Re: hypotonicty

July 8, 2004

,

I had a son with a global syndrome of which low muscle tone was one of his major

issues. My daughter was born with a bit of hypo but she's overcoming it quite

well. There are many muscles in our body that can be hypo as well as that term

referring medically to other issues in the body involving some of our major

organs. What exactly have they termed 'hypo'? Do they think it's related to

her feet?

Chris

hypotonicty

Hello everyone,

Sadie was diagnosed with hypotonicty. Does anyone else have any

experience with this?

worried mom,

Sadie 5/8/03 Bcf with Bilateral plantaris. mitchell brace 20/day

July 8, 2004

,

I had a son with a global syndrome of which low muscle tone was one of his major

issues. My daughter was born with a bit of hypo but she's overcoming it quite

well. There are many muscles in our body that can be hypo as well as that term

referring medically to other issues in the body involving some of our major

organs. What exactly have they termed 'hypo'? Do they think it's related to

her feet?

Chris

hypotonicty

Hello everyone,

Sadie was diagnosed with hypotonicty. Does anyone else have any

experience with this?

worried mom,

Sadie 5/8/03 Bcf with Bilateral plantaris. mitchell brace 20/day

July 8, 2004

:

I am not familiar with this condition- but reading one of the replys I think

I might have a doc who can help you. Dr. Josh at UNC Chapel Hill,

NC. His e-mail is joshua_alexander@... He is a specialist with

peditraic rehab and he helps kids with all different issues. He also does a

lot of tele commuting stuff. I contacted him and told him about my son to

see if he was a match or not. I can give you more info if you want it.

Raleigh, NC

hypotonicty

> Hello everyone,

> Sadie was diagnosed with hypotonicty. Does anyone else have any

> experience with this?

> worried mom,

>

> Sadie 5/8/03 Bcf with Bilateral plantaris. mitchell brace 20/day

>

July 8, 2004

:

I am not familiar with this condition- but reading one of the replys I think

I might have a doc who can help you. Dr. Josh at UNC Chapel Hill,

NC. His e-mail is joshua_alexander@... He is a specialist with

peditraic rehab and he helps kids with all different issues. He also does a

lot of tele commuting stuff. I contacted him and told him about my son to

see if he was a match or not. I can give you more info if you want it.

Raleigh, NC

hypotonicty

> Hello everyone,

> Sadie was diagnosed with hypotonicty. Does anyone else have any

> experience with this?

> worried mom,

>

> Sadie 5/8/03 Bcf with Bilateral plantaris. mitchell brace 20/day

>

July 8, 2004

,

Thank you for your help. At this point we are waiting to do testing

with the neurolgist. After we have the patho and physiology of the

diagnosis I will know alot more. Dr. will probably be a

great help when I can tell him some facts. I know very little at this

time but will keep his and your name for a later time.

Thank-you so much.

In nosurgery4clubfoot , " Nolfo "

wrote:

> :

>

> I am not familiar with this condition- but reading one of the

replys I think

> I might have a doc who can help you. Dr. Josh at UNC

Chapel Hill,

> NC. His e-mail is joshua_alexander@m... He is a specialist with

> peditraic rehab and he helps kids with all different issues. He

also does a

> lot of tele commuting stuff. I contacted him and told him about my

son to

> see if he was a match or not. I can give you more info if you want

it.

>

> Raleigh, NC

>

> hypotonicty

>

> > Hello everyone,

> > Sadie was diagnosed with hypotonicty. Does anyone else have any

> > experience with this?

> > worried mom,

> >

> > Sadie 5/8/03 Bcf with Bilateral plantaris. mitchell brace 20/day

> >

July 8, 2004

,

You might want to mention the hypo to Dr Mosca. When he was recasting Kai the

last time he asked me about hyperflexibility (which I have in some joints) and

noted that it may have something to do with the plantaris/cavus and instability

of the foot. If Sadie does have hypotonicity it might shed some light on, help

in the treatment of her feet.

Angel

hypotonicty

>

> Hello everyone,

> Sadie was diagnosed with hypotonicty. Does anyone else have any

> experience with this?

> worried mom,

>

> Sadie 5/8/03 Bcf with Bilateral plantaris. mitchell brace 20/day

>

July 8, 2004

Hi,

Forgive my ignorance but what is hypotonicity?

Thanks!

Marilouise

> > ,

> > I had a son with a global syndrome of which low muscle tone was one

> of his major issues. My daughter was born with a bit of hypo but

> she's overcoming it quite well. There are many muscles in our body

> that can be hypo as well as that term referring medically to other

> issues in the body involving some of our major organs. What exactly

> have they termed 'hypo'? Do they think it's related to her feet?

> > Chris

> > hypotonicty

> >

> > Hello everyone,

> > Sadie was diagnosed with hypotonicty. Does anyone else have any

> > experience with this?

> > worried mom,

> >

> > Sadie 5/8/03 Bcf with Bilateral plantaris. mitchell brace 20/day

> >

July 8, 2004

> > ,

> > I had a son with a global syndrome of which low muscle tone was

one

> of his major issues. My daughter was born with a bit of hypo but

> she's overcoming it quite well. There are many muscles in our

body

> that can be hypo as well as that term referring medically to other

> issues in the body involving some of our major organs. What

exactly

> have they termed 'hypo'? Do they think it's related to her feet?

> > Chris

> > hypotonicty

> >

> > Hello everyone,

> > Sadie was diagnosed with hypotonicty. Does anyone else have

any

> > experience with this?

> > worried mom,

> >

> > Sadie 5/8/03 Bcf with Bilateral plantaris. mitchell brace

20/day

> >

July 8, 2004

I was the one who mentioned the doc in Raleigh, NC. His name is Dr. Josh

. He is a ped rehab doc who deals with kids with all kinds of

issues. He also does a bunch of tele medical work all over the state and

maybe farther. Contact me and I can give you info on him. He is great! My

email is knolfo@...

Raleigh, NC

hypotonicty

> > >

> > > Hello everyone,

> > > Sadie was diagnosed with hypotonicty. Does anyone else have

> any

> > > experience with this?

> > > worried mom,

> > >

> > > Sadie 5/8/03 Bcf with Bilateral plantaris. mitchell brace

> 20/day

> > >

July 8, 2004

,

Know that I'm speaking from my experience as a parent, teacher and director of a

nonprofit that served children and their families but not as a medical

professional. It does sound to me like your daughter may have a global syndrome

of some kind that has yet to be identified. While that's a good thing (meaning

there was nothing obvious about her features and such so they didn't identify it

at birth and beyond) it can also be frustrating because you feel like there's

something you need to be doing to help her but you just don't know what that

might be.

My son who was hypotonic was born with stein-Taybi Syndrome, a very rare

genetic syndrome that has a few identifying markers so I knew right away what

they thought his abilities might be. Before he died he did manage to blow much

of that right out of the water but that was because he had a very dedicated

mommy who worked with his therapists to see that he was able to achieve all he

could and pushed the system until it met his needs.

My daughter is much less effected with things than my son was but I know there

is just something that's not quite right. She was born a bit early and has had

some challenges in her young life. The physicians in the NICU tried to diagnose

her with some global syndrome but it seems all she has that's identifiable is

severe reflux which can cause many of her problems. Along with those she is

slightly hypotonic and has a few slight delays but as I said in an earlier post,

she's overcoming them better than anyone ever expected. After all, the NICU

Neonatalogist told us to prepare for her funeral when she was only 3 days old.

The other day she rolled over and scoots herself across the floor with legs

stronger than I've seen on a 5 month old in a long time and babbles up a blue

streak. She tolerates her FAB very well and she certainly has more on the ball

than even I realize as she proves that over and over each day. So much for the

knowledge of Dr's. LOL Anyway - I know there is something that needs help but

I just don't know what it is. So, I'm 'treating' the 'symptoms' and hoping

that along the way she overcomes everything and leads a relatively wonderful

life in the end.

I encourage you to do the same. Figure out what she needs help with and get it

for her. If she is hypotonic then make sure your PT is working on that issue.

If they discover something else, put that therapist on your weekly regime as

well. As for her developmental delays - talk to your PT and get an OT and a ST

if needed. You'll feel better because you are doing something proactive and

she'll benefit for the rest of her life.

Please let us know how things are going. I'll be thinking of you -

Chris

hypotonicty

>

> Hello everyone,

> Sadie was diagnosed with hypotonicty. Does anyone else have any

> experience with this?

> worried mom,

>

> Sadie 5/8/03 Bcf with Bilateral plantaris. mitchell brace 20/day

>

July 8, 2004

Hi ,

My heart goes out to you. Thank you for sharing your story. I am just

begining this process of discovering what is going on. Right now I am

just focusing on the fact that Sadie is a happy little girl and does

not know that life is not suppose to be this hard. I hope Grace is a

happy girl despite her problems. It is obvious that she is very

loved.I am happy to share any info we find as this journey unfolds.

Sadie had a normal delivery, bilateral clubfoot and bilateral

plantaris. She is slighty behind in her mental development as well as

physical. The neuro and developmental test will guide us to the next

step.

Thank you thank you for your support.

denise

> > > ,

> > > I had a son with a global syndrome of which low muscle tone was

> one

> > of his major issues. My daughter was born with a bit of hypo but

> > she's overcoming it quite well. There are many muscles in our

> body

> > that can be hypo as well as that term referring medically to

other

> > issues in the body involving some of our major organs. What

> exactly

> > have they termed 'hypo'? Do they think it's related to her feet?

> > > Chris

> > > hypotonicty

> > >

> > > Hello everyone,

> > > Sadie was diagnosed with hypotonicty. Does anyone else have

> any

> > > experience with this?

> > > worried mom,

> > >

> > > Sadie 5/8/03 Bcf with Bilateral plantaris. mitchell brace

> 20/day

> > >

July 8, 2004

thank you for sharing your story. Your strength and

determination is inspiring and contagious your children are proof

of that. It is awsome that they both rose above the challenges that

life gave them. I feel blessed that Sadie will have what ever she

will need. I am a full time mommy and will gladly do as you suggested

and spend as much time as needed doing whatever I can to help her in

any way.-We are justing starting to unravel Sadie special story. I

will keep you all up to date on her diagnosis and her progress.

-- In nosurgery4clubfoot , " " wrote:

> ,

> Know that I'm speaking from my experience as a parent, teacher and

director of a nonprofit that served children and their families but

not as a medical professional. It does sound to me like your

daughter may have a global syndrome of some kind that has yet to be

identified. While that's a good thing (meaning there was nothing

obvious about her features and such so they didn't identify it at

birth and beyond) it can also be frustrating because you feel like

there's something you need to be doing to help her but you just don't

know what that might be.

>

> My son who was hypotonic was born with stein-Taybi Syndrome, a

very rare genetic syndrome that has a few identifying markers so I

knew right away what they thought his abilities might be. Before he

died he did manage to blow much of that right out of the water but

that was because he had a very dedicated mommy who worked with his

therapists to see that he was able to achieve all he could and pushed

the system until it met his needs.

>

> My daughter is much less effected with things than my son was but I

know there is just something that's not quite right. She was born a

bit early and has had some challenges in her young life. The

physicians in the NICU tried to diagnose her with some global

syndrome but it seems all she has that's identifiable is severe

reflux which can cause many of her problems. Along with those she is

slightly hypotonic and has a few slight delays but as I said in an

earlier post, she's overcoming them better than anyone ever

expected. After all, the NICU Neonatalogist told us to prepare for

her funeral when she was only 3 days old. The other day she rolled

over and scoots herself across the floor with legs stronger than I've

seen on a 5 month old in a long time and babbles up a blue streak.

She tolerates her FAB very well and she certainly has more on the

ball than even I realize as she proves that over and over each day.

So much for the knowledge of Dr's. LOL Anyway - I know there is

something that needs help but I just don't know what it is. So,

I'm 'treating' the 'symptoms' and hoping that along the way she

overcomes everything and leads a relatively wonderful life in the

end.

>

> I encourage you to do the same. Figure out what she needs help

with and get it for her. If she is hypotonic then make sure your PT

is working on that issue. If they discover something else, put that

therapist on your weekly regime as well. As for her developmental

delays - talk to your PT and get an OT and a ST if needed. You'll

feel better because you are doing something proactive and she'll

benefit for the rest of her life.

>

> Please let us know how things are going. I'll be thinking of you -

>

Chris

> hypotonicty

> >

> > Hello everyone,

> > Sadie was diagnosed with hypotonicty. Does anyone else have

any

> > experience with this?

> > worried mom,

> >

> > Sadie 5/8/03 Bcf with Bilateral plantaris. mitchell brace

20/day

> >

July 9, 2004

Hello,

My son is 10 month. I'm not sue wethrr he has hypotonicity or

hyperflexibility, each Dr says something else. We are doing

Feldenkrize classes for about 4 month now. I'm don't think he has a

severe problem. He rolled both sided when he was 5.5 month old. But

he had to be taught to use his hands – open his palms and push

himself towards sitting. He sat for the first time when he was 9

month old. Recently we started to take him to the swimming pool-

movement classes- and I think it makes him stronger. I hope he will

be crawling soon. He also like other parents wrote here, is able to

do weird movements. Sometimes I say to myself it is like a freak

show- in a funny way. We took him too times to see a genetic

counselor, because of 3 things. 1. hypotonicity or hyperflexibility.

2. Simian cress (don't know how to write it)- having only one line

in his right palm. 3. Clubfoot.

The first counselor said this is no reason to do blood test. We need

to see how he develops mentally. The second thought it is a reason

to do the blood tests. We decided not to do them, after all.

Good luck

Idit, mom to Oshri, 10 month. BL ClubFoot, heavy DBB for 16/24

hours.. http://truly_clubfoot.tripod.com - website in Hebrew. To see

the photos click on the leftist link on the top frame.

July 9, 2004

Funny how I am seeing some of the same things in some of our kids all of a

sudden. Kai also has a certain amount of hyperflexibility, a simian crease, and

was behind on gross motor for some time. He has a speech delay/disorder - he

just started saying a few words this week and they are only understandable to

us, and then only if we know what he is " talking " about (such as " ba na na -

like banana - for Bye, Nana - with an " ahh " sound).

He also has a few other anomolies - tongue tied, abnormally shaped ear lobes,

allergies. He was born a month premature. Really makes me wonder hearing all

the others pointing at similar things. Dr Mosca suggested he have genetic

testing a while back, but his ped takes forever to get into and his 18 mo check

up is not until August (when he will be 20 months).

Angel

Re: hypotonicty

Hello,

My son is 10 month. I'm not sue wethrr he has hypotonicity or

hyperflexibility, each Dr says something else. We are doing

Feldenkrize classes for about 4 month now. I'm don't think he has a

severe problem. He rolled both sided when he was 5.5 month old. But

he had to be taught to use his hands - open his palms and push