Re: SO Discouraged after 2 1/2 mos! HELP

[Guest guest]

> Hello everyone:

> I've posted about this a while ago, but am again so discouraged.

Our

> daughter, Abby rec'd her STAR band 11/4/00 - at age 8 mos.. She

has

> moderate plagio on her right side. We took her to her ped.

yesterday

> for a double ear infection, she had her band off due to a high

fever,

> I asked her ped. if he's seen ANY improvement, and he has not.

Debbie,

After 2 months in a helmet, we're sort of in the same position.

Conor's gained a couple of pounds but hasn't gotten any taller; his

head hasn't gotten any bigger, either. He's 15 months old now and his

ped. says we should expect a growth spurt in the next 6-8 weeks. Like

you, I'm not sorry we're in helmet therapy, but I'm terribly

frustrated that these two months have not produced any marked change.

We have an appointment with Conor's neurosurgeon on the 31st and I'll

have a million questions for him then about cranial growth and his

experience with growth and growth spurts.

It's interesting that your daughter has a double ear infection.

Conor's had 4 so far and we're seeing an ear specialist at the end of

February. There's some evidence that the infections are being helped

along by the abnormal twists and turns of Conor's inner ear due to

the plagio. Has your doctor suggested a similar connection in your

daughter's case?

I guess what I keep telling myself is that we have to be patient. I

certainly expected to see a change by now; earlier, I think I was

imagining change out of optimism. But he will grow, and we still have

a few months before his sutures close. There's every reason to

believe he'll grow in those months.

Also--it may be that there's some improvement in your daughter's head

shape; you see her too often to notice it, and the ped. sees her too

seldom to notice it. Check with the orthotist, who must have some

kind of record of where she started out. The news from the orthotist

might be more encouraging.

Good luck!

, Conor's mom

[Guest guest]

In a message dated 1/20/01 8:39:14 AM Pacific Standard Time, pettice@... writes:

There's some evidence that the infections are being helped along by the abnormal twists and turns of Conor's inner ear due to

the plagio. Has your doctor suggested a similar connection in your daughter's case?

- Just had to share with you. We had one ear smashed/folded and didn't even pass his newborn hearing test. Doctor couldn't even see down his ear properly so had us go and see a ENT. Things opened up in time. We had the most uneven looking ears. Was so hard to judge with tort and plagio.

Anyway, one ear infection. My sisters kids, no plagio, the nicest little round head, tons of ear infections. GO FIGURE!

Tammy & 12/8/99

[Guest guest]

In a message dated 1/20/01 6:49:10 PM Pacific Standard Time, lisabnetz@... writes:

i feel sooooo much better when i "check in" once a day. (sounds a little wierd but its true) i wish you luck with the decision!!!!!!!!!! e-mail me any time-lisa

Hey, I think of this group as cheap therapy with tons of wonderful and great advice.

Tammy & 12/8/99

[Guest guest]

you are totally right feeling this way, HOWEVER....think of it like

this perhaps-the worst case scenario is that you try it for a little

longer and nothing happens. the best case is you see

some...any...improvement. i know (!!!!!!!) how frustrating all this

is. my son was banded about 10 days ago. hes almost 9 months old. i

think you should ask other people what they think. you may not

notice because you are always looking. And- if i were to have relied

on my pediatrician for advise and info, my son would be a total mess.

my ped doesn't " believe " in the helmet/doc. she said 5 months ago that

by now his head would be rounded out. she also said he had colic which

ended up just being a sensitivity to milk protein.he stopped crying

after we switched him to soy. she said a lot of things except goodbye

when we asked for our records. go with your true instinct and try to

keep in mind that later on you won't have the same choices as u do

now. i would love it on one hand for someone to say the helmet won't

work for my son because then my heart wouldn't be breaking every time

i put it on my son and he cries. on the other hand, i feel lucky that

i caught this and have a chance to correct it-regaurdless of the

process to get there. it's still a chance.its a really tough call.

keep checking on this e-mail site for inspiration. i personally almost

gave up every day-what stopped me was this site. i feel sooooo much

better when i " check in " once a day. (sounds a little wierd but its

true) i wish you luck with the decision!!!!!!!!!! e-mail me any

time-lisa

> Hello everyone:

> I've posted about this a while ago, but am again so discouraged.

Our

> daughter, Abby rec'd her STAR band 11/4/00 - at age 8 mos.. She has

> moderate plagio on her right side. We took her to her ped.

yesterday

> for a double ear infection, she had her band off due to a high

fever,

> I asked her ped. if he's seen ANY improvement, and he has not. Nor

> have I. I am so discouraged. I didn't expect to see a perfectly

> round head after only 2 mos., but some improvement, even the

> slightest would be great! Our orthotist keeps saying she needs to

> hit a growth spurt, well she's already put on nearly 3 lbs and

gotten

> longer since she was banded! How much more growing can a 26 lb- 10

> 1/2 mo old do? What is the problem???? I guess I'm wondering if

> anyone else had a similar situation? Right now I have a very bad

> attitude about it and haven't had her in the band for over 1 day, as

> I say to myself " What's the point, she's been in it over 2 mos with

> NO improvement " . I know, I know, I need to stay upbeat, but it's so

> frustrating. I do NOT regret getting the band for one second

though,

> even if it does not work, at least I did my best as a parent. Sorry

> to ramble on with my bad attitude, but you can all relate to my

> frustrations, thank you for " listening " !

> Debbie & Abby, 3/1/00 - band 11/4/00

[Guest guest]

> - Just had to share with you. We had one ear smashed/folded

and didn't

> even pass his newborn hearing test. Doctor couldn't even see down

his ear

> properly so had us go and see a ENT. Things opened up in time. We

had the

> most uneven looking ears. Was so hard to judge with tort and

plagio.

> Anyway, one ear infection. My sisters kids, no plagio, the nicest

little

> round head, tons of ear infections. GO FIGURE!

>

> Tammy & 12/8/99

Tammy,

Thanks! The doctors have a hard time looking into Conor's ear on the

side of his head that's shifted forward. That ear was smashed when he

was born, but he was part of a hearing study the hospital was doing

and he did all right. You're right; it's hard to tell where those

infections come from and who is going to get them. I'm hoping the

specialist will give us some answers (and not automatically stick

tubes in Conor's ears).

, Conor's mom

[Guest guest]

Debbie,

An 8 month old's skull and brain are still growing at a very steady

rate - typically one would certainly expect to see changes in the

time you've been in the program. If an infant has other medical

problems or is not meeting developmental milestones on time, growth

would be slower. In your case, though, the baby is growing and

therefore you should be seeing changes by now.

Growth will lessen in almost every infant at about 12 months of age,

causing changes to happen more slowly. You might ask your orthotist

to recast and reapply pressures since there hasn't been any

improvement in the head shape.

Best Wishes,

Hodges

Correction Designer

Cranial Technologies, Inc.

[Guest guest]

Do you have pics of her head before treatment? Take some now and

compare them. I can imagine how frustrated you are. You went

through so much to get here, now you want RESULTS. You may have some

suttle results and just cant see them yet.

Hang in there.

and Sam

>

> > Don't be too discouraged. You should check with your parents or

> > others who

> > don't see your son as much as you do. It is hard for me to notice

> > changes

> > with 's head, but when we were at my in-laws, they really

thought

> > she

> > was getting better. They hadn't seen her in about a month. Just

make

> > sure

> > your perspective isn't slanted because you see your son every day.

> > Also,

> > check to make sure the Star band is fitted correctly. Keep us

posted.

> >

> > Laurie

> >

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