I'm new...and worried...

[Guest guest]

Hi everyone,

I'm Barbara and I live in SF. I have 10-month old twins, Jake &

Sam. I've been lurking a while, and appreciate all the support

and info this group offers.

We're a typical plagio story...noticed that Jake had a flat spot

developing at around 3 months. Ped. said don't worry, he'll grow

hair, you know the drill. At six months, we finally got the ped to

refer us to a neurosurgeon at UCSF who recommended

aggressive repositioning until 8 months, in part to make a better

insurance paper trail. At 8 months we had some improvement,

but he still definitely had a pretty flat head and I've noticed slight

eye assymetry. The neurosurgeon said that Jake's plagio is

" borderline " and the helmet decision was really our call. To

make a long story longer (sorry!) we decided to band him, but

had to go through a huge mess to get Jake's primary care ped.

changed to be in the same group as the orthotist at UCSF. After

all that, it looks like we've got insurance coverage for the band.

Jake's now 10 months old. He was casted for the STAR band 2.5

weeks ago and REALLY hated the process. (I should say he's a

VERRRRY placid baby usually). We went back last Wednesday

to fit our new band, and the orthotist was very dissatisfied with

the fit. He had to make MAJOR adjustments. By this point, Jake

was a crying mess and the orthotist suggested that we come

back on Friday (yesterday) to 1) give him more time to tweak this

band and 2) recast him for a new one since he was feeling

dissatisfied with this one. Yesterday's follow-up fitting and

recasting involved a ton of intense crying on Jakes part. It was so

hard and I was feeling SOOOO bad! For now the orthotist is

happy with the modifications he's made to this first one, but

wants to see if we can do even better with a totally new one. In

the meantime he wants Jake to wear this first one until the new

one arrives, starting with 2 hrs. then 4, then all day, then 22 hrs.

Here are my questions (and I'm sorry this is such a novel!) 1)

Jake's forehead looks really squished forward in the band, to the

point where his brow looks furrowed, he has a wrinkle of skin

above his nose and one eye looks lower. (We said he looks like

an " angry Sharpei puppy! " ) This furrowed brow look...is that

abnormal? The orthotist said no, that the band does sometimes

slip forward and that he's seeing the redness in the right spots.

2) Jake cried and cried during the fitting yesterday, and again

today when I tried to put the helmet on at home (I gave up after

40 minutes.) Is this kind of protest from the baby really extreme?

3) If you were me, would you leave this band off and just wait the

2 weeks to try the new one, or should we keep trying with this

one?

I feel incredibly guilty that we waited this long to start, but also so

stressed that it took so much decision making and now Jake

may be one of those babies who just won't adjust to wearing the

helmet after all. (The orthotist said only 5% of his baby patients

completely reject the helmet)

Advice? I feel like the worst mother in the world...

Barbara

[Guest guest]

Hi Barbara & welcome!

Thanks for your introduction, (BTW, it was not a novel..LOL), shew, I'm so sorry things are off to such a rocky start for you guys. I'm very happy your orthotist recognized the problems with the band and immediately went ahead & recasted him. That says a lot for your orthotist. I would suggest keeping this band off of him until the new, properly fitting band is in. Ill fitting bands can and do do more harm than good to baby's heads, and with another band due in soon, I wouldn't risk any problems occuring from this band. Especially with Jake being so bothered and fussing while wearing the band. The band sounds as if maybe it's too tight? Personally, I'd say to heck with it and wait for the new one. ALthough I know how eager you are to get his head rounding today, but it just might not be worth it. It is very uncommon for babies not to tolerate their bands, so do take a bit longer to adjust, but most do.

Again, I'm sorry this isn't going very well so far. Hopefully the new band will be made better and Jake will be happier. Big hugs..Hang in there and please keep us posted. Debbie Abby's mom DOCGrad MI barblcohen2001 <bcohen@...> wrote:

Hi everyone,I'm Barbara and I live in SF. I have 10-month old twins, Jake & Sam. I've been lurking a while, and appreciate all the support and info this group offers.We're a typical plagio story...noticed that Jake had a flat spot developing at around 3 months. Ped. said don't worry, he'll grow hair, you know the drill. At six months, we finally got the ped to refer us to a neurosurgeon at UCSF who recommended aggressive repositioning until 8 months, in part to make a better insurance paper trail. At 8 months we had some improvement, but he still definitely had a pretty flat head and I've noticed slight eye assymetry. The neurosurgeon said that Jake's plagio is "borderline" and the helmet decision was really our call. To make a long story longer (sorry!) we decided to band him, but had to go through a huge mess to

get Jake's primary care ped. changed to be in the same group as the orthotist at UCSF. After all that, it looks like we've got insurance coverage for the band.Jake's now 10 months old. He was casted for the STAR band 2.5 weeks ago and REALLY hated the process. (I should say he's a VERRRRY placid baby usually). We went back last Wednesday to fit our new band, and the orthotist was very dissatisfied with the fit. He had to make MAJOR adjustments. By this point, Jake was a crying mess and the orthotist suggested that we come back on Friday (yesterday) to 1) give him more time to tweak this band and 2) recast him for a new one since he was feeling dissatisfied with this one. Yesterday's follow-up fitting and recasting involved a ton of intense crying on Jakes part. It was so hard and I was feeling SOOOO bad! For now the orthotist is happy with the modifications he's made to this first one, but wants to see if we can

do even better with a totally new one. In the meantime he wants Jake to wear this first one until the new one arrives, starting with 2 hrs. then 4, then all day, then 22 hrs.Here are my questions (and I'm sorry this is such a novel!) 1) Jake's forehead looks really squished forward in the band, to the point where his brow looks furrowed, he has a wrinkle of skin above his nose and one eye looks lower. (We said he looks like an "angry Sharpei puppy!") This furrowed brow look...is that abnormal? The orthotist said no, that the band does sometimes slip forward and that he's seeing the redness in the right spots. 2) Jake cried and cried during the fitting yesterday, and again today when I tried to put the helmet on at home (I gave up after 40 minutes.) Is this kind of protest from the baby really extreme? 3) If you were me, would you leave this band off and just wait the 2 weeks to try the new one, or should we keep trying with

this one?I feel incredibly guilty that we waited this long to start, but also so stressed that it took so much decision making and now Jake may be one of those babies who just won't adjust to wearing the helmet after all. (The orthotist said only 5% of his baby patients completely reject the helmet)Advice? I feel like the worst mother in the world...BarbaraFor more plagio info

[Guest guest]

Barbara,

Welcome to the group! Here's some of my experience with your questions:

1)

Jake's forehead looks really squished forward in the band, to the

point where his brow looks furrowed, he has a wrinkle of skin

above his nose and one eye looks lower. (We said he looks like

an "angry Sharpei puppy!") This furrowed brow look...is that

abnormal? The orthotist said no, that the band does sometimes

slip forward and that he's seeing the redness in the right spots.

There is some play forward and backward with the band at first, my son also looked like a shar-pei puppy wearing his DOC band for the first few weeks- it should get more snug as the head start filling in the voided areas. The red marks should fade within an hour, otherwise an adjustment may be needed.

2) Jake cried and cried during the fitting yesterday, and again

today when I tried to put the helmet on at home (I gave up after

40 minutes.) Is this kind of protest from the baby really extreme?

Is the helmet hard to put on? It shouldn't be too tight trying to get it on- is this the problem?

3) If you were me, would you leave this band off and just wait the

2 weeks to try the new one, or should we keep trying with this

one?

That's a hard call. Do you feel this helmet is as satisfactory as the ortho does to put on? If its tight, I personally would keep it off. It's hard to make a judgement call on something we just don't know about, so I think you'll have to assess this for yourself, see how it fits, is he miserable, and try to determine if its just a bad fit and needs to be shelved until the new one comes in or if he's fine with it for now. I don't have any good advice on that one way or the other, sorry. Has he been wearing it these past few days? Keep us posted on how the process is going. I would call your ortho and ask for a rush on that new helmet, it was their error so he should be able to make that a priority to the company and get that back to you within a week. Good luck!

' mom