Re: Lochlan: DOC update, Tort update, sickness (and untreated adult), development questions

[Guest guest]

Hi Kim,

Have you become a member of the tort board yet? You may want to

check that out for all your tort questions. From what I hear though

it's next to impossible to repo if tort is still present. I'd try to

keep him in a band as long as possible, but it looks like he's about

done. Those red spots you see can be from the holding points, but

normally they should still fade before two hours. Sounds like he's

gettin good checkups with CT so wouldn't worry too much about them

unless you see them getting worse.

Sorry, can't answer any of the developmental issues you see. Sounds

like you are on the ball with everything though!

Good luck,

Crista-Grayslake, IL

D-19 mo-brachy DOCGrad

--- In Plagiocephaly , " Kim " <geckoed@c...>

wrote:

> HI all,

> Lochlan will be 4 months old on the 22nd. He was born at 37 weeks

> gestation, had breathing troubles and a neck mass (cystic hygroma or

> lymphangioma- same thing just 2 possible names for it, it's

a " tangle of

> lymph tissue " ) and was transported to a bigger hospital for a NICU

stay.

> Thanks to the hygroma we were very aware of his neck. So he was 2

weeks

> old when I noted his neck tilt and self-diagnosed torticollis

thanks to

> a google search. Those links took me to plagio sites and his

forehead

> bossing was explained there. I started repo right away, though I

confess

> I wasn't aggressive in it at first. By 6 weeks his head was much

worse

> and I really started working at the repo, took head shots etc. At 12

> weeks we got our cranial tech measurements done. The day before he

> turned 3 months old he was casted, a week later banded. Because he's

> only 3 months old we go twice a week for adjustments. We spend 8-9

hours

> in the car on those days.

> Lochlan doesn't mind the band at all. In a week or two we get to

cut

> back to once-a-week trips On trip days should I wedge his head to

> center, or wedge it to one side to help stretch the tight neck

muscle?

> His DOC band is rubbing his hair off. He has a dime-sized pink spot

that

> takes a while to go away, but isn't dark red, and IS in a " holding

area "

> so that's pretty normal right? His forehead is filling in, but

facial

> asymmetry and ear alignment are not any better (in fact the facial

> asymmetry looks worse this week?). His cranial vault asymmetry was

22mm

> and the head height is not getting any better yet. He's growing so

fast

> that they say he'll probably only wear it for 7 weeks total... I'm

> afraid he won't get enough correction, I'm also afraid that we'll

have

> regression since he's so young. I'm trying to start repo back up in

the

> hopes that he gets used to it, I get good at it, and it helps his

neck

> BEFORE we get the band off so we won't have regression issues. Our

> insurance isn't covering and we're a single-income family so a 2nd

band

> would be very difficult.

> We are doing neck work as often as we can, at least 3x/day. We

have 5

> stretches to do. His ROM is good, his rotation is near-perfect, but

he's

> still SO stiff on the side-bend. He tilts badly when held upright. I

> worry that will cause regression too when we come out of the band.

Any

> tips for tort I may be missing?

> Lochlan has bronchiolitis as a complication of RSV right now. He's

> been very sick. We have spent 10 days now at the Drs, in the

hospital,

> or driving to Cranial Tech EVERY one of those days. While he was in

the

> hospital only ONE person knew what the band was for. All the other

Drs

> and nurses had to ask. One nurse was amazed, asked tons of

questions.

> She was a baby with plagio 63 years ago! Her ears are uneven. She

wears

> glasses and they actually use 2 pairs to make a pair for her, one a

> childs pair, to get the ear part to fit. She can't wear sunglasses.

One

> eyebrow is obscured by her glasses; the other is above them because

her

> eyes aren't the same. She is very distressed by her asymmetry. She

tried

> to get cranial surgery to fill in her flat spot and even her

features,

> but nobody would do it. She says she won't wear a pony tail or go

out

> with wet hair. She always " poofs " her hair to cover her flat spot. I

> felt bad for her, but it also reinforced my conviction that I am

doing

> the right thing. She came in to play with Lochlan and talk about her

> head and his every day that we were in the hospital. Lochlan is

slowly

> getting better now.

> Development. Lochlan didn't achieve a social smile until 14 weeks

of

> age. He didn't coo until 12 weeks. He does not babble (at 16.5

weeks).

> His hands are still clenched. He doesn't reach for things or bat at

> toys. He CAN track visually, but you have to get him in the right

mood

> at the right time and with the right thing... we've only gotten him

to

> track visually 3 times. His arms and legs shake sometimes in jerky

> uncoordinated movements... seems to me the other kids outgrew that

> around 6-8 weeks. His legs also shake really really fast sometimes

for

> 3-30 seconds (like a dogs leg when you rub that one spot). The ped

says

> we'll " keep an eye on him " and that " kids develop at their own

rate " . He

> noted " 6 beats of induced ankle clonus bilaterally " which means he

could

> elicit the leg shake as a reflex by pushing up on the foot quickly.

Has

> anyone had similar experiences? The ped wants to wait another month

and

> then send us to a nuerologist.

> Anyway, thanks for listening, sorry this is so long.

>

> Kim in MI, mom of Connor (6), Skye (5), Trew (2), and Lochlan (3.75

> months, DOC band)

[Guest guest]

Hi Kim,

Have you become a member of the tort board yet? You may want to

check that out for all your tort questions. From what I hear though

it's next to impossible to repo if tort is still present. I'd try to

keep him in a band as long as possible, but it looks like he's about

done. Those red spots you see can be from the holding points, but

normally they should still fade before two hours. Sounds like he's

gettin good checkups with CT so wouldn't worry too much about them

unless you see them getting worse.

Sorry, can't answer any of the developmental issues you see. Sounds

like you are on the ball with everything though!

Good luck,

Crista-Grayslake, IL

D-19 mo-brachy DOCGrad

--- In Plagiocephaly , " Kim " <geckoed@c...>

wrote:

> HI all,

> Lochlan will be 4 months old on the 22nd. He was born at 37 weeks

> gestation, had breathing troubles and a neck mass (cystic hygroma or

> lymphangioma- same thing just 2 possible names for it, it's

a " tangle of

> lymph tissue " ) and was transported to a bigger hospital for a NICU

stay.

> Thanks to the hygroma we were very aware of his neck. So he was 2

weeks

> old when I noted his neck tilt and self-diagnosed torticollis

thanks to

> a google search. Those links took me to plagio sites and his

forehead

> bossing was explained there. I started repo right away, though I

confess

> I wasn't aggressive in it at first. By 6 weeks his head was much

worse

> and I really started working at the repo, took head shots etc. At 12

> weeks we got our cranial tech measurements done. The day before he

> turned 3 months old he was casted, a week later banded. Because he's

> only 3 months old we go twice a week for adjustments. We spend 8-9

hours

> in the car on those days.

> Lochlan doesn't mind the band at all. In a week or two we get to

cut

> back to once-a-week trips On trip days should I wedge his head to

> center, or wedge it to one side to help stretch the tight neck

muscle?

> His DOC band is rubbing his hair off. He has a dime-sized pink spot

that

> takes a while to go away, but isn't dark red, and IS in a " holding

area "

> so that's pretty normal right? His forehead is filling in, but

facial

> asymmetry and ear alignment are not any better (in fact the facial

> asymmetry looks worse this week?). His cranial vault asymmetry was

22mm

> and the head height is not getting any better yet. He's growing so

fast

> that they say he'll probably only wear it for 7 weeks total... I'm

> afraid he won't get enough correction, I'm also afraid that we'll

have

> regression since he's so young. I'm trying to start repo back up in

the

> hopes that he gets used to it, I get good at it, and it helps his

neck

> BEFORE we get the band off so we won't have regression issues. Our

> insurance isn't covering and we're a single-income family so a 2nd

band

> would be very difficult.

> We are doing neck work as often as we can, at least 3x/day. We

have 5

> stretches to do. His ROM is good, his rotation is near-perfect, but

he's

> still SO stiff on the side-bend. He tilts badly when held upright. I

> worry that will cause regression too when we come out of the band.

Any

> tips for tort I may be missing?

> Lochlan has bronchiolitis as a complication of RSV right now. He's

> been very sick. We have spent 10 days now at the Drs, in the

hospital,

> or driving to Cranial Tech EVERY one of those days. While he was in

the

> hospital only ONE person knew what the band was for. All the other

Drs

> and nurses had to ask. One nurse was amazed, asked tons of

questions.

> She was a baby with plagio 63 years ago! Her ears are uneven. She

wears

> glasses and they actually use 2 pairs to make a pair for her, one a

> childs pair, to get the ear part to fit. She can't wear sunglasses.

One

> eyebrow is obscured by her glasses; the other is above them because

her

> eyes aren't the same. She is very distressed by her asymmetry. She

tried

> to get cranial surgery to fill in her flat spot and even her

features,

> but nobody would do it. She says she won't wear a pony tail or go

out

> with wet hair. She always " poofs " her hair to cover her flat spot. I

> felt bad for her, but it also reinforced my conviction that I am

doing

> the right thing. She came in to play with Lochlan and talk about her

> head and his every day that we were in the hospital. Lochlan is

slowly

> getting better now.

> Development. Lochlan didn't achieve a social smile until 14 weeks

of

> age. He didn't coo until 12 weeks. He does not babble (at 16.5

weeks).

> His hands are still clenched. He doesn't reach for things or bat at

> toys. He CAN track visually, but you have to get him in the right

mood

> at the right time and with the right thing... we've only gotten him

to

> track visually 3 times. His arms and legs shake sometimes in jerky

> uncoordinated movements... seems to me the other kids outgrew that

> around 6-8 weeks. His legs also shake really really fast sometimes

for

> 3-30 seconds (like a dogs leg when you rub that one spot). The ped

says

> we'll " keep an eye on him " and that " kids develop at their own

rate " . He

> noted " 6 beats of induced ankle clonus bilaterally " which means he

could

> elicit the leg shake as a reflex by pushing up on the foot quickly.

Has

> anyone had similar experiences? The ped wants to wait another month

and

> then send us to a nuerologist.

> Anyway, thanks for listening, sorry this is so long.

>

> Kim in MI, mom of Connor (6), Skye (5), Trew (2), and Lochlan (3.75

> months, DOC band)

[Guest guest]

Hi Kim,

Great to hear from you. It sounds like Lochlan is doing wonderful

in the helmet. Sometimes it does seem like some aspects of the

plagio get worse during treatment, but like Carol explained

everything else will follow. Do they think he'll get enought

correction out of the one band to get him within normal

measurements? Hannah started w/very similar measurements and got

down to 10mm with her first band. She was banded at 4.5 mos and it

fit her for 10 weeks. Carol gave you some great responses so I

won't repeat her, but please keep us posted on Lochlan.

, mom to Hannah, DOCgrad

Cape Cod, Ma

http://hannahsnoggin.typepad.com

--- In Plagiocephaly , " Kim " <geckoed@c...>

wrote:

> HI all,

> Lochlan will be 4 months old on the 22nd. He was born at 37 weeks

> gestation, had breathing troubles and a neck mass (cystic hygroma

or

> lymphangioma- same thing just 2 possible names for it, it's

a " tangle of

> lymph tissue " ) and was transported to a bigger hospital for a NICU

stay.

> Thanks to the hygroma we were very aware of his neck. So he was 2

weeks

> old when I noted his neck tilt and self-diagnosed torticollis

thanks to

> a google search. Those links took me to plagio sites and his

forehead

> bossing was explained there. I started repo right away, though I

confess

> I wasn't aggressive in it at first. By 6 weeks his head was much

worse

> and I really started working at the repo, took head shots etc. At

12

> weeks we got our cranial tech measurements done. The day before he

> turned 3 months old he was casted, a week later banded. Because

he's

> only 3 months old we go twice a week for adjustments. We spend 8-9

hours

> in the car on those days.

> Lochlan doesn't mind the band at all. In a week or two we get to

cut

> back to once-a-week trips On trip days should I wedge his head

to

> center, or wedge it to one side to help stretch the tight neck

muscle?

> His DOC band is rubbing his hair off. He has a dime-sized pink

spot that

> takes a while to go away, but isn't dark red, and IS in a " holding

area "

> so that's pretty normal right? His forehead is filling in, but

facial

> asymmetry and ear alignment are not any better (in fact the facial

> asymmetry looks worse this week?). His cranial vault asymmetry was

22mm

> and the head height is not getting any better yet. He's growing so

fast

> that they say he'll probably only wear it for 7 weeks total... I'm

> afraid he won't get enough correction, I'm also afraid that we'll

have

> regression since he's so young. I'm trying to start repo back up

in the

> hopes that he gets used to it, I get good at it, and it helps his

neck

> BEFORE we get the band off so we won't have regression issues. Our

> insurance isn't covering and we're a single-income family so a 2nd

band

> would be very difficult.

> We are doing neck work as often as we can, at least 3x/day. We

have 5

> stretches to do. His ROM is good, his rotation is near-perfect,

but he's

> still SO stiff on the side-bend. He tilts badly when held upright.

I

> worry that will cause regression too when we come out of the band.

Any

> tips for tort I may be missing?

> Lochlan has bronchiolitis as a complication of RSV right now.

He's

> been very sick. We have spent 10 days now at the Drs, in the

hospital,

> or driving to Cranial Tech EVERY one of those days. While he was

in the

> hospital only ONE person knew what the band was for. All the other

Drs

> and nurses had to ask. One nurse was amazed, asked tons of

questions.

> She was a baby with plagio 63 years ago! Her ears are uneven. She

wears

> glasses and they actually use 2 pairs to make a pair for her, one a

> childs pair, to get the ear part to fit. She can't wear

sunglasses. One

> eyebrow is obscured by her glasses; the other is above them

because her

> eyes aren't the same. She is very distressed by her asymmetry. She

tried

> to get cranial surgery to fill in her flat spot and even her

features,

> but nobody would do it. She says she won't wear a pony tail or go

out

> with wet hair. She always " poofs " her hair to cover her flat spot.

I

> felt bad for her, but it also reinforced my conviction that I am

doing

> the right thing. She came in to play with Lochlan and talk about

her

> head and his every day that we were in the hospital. Lochlan is

slowly

> getting better now.

> Development. Lochlan didn't achieve a social smile until 14

weeks of

> age. He didn't coo until 12 weeks. He does not babble (at 16.5

weeks).

> His hands are still clenched. He doesn't reach for things or bat at

> toys. He CAN track visually, but you have to get him in the right

mood

> at the right time and with the right thing... we've only gotten

him to

> track visually 3 times. His arms and legs shake sometimes in jerky

> uncoordinated movements... seems to me the other kids outgrew that

> around 6-8 weeks. His legs also shake really really fast sometimes

for

> 3-30 seconds (like a dogs leg when you rub that one spot). The ped

says

> we'll " keep an eye on him " and that " kids develop at their own

rate " . He

> noted " 6 beats of induced ankle clonus bilaterally " which means he

could

> elicit the leg shake as a reflex by pushing up on the foot

quickly. Has

> anyone had similar experiences? The ped wants to wait another

month and

> then send us to a nuerologist.

> Anyway, thanks for listening, sorry this is so long.

>

> Kim in MI, mom of Connor (6), Skye (5), Trew (2), and Lochlan (3.75

> months, DOC band)