hypotonia

February 9, 2003

Rhonda - My DD is hypotonic. She was prescribed Carnitine. It has helped with

the hypotonia, as well as language, and behavior.

-Liz P

hypotonia

I was wondering if anyone could answer this. In addition to therapy, are

there any supplements that can help with hypotonia? I believe Livia's

low muscle tone is holding her up and it's killing me cause we're moving

at a snail's pace here. Any advice will, as always be gratefully

appreciated.

Rhonda

February 9, 2003

Thanks, Liz P, but is it carnitine or carnosine? And do you know if you

can give both?

February 10, 2003

I don't know anything about Carnosine - I've seen a lot of posts, though. We

tried a prescription called Carnitor; it was a disaster - it appears to have

magnesium (which my DD is EXTREMELY sensitive to) and also some other additive

that scared the heck out of me).

We got an RX for Acetyl-L-Carnitine (Thorne Labs), she takes it 4 times a day,

and all is well.

-Liz P

Re: hypotonia

Thanks, Liz P, but is it carnitine or carnosine? And do you know if you

can give both?

February 10, 2003

selenomethione/methyselenocysteine non selenite selenium seems to

help with muscle tone. it is a neural thing to a surprising extent i

don't know why, hormones manufactured by the brain? in all my years

with this selenium is the only thing that has really made any

difference and is proably a much better body shaper for women than

all these diets etc

> I was wondering if anyone could answer this. In addition to

therapy, are

> there any supplements that can help with hypotonia? I believe

Livia's

> low muscle tone is holding her up and it's killing me cause we're

moving

> at a snail's pace here. Any advice will, as always be

gratefully

> appreciated.

> Rhonda

February 10, 2003

Do you need a prescription for carnitine?

February 10, 2003

I think so, I cannot order the carnitinr (even though I identified the source);

they told me they would only ship it after my doc called.

- Liz P

February 10, 2003

In a message dated 10/02/2003 08:43:30 GMT Standard Time, dave@...

writes:

> Dave (a 30 year old antiaging guru with ADD)

>

LOL You funny too

Mx

February 10, 2003

No way, Carnitine is not a prescription drug. Try this link

http://www.lef.org/cgi-local/welcome.cgi/id=2564/welcome.html and search for

carnitine in the products section. They have it for $12 for 30 capsules of

600mg each, or 100 grams of powder for $55.31. All aminos should be on an

empty stomach, despite some posts saying otherwise. You only have so many

receptors in your brain, and they will be filled with other proteins you

eat, so you are largely wasting your money by taking aminos on an empty

stomach.

Carnosine (as opposed to carnitine) is an antiglycation agent (it prevents

bonding of sugar to proteins, a cause of aging). I take both ALC and

carnosine, 2 grams of each per day.

Also, to bulk up or add muscle mass, try arginine/ornithine in combination

in an approximate 2:1 ratio from the above site. Will boost growth hormone

release naturally. If the child has herpes/cold sores, don't do it, and

stick with ornithine alone. Ornithine alone can make you sleep very well.

Arginine alone wakes you up. The combo tends to cancel itself out with

respect to sleep.

Thanks,

Dave (a 30 year old antiaging guru with ADD)

Dave Asprey

dave@...

www.asprey.net/life

Message: 15

Date: Sun, 9 Feb 2003 22:15:47 -0500

From: " E " <lizzy03@...>

Subject: Re: hypotonia

I think so, I cannot order the carnitinr (even though I identified the

source); they told me they would only ship it after my doc called.

- Liz P

February 10, 2003

I get mine right from vitamin world at the local mall. My " NT " daughter who

is a med-long distance runner, takes it too-it helps her alot.

Re: hypotonia

> I think so, I cannot order the carnitinr (even though I identified the

source); they told me they would only ship it after my doc called.

>

> - Liz P

>

February 12, 2003

Hi Liz - I have got the carnitine and starting tomorrow - (much thanks to Steve

for his advice, I ended up getting the Acetyl Carnitine simply because they had

sold what I was looking at yesterday) I was just wondering Liz how long did it

take before you started seeing results?

Thanks heaps

Terri NZ

Re: hypotonia

Rhonda - My DD is hypotonic. She was prescribed Carnitine. It has helped

with the hypotonia, as well as language, and behavior.

-Liz P

hypotonia

I was wondering if anyone could answer this. In addition to therapy, are

there any supplements that can help with hypotonia? I believe Livia's

low muscle tone is holding her up and it's killing me cause we're moving

at a snail's pace here. Any advice will, as always be gratefully

appreciated.

Rhonda

February 12, 2003

Terri

It seems like we saw results with the Carnitine within a few days behaviorally,

it's been incremental in tone.

Good luck!

-Liz P

August 11, 2005

,

my son has hypotonia. I think PT was the greatest help for us. In my son's case,

he has upper body low muscle tone so fine motor is a tough task for him.

However, he has been in therapy in the past 5 years and he greatly improved.

There is Carnitor that might be Rx but I prefer to keep my son away from any

drugs.

Developmentally my son is 20 mos but his motor skills around 30 mos old so

therapies do help greatly to the point that his OT was discontinued last year.

I do lots of jumping with him and major thing was an exercise ball where he

learned balance and improved upper body strength. My husband tickle our son

while helping to strenthen his abs. I should mention that our child didn't start

sitting on his own till about 2 years old and walk at 3 - he had lots of medical

conditions during first years of his life.

PT was the best help for him but OT as a teammate made major difference. He had

30 min a week for OT and about 2 hours accumulatively of PT

bigcheech91 <bigcheech91@...> wrote:

Well, we're unfortunately getting closer to a diagnosis of apraxia.

We just had an OT evaluation today (which, I might add was deemed

unnecessary by our pediatrician, speech therapist, and homeopath).

The OT immediately recognized the signs of hypotonia, and recommended

one hour per week of OT (although it sounds like a combination of PT

and OT).

---------------------------------

Start your day with - make it your home page

August 12, 2005

,

My son worked with an OT for an hour a week from 3.5 years old through 8.5 years

old. During the school year it was school related activities and summer months

were medically related. He had other issues (safety awareness) vestibular and

procioceptive were his main areas of weakness.

You should see some progress by three months. I used an OT who was SIPT

certified and had a sensory gym in their private practice.

websites are numerous. here are some you can try:

www.sinetwork.com

www.sensorylearning.com.

Here is another link that explains the theory behind sensory learning:

http://www.positivehealth.com/permit/Articles

sensory support groups might be helpful:

http://spdnetwork.org/parentconnection/us.html

<http://spdnetwork.org/parentconnection/us.html>

Books:RAISING A SENSORY SMART CHILD

The Definitive Handbook for Helping Your Child with Sensory Integration Issues

by Lindsey Biel, M.A., OTR/L and Peske, Foreword by Temple Grandin

Do you have a Little Gym near you. www.thelittlegym.com or even a gymnastics

school that works with preschool disabled. Check your local area . . . ask the

OT or special ed teacher if she knows of any gymboree type places.

Also I found swimming, jumping on a trampoline, scooters, wheel barrow races,

leap frog, and jump rope all increased my son's weak muscles. He also enjoyed

the bigem balls when he rolled on top his hands would have to stop him from

falling. Little did he know he was working on his arm muscles. Clothespins and

playdoh all worked his finger muscles.

The interactive metronome has helped many global apraxic/dyspraxic children.

www.interactivemetronome.com (must be at least 7) I believe most OTs who are

certified will give an evaluation to see if your child is a good candidate.

Some sessions can be up to an hour long for 20 visits. There are also home

programs which may decrease the cost.

That's all for now. Good luck!

Joanne Mulholland

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[ ] Hypotonia

> Well, we're unfortunately getting closer to a diagnosis of apraxia.

> We just had an OT evaluation today (which, I might add was deemed

> unnecessary by our pediatrician, speech therapist, and homeopath).

> The OT immediately recognized the signs of hypotonia, and recommended

> one hour per week of OT (although it sounds like a combination of PT

> and OT).

>

> Questions:

> (1.) Does that sound like the proper amount of OT?

> (2.) Does anyone have any idea of how long it takes to improve and

> become " average " ?

> (3.) Are there any resources anyone can recommend (books, websites,

> etc.) where I can find activities to work on this at home?

> (4.) Has anyone found any typical scheduled activities to be helpful

> for this problem? (gym classes, swimming, etc.) (The OT suggested

> that martial arts would be way too difficult for him at this point.)

>

> That's all for now. You can respond here or directly to my email if

> you prefer. Thanks for any and all advice!

>

> (, 3 years, 2 months old)

>

July 24, 2006

Hi all,

A year ago, my son was having trouble with holding a pencil to write and

since he was going into Kindergarten and he just would NOT work with me, we

took him to an occupational therapist. He was diagnosed with hypotonia. My

question is, I remember someone on this list saying that after starting

Valtrex, their son no longer had hypotonia. The occupational therapist we

are working with said that hypotonia just stays with you; you can strengthen

your muscles to " cover it up " but you'll always have hypotonia. This

doesn't make sense to me. I thought that hypotonia was simply having low

muscle tone. Can't someone firm up and not have hypotonia anymore? Can

someone explain hypotonia to me? When I look online, I just see stories

about " floppy " babies, and my son was never floppy.

Thanks! As always, you guys are a great resource and one that I really

trust.

Sincerely,

April

July 24, 2006

Hi,

I'm not an expert on this, but I would think

even if you couldn't totally eliminate a condition

like this (even if the person accurately diagnosed

it and I might consider getting a second opinion on

that since your son wasn't floppy as a baby), you

could strengthen it to a point it wouldn't be an

issue.

My son had hypotonia. He's 12 now and it's not

really an issue any more. I never really think about

it.

Look for activities that strengthen areas of weakness

and make sure they are done daily. If you're consistent

these issues often do fade somewhat or become " non-issues "

over time.

On Jul 24, 2006, at 11:56 AM, April Jagnow wrote:

> Hi all,

>

> A year ago, my son was having trouble with holding a pencil to write

> and

> since he was going into Kindergarten and he just would NOT work with

> me, we

> took him to an occupational therapist. He was diagnosed with

> hypotonia. My

> question is, I remember someone on this list saying that after starting

> Valtrex, their son no longer had hypotonia. The occupational

> therapist we

> are working with said that hypotonia just stays with you; you can

> strengthen

> your muscles to " cover it up " but you'll always have hypotonia. This

> doesn't make sense to me. I thought that hypotonia was simply having

> low

> muscle tone. Can't someone firm up and not have hypotonia anymore?

> Can

> someone explain hypotonia to me? When I look online, I just see

> stories

> about " floppy " babies, and my son was never floppy.

>

> Thanks! As always, you guys are a great resource and one that I really

> trust.

>

> Sincerely,

> April

>

> Responsibility for the content of this message lies strictly with

> the original author(s), and is not necessarily endorsed by or the

> opinion of the Research Institute, the Parent Coalition, or

> the list moderator(s).

>

July 25, 2006

April,

I can't write more right now because we're heading out the door, but I am

one whose kids' muscle tone improved on the protocol. I think Valtrex made

the difference for us. It was a gradual thing. Now both of my boys have

" normal " muscle tone... in fact, in his legs my oldest is now even a bit too

tight! My oldest son was such a floppy baby that I was told he might never

walk.

Caroline

> From: April Jagnow <april@...>

> Reply-< >

> Date: Mon, 24 Jul 2006 13:56:28 -0500

> < >

> Subject: hypotonia

>

> Hi all,

>

> A year ago, my son was having trouble with holding a pencil to write and

> since he was going into Kindergarten and he just would NOT work with me, we

> took him to an occupational therapist. He was diagnosed with hypotonia. My

> question is, I remember someone on this list saying that after starting

> Valtrex, their son no longer had hypotonia. The occupational therapist we

> are working with said that hypotonia just stays with you; you can strengthen

> your muscles to " cover it up " but you'll always have hypotonia. This

> doesn't make sense to me. I thought that hypotonia was simply having low

> muscle tone. Can't someone firm up and not have hypotonia anymore? Can

> someone explain hypotonia to me? When I look online, I just see stories

> about " floppy " babies, and my son was never floppy.

>

> Thanks! As always, you guys are a great resource and one that I really

> trust.

>

> Sincerely,

> April

July 25, 2006

April -

All 3 of my kids were diagnosed with low muscle tone and all are fine now

(6 years later). 2 of them went through OT and by the time the 3rd child

came along we basically had an OT room set up in the basement. A lot of

the strengthening activities can be accomplished through play - the kids'

favorite is a zip swing and monkey bars. When we started with Dr. G with

my oldest I asked the OT how long we would be with her (we had already

been seeing her for a year for hypotonia as well as sensory issues).

That was in the fall. She said at least for another 3 years so he would

continue developing to keep up with his peers and not stand out in PE.

After 6 months on the protocol he tested out of OT in all areas. The OT

was amazed and had no explanation for it. Over the years we have

sporadically gone back for sensory therapy, but his hypotonia remained

fine. We do incorporate a lot of hand strengthening activities in their

play still. The latest was indoor rock climbing. It almost brought me

to tears to see my kids able to climb with their peers and be

indistinguishable. I'm not sure it ever goes away because we've always

continued the strengthening activities. Being a kid, a regular trip to

the playground and lots of climbing ought to be enough to maintain after

the OT finishes and the protocol gets your child's body healthy.

Good luck,

On Mon, 24 Jul 2006 13:56:28 -0500 " April Jagnow " <april@...>

writes:

Hi all,

A year ago, my son was having trouble with holding a pencil to write and

since he was going into Kindergarten and he just would NOT work with me,

we

took him to an occupational therapist. He was diagnosed with hypotonia.

My

question is, I remember someone on this list saying that after starting

Valtrex, their son no longer had hypotonia. The occupational therapist we

are working with said that hypotonia just stays with you; you can

strengthen

your muscles to " cover it up " but you'll always have hypotonia. This

doesn't make sense to me. I thought that hypotonia was simply having low

muscle tone. Can't someone firm up and not have hypotonia anymore? Can

someone explain hypotonia to me? When I look online, I just see stories

about " floppy " babies, and my son was never floppy.

Thanks! As always, you guys are a great resource and one that I really

trust.

Sincerely,

April

July 25, 2006

My son was not a floppy baby either, but he was quite passive and not very

active compared to my other two. He also didn't like being put on his stomach to

raise his head when he was an infant. He would protest, which isn't something he

did very often. But he did sit, stand and walk on time, so I was surprised when

I was told later (just around two years old) that he had hypotonia. Dr. Goldberg

said the same thing when we went for our initial consultation. He was 2 years, 3

months at the time.

After going on Valtrex (and the diet -- that may have played a part), he

became active and energetic and toned right up. He loves to jump on the

trampoline and you should see his calf muscles. I wish mine had even half the

definition his do. He hasn't been on an anti-viral for a year and a half now and

he is fine. He continues to be active, well toned and very strong.

Rhoda