the internet and my own readings -- I just shouldn't have

listened to her. KKR said that has approx. a 25 degree

tilt!! I thought maybe 5 degrees tops! He is teething (1yr. molars)

right now, so I do think his tilt was a little worse on Saturday than

it normally is. We brought home with us a video tape of knowledge

(actually 2 tapes)!!! We made a tape of the entire session for our

reg. PT. I called her supervisor (the coordinator of EI)yesterday,

she wasn't in until the afternoon. By the time she got back to me I

was ready to leave work. I told her I did not have enough time to

talk to her on the phone and we made arrangements that I will call

her this morning at 8:30 a.m. I am going to tell her about our

consult with KKR and what she had to say about the at home therapy

(it is a must and we are soooo willing to do it!!!!!) We should have

been given exercises to do at home for 9 mos. ago!!! Now

he is almost 15 mos. and I feel we are just starting out!! I will

tell her that we now want the PT done weekly. We want our reg. PT to

do the exercises that KKR is performing on done at those

sessions and that we are starting them rigorously at home. If this

cannot be done -- we will look for another PT. Where we will find

one we have no idea -- our PT, like I said is through EI, and she is

supposed to be the best pediatric PT in our immediate area and

actually the only one that I know of!! (We looked around for one

before we went through EI.) I can't wait to see what our PT has to

say after she sees this video tape -- she acts like such a know-it-

all!!

> KKR would like to see back in about 8 wks. to check on

his progress. I will keep you all posted.

>

> The other problem we encountered was the measurements that KKR took

of 's head. We were completely astounded!! He had been

in his STARband for 7 mos. and we thought that he got great