Re: ...exit strategy

[Guest guest]

Thanks for the reply, Kathy.

I see " rounding, " in the sense you see it with , as a relatively

insignificant potential gain for Clara at this point. It's still

more about the parallelogram becoming a square with her,

unfortunately. Although, a square *is* " rounder " than a

parallelogram. But the phenomenon of ridges erupting in a flat area,

then broadening, seems to be a lost cause at this point. Without

measurable circumferential growth (taking the orthotist's word),

rounding would have to occur through unequal change in bone

thickness, or else bending of ossified bone, neither of which I

believe helmets can effect.

The subtle change that *I've* been monitoring is her eye tracking.

For me, the right eye (which, in left-sided plagio, is the more

posterior) has been like a little gyroscope in the instrument panel

telling me when we're off course. There have been setbacks, but

always less than the gains, and I think she's finally gotten ahead of

the nascent strabismus.

She seems lately to have crossed an aesthetic threshold, too, when I

took the helmet off one day and said, " hey, that's not too bad " ...

when, seeing her sitting in the bath with her identical twin, I

couldn't immediately say which one needed treatment. (It's nice to

have that " reference head. " )

On the other hand, I see firsthand that the angles between Clara's

bones are still pliable, over a period of just four days. I don't

think her bones are especially unusual, based on my reading here

about suture formation; as opposed to " closure, " a confounding term

on most websites, which actually only happens in cases of

craniosynostosis. Sutures are normally a bit pliable. It would be

unusual to see it like I have, though, because hopefully most kids

are getting reasonably incremental, progressive adjustments to their

helmets.

So, this exit strategy is an attempt to optimize two factors:

1) Estimation of how long before the current, " good " fit is

outgrown. I fear that swinging the angles again might adversely

affect the underlying brain. I've joked with the orthotist that

Clara seems better behaved when the helmet is fitting well -- as if

she were literally being " straightened out. " If I try to prolong

treatment, a bad adjustment might torque her head the wrong way, and

since it is larger now, the volume displacement could be significant.

2) Facilitation of soft tissue and bone growth into the present

angles, to shore them up against regression. We're eating a lot of

Danonino and fishsticks this month, for nutritional support.

If I can put together 4 weeks of helmet wear with Clara's head

looking satisfactory, I think we will have done as well as we can

with the help available.

--

Thad Launderville

Montpelier, VT

Clara age 23 months, in STARband ~7 months

On Mar 16, 2010, at 11:04 PM, Kathy Lora Jensen wrote:

> Sorry, I do not understand. It sounds like an unusual experience.

> We're still hoping 's helmet will be effective as we near his

> 2nd birthday. For us we don't need much growth in the

> circumference, but just some rounding out of the flat area. We

> think we still see some really subtle filling in of the flat area

> in back.

[Guest guest]

Hi,

Sounds like you are almost done with the helmet. I get your point.

The reason 's helmet is still effective is that his head has gotten

mild enough that even a tiny bit of rounding helps. It sounds good for

you if the twins end up with comparable heads. On one hand, I'm happy

's head is still improving. On the other hand, as 's head

improves, in comparison my older's son plagio, which never bothered me

before 's diagnosis, is starting to stand out more. So, I cannot

win. :|(

- Kathy, mom to 21.5 months and 5.5 year, both now with

very mild plagio

Thad Launderville wrote:

Thanks for the reply, Kathy.

I see "rounding," in the sense you see it with , as a relatively

insignificant potential gain for Clara at this point. It's still

more about the parallelogram becoming a square with her,

unfortunately. Although, a square *is* "rounder" than a

parallelogram. But the phenomenon of ridges erupting in a flat area,

then broadening, seems to be a lost cause at this point. Without

measurable circumferential growth (taking the orthotist's word),

rounding would have to occur through unequal change in bone

thickness, or else bending of ossified bone, neither of which I

believe helmets can effect.

The subtle change that *I've* been monitoring is her eye tracking.

For me, the right eye (which, in left-sided plagio, is the more

posterior) has been like a little gyroscope in the instrument panel

telling me when we're off course. There have been setbacks, but

always less than the gains, and I think she's finally gotten ahead of

the nascent strabismus.

She seems lately to have crossed an aesthetic threshold, too, when I

took the helmet off one day and said, "hey, that's not too bad"...

when, seeing her sitting in the bath with her identical twin, I

couldn't immediately say which one needed treatment. (It's nice to

have that "reference head.")

On the other hand, I see firsthand that the angles between Clara's

bones are still pliable, over a period of just four days. I don't

think her bones are especially unusual, based on my reading here

about suture formation; as opposed to "closure," a confounding term

on most websites, which actually only happens in cases of

craniosynostosis. Sutures are normally a bit pliable. It would be

unusual to see it like I have, though, because hopefully most kids

are getting reasonably incremental, progressive adjustments to their

helmets.

So, this exit strategy is an attempt to optimize two factors:

1) Estimation of how long before the current, "good" fit is

outgrown. I fear that swinging the angles again might adversely

affect the underlying brain. I've joked with the orthotist that

Clara seems better behaved when the helmet is fitting well -- as if

she were literally being "straightened out." If I try to prolong

treatment, a bad adjustment might torque her head the wrong way, and

since it is larger now, the volume displacement could be significant.

2) Facilitation of soft tissue and bone growth into the present

angles, to shore them up against regression. We're eating a lot of

Danonino and fishsticks this month, for nutritional support.

If I can put together 4 weeks of helmet wear with Clara's head

looking satisfactory, I think we will have done as well as we can

with the help available.

--

Thad Launderville

Montpelier, VT

Clara age 23 months, in STARband ~7 months

On Mar 16, 2010, at 11:04 PM, Kathy Lora Jensen wrote:

> Sorry, I do not understand. It sounds like an unusual experience.

> We're still hoping 's helmet will be effective as we near his

> 2nd birthday. For us we don't need much growth in the

> circumference, but just some rounding out of the flat area. We

> think we still see some really subtle filling in of the flat area

> in back.