Re: Re: Connective Tissues Disorders -

[Guest guest]

I don't know if it matters if you have a connective tissue disorder diagnosis before you go to see the specialist. They should be able to tell themselves if she has connective tissue " issues " . Seeing a geneticist will help figure out whether it's a named syndrome (EDS, Marfan's, etc.) or something else that they can't name. There are some reasons why you might want to know for sure what is going on (or as best as you can... " for sure " is unlikely, alas). One is that certain types of EDS might have implications for surgery, or in the case of Marfan's, there could be additional issues involving the heart that need to be monitored. But I don't think it would alter the course of the scoliosis treatment.

Yes, the symptoms you noticed could be due to being an infant, but it could also be a connective tissue diagnosis...when you add in the scoliosis, my bet is on connective tissue. ;-)

Bronwen's connective tissue disorder causes her to have thin-looking skin, hypermobile joints, scoliosis, flat feet when she's not on tip toe (actually a marker that it's connective tissue and not true flat feet...on tip toe, she appears to have an arch....when standing normally, she's flat-footed), mildly low muscle tone, soft skin (but not stretchy), and she had hip dysplasia.

Nola

[Guest guest]

Thanks, ladies, for your responses. I hate to think I may be paranoid. My family thinks I just keep looking for something to be wrong... I wanted to mention that Jake does have clicking in his joints. When changing a diaper, he likes to draw his legs up to his chest and then kick at a mobile overhead. When I pull his legs down, I will hear and feel a pop in his hips, knees, or ankles. Do your children have this? He is a very strong boy. I cannot believe the things he can pick up and/or move. He has good muscle tone. He crawled late (around 8-9 months I think) because I never put him on his stomach as he was a puker. He walked at 12 months.

Also my first son has thin skin I think. You can still one of his blood vessels that run across his nose. His left foot is very flat, and he will soon see an orthopedist. His skin is not soft only because he has excema and it's very bumpy in some areas. His knees are very hypermobile. He can sit on the floor with both legs tucked under him and turned outwards (so when you look at him from up above his legs form an "M").

Now I wonder if both kids have a connective tissue disorder. Though Jake is the only one with scoliosis. I never knew there were so many medical conditions until I had children!

Always thinking,

(10-11-01)

Jake (07-24-04)Nola RC <nolabeebuzz@...> wrote:

I don't know if it matters if you have a connective tissue disorder diagnosis before you go to see the specialist. They should be able to tell themselves if she has connective tissue "issues". Seeing a geneticist will help figure out whether it's a named syndrome (EDS, Marfan's, etc.) or something else that they can't name. There are some reasons why you might want to know for sure what is going on (or as best as you can..."for sure" is unlikely, alas). One is that certain types of EDS might have implications for surgery, or in the case of Marfan's, there could be additional issues involving the heart that need to be monitored. But I don't think it would alter the course of the scoliosis treatment.

Yes, the symptoms you noticed could be due to being an infant, but it could also be a connective tissue diagnosis...when you add in the scoliosis, my bet is on connective tissue. ;-)

Bronwen's connective tissue disorder causes her to have thin-looking skin, hypermobile joints, scoliosis, flat feet when she's not on tip toe (actually a marker that it's connective tissue and not true flat feet...on tip toe, she appears to have an arch....when standing normally, she's flat-footed), mildly low muscle tone, soft skin (but not stretchy), and she had hip dysplasia.

Nola

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[Guest guest]

Jenn

Adan was similar to Jake except no clicking and i am not sure what the exact movement to classify hypermoble joints is...... he does sit in a M but my PT said as long as the feet are not "out" and under his butt it is ok What else shows hyper mobility?

Can someone ask an ortho??or is it that kids can just sit like that anyway? some kids are more movable than older kids and adults. I asked my ortho if it was normal to have young child lean in on the insides of the feet when they stand and he said yes when they are young they stand like that ...so maybe kids being able to sit in the "M" is a young age ability? I wonder......

When Adan is standing it looks like he is applying more pressure to the inside of his feet not centering his weight thought his foot is that what you mean? about flat feet???it makes his knees look closer when he stands

No Adan doesn't have clicking joints that i know and his very strong with good muscle tone he did not crawl till 8-9 months because I did not give him e tummy time as I should have ( he hated it) and walked at 12 months

i agree about not knowing there were so many conditions just be happy you have already had a child before this because it just makes you worry more to have another

Viveiros <jviv314@...> wrote:

Thanks, ladies, for your responses. I hate to think I may be paranoid. My family thinks I just keep looking for something to be wrong... I wanted to mention that Jake does have clicking in his joints. When changing a diaper, he likes to draw his legs up to his chest and then kick at a mobile overhead. When I pull his legs down, I will hear and feel a pop in his hips, knees, or ankles. Do your children have this? He is a very strong boy. I cannot believe the things he can pick up and/or move. He has good muscle tone. He crawled late (around 8-9 months I think) because I never put him on his stomach as he was a puker. He walked at 12 months.

Also my first son has thin skin I think. You can still one of his blood vessels that run across his nose. His left foot is very flat, and he will soon see an orthopedist. His skin is not soft only because he has excema and it's very bumpy in some areas. His knees are very hypermobile. He can sit on the floor with both legs tucked under him and turned outwards (so when you look at him from up above his legs form an "M").

Now I wonder if both kids have a connective tissue disorder. Though Jake is the only one with scoliosis. I never knew there were so many medical conditions until I had children!

Always thinking,

(10-11-01)

Jake (07-24-04)Nola RC <nolabeebuzz@...> wrote:

I don't know if it matters if you have a connective tissue disorder diagnosis before you go to see the specialist. They should be able to tell themselves if she has connective tissue "issues". Seeing a geneticist will help figure out whether it's a named syndrome (EDS, Marfan's, etc.) or something else that they can't name. There are some reasons why you might want to know for sure what is going on (or as best as you can..."for sure" is unlikely, alas). One is that certain types of EDS might have implications for surgery, or in the case of Marfan's, there could be additional issues involving the heart that need to be monitored. But I don't think it would alter the course of the scoliosis treatment.

Yes, the symptoms you noticed could be due to being an infant, but it could also be a connective tissue diagnosis...when you add in the scoliosis, my bet is on connective tissue. ;-)

Bronwen's connective tissue disorder causes her to have thin-looking skin, hypermobile joints, scoliosis, flat feet when she's not on tip toe (actually a marker that it's connective tissue and not true flat feet...on tip toe, she appears to have an arch....when standing normally, she's flat-footed), mildly low muscle tone, soft skin (but not stretchy), and she had hip dysplasia.

Nola

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[Guest guest]

Bronwen sits W-style all the time. That is the term that physical therapists use for it (instead of M-style, lol). In and of itself I don't think it's a sign of hypermobility syndrome as many children can do it. When Bronwen saw the geneticist, he had her do certain things that indicated hypermobility. I think there were around five signs of it, and she met them all. One was how her wrist moved, one was her thumb....I found the indicators online once, but that was a few years ago.

In and of itself I don't think it's that big of a concern; it's just that there are some other problems associated with it, sometimes. If it's severe, contact sports may be contraindicated as the joints are less supported and these children can be injury-prone. Swimming is excellent.

Nola

[Guest guest]

nola,

i had to do a search to find the criteria! there is a

hypermobility society, and they have the criteria on their

website: http://www.hypermobility.org/beighton.php

i guess that i'll have to go home and experiment on lucas.

deshea

Bronwen sits W-style all the time. That is the term that physical therapists use for it (instead of M-style, lol). In and of itself I don't think it's a sign of hypermobility syndrome as many children can do it. When Bronwen saw the geneticist, he had her do certain things that indicated hypermobility. I think there were around five signs of it, and she met them all. One was how her wrist moved, one was her thumb....I found the indicators online once, but that was a few years ago.

In and of itself I don't think it's that big of a concern; it's just that there are some other problems associated with it, sometimes. If it's severe, contact sports may be contraindicated as the joints are less supported and these children can be injury-prone. Swimming is excellent.

Nola

[Guest guest]

According to our physical therapist, the M sit is to compensate for the weak back. We worked tirelessly to get Sammy to sit criss cross in front or else legs out in front--both of which requires her to use her back muscles to sit up. So I don't think it's a hypermobility thing as much as a compensation for the curve.

E

From: infantile scoliosis treatment [mailto:infantile scoliosis treatment ] On Behalf Of Sent: Tuesday, October 25, 2005 10:51 PMinfantile scoliosis treatment Subject: Re: Re: Connective Tissues Disorders -

Jenn

Adan was similar to Jake except no clicking and i am not sure what the exact movement to classify hypermoble joints is...... he does sit in a M but my PT said as long as the feet are not "out" and under his butt it is ok What else shows hyper mobility?

Can someone ask an ortho??or is it that kids can just sit like that anyway? some kids are more movable than older kids and adults. I asked my ortho if it was normal to have young child lean in on the insides of the feet when they stand and he said yes when they are young they stand like that ...so maybe kids being able to sit in the "M" is a young age ability? I wonder......

When Adan is standing it looks like he is applying more pressure to the inside of his feet not centering his weight thought his foot is that what you mean? about flat feet???it makes his knees look closer when he stands

No Adan doesn't have clicking joints that i know and his very strong with good muscle tone he did not crawl till 8-9 months because I did not give him e tummy time as I should have ( he hated it) and walked at 12 months

i agree about not knowing there were so many conditions just be happy you have already had a child before this because it just makes you worry more to have another

Viveiros <jviv314@...> wrote:

Thanks, ladies, for your responses. I hate to think I may be paranoid. My family thinks I just keep looking for something to be wrong... I wanted to mention that Jake does have clicking in his joints. When changing a diaper, he likes to draw his legs up to his chest and then kick at a mobile overhead. When I pull his legs down, I will hear and feel a pop in his hips, knees, or ankles. Do your children have this? He is a very strong boy. I cannot believe the things he can pick up and/or move. He has good muscle tone. He crawled late (around 8-9 months I think) because I never put him on his stomach as he was a puker. He walked at 12 months.

Also my first son has thin skin I think. You can still one of his blood vessels that run across his nose. His left foot is very flat, and he will soon see an orthopedist. His skin is not soft only because he has excema and it's very bumpy in some areas. His knees are very hypermobile. He can sit on the floor with both legs tucked under him and turned outwards (so when you look at him from up above his legs form an "M").

Now I wonder if both kids have a connective tissue disorder. Though Jake is the only one with scoliosis. I never knew there were so many medical conditions until I had children!

Always thinking,

(10-11-01)

Jake (07-24-04)Nola RC <nolabeebuzz@...> wrote:

I don't know if it matters if you have a connective tissue disorder diagnosis before you go to see the specialist. They should be able to tell themselves if she has connective tissue "issues". Seeing a geneticist will help figure out whether it's a named syndrome (EDS, Marfan's, etc.) or something else that they can't name. There are some reasons why you might want to know for sure what is going on (or as best as you can..."for sure" is unlikely, alas). One is that certain types of EDS might have implications for surgery, or in the case of Marfan's, there could be additional issues involving the heart that need to be monitored. But I don't think it would alter the course of the scoliosis treatment.

Yes, the symptoms you noticed could be due to being an infant, but it could also be a connective tissue diagnosis...when you add in the scoliosis, my bet is on connective tissue. ;-)

Bronwen's connective tissue disorder causes her to have thin-looking skin, hypermobile joints, scoliosis, flat feet when she's not on tip toe (actually a marker that it's connective tissue and not true flat feet...on tip toe, she appears to have an arch....when standing normally, she's flat-footed), mildly low muscle tone, soft skin (but not stretchy), and she had hip dysplasia.

Nola

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[Guest guest]

does the "W" sit as well. It is something that we consistently have to tell her ", no W's" or " fix your legs" It is not a good sitting position for the child.

Gail

RE: Re: Connective Tissues Disorders -

According to our physical therapist, the M sit is to compensate for the weak back. We worked tirelessly to get Sammy to sit criss cross in front or else legs out in front--both of which requires her to use her back muscles to sit up. So I don't think it's a hypermobility thing as much as a compensation for the curve.

E

From: infantile scoliosis treatment [mailto:infantile scoliosis treatment ] On Behalf Of Sent: Tuesday, October 25, 2005 10:51 PMinfantile scoliosis treatment Subject: Re: Re: Connective Tissues Disorders -

Jenn

Adan was similar to Jake except no clicking and i am not sure what the exact movement to classify hypermoble joints is...... he does sit in a M but my PT said as long as the feet are not "out" and under his butt it is ok What else shows hyper mobility?

Can someone ask an ortho??or is it that kids can just sit like that anyway? some kids are more movable than older kids and adults. I asked my ortho if it was normal to have young child lean in on the insides of the feet when they stand and he said yes when they are young they stand like that ...so maybe kids being able to sit in the "M" is a young age ability? I wonder......

When Adan is standing it looks like he is applying more pressure to the inside of his feet not centering his weight thought his foot is that what you mean? about flat feet???it makes his knees look closer when he stands

No Adan doesn't have clicking joints that i know and his very strong with good muscle tone he did not crawl till 8-9 months because I did not give him e tummy time as I should have ( he hated it) and walked at 12 months

i agree about not knowing there were so many conditions just be happy you have already had a child before this because it just makes you worry more to have another

Viveiros <jviv314@...> wrote:

Thanks, ladies, for your responses. I hate to think I may be paranoid. My family thinks I just keep looking for something to be wrong... I wanted to mention that Jake does have clicking in his joints. When changing a diaper, he likes to draw his legs up to his chest and then kick at a mobile overhead. When I pull his legs down, I will hear and feel a pop in his hips, knees, or ankles. Do your children have this? He is a very strong boy. I cannot believe the things he can pick up and/or move. He has good muscle tone. He crawled late (around 8-9 months I think) because I never put him on his stomach as he was a puker. He walked at 12 months.

Also my first son has thin skin I think. You can still one of his blood vessels that run across his nose. His left foot is very flat, and he will soon see an orthopedist. His skin is not soft only because he has excema and it's very bumpy in some areas. His knees are very hypermobile. He can sit on the floor with both legs tucked under him and turned outwards (so when you look at him from up above his legs form an "M").

Now I wonder if both kids have a connective tissue disorder. Though Jake is the only one with scoliosis. I never knew there were so many medical conditions until I had children!

Always thinking,

(10-11-01)

Jake (07-24-04)Nola RC <nolabeebuzz@...> wrote:

I don't know if it matters if you have a connective tissue disorder diagnosis before you go to see the specialist. They should be able to tell themselves if she has connective tissue "issues". Seeing a geneticist will help figure out whether it's a named syndrome (EDS, Marfan's, etc.) or something else that they can't name. There are some reasons why you might want to know for sure what is going on (or as best as you can..."for sure" is unlikely, alas). One is that certain types of EDS might have implications for surgery, or in the case of Marfan's, there could be additional issues involving the heart that need to be monitored. But I don't think it would alter the course of the scoliosis treatment.

Yes, the symptoms you noticed could be due to being an infant, but it could also be a connective tissue diagnosis...when you add in the scoliosis, my bet is on connective tissue. ;-)

Bronwen's connective tissue disorder causes her to have thin-looking skin, hypermobile joints, scoliosis, flat feet when she's not on tip toe (actually a marker that it's connective tissue and not true flat feet...on tip toe, she appears to have an arch....when standing normally, she's flat-footed), mildly low muscle tone, soft skin (but not stretchy), and she had hip dysplasia.

Nola

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[Guest guest]

Olivia and I put more weight on the insides of are feet too. I can make myself have an arch, but it's not natural for me.

HRH

Re: Re: Connective Tissues Disorders -

Jenn

Adan was similar to Jake except no clicking and i am not sure what the exact movement to classify hypermoble joints is...... he does sit in a M but my PT said as long as the feet are not "out" and under his butt it is ok What else shows hyper mobility?

Can someone ask an ortho??or is it that kids can just sit like that anyway? some kids are more movable than older kids and adults. I asked my ortho if it was normal to have young child lean in on the insides of the feet when they stand and he said yes when they are young they stand like that ...so maybe kids being able to sit in the "M" is a young age ability? I wonder......

When Adan is standing it looks like he is applying more pressure to the inside of his feet not centering his weight thought his foot is that what you mean? about flat feet???it makes his knees look closer when he stands

No Adan doesn't have clicking joints that i know and his very strong with good muscle tone he did not crawl till 8-9 months because I did not give him e tummy time as I should have ( he hated it) and walked at 12 months

i agree about not knowing there were so many conditions just be happy you have already had a child before this because it just makes you worry more to have another

Viveiros <jviv314@...> wrote:

Thanks, ladies, for your responses. I hate to think I may be paranoid. My family thinks I just keep looking for something to be wrong... I wanted to mention that Jake does have clicking in his joints. When changing a diaper, he likes to draw his legs up to his chest and then kick at a mobile overhead. When I pull his legs down, I will hear and feel a pop in his hips, knees, or ankles. Do your children have this? He is a very strong boy. I cannot believe the things he can pick up and/or move. He has good muscle tone. He crawled late (around 8-9 months I think) because I never put him on his stomach as he was a puker. He walked at 12 months.

Also my first son has thin skin I think. You can still one of his blood vessels that run across his nose. His left foot is very flat, and he will soon see an orthopedist. His skin is not soft only because he has excema and it's very bumpy in some areas. His knees are very hypermobile. He can sit on the floor with both legs tucked under him and turned outwards (so when you look at him from up above his legs form an "M").

Now I wonder if both kids have a connective tissue disorder. Though Jake is the only one with scoliosis. I never knew there were so many medical conditions until I had children!

Always thinking,

(10-11-01)

Jake (07-24-04)Nola RC <nolabeebuzz@...> wrote:

I don't know if it matters if you have a connective tissue disorder diagnosis before you go to see the specialist. They should be able to tell themselves if she has connective tissue "issues". Seeing a geneticist will help figure out whether it's a named syndrome (EDS, Marfan's, etc.) or something else that they can't name. There are some reasons why you might want to know for sure what is going on (or as best as you can..."for sure" is unlikely, alas). One is that certain types of EDS might have implications for surgery, or in the case of Marfan's, there could be additional issues involving the heart that need to be monitored. But I don't think it would alter the course of the scoliosis treatment.

Yes, the symptoms you noticed could be due to being an infant, but it could also be a connective tissue diagnosis...when you add in the scoliosis, my bet is on connective tissue. ;-)

Bronwen's connective tissue disorder causes her to have thin-looking skin, hypermobile joints, scoliosis, flat feet when she's not on tip toe (actually a marker that it's connective tissue and not true flat feet...on tip toe, she appears to have an arch....when standing normally, she's flat-footed), mildly low muscle tone, soft skin (but not stretchy), and she had hip dysplasia.

Nola

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[Guest guest]

Thanks Deshea

I just found out I cant do those things although I remember growing up kids that could and I thought it was so cool...."Deshea L. " <deshea@...> wrote:

nola,i had to do a search to find the criteria! there is ahypermobility society, and they have the criteria on theirwebsite: http://www.hypermobility.org/beighton.phpi guess that i'll have to go home and experiment on lucas. ;)desheainfantile scoliosis treatment From: Nola RC <nolabeebuzz@...>Date: Wed, 26 Oct 2005 09:05:08 -0500Subject: Re: Re: Connective Tissues Disorders -

Bronwen sits W-style all the time. That is the term that physical therapists use for it (instead of M-style, lol). In and of itself I don't think it's a sign of hypermobility syndrome as many children can do it. When Bronwen saw the geneticist, he had her do certain things that indicated hypermobility. I think there were around five signs of it, and she met them all. One was how her wrist moved, one was her thumb....I found the indicators online once, but that was a few years ago.

In and of itself I don't think it's that big of a concern; it's just that there are some other problems associated with it, sometimes. If it's severe, contact sports may be contraindicated as the joints are less supported and these children can be injury-prone. Swimming is excellent.

Nola

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