Overall muscle tone issues

[Guest guest]

Hi all,

I have a question about your babies muscle tone. I know that the calf

muscles do not develop properly, but has anyone experienced overall

muscle tone issues with their babies? My daughter gets physical

therapy because she is very weak and once the therapist discovered

that her back cracks every time I pick her up and has since birth she

said that she was born with weak muscles. Her back muscles cannot hold

her spine in the proper position. cannot support her weight

with her arms (she is almost 12 months). She cannot yet catch her fall

from sitting and her arms just give out. Is it possible that her other

muscles developed like her calf muscles? My husband is very concerned

about this. He wonders if she will ever develop as she should. I don't

have the answers and thought maybe someone else has dealt with this.

I'd appreciate any insight you have. Thanks!!

Donna

mother to 6-5-92, 7-19-99, Jakob 12-06-01,

BLCF 11-01-04

[Guest guest]

Hi all,

I have a question about your babies muscle tone. I know that the calf

muscles do not develop properly, but has anyone experienced overall

muscle tone issues with their babies? My daughter gets physical

therapy because she is very weak and once the therapist discovered

that her back cracks every time I pick her up and has since birth she

said that she was born with weak muscles. Her back muscles cannot hold

her spine in the proper position. cannot support her weight

with her arms (she is almost 12 months). She cannot yet catch her fall

from sitting and her arms just give out. Is it possible that her other

muscles developed like her calf muscles? My husband is very concerned

about this. He wonders if she will ever develop as she should. I don't

have the answers and thought maybe someone else has dealt with this.

I'd appreciate any insight you have. Thanks!!

Donna

mother to 6-5-92, 7-19-99, Jakob 12-06-01,

BLCF 11-01-04

[Guest guest]

Im sorry I dont have an awnser for you, but I was noticing that you have 3 boys,

then a girl with CF. I have the same thing! 4 kids...lol My girl is my youngest

and the only one with CF! If youd like to talk some time, give me a call. Im in

Oregon.

Christee

9yrs, Aspen 5 1/2yrs, Dylan 3 1/2yrs, Lilee (Pronounced Lily) R CF/

L MA currently flying to see Dr. Ponseti for A-Typical CF w/Plantaris/Cavus

donnabrooke1 wrote:

Hi all,

I have a question about your babies muscle tone. I know that the calf

muscles do not develop properly, but has anyone experienced overall

muscle tone issues with their babies? My daughter gets physical

therapy because she is very weak and once the therapist discovered

that her back cracks every time I pick her up and has since birth she

said that she was born with weak muscles. Her back muscles cannot hold

her spine in the proper position. cannot support her weight

with her arms (she is almost 12 months). She cannot yet catch her fall

from sitting and her arms just give out. Is it possible that her other

muscles developed like her calf muscles? My husband is very concerned

about this. He wonders if she will ever develop as she should. I don't

have the answers and thought maybe someone else has dealt with this.

I'd appreciate any insight you have. Thanks!!

Donna

mother to 6-5-92, 7-19-99, Jakob 12-06-01,

BLCF 11-01-04

[Guest guest]

Im sorry I dont have an awnser for you, but I was noticing that you have 3 boys,

then a girl with CF. I have the same thing! 4 kids...lol My girl is my youngest

and the only one with CF! If youd like to talk some time, give me a call. Im in

Oregon.

Christee

9yrs, Aspen 5 1/2yrs, Dylan 3 1/2yrs, Lilee (Pronounced Lily) R CF/

L MA currently flying to see Dr. Ponseti for A-Typical CF w/Plantaris/Cavus

donnabrooke1 wrote:

Hi all,

I have a question about your babies muscle tone. I know that the calf

muscles do not develop properly, but has anyone experienced overall

muscle tone issues with their babies? My daughter gets physical

therapy because she is very weak and once the therapist discovered

that her back cracks every time I pick her up and has since birth she

said that she was born with weak muscles. Her back muscles cannot hold

her spine in the proper position. cannot support her weight

with her arms (she is almost 12 months). She cannot yet catch her fall

from sitting and her arms just give out. Is it possible that her other

muscles developed like her calf muscles? My husband is very concerned

about this. He wonders if she will ever develop as she should. I don't

have the answers and thought maybe someone else has dealt with this.

I'd appreciate any insight you have. Thanks!!

Donna

mother to 6-5-92, 7-19-99, Jakob 12-06-01,

BLCF 11-01-04

[Guest guest]

Donna,

I really don't think that the low tone in your daughter is related to the calf

muscles although I can see why you might think that. My daughter also was born

with low tone and spent some time in the NICU where the jerk neonatalogist

attempted to label her with every 'fatal before two years old' disease he could

come up with. What an idiot. Anyway, she's been in PT, OT and ST (she also has

gastro issues and feeding is really our biggest issue as cf is so much less of

an issue) and her tone is completely improved. She can lift herself up just

using her stomach muscles from hanging over the edge of something. Man I'd love

to show that to the jerk. She is 20 mos old and is not walking on her own yet

but we all feel that is directly related to her very lose ligaments as she can

do the mechanics of it and walks everywhere she gets a chance - just has to have

a finger to help her balance. But let me say that this week she's walked all

the way across our family room unassisted as long as we get her going. She's

going to be just fine. Oh I digress. Anyway, keep working with your PT. Do

the stuff she does during PT daily with your daughter. She'll improve much more

quickly. Ask for homework. Do it faithfully as well. Is she delayed in any

other area?

Chris

Overall muscle tone issues

Hi all,

I have a question about your babies muscle tone. I know that the calf

muscles do not develop properly, but has anyone experienced overall

muscle tone issues with their babies? My daughter gets physical

therapy because she is very weak and once the therapist discovered

that her back cracks every time I pick her up and has since birth she

said that she was born with weak muscles. Her back muscles cannot hold

her spine in the proper position. cannot support her weight

with her arms (she is almost 12 months). She cannot yet catch her fall

from sitting and her arms just give out. Is it possible that her other

muscles developed like her calf muscles? My husband is very concerned

about this. He wonders if she will ever develop as she should. I don't

have the answers and thought maybe someone else has dealt with this.

I'd appreciate any insight you have. Thanks!!

Donna

mother to 6-5-92, 7-19-99, Jakob 12-06-01,

BLCF 11-01-04

[Guest guest]

Donna,

I really don't think that the low tone in your daughter is related to the calf

muscles although I can see why you might think that. My daughter also was born

with low tone and spent some time in the NICU where the jerk neonatalogist

attempted to label her with every 'fatal before two years old' disease he could

come up with. What an idiot. Anyway, she's been in PT, OT and ST (she also has

gastro issues and feeding is really our biggest issue as cf is so much less of

an issue) and her tone is completely improved. She can lift herself up just

using her stomach muscles from hanging over the edge of something. Man I'd love

to show that to the jerk. She is 20 mos old and is not walking on her own yet

but we all feel that is directly related to her very lose ligaments as she can

do the mechanics of it and walks everywhere she gets a chance - just has to have

a finger to help her balance. But let me say that this week she's walked all

the way across our family room unassisted as long as we get her going. She's

going to be just fine. Oh I digress. Anyway, keep working with your PT. Do

the stuff she does during PT daily with your daughter. She'll improve much more

quickly. Ask for homework. Do it faithfully as well. Is she delayed in any

other area?

Chris

Overall muscle tone issues

Hi all,

I have a question about your babies muscle tone. I know that the calf

muscles do not develop properly, but has anyone experienced overall

muscle tone issues with their babies? My daughter gets physical

therapy because she is very weak and once the therapist discovered

that her back cracks every time I pick her up and has since birth she

said that she was born with weak muscles. Her back muscles cannot hold

her spine in the proper position. cannot support her weight

with her arms (she is almost 12 months). She cannot yet catch her fall

from sitting and her arms just give out. Is it possible that her other

muscles developed like her calf muscles? My husband is very concerned

about this. He wonders if she will ever develop as she should. I don't

have the answers and thought maybe someone else has dealt with this.

I'd appreciate any insight you have. Thanks!!

Donna

mother to 6-5-92, 7-19-99, Jakob 12-06-01,

BLCF 11-01-04

[Guest guest]

Thanks for the info. is not delayed in any other way, just

gross motor. She is very verbal and has excellent fine motor skills.

I'm sure it will all work out, too. Another question? My other

children all walked at 12 months, so I'm not sure what the

progression is when they walk later. Is it typical for a child who

walks later to also start crawling later, or do they just typically

stay in the crawling period longer? Does that make sense? I can't

imagine her staying in the crawling phase for 6 months or more after

her 1st birthday, when she wants to stand but just cannot. Of

course, it may still be months before she gets to the crawling

stage, from what her pt is telling me. I know, crawling is not a

developmental stage, but because of her low muscle tone, her pt says

we do not want to encourage walking/standing at this point because

she might not develop the core/upper body/arm strength if she skips

right to walking. All of this information leads me to another

question that has really been on my mind. Everything I have been

reading lately says that they should be in the FAB full time until

weight bearing. went from 23/7 starting at 5.5 months old,

directly to 12/7 at 7 months old. So she has been at 12 hours for

the last 5 months, and does not bear weight at all. I keep asking

her doctor and he says she absolutely does not need to be in it

longer, but I guess I just compare that advice to what others are

hearing and it makes me wonder. Her feet are not out-turned when she

is standing, they are straight. When she sits they do not turn in

(toe-in), but they do turn up a bit (bottom flips up). Her doctor

says it doesn't matter what they do when she is sitting/relaxed, but

only how they look when she is standing. True? I really need to get

that book from Global Health. Thought I ordered it but that was

weeks ago and I have not received it. I cannot download it for some

unknown reason (computer illiterate!). Anyway, thanks!

Donna

>

> Donna,

> I really don't think that the low tone in your daughter is

related to the calf muscles although I can see why you might think

that. My daughter also was born with low tone and spent some time

in the NICU where the jerk neonatalogist attempted to label her with

every 'fatal before two years old' disease he could come up with.

What an idiot. Anyway, she's been in PT, OT and ST (she also has

gastro issues and feeding is really our biggest issue as cf is so

much less of an issue) and her tone is completely improved. She can

lift herself up just using her stomach muscles from hanging over the

edge of something. Man I'd love to show that to the jerk. She is

20 mos old and is not walking on her own yet but we all feel that is

directly related to her very lose ligaments as she can do the

mechanics of it and walks everywhere she gets a chance - just has to

have a finger to help her balance. But let me say that this week

she's walked all the way across our family room unassisted as long

as we get her going. She's going to be just fine. Oh I digress.

Anyway, keep working with your PT. Do the stuff she does during PT

daily with your daughter. She'll improve much more quickly. Ask

for homework. Do it faithfully as well. Is she delayed in any

other area?

> Chris

> Overall muscle tone issues

>

>

> Hi all,

>

> I have a question about your babies muscle tone. I know that the

calf

> muscles do not develop properly, but has anyone experienced

overall

> muscle tone issues with their babies? My daughter gets physical

> therapy because she is very weak and once the therapist

discovered

> that her back cracks every time I pick her up and has since

birth she

> said that she was born with weak muscles. Her back muscles

cannot hold

> her spine in the proper position. cannot support her

weight

> with her arms (she is almost 12 months). She cannot yet catch

her fall

> from sitting and her arms just give out. Is it possible that her

other

> muscles developed like her calf muscles? My husband is very

concerned

> about this. He wonders if she will ever develop as she should. I

don't

> have the answers and thought maybe someone else has dealt with

this.

> I'd appreciate any insight you have. Thanks!!

>

> Donna

> mother to 6-5-92, 7-19-99, Jakob 12-06-01,

> BLCF 11-01-04

>

>

>

>

>

>

[Guest guest]

Thanks for the info. is not delayed in any other way, just

gross motor. She is very verbal and has excellent fine motor skills.

I'm sure it will all work out, too. Another question? My other

children all walked at 12 months, so I'm not sure what the

progression is when they walk later. Is it typical for a child who

walks later to also start crawling later, or do they just typically

stay in the crawling period longer? Does that make sense? I can't

imagine her staying in the crawling phase for 6 months or more after

her 1st birthday, when she wants to stand but just cannot. Of

course, it may still be months before she gets to the crawling

stage, from what her pt is telling me. I know, crawling is not a

developmental stage, but because of her low muscle tone, her pt says

we do not want to encourage walking/standing at this point because

she might not develop the core/upper body/arm strength if she skips

right to walking. All of this information leads me to another

question that has really been on my mind. Everything I have been

reading lately says that they should be in the FAB full time until

weight bearing. went from 23/7 starting at 5.5 months old,

directly to 12/7 at 7 months old. So she has been at 12 hours for

the last 5 months, and does not bear weight at all. I keep asking

her doctor and he says she absolutely does not need to be in it

longer, but I guess I just compare that advice to what others are

hearing and it makes me wonder. Her feet are not out-turned when she

is standing, they are straight. When she sits they do not turn in

(toe-in), but they do turn up a bit (bottom flips up). Her doctor

says it doesn't matter what they do when she is sitting/relaxed, but

only how they look when she is standing. True? I really need to get

that book from Global Health. Thought I ordered it but that was

weeks ago and I have not received it. I cannot download it for some

unknown reason (computer illiterate!). Anyway, thanks!

Donna

>

> Donna,

> I really don't think that the low tone in your daughter is

related to the calf muscles although I can see why you might think

that. My daughter also was born with low tone and spent some time

in the NICU where the jerk neonatalogist attempted to label her with

every 'fatal before two years old' disease he could come up with.

What an idiot. Anyway, she's been in PT, OT and ST (she also has

gastro issues and feeding is really our biggest issue as cf is so

much less of an issue) and her tone is completely improved. She can

lift herself up just using her stomach muscles from hanging over the

edge of something. Man I'd love to show that to the jerk. She is

20 mos old and is not walking on her own yet but we all feel that is

directly related to her very lose ligaments as she can do the

mechanics of it and walks everywhere she gets a chance - just has to

have a finger to help her balance. But let me say that this week

she's walked all the way across our family room unassisted as long

as we get her going. She's going to be just fine. Oh I digress.

Anyway, keep working with your PT. Do the stuff she does during PT

daily with your daughter. She'll improve much more quickly. Ask

for homework. Do it faithfully as well. Is she delayed in any

other area?

> Chris

> Overall muscle tone issues

>

>

> Hi all,

>

> I have a question about your babies muscle tone. I know that the

calf

> muscles do not develop properly, but has anyone experienced

overall

> muscle tone issues with their babies? My daughter gets physical

> therapy because she is very weak and once the therapist

discovered

> that her back cracks every time I pick her up and has since

birth she

> said that she was born with weak muscles. Her back muscles

cannot hold

> her spine in the proper position. cannot support her

weight

> with her arms (she is almost 12 months). She cannot yet catch

her fall

> from sitting and her arms just give out. Is it possible that her

other

> muscles developed like her calf muscles? My husband is very

concerned

> about this. He wonders if she will ever develop as she should. I

don't

> have the answers and thought maybe someone else has dealt with

this.

> I'd appreciate any insight you have. Thanks!!

>

> Donna

> mother to 6-5-92, 7-19-99, Jakob 12-06-01,

> BLCF 11-01-04

>

>

>

>

>

>

[Guest guest]

Christee,

I always thought it was strange that my girl got the club feet,

since it is supposedly much more prevalent in boys. Weird, eh? I

will call you sometime. 3 hour time difference? I'm in New York.

When is a good time to call you? I'm a SAHM, so I'm pretty flexible.

Thanks!

Donna

> Hi all,

>

> I have a question about your babies muscle tone. I know that the

calf

> muscles do not develop properly, but has anyone experienced

overall

> muscle tone issues with their babies? My daughter gets physical

> therapy because she is very weak and once the therapist discovered

> that her back cracks every time I pick her up and has since birth

she

> said that she was born with weak muscles. Her back muscles cannot

hold

> her spine in the proper position. cannot support her weight

> with her arms (she is almost 12 months). She cannot yet catch her

fall

> from sitting and her arms just give out. Is it possible that her

other

> muscles developed like her calf muscles? My husband is very

concerned

> about this. He wonders if she will ever develop as she should. I

don't

> have the answers and thought maybe someone else has dealt with

this.

> I'd appreciate any insight you have. Thanks!!

>

> Donna

> mother to 6-5-92, 7-19-99, Jakob 12-06-01,

> BLCF 11-01-04

>

>

>

>

>

>

[Guest guest]

Christee,

I always thought it was strange that my girl got the club feet,

since it is supposedly much more prevalent in boys. Weird, eh? I

will call you sometime. 3 hour time difference? I'm in New York.

When is a good time to call you? I'm a SAHM, so I'm pretty flexible.

Thanks!

Donna

> Hi all,

>

> I have a question about your babies muscle tone. I know that the

calf

> muscles do not develop properly, but has anyone experienced

overall

> muscle tone issues with their babies? My daughter gets physical

> therapy because she is very weak and once the therapist discovered

> that her back cracks every time I pick her up and has since birth

she

> said that she was born with weak muscles. Her back muscles cannot

hold

> her spine in the proper position. cannot support her weight

> with her arms (she is almost 12 months). She cannot yet catch her

fall

> from sitting and her arms just give out. Is it possible that her

other

> muscles developed like her calf muscles? My husband is very

concerned

> about this. He wonders if she will ever develop as she should. I

don't

> have the answers and thought maybe someone else has dealt with

this.

> I'd appreciate any insight you have. Thanks!!

>

> Donna

> mother to 6-5-92, 7-19-99, Jakob 12-06-01,

> BLCF 11-01-04

>

>

>

>

>

>

[Guest guest]

Donna,

The low muscle tone does cause some later milestones. went from laying to

commando crawling and then up on her knees but her knees weren't underneath her

body but out to the sides. Does that make sense? Then as her trunk strength

grew, she was able to bring her legs in under her body more. Now she crawls

just fine. Your PT is right - crawling is an important step and it does more

than we think. There are muscles in her arms and upper trunk that are developed

by crawling as she leans on and off of her pads on her palms and such. there is

also scientific evidence that links crawling before walking to easier ability to

decode words and read. So crawling needs to come first for a variety of

reasons. Hang in there. Crawling will come when her muscles can handle it and

then weight bearing isn't far behind.

As for hours in the DBB - Dr. P's protocol says to go from 23/7 to a gradual

decrease in order to maintain correction. Because 's feet are atypical

Dr. P took us down more gradually after the second correction from 23 to 22 to

20 to 18 and now down to just when she's sleeping at night but we have other

issues. Our local ortho followed the 23 to 18 - 20 down to nights and naps or

14 hours as Dr. P recommends when we first were corrected. When they are

weight bearing then the weight of their bodies helps to maintain correction.

Does that make sense? And it does matter what their little feet look like when

relaxed. At least to some extent. It was a good clue to us that confirmed that

was relapsing when her bottom of her foot was totally facing her bucket

again and it hadn't been shortly after full correction. Make sense? If not,

please ask.

Hang in there. She'll be fine if this is her only issue. Really! I know it is

hard to handle sometimes that she isn't where her peers are but you know, in the

great scheme of things, when they are in college no one is going to say " when

did you start walking? " KWIM?

Chris

Overall muscle tone issues

>

>

> Hi all,

>

> I have a question about your babies muscle tone. I know that the

calf

> muscles do not develop properly, but has anyone experienced

overall

> muscle tone issues with their babies? My daughter gets physical

> therapy because she is very weak and once the therapist

discovered

> that her back cracks every time I pick her up and has since

birth she

> said that she was born with weak muscles. Her back muscles

cannot hold

> her spine in the proper position. cannot support her

weight

> with her arms (she is almost 12 months). She cannot yet catch

her fall

> from sitting and her arms just give out. Is it possible that her

other

> muscles developed like her calf muscles? My husband is very

concerned

> about this. He wonders if she will ever develop as she should. I

don't

> have the answers and thought maybe someone else has dealt with

this.

> I'd appreciate any insight you have. Thanks!!

>

> Donna

> mother to 6-5-92, 7-19-99, Jakob 12-06-01,

> BLCF 11-01-04

>

>

>

>

>

>

[Guest guest]

Donna,

The low muscle tone does cause some later milestones. went from laying to

commando crawling and then up on her knees but her knees weren't underneath her

body but out to the sides. Does that make sense? Then as her trunk strength

grew, she was able to bring her legs in under her body more. Now she crawls

just fine. Your PT is right - crawling is an important step and it does more

than we think. There are muscles in her arms and upper trunk that are developed

by crawling as she leans on and off of her pads on her palms and such. there is

also scientific evidence that links crawling before walking to easier ability to

decode words and read. So crawling needs to come first for a variety of

reasons. Hang in there. Crawling will come when her muscles can handle it and

then weight bearing isn't far behind.

As for hours in the DBB - Dr. P's protocol says to go from 23/7 to a gradual

decrease in order to maintain correction. Because 's feet are atypical

Dr. P took us down more gradually after the second correction from 23 to 22 to

20 to 18 and now down to just when she's sleeping at night but we have other

issues. Our local ortho followed the 23 to 18 - 20 down to nights and naps or

14 hours as Dr. P recommends when we first were corrected. When they are

weight bearing then the weight of their bodies helps to maintain correction.

Does that make sense? And it does matter what their little feet look like when

relaxed. At least to some extent. It was a good clue to us that confirmed that

was relapsing when her bottom of her foot was totally facing her bucket

again and it hadn't been shortly after full correction. Make sense? If not,

please ask.

Hang in there. She'll be fine if this is her only issue. Really! I know it is

hard to handle sometimes that she isn't where her peers are but you know, in the

great scheme of things, when they are in college no one is going to say " when

did you start walking? " KWIM?

Chris

Overall muscle tone issues

>

>

> Hi all,

>

> I have a question about your babies muscle tone. I know that the

calf

> muscles do not develop properly, but has anyone experienced

overall

> muscle tone issues with their babies? My daughter gets physical

> therapy because she is very weak and once the therapist

discovered

> that her back cracks every time I pick her up and has since

birth she

> said that she was born with weak muscles. Her back muscles

cannot hold

> her spine in the proper position. cannot support her

weight

> with her arms (she is almost 12 months). She cannot yet catch

her fall

> from sitting and her arms just give out. Is it possible that her

other

> muscles developed like her calf muscles? My husband is very

concerned

> about this. He wonders if she will ever develop as she should. I

don't

> have the answers and thought maybe someone else has dealt with

this.

> I'd appreciate any insight you have. Thanks!!

>

> Donna

> mother to 6-5-92, 7-19-99, Jakob 12-06-01,

> BLCF 11-01-04

>

>

>

>

>

>

[Guest guest]

Donna,

I don't think there are any hard and fast answers to what you are

asking. We know that every child develops at a different pace, some

never crawl, etc. It seems would be one where as difficult as

it is, you will just have to wait and see what she does when. I would

just keep working with the PT and additionally, just like we tell

everyone about their ortho doctors, if you are concerned that

is still not progressing, get a second opinion on the PT side of things.

I would not be concerned about her not being in the FAB longer hours

just because she is not weight bearing yet unless you or her doctor

are seeing relapse signs. If you stretch her feet do they still

abduct to 70 degrees or more easily? If so, and her doctor still

thinks everything looks great then I would say she is fine.

HTH,

> >

> > Donna,

> > I really don't think that the low tone in your daughter is

> related to the calf muscles although I can see why you might think

> that. My daughter also was born with low tone and spent some time

> in the NICU where the jerk neonatalogist attempted to label her with

> every 'fatal before two years old' disease he could come up with.

> What an idiot. Anyway, she's been in PT, OT and ST (she also has

> gastro issues and feeding is really our biggest issue as cf is so

> much less of an issue) and her tone is completely improved. She can

> lift herself up just using her stomach muscles from hanging over the

> edge of something. Man I'd love to show that to the jerk. She is

> 20 mos old and is not walking on her own yet but we all feel that is

> directly related to her very lose ligaments as she can do the

> mechanics of it and walks everywhere she gets a chance - just has to

> have a finger to help her balance. But let me say that this week

> she's walked all the way across our family room unassisted as long

> as we get her going. She's going to be just fine. Oh I digress.

> Anyway, keep working with your PT. Do the stuff she does during PT

> daily with your daughter. She'll improve much more quickly. Ask

> for homework. Do it faithfully as well. Is she delayed in any

> other area?

> > Chris

> > Overall muscle tone issues

> >

> >

> > Hi all,

> >

> > I have a question about your babies muscle tone. I know that the

> calf

> > muscles do not develop properly, but has anyone experienced

> overall

> > muscle tone issues with their babies? My daughter gets physical

> > therapy because she is very weak and once the therapist

> discovered

> > that her back cracks every time I pick her up and has since

> birth she

> > said that she was born with weak muscles. Her back muscles

> cannot hold

> > her spine in the proper position. cannot support her

> weight

> > with her arms (she is almost 12 months). She cannot yet catch

> her fall

> > from sitting and her arms just give out. Is it possible that her

> other

> > muscles developed like her calf muscles? My husband is very

> concerned

> > about this. He wonders if she will ever develop as she should. I

> don't

> > have the answers and thought maybe someone else has dealt with

> this.

> > I'd appreciate any insight you have. Thanks!!

> >

> > Donna

> > mother to 6-5-92, 7-19-99, Jakob 12-06-01,

>

> > BLCF 11-01-04

> >

> >

> >

> >

> >

> >

[Guest guest]

Donna,

I don't think there are any hard and fast answers to what you are

asking. We know that every child develops at a different pace, some

never crawl, etc. It seems would be one where as difficult as

it is, you will just have to wait and see what she does when. I would

just keep working with the PT and additionally, just like we tell

everyone about their ortho doctors, if you are concerned that

is still not progressing, get a second opinion on the PT side of things.

I would not be concerned about her not being in the FAB longer hours

just because she is not weight bearing yet unless you or her doctor

are seeing relapse signs. If you stretch her feet do they still

abduct to 70 degrees or more easily? If so, and her doctor still

thinks everything looks great then I would say she is fine.

HTH,

> >

> > Donna,

> > I really don't think that the low tone in your daughter is

> related to the calf muscles although I can see why you might think

> that. My daughter also was born with low tone and spent some time

> in the NICU where the jerk neonatalogist attempted to label her with

> every 'fatal before two years old' disease he could come up with.

> What an idiot. Anyway, she's been in PT, OT and ST (she also has

> gastro issues and feeding is really our biggest issue as cf is so

> much less of an issue) and her tone is completely improved. She can

> lift herself up just using her stomach muscles from hanging over the

> edge of something. Man I'd love to show that to the jerk. She is

> 20 mos old and is not walking on her own yet but we all feel that is

> directly related to her very lose ligaments as she can do the

> mechanics of it and walks everywhere she gets a chance - just has to

> have a finger to help her balance. But let me say that this week

> she's walked all the way across our family room unassisted as long

> as we get her going. She's going to be just fine. Oh I digress.

> Anyway, keep working with your PT. Do the stuff she does during PT

> daily with your daughter. She'll improve much more quickly. Ask

> for homework. Do it faithfully as well. Is she delayed in any

> other area?

> > Chris

> > Overall muscle tone issues

> >

> >

> > Hi all,

> >

> > I have a question about your babies muscle tone. I know that the

> calf

> > muscles do not develop properly, but has anyone experienced

> overall

> > muscle tone issues with their babies? My daughter gets physical

> > therapy because she is very weak and once the therapist

> discovered

> > that her back cracks every time I pick her up and has since

> birth she

> > said that she was born with weak muscles. Her back muscles

> cannot hold

> > her spine in the proper position. cannot support her

> weight

> > with her arms (she is almost 12 months). She cannot yet catch

> her fall

> > from sitting and her arms just give out. Is it possible that her

> other

> > muscles developed like her calf muscles? My husband is very

> concerned

> > about this. He wonders if she will ever develop as she should. I

> don't

> > have the answers and thought maybe someone else has dealt with

> this.

> > I'd appreciate any insight you have. Thanks!!

> >

> > Donna

> > mother to 6-5-92, 7-19-99, Jakob 12-06-01,

>

> > BLCF 11-01-04

> >

> >

> >

> >

> >

> >

[Guest guest]

Donna,

I will reply to the email you sent about the pictures, I haven't

forgotten you.

But I wanted to mention that perhaps you don't have Adobe Reader

installed on your puter and that's what you need to view this

document. Go to www.adobe.com and download the free Adobe

reader. Then install it according to the instructions and when you

try to open the Global Help booklet it will open right up for you.

Also, there should be no information out there saying full time till

standing. That's not accurate. It's full time (23/7) for 3 mo's,

then gradually reducing till baby is at 14-16 till walking. Upon

walking, you should be comfortable reducing to 12-14 and it stays

that way till release from the FAB at 3-4y. Is she abducted to 70

degrees on her bar?

I wanna see pics of her feet, I will email you privately with info

about how to send those to the CFPics list.

Kori

At 05:07 AM 10/14/2005, you wrote:

>

>Thanks for the info. is not delayed in any other way, just

>gross motor. She is very verbal and has excellent fine motor skills.

>I'm sure it will all work out, too. Another question? My other

>children all walked at 12 months, so I'm not sure what the

>progression is when they walk later. Is it typical for a child who

>walks later to also start crawling later, or do they just typically

>stay in the crawling period longer? Does that make sense? I can't

>imagine her staying in the crawling phase for 6 months or more after

>her 1st birthday, when she wants to stand but just cannot. Of

>course, it may still be months before she gets to the crawling

>stage, from what her pt is telling me. I know, crawling is not a

>developmental stage, but because of her low muscle tone, her pt says

>we do not want to encourage walking/standing at this point because

>she might not develop the core/upper body/arm strength if she skips

>right to walking. All of this information leads me to another

>question that has really been on my mind. Everything I have been

>reading lately says that they should be in the FAB full time until

>weight bearing. went from 23/7 starting at 5.5 months old,

>directly to 12/7 at 7 months old. So she has been at 12 hours for

>the last 5 months, and does not bear weight at all. I keep asking

>her doctor and he says she absolutely does not need to be in it

>longer, but I guess I just compare that advice to what others are

>hearing and it makes me wonder. Her feet are not out-turned when she

>is standing, they are straight. When she sits they do not turn in

>(toe-in), but they do turn up a bit (bottom flips up). Her doctor

>says it doesn't matter what they do when she is sitting/relaxed, but

>only how they look when she is standing. True? I really need to get

>that book from Global Health. Thought I ordered it but that was

>weeks ago and I have not received it. I cannot download it for some

>unknown reason (computer illiterate!). Anyway, thanks!

>

>Donna

>

>

> >

> > Donna,

> > I really don't think that the low tone in your daughter is

>related to the calf muscles although I can see why you might think

>that. My daughter also was born with low tone and spent some time

>in the NICU where the jerk neonatalogist attempted to label her with

>every 'fatal before two years old' disease he could come up with.

>What an idiot. Anyway, she's been in PT, OT and ST (she also has

>gastro issues and feeding is really our biggest issue as cf is so

>much less of an issue) and her tone is completely improved. She can

>lift herself up just using her stomach muscles from hanging over the

>edge of something. Man I'd love to show that to the jerk. She is

>20 mos old and is not walking on her own yet but we all feel that is

>directly related to her very lose ligaments as she can do the

>mechanics of it and walks everywhere she gets a chance - just has to

>have a finger to help her balance. But let me say that this week

>she's walked all the way across our family room unassisted as long

>as we get her going. She's going to be just fine. Oh I digress.

>Anyway, keep working with your PT. Do the stuff she does during PT

>daily with your daughter. She'll improve much more quickly. Ask

>for homework. Do it faithfully as well. Is she delayed in any

>other area?

> > Chris

> > Overall muscle tone issues

> >

> >

> > Hi all,

> >

> > I have a question about your babies muscle tone. I know that the

>calf

> > muscles do not develop properly, but has anyone experienced

>overall

> > muscle tone issues with their babies? My daughter gets physical

> > therapy because she is very weak and once the therapist

>discovered

> > that her back cracks every time I pick her up and has since

>birth she

> > said that she was born with weak muscles. Her back muscles

>cannot hold

> > her spine in the proper position. cannot support her

>weight

> > with her arms (she is almost 12 months). She cannot yet catch

>her fall

> > from sitting and her arms just give out. Is it possible that her

>other

> > muscles developed like her calf muscles? My husband is very

>concerned

> > about this. He wonders if she will ever develop as she should. I

>don't

> > have the answers and thought maybe someone else has dealt with

>this.

> > I'd appreciate any insight you have. Thanks!!

> >

> > Donna

> > mother to 6-5-92, 7-19-99, Jakob 12-06-01,

>

> > BLCF 11-01-04

> >

> >

> >

> >

> >

> >

[Guest guest]

Donna,

I will reply to the email you sent about the pictures, I haven't

forgotten you.

But I wanted to mention that perhaps you don't have Adobe Reader

installed on your puter and that's what you need to view this

document. Go to www.adobe.com and download the free Adobe

reader. Then install it according to the instructions and when you

try to open the Global Help booklet it will open right up for you.

Also, there should be no information out there saying full time till

standing. That's not accurate. It's full time (23/7) for 3 mo's,

then gradually reducing till baby is at 14-16 till walking. Upon

walking, you should be comfortable reducing to 12-14 and it stays

that way till release from the FAB at 3-4y. Is she abducted to 70

degrees on her bar?

I wanna see pics of her feet, I will email you privately with info

about how to send those to the CFPics list.

Kori

At 05:07 AM 10/14/2005, you wrote:

>

>Thanks for the info. is not delayed in any other way, just

>gross motor. She is very verbal and has excellent fine motor skills.

>I'm sure it will all work out, too. Another question? My other

>children all walked at 12 months, so I'm not sure what the

>progression is when they walk later. Is it typical for a child who

>walks later to also start crawling later, or do they just typically

>stay in the crawling period longer? Does that make sense? I can't

>imagine her staying in the crawling phase for 6 months or more after

>her 1st birthday, when she wants to stand but just cannot. Of

>course, it may still be months before she gets to the crawling

>stage, from what her pt is telling me. I know, crawling is not a

>developmental stage, but because of her low muscle tone, her pt says

>we do not want to encourage walking/standing at this point because

>she might not develop the core/upper body/arm strength if she skips

>right to walking. All of this information leads me to another

>question that has really been on my mind. Everything I have been

>reading lately says that they should be in the FAB full time until

>weight bearing. went from 23/7 starting at 5.5 months old,

>directly to 12/7 at 7 months old. So she has been at 12 hours for

>the last 5 months, and does not bear weight at all. I keep asking

>her doctor and he says she absolutely does not need to be in it

>longer, but I guess I just compare that advice to what others are

>hearing and it makes me wonder. Her feet are not out-turned when she

>is standing, they are straight. When she sits they do not turn in

>(toe-in), but they do turn up a bit (bottom flips up). Her doctor

>says it doesn't matter what they do when she is sitting/relaxed, but

>only how they look when she is standing. True? I really need to get

>that book from Global Health. Thought I ordered it but that was

>weeks ago and I have not received it. I cannot download it for some

>unknown reason (computer illiterate!). Anyway, thanks!

>

>Donna

>

>

> >

> > Donna,

> > I really don't think that the low tone in your daughter is

>related to the calf muscles although I can see why you might think

>that. My daughter also was born with low tone and spent some time

>in the NICU where the jerk neonatalogist attempted to label her with

>every 'fatal before two years old' disease he could come up with.

>What an idiot. Anyway, she's been in PT, OT and ST (she also has

>gastro issues and feeding is really our biggest issue as cf is so

>much less of an issue) and her tone is completely improved. She can

>lift herself up just using her stomach muscles from hanging over the

>edge of something. Man I'd love to show that to the jerk. She is

>20 mos old and is not walking on her own yet but we all feel that is

>directly related to her very lose ligaments as she can do the

>mechanics of it and walks everywhere she gets a chance - just has to

>have a finger to help her balance. But let me say that this week

>she's walked all the way across our family room unassisted as long

>as we get her going. She's going to be just fine. Oh I digress.

>Anyway, keep working with your PT. Do the stuff she does during PT

>daily with your daughter. She'll improve much more quickly. Ask

>for homework. Do it faithfully as well. Is she delayed in any

>other area?

> > Chris

> > Overall muscle tone issues

> >

> >

> > Hi all,

> >

> > I have a question about your babies muscle tone. I know that the

>calf

> > muscles do not develop properly, but has anyone experienced

>overall

> > muscle tone issues with their babies? My daughter gets physical

> > therapy because she is very weak and once the therapist

>discovered

> > that her back cracks every time I pick her up and has since

>birth she

> > said that she was born with weak muscles. Her back muscles

>cannot hold

> > her spine in the proper position. cannot support her

>weight

> > with her arms (she is almost 12 months). She cannot yet catch

>her fall

> > from sitting and her arms just give out. Is it possible that her

>other

> > muscles developed like her calf muscles? My husband is very

>concerned

> > about this. He wonders if she will ever develop as she should. I

>don't

> > have the answers and thought maybe someone else has dealt with

>this.

> > I'd appreciate any insight you have. Thanks!!

> >

> > Donna

> > mother to 6-5-92, 7-19-99, Jakob 12-06-01,

>

> > BLCF 11-01-04

> >

> >

> >

> >

> >

> >