Re: Liz and .....checking out the heart?

[Guest guest]

We just got glasses at the PO. Not sure who looks at tracking.

The geneticist was the first to notice the low tone (and I assure you

it was obvious in my son, though not my daughter). He said the heart

thing because he noted low skin tone...not sure if that specifically

put it over the edge. Honestly, I think you have to go with your

mommy gut.

As for the belly, not sure what to tell you. Our belly stuff seemed

to be mostly a yeast thing and the belly is lean. My son is too

skinny if you ask me and eating great, not tiring easily and the docs

seem happy as he is at 50% whereas before wt was 75%. Still, he lost

6 lbs and that makes me nervous. This will be tracked.

As for handling one more thing. I am not the best at handling any of

this but one thing I keep saying is...whatever the news, the label,

the new thing, none of it is new...I still have the same kid and

whatever seems new is simply a guide to helping him.

It does help that we have pretty good insurance.

>

> Liz and ,

> Just reading thru your posts back to . Okay, I'm not sure I

can

> handle one more " thing. " But now I'm wondering about checking my

boys'

> hearts? Since they are both " low tone " ? I'm getting Owen's vision

> checked by a great pediatric opthamalogist this next week (is that

the

> way to go?) My other son sees him every year and he's great with

the

> little guys, even those that can't talk or communicate well. My

> understanding is that I'll know if there are vision processing

issues

> and tracking issues from this appt.? Is that what you

experienced?

> But now I'm concerned about the low tone thing. My 6 year old is

low

> tone and skinny.... my 33 month old is low toned and chubby. In

fact,

> I'm kinda concerned as I'm wondering if we should limit his

intake?

> He's on gf/cf for 11 months. His tummy is just still that cute,

chubby

> tummy babies and early toddlers have. Seems like it should be

trimming

> down by now?

> Thanks,

>

>

>

[Guest guest]

Almost all here has or cares for a child with

a communication impairment and out of that group a large % have hypotonia -

or low tone. I've never been told by anyone that hypotonia means you

need to check the heart -never heard of any of our children having a

high number of heart problems.

Yes perhaps ...

A child has hypotonia and a heart murmur...there may be a child here

who has hypotonia and flat feet. It doesn't mean that this child is

the rule for all.

And as a PS -my Dad, father in law and husband all had heart attacks

which my Dad and father in law died of...and my mom had open heart

surgery -and none of the above had low tone (but I'm sure they all

wore white underwear at some point -hmmmm)

We have to stick to the facts for the majority.

There are many adults with mild low tone (which is what most of our

children have by the way- most here do not have children diagnosed

as " floppy " when infants even though there are a few here as

well...without heart issues. Here's a good website on benign (notice

the word benign) congenital hypotonia

http://www.lightlink.com/vulcan/benign/ There's also information in

The Late Talker book on this -and again it's a " soft sign " that many

don't even pick up which is why a neurodevelopmental pediatrician or

pediatric neurologist evaluation is recommended. (and they will also

relieve your anxiety on this topic!)

The following book shows that it's not that it's impossible...after

all anyone can have heart problems -but the exception to the rule -

very rare.

Quote from The Floppy Infant By Victor Dubowitz

(if your child was floppy)

" All standard texts mention hypotonia in association with heart

disease, but in practice the association is exceptionall. One

wonders whether both the hypotonia and the congenital heart lesions

are more likely to be coincidental mainifestations of a more

generalized disorder (Fig. 8.6) The two may certainly be associated

in Marfan's syndrome and mongolism, and type 2 glycogenosis (Pompe's

disease) affects cardiac as well as skeletal muscle.

The first case on record of hypotonia in association with congenital

heart disease is the four-year-old girl described by on and

Weiss (1929). In addition to her extreme flaccidity and cyanotic

congenital heart lesion, she also had exophthalmos, unilateral ptosis

and external rectus weakness, suggesting a more extensive condition. "

http://books.google.com/books?id=fFfu6t2E5ccC & pg=PA133 & lpg=PA133 & dq=hypotonia+he\

art & source=web & ots=DsbZnLJM5x & sig=fOaMcd5AGDJAm9QtIDECdzyNQO8 & hl=en

So it's rare even for floppy babies

Again most of our children were not floppy and have 'mild' low tone

http://www.lightlink.com/vulcan/benign/

Now on the other hand probably many of us here should do blood

analysis at some point for our child through their pediatrician like I did to

check

carnotine levels. You do not want to supplement with carnotine until

you are tested because if you test low in this amino acid that can

affect the muscles around the heart. It's rare to be low in

carnotine and if one is -there is a prescription carnotine which your

child will have to be on for life for his or her protection. It

would be a good thing to find out sooner.

If you just supplement prior with this you skew the results.

Please don't mix up carnotine with another similar sounding amino acid-

carnosine. You can supplement with carnosine -and it's found in carn-

aware. http://www.carn-aware.com/ Carnosine and carnotine sound the

same -but again do not supplement with carnoTine without checking

your child's levels with your pediatrician first. And please do

check at some point. We have credible information from

mom/pediatrician/researcher Dr. in the archives about

the tests to ask for and why.

And please don't just accept all that is posted here without checking

it out with an expert as there is misinformation posted here by me

and everyone else. None of us are perfect. Then again -there is

some really incredible information posted here every day as well that

you may not always be able to find back up on elsewhere yet...but at

least with low tone and heart problems we can check that out and know

it's misinformation that scared you.

=====

[Guest guest]

Not trying to step on any landmines or set off alarms nor am I saying

people need to run to the heart dr. I do not know why that Dr. at

Columbia said it but he was pretty emphatic. It stuck out because

other than the skin tone thing he said the kids were healthy from a

genetic standpoint. You can check the original post. Check all my

posts. I am just telling my story as it unfolds. I am not trying to

start a revolution or pretend I am suddenly a dr.

In fact, I mentioned my dad's hear thing saying that this was likely

unrelated if you look at the post.

I am going to the heart doc for my kids because the geneticist told

me to take my children. Not because of my son's speech issue.

I really do not get the underwear references and I cannot tell you

what color any of us will be wearing when we go.

has mentioned heart stuff in relationship to E and Carnitine

on this board I think. Neither of those things are something my son

is on right now and I do not know if they relate to this.

My son and I are flatfooted and I do not know what that means either.

Does not seem relevant to this topic.

>

> Almost all here has or cares for a child with

> a communication impairment and out of that group a large % have

hypotonia -

> or low tone. I've never been told by anyone that hypotonia means

you

> need to check the heart -never heard of any of our children having a

> high number of heart problems.

>

> Yes perhaps ...

> A child has hypotonia and a heart murmur...there may be a child here

> who has hypotonia and flat feet. It doesn't mean that this child is

> the rule for all.

>

> And as a PS -my Dad, father in law and husband all had heart attacks

> which my Dad and father in law died of...and my mom had open heart

> surgery -and none of the above had low tone (but I'm sure they all

> wore white underwear at some point -hmmmm)

>

> We have to stick to the facts for the majority.

>

> There are many adults with mild low tone (which is what most of our

> children have by the way- most here do not have children diagnosed

> as " floppy " when infants even though there are a few here as

> well...without heart issues. Here's a good website on benign

(notice

> the word benign) congenital hypotonia

> http://www.lightlink.com/vulcan/benign/ There's also information in

> The Late Talker book on this -and again it's a " soft sign " that many

> don't even pick up which is why a neurodevelopmental pediatrician or

> pediatric neurologist evaluation is recommended. (and they will

also

> relieve your anxiety on this topic!)

>

> The following book shows that it's not that it's impossible...after

> all anyone can have heart problems -but the exception to the rule -

> very rare.

>

> Quote from The Floppy Infant By Victor Dubowitz

> (if your child was floppy)

>

> " All standard texts mention hypotonia in association with heart

> disease, but in practice the association is exceptionall. One

> wonders whether both the hypotonia and the congenital heart lesions

> are more likely to be coincidental mainifestations of a more

> generalized disorder (Fig. 8.6) The two may certainly be associated

> in Marfan's syndrome and mongolism, and type 2 glycogenosis (Pompe's

> disease) affects cardiac as well as skeletal muscle.

>

> The first case on record of hypotonia in association with congenital

> heart disease is the four-year-old girl described by on and

> Weiss (1929). In addition to her extreme flaccidity and cyanotic

> congenital heart lesion, she also had exophthalmos, unilateral

ptosis

> and external rectus weakness, suggesting a more extensive

condition. "

> http://books.google.com/books?

id=fFfu6t2E5ccC & pg=PA133 & lpg=PA133 & dq=hypotonia+heart & source=web & ots=D

sbZnLJM5x & sig=fOaMcd5AGDJAm9QtIDECdzyNQO8 & hl=en

>

> So it's rare even for floppy babies

> Again most of our children were not floppy and have 'mild' low tone

> http://www.lightlink.com/vulcan/benign/

>

> Now on the other hand probably many of us here should do blood

> analysis at some point for our child through their pediatrician

like I did to check

> carnotine levels. You do not want to supplement with carnotine

until

> you are tested because if you test low in this amino acid that can

> affect the muscles around the heart. It's rare to be low in

> carnotine and if one is -there is a prescription carnotine which

your

> child will have to be on for life for his or her protection. It

> would be a good thing to find out sooner.

>

> If you just supplement prior with this you skew the results.

>

> Please don't mix up carnotine with another similar sounding amino

acid-

> carnosine. You can supplement with carnosine -and it's found in

carn-

> aware. http://www.carn-aware.com/ Carnosine and carnotine sound

the

> same -but again do not supplement with carnoTine without checking

> your child's levels with your pediatrician first. And please do

> check at some point. We have credible information from

> mom/pediatrician/researcher Dr. in the archives about

> the tests to ask for and why.

>

> And please don't just accept all that is posted here without

checking

> it out with an expert as there is misinformation posted here by me

> and everyone else. None of us are perfect. Then again -there is

> some really incredible information posted here every day as well

that

> you may not always be able to find back up on elsewhere yet...but at

> least with low tone and heart problems we can check that out and

know

> it's misinformation that scared you.

>

> =====

>

[Guest guest]

I wouldn't worry about weight at these young ages at all. It waxes

and wanes based on growth spurts for many years. If the tummy is big

because of bloating, not weight, that is one of the more visible

signs of yeast. My niece gets that, and it disappears with yeast

treatments.

In the past, there has been no association between low tone and heart

issues on this board. I asked Liz for follow up because clearly

something in her personal history stirred that comment, not just the

low tone. Since my son has a heart murmur, I was wondering what that

thing might be. (FYI for whoever -- heart murmurs are very common.

I was born with one type, outgrew it, and now have another type that

is common in women. No big deal.)

I have always found it interesting that carnitine and CoQ10 are

supplements that are recommended by mainstream sources for both low

tone and heart health. I think both are included in Nordic Naturals

Heart Synergy formulation.

Regarding the pediatric opthamologist, he may not check his vision

from a developmental point of view. recently had a check-up

and the guy didn't check all that stuff. His partner is the one to

see for that, but he didn't feel that anything in the initial check-

up merited a more thorough evaluation. So tell the opthamologist

what kind of information you seek. He may or may not be the right

guy. This has nothing to do with quality of the doctor -- it has to

do with their specialty.

in NJ

>

> Liz and ,

> Just reading thru your posts back to . Okay, I'm not sure I

can

> handle one more " thing. " But now I'm wondering about checking my

boys'

> hearts? Since they are both " low tone " ? I'm getting Owen's vision

> checked by a great pediatric opthamalogist this next week (is that

the

> way to go?) My other son sees him every year and he's great with

the

> little guys, even those that can't talk or communicate well. My

> understanding is that I'll know if there are vision processing

issues

> and tracking issues from this appt.? Is that what you

experienced?

> But now I'm concerned about the low tone thing. My 6 year old is

low

> tone and skinny.... my 33 month old is low toned and chubby. In

fact,

> I'm kinda concerned as I'm wondering if we should limit his

intake?

> He's on gf/cf for 11 months. His tummy is just still that cute,

chubby

> tummy babies and early toddlers have. Seems like it should be

trimming

> down by now?

> Thanks,

>

>

>

[Guest guest]

I think that's what all the posters involved with this thread were

trying to do -- understand the information to avoid

miscommunication. I doubt anyone's freaking out over one little

comment by Liz.

in NJ

> And please don't just accept all that is posted here without

checking

> it out with an expert as there is misinformation posted here by me

> and everyone else. None of us are perfect. Then again -there is

> some really incredible information posted here every day as well

that

> you may not always be able to find back up on elsewhere yet...but at

> least with low tone and heart problems we can check that out and

know

> it's misinformation that scared you.

>

> =====

>

[Guest guest]

I do not know if this makes a difference but the doctor was

focused on low SKIN tone when he mentioned the cardiology and

opthamology referral.

>

> Almost all here has or cares for a child with

> a communication impairment and out of that group a large % have

hypotonia -

> or low tone. I've never been told by anyone that hypotonia means

you

> need to check the heart -never heard of any of our children having a

> high number of heart problems.

>

> Yes perhaps ...

> A child has hypotonia and a heart murmur...there may be a child here

> who has hypotonia and flat feet. It doesn't mean that this child is

> the rule for all.

>

> And as a PS -my Dad, father in law and husband all had heart attacks

> which my Dad and father in law died of...and my mom had open heart

> surgery -and none of the above had low tone (but I'm sure they all

> wore white underwear at some point -hmmmm)

>

> We have to stick to the facts for the majority.

>

> There are many adults with mild low tone (which is what most of our

> children have by the way- most here do not have children diagnosed

> as " floppy " when infants even though there are a few here as

> well...without heart issues. Here's a good website on benign

(notice

> the word benign) congenital hypotonia

> http://www.lightlink.com/vulcan/benign/ There's also information in

> The Late Talker book on this -and again it's a " soft sign " that many

> don't even pick up which is why a neurodevelopmental pediatrician or

> pediatric neurologist evaluation is recommended. (and they will

also

> relieve your anxiety on this topic!)

>

> The following book shows that it's not that it's impossible...after

> all anyone can have heart problems -but the exception to the rule -

> very rare.

>

> Quote from The Floppy Infant By Victor Dubowitz

> (if your child was floppy)

>

> " All standard texts mention hypotonia in association with heart

> disease, but in practice the association is exceptionall. One

> wonders whether both the hypotonia and the congenital heart lesions

> are more likely to be coincidental mainifestations of a more

> generalized disorder (Fig. 8.6) The two may certainly be associated

> in Marfan's syndrome and mongolism, and type 2 glycogenosis (Pompe's

> disease) affects cardiac as well as skeletal muscle.

>

> The first case on record of hypotonia in association with congenital

> heart disease is the four-year-old girl described by on and

> Weiss (1929). In addition to her extreme flaccidity and cyanotic

> congenital heart lesion, she also had exophthalmos, unilateral

ptosis

> and external rectus weakness, suggesting a more extensive

condition. "

> http://books.google.com/books?

id=fFfu6t2E5ccC & pg=PA133 & lpg=PA133 & dq=hypotonia+heart & source=web & ots=D

sbZnLJM5x & sig=fOaMcd5AGDJAm9QtIDECdzyNQO8 & hl=en

>

> So it's rare even for floppy babies

> Again most of our children were not floppy and have 'mild' low tone

> http://www.lightlink.com/vulcan/benign/

>

> Now on the other hand probably many of us here should do blood

> analysis at some point for our child through their pediatrician

like I did to check

> carnotine levels. You do not want to supplement with carnotine

until

> you are tested because if you test low in this amino acid that can

> affect the muscles around the heart. It's rare to be low in

> carnotine and if one is -there is a prescription carnotine which

your

> child will have to be on for life for his or her protection. It

> would be a good thing to find out sooner.

>

> If you just supplement prior with this you skew the results.

>

> Please don't mix up carnotine with another similar sounding amino

acid-

> carnosine. You can supplement with carnosine -and it's found in

carn-

> aware. http://www.carn-aware.com/ Carnosine and carnotine sound

the

> same -but again do not supplement with carnoTine without checking

> your child's levels with your pediatrician first. And please do

> check at some point. We have credible information from

> mom/pediatrician/researcher Dr. in the archives about

> the tests to ask for and why.

>

> And please don't just accept all that is posted here without

checking

> it out with an expert as there is misinformation posted here by me

> and everyone else. None of us are perfect. Then again -there is

> some really incredible information posted here every day as well

that

> you may not always be able to find back up on elsewhere yet...but at

> least with low tone and heart problems we can check that out and

know

> it's misinformation that scared you.

>

> =====

>

[Guest guest]

Now I am trying to understand it myself. Could it be, since he was

referring specifically to low skin tone when stating to go to the

cardiologist that that was why? Low skin tone versus low tone

generally may be the issue with this referral. Hope this helps. As I

said, we were just recently cleared at cardiology for my son, the

child more relevant to this board.

>

> I think that's what all the posters involved with this thread were

> trying to do -- understand the information to avoid

> miscommunication. I doubt anyone's freaking out over one little

> comment by Liz.

>

> in NJ

>

>

> > And please don't just accept all that is posted here without

> checking

> > it out with an expert as there is misinformation posted here by me

> > and everyone else. None of us are perfect. Then again -there is

> > some really incredible information posted here every day as well

> that

> > you may not always be able to find back up on elsewhere yet...but

at

> > least with low tone and heart problems we can check that out and

> know

> > it's misinformation that scared you.

> >

> > =====

> >

[Guest guest]

Here's 's message -the new to this group mom who 'is' freaking

out as this is what I responded to. Her message was under the

message you and I wrote so not sure why it was missed. I'm not even

sure why this new mom feels a pediatric ophthalmologist is one of her

first steps after joining this group...and she is asking " is that the

way to go? " For the record -no -unless your child has an eye

infection or something you've noticed. And -will answer your

first post next -sorry I missed it.

Liz makes a lot of little comments that added up from one day (times

every day) could be a book of information and misinformation that a

new person could freak out over -but her children are not the norm as

she does so much for them and they are not diagnosed with anything

but suspected of many things -or they are normal and she's just

overly paranoid for lack of better words. This is a communication

impairment group and I know at times there are outside the box

symptoms -but that shouldn't (again) be the main focus. Please let's

stick to the facts and if one is going to post bizarre out of the box

information -back it up with credible links or references so someone

like can take more than " Liz said " or even " said " to her

child's pediatrician. I for one try to post credible facts when I

make a suggestion.

> >

> > >

> > > Liz and ,

> > > Just reading thru your posts back to . Okay, I'm not

sure

> I

> > can

> > > handle one more " thing. " But now I'm wondering about checking

my

> > boys'

> > > hearts? Since they are both " low tone " ? I'm getting Owen's

> vision

> > > checked by a great pediatric opthamalogist this next week (is

that

> > the

> > > way to go?) My other son sees him every year and he's great

with

> > the

> > > little guys, even those that can't talk or communicate well. My

> > > understanding is that I'll know if there are vision processing

> > issues

> > > and tracking issues from this appt.? Is that what you

> > experienced?

> > > But now I'm concerned about the low tone thing. My 6 year old

is

> > low

> > > tone and skinny.... my 33 month old is low toned and chubby. In

> > fact,

> > > I'm kinda concerned as I'm wondering if we should limit his

> > intake?

> > > He's on gf/cf for 11 months. His tummy is just still that cute,

> > chubby

> > > tummy babies and early toddlers have. Seems like it should be

> > trimming

> > > down by now?

> > > Thanks,

> > >

> > >

And here's 's first message here from Jan 29 2008

Hi All,

My mind is spinning after reading over so many of the postings.

Great info and lots to think about!

Here's a brief summary of our " story " with a couple ?'s at the end:

*Older son (6) mildly dyspraxic, low tone, went to speech for

articulation issues but was fluent early on. Is in O.T. now that

we've identified he's dyspraxic.

*Younger son (2 y.o.+8 mo.) is also low tone, is in speech, P.T. and

O.T., as well as ABA therapy. He has seen several specialists and

everyone (including therapists) agree he doesn't appear to be

autistic. So perhaps more globally dyspraxic? His language has been

extremely slow in coming. At this point he's putting limited 2 words

together, but isnt' having a language explosion. He does attempt

more but I'm discouraged. Therapy rules our life and I'm sick of

it. I truly believe he's apraxic and the Regional Center of O.C.

(here in California) won't respond to me crying out for help for my

dyspraxic child (they just wanted to give him ABA I think because the

funding's there.)

Last Spring I took him to a local DAN doctor and she wanted to treat

him with the DAN protocol (as though he was autistic, even though he

doesn't have many of the signs. Although I know there's some

overlap.) I started him on NN CLO, and put him on a GF/CF/Soy-free

diet....he's had consistent eczema and asthmatic episodes. The new

diet did clear up the eczema and caused better, more consistent bowel

movements. But I haven't done anything else the DAN doctor wanted to

do (all the blood work - out of pocket expense we haven't been able

to afford). She also recommended the vitamin B12 shots in the butt.

Okay, so here are my questions....I searched here and couldn't find

the postings (although it looked like there was a thread)....are the

vitamin B12 shots a viable thing for apraxic children? Or more for

autistic, language-delayed kids (without motor issues)? My son has

definite motor challenges. In fact, I would describe him

as " consistently inconsistent. " All the therapists say he goes up

and down (makes progress, then regresses, etc.) It breaks my heart.

Do you ever feel you are swimming alone in a great big ocean with no

island in sight? That's me. The majority of my friends and our

families don't " get it " and have either said lame things or just

slowly pulled away.

Okay, enough rambling. Thanks for being a safe haven - I can tell

I'll enjoy being a part of your community!

=====

[Guest guest]

Hi ,

I'm sorry if you took my email back to Liz about checking out my

boys' hearts (due to their low tone) as " freaking out. " I'm sorry I

didn't clarify in my email. Nothing that Liz has said has made me

feel the need to check out my son's vision. I already had it " in the

works. " If you were to research steps to take in trying to figure

out a globablly delayed child, one would need to check hearing,

vision, have EEG testing done, etc. Over the past couple years I've

had the hearing checked twice, and EEG testing done last summer. (As

we thought he could have been having seizures.) The next step is the

vision (have been doing it for both boys, and for other reasons than

just steps to rule out in Global Developmental Delay.) If you need a

link, I'll send you one. A local peidatric neurologist has all these

steps in a flowchart on his website, which is actualy from one of the

pediatric neurological associations. (Again, I'll send the link if

you want it.) I need to be able to go into his office and show that

I've taken care of these things before he starts ordering MRI, blood

tests, etc.

So I hope this has clarified. In a supportive group of moms we

should be able to bounce ideas around without assuming someone

is " freaking out " and having a nervous breakdown from it. (Which I

assure you I'm not as from what I've wrote below I've been dealing

with this stuff long before joining this discussion group.) Thank

you, though, for your thoughts and feedback . I do appreciate it!

Pearson

Mom of Owen, 33 months

[Guest guest]

Do you mean the look of their skin, or is there some other skin tone

I never heard of? My children are all ghostly, especially the two

redheads, but in a healthy way...

> >

> > Almost all here has or cares for a child with

> > a communication impairment and out of that group a large % have

> hypotonia -

> > or low tone. I've never been told by anyone that hypotonia means

> you

> > need to check the heart -never heard of any of our children

having a

> > high number of heart problems.

> >

> > Yes perhaps ...

> > A child has hypotonia and a heart murmur...there may be a child

here

> > who has hypotonia and flat feet. It doesn't mean that this child

is

> > the rule for all.

> >

> > And as a PS -my Dad, father in law and husband all had heart

attacks

> > which my Dad and father in law died of...and my mom had open heart

> > surgery -and none of the above had low tone (but I'm sure they all

> > wore white underwear at some point -hmmmm)

> >

> > We have to stick to the facts for the majority.

> >

> > There are many adults with mild low tone (which is what most of

our

> > children have by the way- most here do not have children diagnosed

> > as " floppy " when infants even though there are a few here as

> > well...without heart issues. Here's a good website on benign

> (notice

> > the word benign) congenital hypotonia

> > http://www.lightlink.com/vulcan/benign/ There's also information

in

> > The Late Talker book on this -and again it's a " soft sign " that

many

> > don't even pick up which is why a neurodevelopmental pediatrician

or

> > pediatric neurologist evaluation is recommended. (and they will

> also

> > relieve your anxiety on this topic!)

> >

> > The following book shows that it's not that it's

impossible...after

> > all anyone can have heart problems -but the exception to the

rule -

> > very rare.

> >

> > Quote from The Floppy Infant By Victor Dubowitz

> > (if your child was floppy)

> >

> > " All standard texts mention hypotonia in association with heart

> > disease, but in practice the association is exceptionall. One

> > wonders whether both the hypotonia and the congenital heart

lesions

> > are more likely to be coincidental mainifestations of a more

> > generalized disorder (Fig. 8.6) The two may certainly be

associated

> > in Marfan's syndrome and mongolism, and type 2 glycogenosis

(Pompe's

> > disease) affects cardiac as well as skeletal muscle.

> >

> > The first case on record of hypotonia in association with

congenital

> > heart disease is the four-year-old girl described by on and

> > Weiss (1929). In addition to her extreme flaccidity and cyanotic

> > congenital heart lesion, she also had exophthalmos, unilateral

> ptosis

> > and external rectus weakness, suggesting a more extensive

> condition. "

> > http://books.google.com/books?

>

id=fFfu6t2E5ccC & pg=PA133 & lpg=PA133 & dq=hypotonia+heart & source=web & ots=D

> sbZnLJM5x & sig=fOaMcd5AGDJAm9QtIDECdzyNQO8 & hl=en

> >

> > So it's rare even for floppy babies

> > Again most of our children were not floppy and have 'mild' low

tone

> > http://www.lightlink.com/vulcan/benign/

> >

> > Now on the other hand probably many of us here should do blood

> > analysis at some point for our child through their pediatrician

> like I did to check

> > carnotine levels. You do not want to supplement with carnotine

> until

> > you are tested because if you test low in this amino acid that can

> > affect the muscles around the heart. It's rare to be low in

> > carnotine and if one is -there is a prescription carnotine which

> your

> > child will have to be on for life for his or her protection. It

> > would be a good thing to find out sooner.

> >

> > If you just supplement prior with this you skew the results.

> >

> > Please don't mix up carnotine with another similar sounding amino

> acid-

> > carnosine. You can supplement with carnosine -and it's found in

> carn-

> > aware. http://www.carn-aware.com/ Carnosine and carnotine sound

> the

> > same -but again do not supplement with carnoTine without checking

> > your child's levels with your pediatrician first. And please do

> > check at some point. We have credible information from

> > mom/pediatrician/researcher Dr. in the archives

about

> > the tests to ask for and why.

> >

> > And please don't just accept all that is posted here without

> checking

> > it out with an expert as there is misinformation posted here by me

> > and everyone else. None of us are perfect. Then again -there is

> > some really incredible information posted here every day as well

> that

> > you may not always be able to find back up on elsewhere yet...but

at

> > least with low tone and heart problems we can check that out and

> know

> > it's misinformation that scared you.

> >

> > =====

> >

[Guest guest]

Hi ,

I'm glad to hear your mental health is, in fact, still intact. If

there is one more sword fight in this house, mine will be gone for

good. I would be very interested in the flowchart you speak of. I

love charts!

in NJ

>

> Hi ,

> I'm sorry if you took my email back to Liz about checking out my

> boys' hearts (due to their low tone) as " freaking out. " I'm sorry I

> didn't clarify in my email. Nothing that Liz has said has made me

> feel the need to check out my son's vision. I already had it " in

the

> works. " If you were to research steps to take in trying to figure

> out a globablly delayed child, one would need to check hearing,

> vision, have EEG testing done, etc. Over the past couple years I've

> had the hearing checked twice, and EEG testing done last summer.

(As

> we thought he could have been having seizures.) The next step is

the

> vision (have been doing it for both boys, and for other reasons than

> just steps to rule out in Global Developmental Delay.) If you need

a

> link, I'll send you one. A local peidatric neurologist has all

these

> steps in a flowchart on his website, which is actualy from one of

the

> pediatric neurological associations. (Again, I'll send the link if

> you want it.) I need to be able to go into his office and show that

> I've taken care of these things before he starts ordering MRI, blood

> tests, etc.

>

> So I hope this has clarified. In a supportive group of moms we

> should be able to bounce ideas around without assuming someone

> is " freaking out " and having a nervous breakdown from it. (Which I

> assure you I'm not as from what I've wrote below I've been dealing

> with this stuff long before joining this discussion group.) Thank

> you, though, for your thoughts and feedback . I do appreciate

it!

>

> Pearson

> Mom of Owen, 33 months

>

[Guest guest]

Elasticity

> > >

> > > Almost all here has or cares for a child with

> > > a communication impairment and out of that group a large % have

> > hypotonia -

> > > or low tone. I've never been told by anyone that hypotonia

means

> > you

> > > need to check the heart -never heard of any of our children

> having a

> > > high number of heart problems.

> > >

> > > Yes perhaps ...

> > > A child has hypotonia and a heart murmur...there may be a child

> here

> > > who has hypotonia and flat feet. It doesn't mean that this

child

> is

> > > the rule for all.

> > >

> > > And as a PS -my Dad, father in law and husband all had heart

> attacks

> > > which my Dad and father in law died of...and my mom had open

heart

> > > surgery -and none of the above had low tone (but I'm sure they

all

> > > wore white underwear at some point -hmmmm)

> > >

> > > We have to stick to the facts for the majority.

> > >

> > > There are many adults with mild low tone (which is what most of

> our

> > > children have by the way- most here do not have children

diagnosed

> > > as " floppy " when infants even though there are a few here as

> > > well...without heart issues. Here's a good website on benign

> > (notice

> > > the word benign) congenital hypotonia

> > > http://www.lightlink.com/vulcan/benign/ There's also

information

> in

> > > The Late Talker book on this -and again it's a " soft sign " that

> many

> > > don't even pick up which is why a neurodevelopmental

pediatrician

> or

> > > pediatric neurologist evaluation is recommended. (and they

will

> > also

> > > relieve your anxiety on this topic!)

> > >

> > > The following book shows that it's not that it's

> impossible...after

> > > all anyone can have heart problems -but the exception to the

> rule -

> > > very rare.

> > >

> > > Quote from The Floppy Infant By Victor Dubowitz

> > > (if your child was floppy)

> > >

> > > " All standard texts mention hypotonia in association with heart

> > > disease, but in practice the association is exceptionall. One

> > > wonders whether both the hypotonia and the congenital heart

> lesions

> > > are more likely to be coincidental mainifestations of a more

> > > generalized disorder (Fig. 8.6) The two may certainly be

> associated

> > > in Marfan's syndrome and mongolism, and type 2 glycogenosis

> (Pompe's

> > > disease) affects cardiac as well as skeletal muscle.

> > >

> > > The first case on record of hypotonia in association with

> congenital

> > > heart disease is the four-year-old girl described by on and

> > > Weiss (1929). In addition to her extreme flaccidity and

cyanotic

> > > congenital heart lesion, she also had exophthalmos, unilateral

> > ptosis

> > > and external rectus weakness, suggesting a more extensive

> > condition. "

> > > http://books.google.com/books?

> >

>

id=fFfu6t2E5ccC & pg=PA133 & lpg=PA133 & dq=hypotonia+heart & source=web & ots=D

> > sbZnLJM5x & sig=fOaMcd5AGDJAm9QtIDECdzyNQO8 & hl=en

> > >

> > > So it's rare even for floppy babies

> > > Again most of our children were not floppy and have 'mild' low

> tone

> > > http://www.lightlink.com/vulcan/benign/

> > >

> > > Now on the other hand probably many of us here should do blood

> > > analysis at some point for our child through their pediatrician

> > like I did to check

> > > carnotine levels. You do not want to supplement with carnotine

> > until

> > > you are tested because if you test low in this amino acid that

can

> > > affect the muscles around the heart. It's rare to be low in

> > > carnotine and if one is -there is a prescription carnotine

which

> > your

> > > child will have to be on for life for his or her protection. It

> > > would be a good thing to find out sooner.

> > >

> > > If you just supplement prior with this you skew the results.

> > >

> > > Please don't mix up carnotine with another similar sounding

amino

> > acid-

> > > carnosine. You can supplement with carnosine -and it's found

in

> > carn-

> > > aware. http://www.carn-aware.com/ Carnosine and carnotine

sound

> > the

> > > same -but again do not supplement with carnoTine without

checking

> > > your child's levels with your pediatrician first. And please do

> > > check at some point. We have credible information from

> > > mom/pediatrician/researcher Dr. in the archives

> about

> > > the tests to ask for and why.

> > >

> > > And please don't just accept all that is posted here without

> > checking

> > > it out with an expert as there is misinformation posted here by

me

> > > and everyone else. None of us are perfect. Then again -there

is

> > > some really incredible information posted here every day as

well

> > that

> > > you may not always be able to find back up on elsewhere

yet...but

> at

> > > least with low tone and heart problems we can check that out

and

> > know

> > > it's misinformation that scared you.

> > >

> > > =====

> > >

[Guest guest]

,

I sent it to you in a separate email. I don't want to do anything to

contribute to anymore fighting on this discussion group.

[Guest guest]

I also would love to see the chart!

>

> Hi ,

>

> I'm glad to hear your mental health is, in fact, still intact. If

> there is one more sword fight in this house, mine will be gone for

> good. I would be very interested in the flowchart you speak of.

I

> love charts!

>

> in NJ