Re: Curvy sitting and ? about heart murmurs KELLY

[Guest guest]

Bless your heart ..... Elijah doesnt have the torticollis.

Id never heard of it til your post and had to research it to make

sure I wasnt missing something. Up until last month, nothing else

had been mentioned about other conditions. At Elijahs 15 month well

baby check, his Dr heard a heart murmur. We went back Monday for him

to check it again, he also had another Dr listen and since he heard

it too, we're now being referred to a Pediatric Cardiologist. I

dont think that Elijah's cf and the murmur are connected tho'. My

brother had a murmur and grew out of it. Anyone else with heart

murmurs?

Lori

Elijah 3.26.04 RCF atypical DBB nights only

> Thanks, Lori. Okay, I figured the foor thing is probably b/c

that's how he positions himself when he's in the FAB. Especially

when he sleeps on his side--the left leg is bent and the right one

is up in the air un-bent.

>

> As for the curvy sitting, I think that may be separate, but I just

wanted to see if any other CF parents have noticed this, so that if

it IS related to the FAB or whatever, I can kinda explain it. But

it may be a spinal curvature issue. :-( As if we didn't have

enough to worry about. It's so funny, because the clubfoot used to

be the MAJOR thing I was always worried about and stressed about and

now that's taken a backseat to all these other little things that

have popped up since birth--tightness in two fingers on each hand,

ptosis (droopy eyelid) on the left eye, torticollis (he tilts his

head to the left), and now the way he sits. I try to just enjoy him

and cherish this first year, but I always find myself looking at him

and examining him, trying to figure out if these things are at all

connected or individual problems or what!

>

> Thanks again!

>

>

>

[Guest guest]

My husband had a heart murmer....he has mitral valve prolapse which

is a very common heart defect. Basically, the mitral valve

is " floppy " and when the heart is pumping, some of the blood ends up

whooshing back the way it came instead of going where it is supposed

to go. It is extremely common, and generally speaking doesn't

require surgery. My husband was one of the rare people with a leak

bad enough that it required surgery. He had his first surgery 2

years ago to repair the valve. Then he had another last year to

correct a mistake his first doctor made. He is 34 now, and is

extremely active. In fact, up until his first surgery, he didn't

even know there was a problem.

I've also heard murmers are more common in children, and that they

can indeed grow out of them. Good luck with the cardiologist - and

regardless of what they say, I would strongly suggest a second

opinion. Even if it is good news, and it isn't anything serious...we

didn't go in for a second opinion and that's probably why my husband

had to have two surgeries instead of one...

Good luck, and if it does end up being mitral valve prolapse, feel

free to send me an e-mail. I have educated myself on that topic as

much as I can and would be happy to tell you what I know.

Where are you located, by the way? If you were near the Minneapolis

area, I can tell you that Abbott has one of the top rated cardiology

teams in the nation....and speaking from our experience, it is true!

> > Thanks, Lori. Okay, I figured the foor thing is probably b/c

> that's how he positions himself when he's in the FAB. Especially

> when he sleeps on his side--the left leg is bent and the right one

> is up in the air un-bent.

> >

> > As for the curvy sitting, I think that may be separate, but I

just

> wanted to see if any other CF parents have noticed this, so that if

> it IS related to the FAB or whatever, I can kinda explain it. But

> it may be a spinal curvature issue. :-( As if we didn't have

> enough to worry about. It's so funny, because the clubfoot used to

> be the MAJOR thing I was always worried about and stressed about

and

> now that's taken a backseat to all these other little things that

> have popped up since birth--tightness in two fingers on each hand,

> ptosis (droopy eyelid) on the left eye, torticollis (he tilts his

> head to the left), and now the way he sits. I try to just enjoy

him

> and cherish this first year, but I always find myself looking at

him

> and examining him, trying to figure out if these things are at all

> connected or individual problems or what!

> >

> > Thanks again!

> >

> >

> >

[Guest guest]

Thanks,

I'll keep you in mind when I know more. We're being referred to

Keesler Air Force Base Medical Center, Biloxi, MS. We live in Ocean

Springs, MS. In October, we'll be going to Tripler Army Medical

Center on Oahu, Hawaii so I'll ask them for our second opinion.

Thanks again,

Lori

> > > Thanks, Lori. Okay, I figured the foor thing is probably b/c

> > that's how he positions himself when he's in the FAB.

Especially

> > when he sleeps on his side--the left leg is bent and the right

one

> > is up in the air un-bent.

> > >

> > > As for the curvy sitting, I think that may be separate, but I

> just

> > wanted to see if any other CF parents have noticed this, so that

if

> > it IS related to the FAB or whatever, I can kinda explain it.

But

> > it may be a spinal curvature issue. :-( As if we didn't have

> > enough to worry about. It's so funny, because the clubfoot used

to

> > be the MAJOR thing I was always worried about and stressed about

> and

> > now that's taken a backseat to all these other little things

that

> > have popped up since birth--tightness in two fingers on each

hand,

> > ptosis (droopy eyelid) on the left eye, torticollis (he tilts

his

> > head to the left), and now the way he sits. I try to just enjoy

> him

> > and cherish this first year, but I always find myself looking at

> him

> > and examining him, trying to figure out if these things are at

all

> > connected or individual problems or what!

> > >

> > > Thanks again!

> > >

> > >

> > >

[Guest guest]

Hi,

My daughter was born with left unilateral clubfoot and

congenital heart disease. She had a significant heart murmur at

birth and she has been followed by a pediatric cardiologist since

she was 2 days old. She has four heart defects -- two of which they

expected to resolve on their own by twelve months and two that can

only be corrected with surgery, but they will only do that if it

should become absolutely necessary. She is now 23 months and all

four conditions remain. She is also going to see a pediatric

opthomoligist tommorrow morning (at Sinai in Baltimore) because her

right eye is floating outward. We have also seen a geneticist who

could not find a connection with all of 's conditions:

the four heart defects

left club foot

simian crease in left palm

hooded eyelids (eyes also slighly almond shaped)

dimpled knees and elbows

now her eyes but they were not included in the assessment at the time

I hope your appointment goes great and that it is just an innocent

murmur. If not, feel free to contact me and I can discuss heart

conditions with you!

Marilouise

9/9/03, LCF, DBB 12/7

Owen and 3/20/99

> > Thanks, Lori. Okay, I figured the foor thing is probably b/c

> that's how he positions himself when he's in the FAB. Especially

> when he sleeps on his side--the left leg is bent and the right one

> is up in the air un-bent.

> >

> > As for the curvy sitting, I think that may be separate, but I

just

> wanted to see if any other CF parents have noticed this, so that

if

> it IS related to the FAB or whatever, I can kinda explain it. But

> it may be a spinal curvature issue. :-( As if we didn't have

> enough to worry about. It's so funny, because the clubfoot used

to

> be the MAJOR thing I was always worried about and stressed about

and

> now that's taken a backseat to all these other little things that

> have popped up since birth--tightness in two fingers on each hand,

> ptosis (droopy eyelid) on the left eye, torticollis (he tilts his

> head to the left), and now the way he sits. I try to just enjoy

him

> and cherish this first year, but I always find myself looking at

him

> and examining him, trying to figure out if these things are at all

> connected or individual problems or what!

> >

> > Thanks again!

> >

> >

> >

[Guest guest]

Hi.

I know it sounds terrifying to hear your child has a murmur.

Anything that has anything to do with the heart can be frightening.

But don't worry. A heart murmur is really no big deal. I have known

and know several people who have heart murmurs and they are in

perfect health otherwise. It hasn't stopped them from doing

anything. A good friend of mine has it and hers is fairly severe. A

person can actually hear it just standind next to her. She has had

quite a few doctors examine her throughtout her life and they all

concluded that it won't affect her in any way. Hope this info helps

to ease your mind.

> > > > Thanks, Lori. Okay, I figured the foor thing is probably

b/c

> > > that's how he positions himself when he's in the FAB.

> Especially

> > > when he sleeps on his side--the left leg is bent and the right

> one

> > > is up in the air un-bent.

> > > >

> > > > As for the curvy sitting, I think that may be separate, but

I

> > just

> > > wanted to see if any other CF parents have noticed this, so

that

> if

> > > it IS related to the FAB or whatever, I can kinda explain it.

> But

> > > it may be a spinal curvature issue. :-( As if we didn't have

> > > enough to worry about. It's so funny, because the clubfoot

used

> to

> > > be the MAJOR thing I was always worried about and stressed

about

> > and

> > > now that's taken a backseat to all these other little things

> that

> > > have popped up since birth--tightness in two fingers on each

> hand,

> > > ptosis (droopy eyelid) on the left eye, torticollis (he tilts

> his

> > > head to the left), and now the way he sits. I try to just

enjoy

> > him

> > > and cherish this first year, but I always find myself looking

at

> > him

> > > and examining him, trying to figure out if these things are at

> all

> > > connected or individual problems or what!

> > > >

> > > > Thanks again!

> > > >

> > > >

> > > >