Re: carnitine deficiency question

[Guest guest]

no low carnitine deficiency here. Labs were ok.

Sharon

trmckenna1 <trmckenna1@...> wrote:

Questions for parents that have had their children checked for

carnitine deficiency:

Did your apraxic child show low muscle tone when you got the labs done?

Did your apraxic child without signs of low muscle tone come back

positive for carnitine deficiency?

Thank you in advance,

Tina

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[Guest guest]

Hi

My son has not been formally diagnosed with apraxia though he does

have hypotonia. His SLP mentioned apraxia after seeing Ben about 4 times

and since then (1year ago) she said he does not have it and that she should

never have even mentioned it (she is relatively new). I still wonder if he

is mildly apraxic.

I did have Ben tested and his results are:

free carnitine 25 range 18-25

carnitine 29 range 26-65

carnitine esters, ser/plas 4 normal is less than 19.7

Ben definitely shows hypotonia especially in the trunk and lower

extremities. No obvious oral hypotonia and his fine motor skills are ok.

Jess

On 6/25/07, trmckenna1 <trmckenna1@...> wrote:

>

> Questions for parents that have had their children checked for

> carnitine deficiency:

>

> Did your apraxic child show low muscle tone when you got the labs done?

> Did your apraxic child without signs of low muscle tone come back

> positive for carnitine deficiency?

>

> Thank you in advance,

> Tina

>

>

>

[Guest guest]

My Apraxic daughter has very low muscle tone and we got the labs done.

She came back with a Carnitine Deficiency.

>

> Questions for parents that have had their children checked for

> carnitine deficiency:

>

> Did your apraxic child show low muscle tone when you got the labs

done?

> Did your apraxic child without signs of low muscle tone come back

> positive for carnitine deficiency?

>

> Thank you in advance,

> Tina

>

[Guest guest]

Yes, but very mild low tone (truncal hyptonia that was pointed out to

me by an OT. Otherwise, I would never have clued into it). As a

matter of fact, the report from the very first OT assessment we had

done states that his tone is normal.

>

> Questions for parents that have had their children checked for

> carnitine deficiency:

>

> Did your apraxic child show low muscle tone when you got the labs

done?

> Did your apraxic child without signs of low muscle tone come back

> positive for carnitine deficiency?

>

> Thank you in advance,

> Tina

>

[Guest guest]

Jess,

I don't know how old Ben is but here is an exercise to do daily once he hits

about the age 5-6 to help beat that hypotonia. Squats and lifts with a medicine

ball. Go buy an 8 lb medicine ball and have that boy squat down and lift it to

an elevated surface. We use the kitchen counter (we also use an 11 lb ball

since Mark is older and can handle the larger weight). Go up and down for 3

minutes, 2 times daily. This will regularly work his trunkal core and his legs.

It takes a bit of time to get that core strength up to speed but well worth the

effort as it affects your childs ability to sit on a chair and write well once

he hits the school arena. In addition, get him involved with a lot of sports

programs with high aerobic activity and he should be just super!

Can't answer about the carnitine issue but can answer about the hypotonia. Mark

was quite hypotonic (I've seen worse cases but his was quite bad) and this

helped us to resolve it.

Janice

[sPAM] Re: [ ] carnitine deficiency question

Hi

My son has not been formally diagnosed with apraxia though he does

have hypotonia. His SLP mentioned apraxia after seeing Ben about 4 times

and since then (1year ago) she said he does not have it and that she should

never have even mentioned it (she is relatively new). I still wonder if he

is mildly apraxic.

I did have Ben tested and his results are:

free carnitine 25 range 18-25

carnitine 29 range 26-65

carnitine esters, ser/plas 4 normal is less than 19.7

Ben definitely shows hypotonia especially in the trunk and lower

extremities. No obvious oral hypotonia and his fine motor skills are ok.

Jess

On 6/25/07, trmckenna1 <trmckenna1@...> wrote:

>

> Questions for parents that have had their children checked for

> carnitine deficiency:

>

> Did your apraxic child show low muscle tone when you got the labs done?

> Did your apraxic child without signs of low muscle tone come back

> positive for carnitine deficiency?

>

> Thank you in advance,

> Tina

>

>

>

[Guest guest]

Hi Janice,

Thank you for your advice! When you squat and lift are the arms close to

the body or away? Ben is 2.5 now so we will try this but he has his own

ideas as to what he wants....

We do gymnastics weekly and swim daily. He is very active and we do lots of

climbing. Hippotherapy starts in the fall. He did do PT for a few months

last year and was d/c'd, today he has a PT consult through our 0-3

intervention program. I will be picking her brain. I don't think he is

dyspraxic but I will let her check that out.

Jess

On 6/26/07, Janice <jscott@...> wrote:

>

> Jess,

>

> I don't know how old Ben is but here is an exercise to do daily once he

> hits about the age 5-6 to help beat that hypotonia. Squats and lifts with a

> medicine ball. Go buy an 8 lb medicine ball and have that boy squat down and

> lift it to an elevated surface. We use the kitchen counter (we also use an

> 11 lb ball since Mark is older and can handle the larger weight). Go up and

> down for 3 minutes, 2 times daily. This will regularly work his trunkal core

> and his legs. It takes a bit of time to get that core strength up to speed

> but well worth the effort as it affects your childs ability to sit on a

> chair and write well once he hits the school arena. In addition, get him

> involved with a lot of sports programs with high aerobic activity and he

> should be just super!

>

> Can't answer about the carnitine issue but can answer about the hypotonia.

> Mark was quite hypotonic (I've seen worse cases but his was quite bad) and

> this helped us to resolve it.

>

> Janice

>

>

> [sPAM] Re: [ ] carnitine deficiency question

>

> Hi

> My son has not been formally diagnosed with apraxia though he

> does

> have hypotonia. His SLP mentioned apraxia after seeing Ben about 4 times

> and since then (1year ago) she said he does not have it and that she

> should

> never have even mentioned it (she is relatively new). I still wonder if he

> is mildly apraxic.

> I did have Ben tested and his results are:

> free carnitine 25 range 18-25

> carnitine 29 range 26-65

> carnitine esters, ser/plas 4 normal is less than 19.7

>

> Ben definitely shows hypotonia especially in the trunk and lower

> extremities. No obvious oral hypotonia and his fine motor skills are ok.

>

> Jess

>

> On 6/25/07, trmckenna1 <trmckenna1@... <trmckenna1%40>>

> wrote:

> >

> > Questions for parents that have had their children checked for

> > carnitine deficiency:

> >

> > Did your apraxic child show low muscle tone when you got the labs done?

> > Did your apraxic child without signs of low muscle tone come back

> > positive for carnitine deficiency?

> >

> > Thank you in advance,

> > Tina

> >

> >

> >

>

>

[Guest guest]

My son who just turned 4 showed signs of hypotonia since he was 2-3

years old. He was born with birth defects on his hands (syndactaly)

and Moebius Syndrome was suggested since he has low tone in his face

but ruled out by a geneticist. He has low tone in his legs and hands

and arms mainly. He learned to sit up and walk at normal times.

>

> Questions for parents that have had their children checked for

> carnitine deficiency:

>

> Did your apraxic child show low muscle tone when you got the labs

done?

> Did your apraxic child without signs of low muscle tone come back

> positive for carnitine deficiency?

>

> Thank you in advance,

> Tina

>

[Guest guest]

Jess,

Ben is a little young for this yet.... We don't want to damage his joints with

too heavy an object! When he is older or with a lighter item, he will squat

right down to the ground and lift it up with his hands relatively close to his

knees and lift the item up to an elevated surface. Perhaps helping you lift a 3

lb bag of potatoes would work? This really does work the muscles of the legs

and the core body but you do have to do it everyday for a substantial period of

time.

A better idea for now would be to get him to help you carry in the groceries,

push the vaccum cleaner or the mop. What you want to do is to work with weight

bearing exercises throughout your day as much as possible. Again, have him hang

from the monkey bars (with you ready to catch him when he tires). Whatever you

do, make it a game and always stop the exercise before he is ready to quit so

that he will be eager to do it again the next time.

.....a sneaky little way to keep your child from rebelling against ongoing

therapy.... make it soooo much fun and then quit before they are ready!

Janice

[sPAM] Re: [ ] carnitine deficiency question

>

> Hi

> My son has not been formally diagnosed with apraxia though he

> does

> have hypotonia. His SLP mentioned apraxia after seeing Ben about 4 times

> and since then (1year ago) she said he does not have it and that she

> should

> never have even mentioned it (she is relatively new). I still wonder if he

> is mildly apraxic.

> I did have Ben tested and his results are:

> free carnitine 25 range 18-25

> carnitine 29 range 26-65

> carnitine esters, ser/plas 4 normal is less than 19.7

>

> Ben definitely shows hypotonia especially in the trunk and lower

> extremities. No obvious oral hypotonia and his fine motor skills are ok.

>

> Jess

>

> On 6/25/07, trmckenna1 <trmckenna1@... <trmckenna1%40>>

> wrote:

> >

> > Questions for parents that have had their children checked for

> > carnitine deficiency:

> >

> > Did your apraxic child show low muscle tone when you got the labs done?

> > Did your apraxic child without signs of low muscle tone come back

> > positive for carnitine deficiency?

> >

> > Thank you in advance,

> > Tina

> >

> >

> >

>

>

[Guest guest]

Tina-

My son is probably one of the more rare cases in this board. He has

a known brain abnormality that causes his severe low tone and

Cerebral Palsy (no known case for the CP/brain abnormality though).

We did test for carnitine deficiency though and it was on the low

normal side. We are supplementing with carnitor but the initial

dosage was way too high for my son. We have halved the dosage and he

appears to be more himself - not wired on speed!!!!!!!!

Katrina

> > >

> > > Questions for parents that have had their children checked for

> > > carnitine deficiency:

> > >

> > > Did your apraxic child show low muscle tone when you got the

labs done?

> > > Did your apraxic child without signs of low muscle tone come

back

> > > positive for carnitine deficiency?

> > >

> > > Thank you in advance,

> > > Tina

> > >

> > >

> > >

> >

> >

[Guest guest]

Hi Tina,

had carnitine checked and all tests normal.

Hypotonia was noted first, general dyspraxia noted at

12 months old. She is 3 and not walking or talking

yet.

Kathy

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[Guest guest]

Couple of questions...

When you say " hang from the monkey bars " , how is he hanging? Holding

on with his hands and just hanging there? Lifting legs or moving

while hanging? Or hanging from bended knees? I need a visual!

We're thinking about buying a swing set, and I want a configuration

that will benefit now (and Tyler in the future).

Also, how do you know so much? Your suggestions and depth of

knowledge are always impressive!

in NJ

> > >

> > > Questions for parents that have had their children checked for

> > > carnitine deficiency:

> > >

> > > Did your apraxic child show low muscle tone when you got the

labs done?

> > > Did your apraxic child without signs of low muscle tone come

back

> > > positive for carnitine deficiency?

> > >

> > > Thank you in advance,

> > > Tina

> > >

> > >

> > >

> >

> >

[Guest guest]

Not Janice but I think it is age/safety dependent. My guy is little so

the initial goal is hanging, knees bent upside down with adult either

spotting or holding feet. From there even if he fights you he is working

the abs. Hanging from hands has other value. Basically hanging either

way helps engage the core and then you get more particular as time goes

on. At least that is what my three PT's over 10 years of back problems

have told me. Lastly, because of my own back stuff (I have diagnosed

myself with low tone since all of this and am determined to give my kids

good backs!) I do yoga with my kids. A good kids yoga book is " Fly Like

a Butterfly. " I really do it for myself and they join in. It has to be

that way since they are only 2 and 4. Kids always want to try new things

which is why therapy play works I think. OK, really lastly, beware of

the shoes you buy the kids. You do not have to spend a lot but flat

shoes are bad, bad, bad!!!! What you are going for is a slightly higher

heel than the front. I have managed to find these everywhere, Kohls,

Payless, etc. Flip flops are a bad thing. Crocks are fine. I found this

out for myself the hard way and it really does make a difference for the

tone for anyone but especially these kids. Bowling shoes and keds are

out, chunky 70's shoes are in!

L

bigcheech91 wrote:

>Couple of questions...

>

>When you say " hang from the monkey bars " , how is he hanging? Holding

>on with his hands and just hanging there? Lifting legs or moving

>while hanging? Or hanging from bended knees? I need a visual!

>We're thinking about buying a swing set, and I want a configuration

>that will benefit now (and Tyler in the future).

>

>Also, how do you know so much? Your suggestions and depth of

>knowledge are always impressive!

>

> in NJ

>

>

>> > >

>> > > Questions for parents that have had their children checked for

>> > > carnitine deficiency:

>> > >

>> > > Did your apraxic child show low muscle tone when you got the

>>

>>

>labs done?

>

>

>> > > Did your apraxic child without signs of low muscle tone come

>>

>>

>back

>

>

>> > > positive for carnitine deficiency?

>> > >

>> > > Thank you in advance,

>> > > Tina

>> > >

>> > >

>> > >

>> >

>> >

[Guest guest]

Any of those work! The more fun for the child, the better! Once they can

'hang' successfully, then you want to get them either climbing upwards (works

visual pursuits and tracking) or traipsing accross the monkey bars which works

both visual perceptual and core strength and cortical grasp of the

hands/fingers. The therapy term (yes, there is a word for it) is actually

called brachiation and it is absolutely one of the most 'wonderful' exercises

for our weak little children's bodies. The trick is in getting them to do it

for it is very tiring but.... you have them play, little bits at a time and do

it often.

Building a good, solid exercise regimen for our children is an absolute must for

them. Best done in a way so they don't really know they are doing it and are

just playing! These kids must build their strength. Their opportunities and

horizons open up and broaden to normalcy once we get those bodies in really top

notch form. Everything becomes so much easier for them. We have a rule in our

household: Everyone must do a minimum of 20-40 minutes of aerobic exercise each

and every day. (It is actually on Mark's program from NACD). If there is

nothing else to do, I send Mark out to run around the block a couple of times.

Mark can now run 5 or 6 miles easily and it shows. He bikes everywhere. Do not

think that because your child is dyspraxic that he should not ride a bike or ski

or water ski or boogie board. Quite the opposite: he needs to ride a bike if

you ever want him to be a successful driver. I've had Mark bike riding since he

was 5 or 6; we've had a few accidents, gotten lost a couple of times, smacked a

few parked cars but indeed survived. Now that kid can climb over any type of

terrain proficiently and easily. (Note that I used to give him a cell phone to

put in his pocket just in case something happened when he started on longer

treks... I do advocate this for our kids because Mark would get 'twisted around'

sometimes and get lost... not any more but this is a good safety measure)

Because he worked his visual spatial in bike riding, I am confident that he will

be a successful driver. Many of the adult dyspraxics cannot drive but some can.

I think it depends how hard this visual perceptual\spatial skill was worked on

in them when they were kids. We work it because I want my boy mobile and able

to do anything any other adult can do. And YES, your child can too. Yes, there

will be bruises, scrapes and cuts. But the physical fitness aspect is really

great for them.

Do not handle your dyspraxic child with kit gloves. Their abilities are a

reflection of opportunity and practice. They need much more practice than other

kids but I have found that 'eventually' they can do it. You need to become

their cheerleader and egg them on because our kids CAN put the pieces of the

neuro puzzle together.

Building a good decent playground will do your child wonders. Climbing trees,

fences, all of those 'no-no' boy things are fabulous for these kids. The more

they 'work it', the more those neural connections are built, bridged and solidly

formed into their sensory motor cortex. They get better and better and better.

But they will need to be body builders or runners for their entire lives so they

may as well learn to love it!

Also if you're going to get them a gaming system, get them a Wii, where they can

practice sports and hand to eye movements. (They won't even know it's therapy!)

Janice

[sPAM] [ ] Re: carnitine deficiency question

Couple of questions...

When you say " hang from the monkey bars " , how is he hanging? Holding

on with his hands and just hanging there? Lifting legs or moving

while hanging? Or hanging from bended knees? I need a visual!

We're thinking about buying a swing set, and I want a configuration

that will benefit now (and Tyler in the future).

Also, how do you know so much? Your suggestions and depth of

knowledge are always impressive!

in NJ