Re: testings by peditrician Q for

[Guest guest]

We didn't go down the path of heavy metals etc. As you know that is

very contraversial, and I don't feel like getting into that one. I

posted a list of tests I think are medically indicated given what we

have learned in these children...particularly those with food

allergies/gut issues. But " tests for leaky gut " probably won't

change how you proceed with your child. What you are looking for

sounds more like a DAN approach and if you go that route there are

some good DAN doctors out there...you just have to do some

homework. I will post some suggested blood tests again - and these

can be ordered by your pediatrician as part of a

nutritional/metabolic work-up. If your child has any low tone

component with apraxia - it is medically indicated to do some of

these evalations...particularly in the allergic child. -claudia

> , I posted just this week concerning testing of my son..

Can you give

> me the names of the tests that I can have my pediatrician test for

as far as

> - mercury testing, other metals, vitamins and mineral

deficiencies - possible

> leaky gut tests.. Many people have told me that I should get my

son tested

> for toxic levels of metal, etc, so far I havent.Can a ped. test

for these or

> do I have to go to the special labs. I was told I would have to

go to the

> special labs but would need the a prescription from the doctor -

do you know if

> this correct. My son is 5/12 and has been dx w/PDD/NOS and

apraxia. I have

> rec'd some good information today from some of the parents on the

labs, but

> thought you may be able to shed some light on the names of tests

my ped.

> could take. Unfortunately, she isn't very informed on these two

diagnoses but

> will work with me on therapies. Thank you in advance for your

assistance,

> Phyllis & Nicolas

>

>

>

[Guest guest]

>Repeat posting by popular demand...

Re: FW: autism vs. apraxia

,

THANK YOU!

I have spent the last 8 months researching and researching & it

seems like

I can separate the medicine from the hoo-doo. I greatly appreciate

your Vit

E post as it has convinced me (and my husband) that it is time to

invest in

the lab work. We have a local holistic health center that will

likely be our

first stop. I guess I had just been hoping that I could go the more

traditional route with our family doc, and health insurance. (FYI -

I am an

ICU RN and did several " tours " working in the Bay area as a traveler,

Stanford, UCSF & SF General - loved it there!!! - wish we could

still be

there, especially in light of what my son is going through now.)

We may well head to NYC this fall if we can't get results from the

locals....we have 1 dev ped here in town and the next best bet is KU

med

Center in Kansas City.

I also think that the EI system is so used to seeing uneducated

parents

who are deeply in denial that they don't know what to do with

parents who

are like it's ok - just get me a diagnosis....let's figure this

thing out &

start a treatment plan!

We sought private ST to supplement the EI program but it has not

gone well

and is now on hold pending further evals. I would have thought that

the ST

would spend a few sessions getting to know my son & figuring out the

best

delivery method for the therapy ( I say, Duh - head to the therapy

gym) but

it is evidently not that easy. We have to get an OT eval so the OT

can tell

the ST how & where to deliver the therapy.

<sigh>

Your story gives me much hope...just when I was starting to lose

the last

shreds I had. I could go on and on about my frustrations with the

school.

Thanks Again

Martha McCabe

> , I posted just this week concerning testing of my son..

Can you give

> me the names of the tests that I can have my pediatrician test for

as far as

> - mercury testing, other metals, vitamins and mineral

deficiencies - possible

> leaky gut tests.. Many people have told me that I should get my

son tested

> for toxic levels of metal, etc, so far I havent.Can a ped. test

for these or

> do I have to go to the special labs. I was told I would have to

go to the

> special labs but would need the a prescription from the doctor -

do you know if

> this correct. My son is 5/12 and has been dx w/PDD/NOS and

apraxia. I have

> rec'd some good information today from some of the parents on the

labs, but

> thought you may be able to shed some light on the names of tests

my ped.

> could take. Unfortunately, she isn't very informed on these two

diagnoses but

> will work with me on therapies. Thank you in advance for your

assistance,

> Phyllis & Nicolas

>

>

>

[Guest guest]

I took my daughter in for an ear infection today and brought up the

tests you had suggested previously. The pediatrician said that they

don't nomrally do any tests for Apraxia, just treat with speech

therapy, unless there's other issues. My daughter of course has some

low tone issues with her mouth, and she 'W' sits, but that's about it

as far as hypotonia goes. And she doesn't have any allergies that we

know of (I don't know how accurate they are but we had a blood allergy

test done when she was around 5 months old and it was fine for

everything). Given simply a " probable " apraxia for a just turned 2

year old would you agree no tests are warranted? I was thinking

they'd at least do the vitamin tests. I know you can't really speak

as a doctor, but I was surprised they didn't want to do anything and

would like your opinion " off the record " so to speak. Thank you!!!!

Thank you so much for sharing your story!! And I'm so happy for you!!

I don't know if it's the fish oil or the vitamin E that's causing

huge surge in my daughter, but I'm leaning towards the vitamin E since

we'd been on the fish oil for almost 3 weeks with nothing.

Crystal

> We didn't go down the path of heavy metals etc. As you know that is

> very contraversial, and I don't feel like getting into that one. I

> posted a list of tests I think are medically indicated given what we

> have learned in these children...particularly those with food

> allergies/gut issues. But " tests for leaky gut " probably won't

> change how you proceed with your child. What you are looking for

> sounds more like a DAN approach and if you go that route there are

> some good DAN doctors out there...you just have to do some

> homework. I will post some suggested blood tests again - and these

> can be ordered by your pediatrician as part of a

> nutritional/metabolic work-up. If your child has any low tone

> component with apraxia - it is medically indicated to do some of

> these evalations...particularly in the allergic child. -claudia

>

>

[Guest guest]

We didn't go down the path of heavy metals etc. As you know that is

very contraversial, and I don't feel like getting into that one. I

posted a list of tests I think are medically indicated given what we

have learned in these children...particularly those with food

allergies/gut issues. But " tests for leaky gut " probably won't

change how you proceed with your child. What you are looking for

sounds more like a DAN approach and if you go that route there are

some good DAN doctors out there...you just have to do some

homework. I will post some suggested blood tests again - and these

can be ordered by your pediatrician as part of a

nutritional/metabolic work-up. If your child has any low tone

component with apraxia - it is medically indicated to do some of

these evalations...particularly in the allergic child. -claudia

> , I posted just this week concerning testing of my son..

Can you give

> me the names of the tests that I can have my pediatrician test for

as far as

> - mercury testing, other metals, vitamins and mineral

deficiencies - possible

> leaky gut tests.. Many people have told me that I should get my

son tested

> for toxic levels of metal, etc, so far I havent.Can a ped. test

for these or

> do I have to go to the special labs. I was told I would have to

go to the

> special labs but would need the a prescription from the doctor -

do you know if

> this correct. My son is 5/12 and has been dx w/PDD/NOS and

apraxia. I have

> rec'd some good information today from some of the parents on the

labs, but

> thought you may be able to shed some light on the names of tests

my ped.

> could take. Unfortunately, she isn't very informed on these two

diagnoses but

> will work with me on therapies. Thank you in advance for your

assistance,

> Phyllis & Nicolas

>

>

>

[Guest guest]

>Repeat posting by popular demand...

Re: FW: autism vs. apraxia

,

THANK YOU!

I have spent the last 8 months researching and researching & it

seems like

I can separate the medicine from the hoo-doo. I greatly appreciate

your Vit

E post as it has convinced me (and my husband) that it is time to

invest in

the lab work. We have a local holistic health center that will

likely be our

first stop. I guess I had just been hoping that I could go the more

traditional route with our family doc, and health insurance. (FYI -

I am an

ICU RN and did several " tours " working in the Bay area as a traveler,

Stanford, UCSF & SF General - loved it there!!! - wish we could

still be

there, especially in light of what my son is going through now.)

We may well head to NYC this fall if we can't get results from the

locals....we have 1 dev ped here in town and the next best bet is KU

med

Center in Kansas City.

I also think that the EI system is so used to seeing uneducated

parents

who are deeply in denial that they don't know what to do with

parents who

are like it's ok - just get me a diagnosis....let's figure this

thing out &

start a treatment plan!

We sought private ST to supplement the EI program but it has not

gone well

and is now on hold pending further evals. I would have thought that

the ST

would spend a few sessions getting to know my son & figuring out the

best

delivery method for the therapy ( I say, Duh - head to the therapy

gym) but

it is evidently not that easy. We have to get an OT eval so the OT

can tell

the ST how & where to deliver the therapy.

<sigh>

Your story gives me much hope...just when I was starting to lose

the last

shreds I had. I could go on and on about my frustrations with the

school.

Thanks Again

Martha McCabe

> , I posted just this week concerning testing of my son..

Can you give

> me the names of the tests that I can have my pediatrician test for

as far as

> - mercury testing, other metals, vitamins and mineral

deficiencies - possible

> leaky gut tests.. Many people have told me that I should get my

son tested

> for toxic levels of metal, etc, so far I havent.Can a ped. test

for these or

> do I have to go to the special labs. I was told I would have to

go to the

> special labs but would need the a prescription from the doctor -

do you know if

> this correct. My son is 5/12 and has been dx w/PDD/NOS and

apraxia. I have

> rec'd some good information today from some of the parents on the

labs, but

> thought you may be able to shed some light on the names of tests

my ped.

> could take. Unfortunately, she isn't very informed on these two

diagnoses but

> will work with me on therapies. Thank you in advance for your

assistance,

> Phyllis & Nicolas

>

>

>

[Guest guest]

I took my daughter in for an ear infection today and brought up the

tests you had suggested previously. The pediatrician said that they

don't nomrally do any tests for Apraxia, just treat with speech

therapy, unless there's other issues. My daughter of course has some

low tone issues with her mouth, and she 'W' sits, but that's about it

as far as hypotonia goes. And she doesn't have any allergies that we

know of (I don't know how accurate they are but we had a blood allergy

test done when she was around 5 months old and it was fine for

everything). Given simply a " probable " apraxia for a just turned 2

year old would you agree no tests are warranted? I was thinking

they'd at least do the vitamin tests. I know you can't really speak

as a doctor, but I was surprised they didn't want to do anything and

would like your opinion " off the record " so to speak. Thank you!!!!

Thank you so much for sharing your story!! And I'm so happy for you!!

I don't know if it's the fish oil or the vitamin E that's causing

huge surge in my daughter, but I'm leaning towards the vitamin E since

we'd been on the fish oil for almost 3 weeks with nothing.

Crystal

> We didn't go down the path of heavy metals etc. As you know that is

> very contraversial, and I don't feel like getting into that one. I

> posted a list of tests I think are medically indicated given what we

> have learned in these children...particularly those with food

> allergies/gut issues. But " tests for leaky gut " probably won't

> change how you proceed with your child. What you are looking for

> sounds more like a DAN approach and if you go that route there are

> some good DAN doctors out there...you just have to do some

> homework. I will post some suggested blood tests again - and these

> can be ordered by your pediatrician as part of a

> nutritional/metabolic work-up. If your child has any low tone

> component with apraxia - it is medically indicated to do some of

> these evalations...particularly in the allergic child. -claudia

>

>

[Guest guest]

> > We didn't go down the path of heavy metals etc. As you know that

is

> > very contraversial, and I don't feel like getting into that

one. I

> > posted a list of tests I think are medically indicated given

what we

> > have learned in these children...particularly those with food

> > allergies/gut issues. But " tests for leaky gut " probably won't

> > change how you proceed with your child. What you are looking

for

> > sounds more like a DAN approach and if you go that route there

are

> > some good DAN doctors out there...you just have to do some

> > homework. I will post some suggested blood tests again - and

these

> > can be ordered by your pediatrician as part of a

> > nutritional/metabolic work-up. If your child has any low tone

> > component with apraxia - it is medically indicated to do some of

> > these evalations...particularly in the allergic child. -claudia

> >

> >

>

[Guest guest]

> > We didn't go down the path of heavy metals etc. As you know that

is

> > very contraversial, and I don't feel like getting into that

one. I

> > posted a list of tests I think are medically indicated given

what we

> > have learned in these children...particularly those with food

> > allergies/gut issues. But " tests for leaky gut " probably won't

> > change how you proceed with your child. What you are looking

for

> > sounds more like a DAN approach and if you go that route there

are

> > some good DAN doctors out there...you just have to do some

> > homework. I will post some suggested blood tests again - and

these

> > can be ordered by your pediatrician as part of a

> > nutritional/metabolic work-up. If your child has any low tone

> > component with apraxia - it is medically indicated to do some of

> > these evalations...particularly in the allergic child. -claudia

> >

> >

>

[Guest guest]

I had hoped/expected the doctor to order some of the tests at least to

humor me if nothing else. I've already started on the Vit E anyway,

so maybe I'll just ask for the carnitine test so as to not overwhelm

them. Although my daughter's low tone has definitely improved since

starting the vit E!!! People really do hate change! It will probably

be at least 5 years after the tests have been done and published

before it's routinely done here!

My daughter had the allergy testing at 5 months because she had been

constipated since birth. I had a very low milk supply at 2 months, so

we started supplementing and the constipation went a way for a couple

days as she actually got nourishment, and then came back. We tried

cows milk, soy, and even a home made goats milk formula, and she was

still contipated so I asked for the allergy test. Ended up going for

(I can't remember the name) the one that has the " comfort proteins "

where they're already broken down some and cows milk and she did very

well on that. My mom's allergic to cows milk, and I was when I was a

kid but " outgrew it " (although my mom who is very holistic says that's

not really possible and the symptoms are just repressed). So that is

a concern of mine that she would be allergic to cows milk. I'm just

trying to plead ignorance because I don't want to avoid it myself, and

her mac and cheese!

Crystal

> > > We didn't go down the path of heavy metals etc. As you know that

> is

> > > very contraversial, and I don't feel like getting into that

> one. I

> > > posted a list of tests I think are medically indicated given

> what we

> > > have learned in these children...particularly those with food

> > > allergies/gut issues. But " tests for leaky gut " probably won't

> > > change how you proceed with your child. What you are looking

> for

> > > sounds more like a DAN approach and if you go that route there

> are

> > > some good DAN doctors out there...you just have to do some

> > > homework. I will post some suggested blood tests again - and

> these

> > > can be ordered by your pediatrician as part of a

> > > nutritional/metabolic work-up. If your child has any low tone

> > > component with apraxia - it is medically indicated to do some of

> > > these evalations...particularly in the allergic child. -claudia

> > >

> > >

> >

>

[Guest guest]

I had hoped/expected the doctor to order some of the tests at least to

humor me if nothing else. I've already started on the Vit E anyway,

so maybe I'll just ask for the carnitine test so as to not overwhelm

them. Although my daughter's low tone has definitely improved since

starting the vit E!!! People really do hate change! It will probably

be at least 5 years after the tests have been done and published

before it's routinely done here!

My daughter had the allergy testing at 5 months because she had been

constipated since birth. I had a very low milk supply at 2 months, so

we started supplementing and the constipation went a way for a couple

days as she actually got nourishment, and then came back. We tried

cows milk, soy, and even a home made goats milk formula, and she was

still contipated so I asked for the allergy test. Ended up going for

(I can't remember the name) the one that has the " comfort proteins "

where they're already broken down some and cows milk and she did very

well on that. My mom's allergic to cows milk, and I was when I was a

kid but " outgrew it " (although my mom who is very holistic says that's

not really possible and the symptoms are just repressed). So that is

a concern of mine that she would be allergic to cows milk. I'm just

trying to plead ignorance because I don't want to avoid it myself, and

her mac and cheese!

Crystal

> > > We didn't go down the path of heavy metals etc. As you know that

> is

> > > very contraversial, and I don't feel like getting into that

> one. I

> > > posted a list of tests I think are medically indicated given

> what we

> > > have learned in these children...particularly those with food

> > > allergies/gut issues. But " tests for leaky gut " probably won't

> > > change how you proceed with your child. What you are looking

> for

> > > sounds more like a DAN approach and if you go that route there

> are

> > > some good DAN doctors out there...you just have to do some

> > > homework. I will post some suggested blood tests again - and

> these

> > > can be ordered by your pediatrician as part of a

> > > nutritional/metabolic work-up. If your child has any low tone

> > > component with apraxia - it is medically indicated to do some of

> > > these evalations...particularly in the allergic child. -claudia

> > >

> > >

> >

>

[Guest guest]

This message is for to see and other Mothers to encourage

them to be stubborn to ask questions and demand answers... You were right

about your fears of carnitine levels...My daughter levels were below normal

and we have seen two neurologists, two genetists, an endocrinologist besides

2 pediatricians none ever asked to check these levels...I had decided not to

start on the E till I had her ADEK , Zinc and Carnitine levels

checked after reading this email message by . We are still

waiting on the K and D levels but A & E are normal. We are shocked to see

the low levels and wonder now who will follow up with this turn of events

And I wonder if now I should wait to start the E... I so wanted to start it

to see if it would help her sensory issues ..Her total Carnitine level is 21

and her Free Carnitine is 16. No wonder has the hypotonia.

Roxanne

_____

From:

[mailto: ] On Behalf Of Crystal

Sent: Saturday, September 02, 2006 9:17 PM

Subject: [ ] Re: testings by peditrician Q for

I had hoped/expected the doctor to order some of the tests at least to

humor me if nothing else. I've already started on the Vit E anyway,

so maybe I'll just ask for the carnitine test so as to not overwhelm

them. Although my daughter's low tone has definitely improved since

starting the vit E!!! People really do hate change! It will probably

be at least 5 years after the tests have been done and published

before it's routinely done here!

My daughter had the allergy testing at 5 months because she had been

constipated since birth. I had a very low milk supply at 2 months, so

we started supplementing and the constipation went a way for a couple

days as she actually got nourishment, and then came back. We tried

cows milk, soy, and even a home made goats milk formula, and she was

still contipated so I asked for the allergy test. Ended up going for

(I can't remember the name) the one that has the " comfort proteins "

where they're already broken down some and cows milk and she did very

well on that. My mom's allergic to cows milk, and I was when I was a

kid but " outgrew it " (although my mom who is very holistic says that's

not really possible and the symptoms are just repressed). So that is

a concern of mine that she would be allergic to cows milk. I'm just

trying to plead ignorance because I don't want to avoid it myself, and

her mac and cheese!

Crystal

> > > We didn't go down the path of heavy metals etc. As you know that

> is

> > > very contraversial, and I don't feel like getting into that

> one. I

> > > posted a list of tests I think are medically indicated given

> what we

> > > have learned in these children...particularly those with food

> > > allergies/gut issues. But " tests for leaky gut " probably won't

> > > change how you proceed with your child. What you are looking

> for

> > > sounds more like a DAN approach and if you go that route there

> are

> > > some good DAN doctors out there...you just have to do some

> > > homework. I will post some suggested blood tests again - and

> these

> > > can be ordered by your pediatrician as part of a

> > > nutritional/metabolic work-up. If your child has any low tone

> > > component with apraxia - it is medically indicated to do some of

> > > these evalations...particularly in the allergic child. -claudia

> > >

> > >

> >

>

[Guest guest]

This message is for to see and other Mothers to encourage

them to be stubborn to ask questions and demand answers... You were right

about your fears of carnitine levels...My daughter levels were below normal

and we have seen two neurologists, two genetists, an endocrinologist besides

2 pediatricians none ever asked to check these levels...I had decided not to

start on the E till I had her ADEK , Zinc and Carnitine levels

checked after reading this email message by . We are still

waiting on the K and D levels but A & E are normal. We are shocked to see

the low levels and wonder now who will follow up with this turn of events

And I wonder if now I should wait to start the E... I so wanted to start it

to see if it would help her sensory issues ..Her total Carnitine level is 21

and her Free Carnitine is 16. No wonder has the hypotonia.

Roxanne

_____

From:

[mailto: ] On Behalf Of Crystal

Sent: Saturday, September 02, 2006 9:17 PM

Subject: [ ] Re: testings by peditrician Q for

I had hoped/expected the doctor to order some of the tests at least to

humor me if nothing else. I've already started on the Vit E anyway,

so maybe I'll just ask for the carnitine test so as to not overwhelm

them. Although my daughter's low tone has definitely improved since

starting the vit E!!! People really do hate change! It will probably

be at least 5 years after the tests have been done and published

before it's routinely done here!

My daughter had the allergy testing at 5 months because she had been

constipated since birth. I had a very low milk supply at 2 months, so

we started supplementing and the constipation went a way for a couple

days as she actually got nourishment, and then came back. We tried

cows milk, soy, and even a home made goats milk formula, and she was

still contipated so I asked for the allergy test. Ended up going for

(I can't remember the name) the one that has the " comfort proteins "

where they're already broken down some and cows milk and she did very

well on that. My mom's allergic to cows milk, and I was when I was a

kid but " outgrew it " (although my mom who is very holistic says that's

not really possible and the symptoms are just repressed). So that is

a concern of mine that she would be allergic to cows milk. I'm just

trying to plead ignorance because I don't want to avoid it myself, and

her mac and cheese!

Crystal

> > > We didn't go down the path of heavy metals etc. As you know that

> is

> > > very contraversial, and I don't feel like getting into that

> one. I

> > > posted a list of tests I think are medically indicated given

> what we

> > > have learned in these children...particularly those with food

> > > allergies/gut issues. But " tests for leaky gut " probably won't

> > > change how you proceed with your child. What you are looking

> for

> > > sounds more like a DAN approach and if you go that route there

> are

> > > some good DAN doctors out there...you just have to do some

> > > homework. I will post some suggested blood tests again - and

> these

> > > can be ordered by your pediatrician as part of a

> > > nutritional/metabolic work-up. If your child has any low tone

> > > component with apraxia - it is medically indicated to do some of

> > > these evalations...particularly in the allergic child. -claudia

> > >

> > >

> >

>

[Guest guest]

> > > > We didn't go down the path of heavy metals etc. As you know

that

> > is

> > > > very contraversial, and I don't feel like getting into that

> > one. I

> > > > posted a list of tests I think are medically indicated given

> > what we

> > > > have learned in these children...particularly those with

food

> > > > allergies/gut issues. But " tests for leaky gut " probably

won't

> > > > change how you proceed with your child. What you are looking

> > for

> > > > sounds more like a DAN approach and if you go that route

there

> > are

> > > > some good DAN doctors out there...you just have to do some

> > > > homework. I will post some suggested blood tests again - and

> > these

> > > > can be ordered by your pediatrician as part of a

> > > > nutritional/metabolic work-up. If your child has any low

tone

> > > > component with apraxia - it is medically indicated to do

some of

> > > > these evalations...particularly in the allergic child. -

claudia

> > > >

> > > >

> > >

> >

>

>

>

>

>

>

>

[Guest guest]

> > > > We didn't go down the path of heavy metals etc. As you know

that

> > is

> > > > very contraversial, and I don't feel like getting into that

> > one. I

> > > > posted a list of tests I think are medically indicated given

> > what we

> > > > have learned in these children...particularly those with

food

> > > > allergies/gut issues. But " tests for leaky gut " probably

won't

> > > > change how you proceed with your child. What you are looking

> > for

> > > > sounds more like a DAN approach and if you go that route

there

> > are

> > > > some good DAN doctors out there...you just have to do some

> > > > homework. I will post some suggested blood tests again - and

> > these

> > > > can be ordered by your pediatrician as part of a

> > > > nutritional/metabolic work-up. If your child has any low

tone

> > > > component with apraxia - it is medically indicated to do

some of

> > > > these evalations...particularly in the allergic child. -

claudia

> > > >

> > > >

> > >

> >

>

>

>

>

>

>

>

[Guest guest]

> > > > We didn't go down the path of heavy metals etc. As you know

that

> > is

> > > > very contraversial, and I don't feel like getting into that

> > one. I

> > > > posted a list of tests I think are medically indicated given

> > what we

> > > > have learned in these children...particularly those with

food

> > > > allergies/gut issues. But " tests for leaky gut " probably

won't

> > > > change how you proceed with your child. What you are looking

> > for

> > > > sounds more like a DAN approach and if you go that route

there

> > are

> > > > some good DAN doctors out there...you just have to do some

> > > > homework. I will post some suggested blood tests again - and

> > these

> > > > can be ordered by your pediatrician as part of a

> > > > nutritional/metabolic work-up. If your child has any low

tone

> > > > component with apraxia - it is medically indicated to do

some of

> > > > these evalations...particularly in the allergic child. -

claudia

> > > >

> > > >

> > >

> >

>

>

>

>

>

>

>

[Guest guest]

,

Are there any older family members that had polio way back? Either

your side or husbands?

>

> Even with normal vit E levels, I would give vit E a try. Its safe

at

> the doses we've talked about here, and it may be that our kids need

> higher than the normal dose for the vitamin E to actually get

> transported into the nervous system - where it is critically

> needed. Also good to know that levels were or were not low when

you

> started. This is very interesting. I wonder how many kids out there

> with apraxia are carnitine deficient. Turns out that ALL my

children

> are carnitine deficient, although only one is apraxic...but my

> middle child has issues around his gluten-sensitivity. My " healthy "

> 8 year old daughter has a positivie celiac serology and low

> carnitine too. There is more to this story...and I think we've just

> scratched the surface.

>

> Here's hoping omega 3/carnitine and vit E help your little girl!

>

> -

>

> > This message is for to see and other Mothers to

> encourage

> > them to be stubborn to ask questions and demand answers... You

> were right

> > about your fears of carnitine levels...My daughter levels were

> below normal

> > and we have seen two neurologists, two genetists, an

> endocrinologist besides

> > 2 pediatricians none ever asked to check these levels...I had

> decided not to

> > start on the E till I had her ADEK , Zinc and Carnitine

> levels

> > checked after reading this email message by . We

> are still

> > waiting on the K and D levels but A & E are normal. We are

shocked

> to see

> > the low levels and wonder now who will follow up with this turn

of

> events

> > And I wonder if now I should wait to start the E... I so wanted

to

> start it

> > to see if it would help her sensory issues ..Her total Carnitine

> level is 21

> > and her Free Carnitine is 16. No wonder has the hypotonia.

> > Roxanne

> >

> > _____

[Guest guest]

> > > > We didn't go down the path of heavy metals etc. As you know

that

> > is

> > > > very contraversial, and I don't feel like getting into that

> > one. I

> > > > posted a list of tests I think are medically indicated given

> > what we

> > > > have learned in these children...particularly those with

food

> > > > allergies/gut issues. But " tests for leaky gut " probably

won't

> > > > change how you proceed with your child. What you are looking

> > for

> > > > sounds more like a DAN approach and if you go that route

there

> > are

> > > > some good DAN doctors out there...you just have to do some

> > > > homework. I will post some suggested blood tests again - and

> > these

> > > > can be ordered by your pediatrician as part of a

> > > > nutritional/metabolic work-up. If your child has any low

tone

> > > > component with apraxia - it is medically indicated to do

some of

> > > > these evalations...particularly in the allergic child. -

claudia

> > > >

> > > >

> > >

> >

>

>

>

>

>

>

>

[Guest guest]

> > > > We didn't go down the path of heavy metals etc. As you know

that

> > is

> > > > very contraversial, and I don't feel like getting into that

> > one. I

> > > > posted a list of tests I think are medically indicated given

> > what we

> > > > have learned in these children...particularly those with

food

> > > > allergies/gut issues. But " tests for leaky gut " probably

won't

> > > > change how you proceed with your child. What you are looking

> > for

> > > > sounds more like a DAN approach and if you go that route

there

> > are

> > > > some good DAN doctors out there...you just have to do some

> > > > homework. I will post some suggested blood tests again - and

> > these

> > > > can be ordered by your pediatrician as part of a

> > > > nutritional/metabolic work-up. If your child has any low

tone

> > > > component with apraxia - it is medically indicated to do

some of

> > > > these evalations...particularly in the allergic child. -

claudia

> > > >

> > > >

> > >

> >

>

>

>

>

>

>

>

[Guest guest]

> > > > We didn't go down the path of heavy metals etc. As you know

that

> > is

> > > > very contraversial, and I don't feel like getting into that

> > one. I

> > > > posted a list of tests I think are medically indicated given

> > what we

> > > > have learned in these children...particularly those with

food

> > > > allergies/gut issues. But " tests for leaky gut " probably

won't

> > > > change how you proceed with your child. What you are looking

> > for

> > > > sounds more like a DAN approach and if you go that route

there

> > are

> > > > some good DAN doctors out there...you just have to do some

> > > > homework. I will post some suggested blood tests again - and

> > these

> > > > can be ordered by your pediatrician as part of a

> > > > nutritional/metabolic work-up. If your child has any low

tone

> > > > component with apraxia - it is medically indicated to do

some of

> > > > these evalations...particularly in the allergic child. -

claudia

> > > >

> > > >

> > >

> >

>

>

>

>

>

>

>

[Guest guest]

,

Are there any older family members that had polio way back? Either

your side or husbands?

>

> Even with normal vit E levels, I would give vit E a try. Its safe

at

> the doses we've talked about here, and it may be that our kids need

> higher than the normal dose for the vitamin E to actually get

> transported into the nervous system - where it is critically

> needed. Also good to know that levels were or were not low when

you

> started. This is very interesting. I wonder how many kids out there

> with apraxia are carnitine deficient. Turns out that ALL my

children

> are carnitine deficient, although only one is apraxic...but my

> middle child has issues around his gluten-sensitivity. My " healthy "

> 8 year old daughter has a positivie celiac serology and low

> carnitine too. There is more to this story...and I think we've just

> scratched the surface.

>

> Here's hoping omega 3/carnitine and vit E help your little girl!

>

> -

>

> > This message is for to see and other Mothers to

> encourage

> > them to be stubborn to ask questions and demand answers... You

> were right

> > about your fears of carnitine levels...My daughter levels were

> below normal

> > and we have seen two neurologists, two genetists, an

> endocrinologist besides

> > 2 pediatricians none ever asked to check these levels...I had

> decided not to

> > start on the E till I had her ADEK , Zinc and Carnitine

> levels

> > checked after reading this email message by . We

> are still

> > waiting on the K and D levels but A & E are normal. We are

shocked

> to see

> > the low levels and wonder now who will follow up with this turn

of

> events

> > And I wonder if now I should wait to start the E... I so wanted

to

> start it

> > to see if it would help her sensory issues ..Her total Carnitine

> level is 21

> > and her Free Carnitine is 16. No wonder has the hypotonia.

> > Roxanne

> >

> > _____

[Guest guest]

Well, I finally took Ben to a non-emergency pediatrician's visit with 's

abstracts and

research info in hand. The pediatrician was willing to measure his L-carnitine,

total and free,

and vitamins A,D,E, and K--but Benny is one strong kid. Two nurses tried to

hold him to get

the blood drawn and they managed to draw two partial tubes and bust two veins,

in three

tries. And he had to be taken to Toys R Us afterwards to buy an indoor tent to

hide in. And

my son and daughter-in-law were annoyed with me for allowing him to be

traumatized.

Here's the worse part: I am almost positive that the lab would have done at

least SOME of

those tests with the amount of blood they DID get, but no, they wouldn't send it

in because

they said the lab would send it back. So she gave me a prescription to have the

bloodwork

drawn AGAIN at a lab somewhere.

Well he has an appt. on Oct. 6 with the child psych dept. at a Regional Medical

Center, and

the lab there was able to draw blood before, so I am going to see if it can be

done again

there. NO WAY am I going to take him to a local Labcorps or Quest lab and see if

they can do

it.

Frustrated,

Kathy E.

[Guest guest]

> >

> > Even with normal vit E levels, I would give vit E a try. Its safe

> at

> > the doses we've talked about here, and it may be that our kids

need

> > higher than the normal dose for the vitamin E to actually get

> > transported into the nervous system - where it is critically

> > needed. Also good to know that levels were or were not low when

> you

> > started. This is very interesting. I wonder how many kids out

there

> > with apraxia are carnitine deficient. Turns out that ALL my

> children

> > are carnitine deficient, although only one is apraxic...but my

> > middle child has issues around his gluten-sensitivity.

My " healthy "

> > 8 year old daughter has a positivie celiac serology and low

> > carnitine too. There is more to this story...and I think we've

just

> > scratched the surface.

> >

> > Here's hoping omega 3/carnitine and vit E help your little girl!

> >

> > -

> >

> > > This message is for to see and other Mothers to

> > encourage

> > > them to be stubborn to ask questions and demand answers... You

> > were right

> > > about your fears of carnitine levels...My daughter levels were

> > below normal

> > > and we have seen two neurologists, two genetists, an

> > endocrinologist besides

> > > 2 pediatricians none ever asked to check these levels...I had

> > decided not to

> > > start on the E till I had her ADEK , Zinc and Carnitine

> > levels

> > > checked after reading this email message by . We

> > are still

> > > waiting on the K and D levels but A & E are normal. We are

> shocked

> > to see

> > > the low levels and wonder now who will follow up with this turn

> of

> > events

> > > And I wonder if now I should wait to start the E... I so wanted

> to

> > start it

> > > to see if it would help her sensory issues ..Her total

Carnitine

> > level is 21

> > > and her Free Carnitine is 16. No wonder has the

hypotonia.

> > > Roxanne

> > >

> > > _____

>

[Guest guest]

>

> Well, I finally took Ben to a non-emergency pediatrician's visit

with 's abstracts and

> research info in hand. The pediatrician was willing to measure his

L-carnitine, total and free,

> and vitamins A,D,E, and K--but Benny is one strong kid. Two nurses

tried to hold him to get

> the blood drawn and they managed to draw two partial tubes and bust

two veins, in three

> tries. And he had to be taken to Toys R Us afterwards to buy an

indoor tent to hide in. And

> my son and daughter-in-law were annoyed with me for allowing him to

be traumatized.

>

> Here's the worse part: I am almost positive that the lab would have

done at least SOME of

> those tests with the amount of blood they DID get, but no, they

wouldn't send it in because

> they said the lab would send it back. So she gave me a

prescription to have the bloodwork

> drawn AGAIN at a lab somewhere.

>

> Well he has an appt. on Oct. 6 with the child psych dept. at a

Regional Medical Center, and

> the lab there was able to draw blood before, so I am going to see

if it can be done again

> there. NO WAY am I going to take him to a local Labcorps or Quest

lab and see if they can do

> it.

>

> Frustrated,

> Kathy E.

>

Kathy,

My oldest has to have monthly blood draws which were very difficult

when he was younger. I found that it was a waste of time to try

anywhere other than the hospital outpatient lab. They had enough

people to immobilize him so he didn't get more agitated by struggling

and they had staff with the experience to find the vein on the first

try.

Good luck,

Karyn

[Guest guest]

Well we had our other children(3 others, but all girls) tested and

they were fine,one was lowish, not as low as my son, and she is the

CARBON copy of him in every way, anyway while we were waiting for

their results, I came across a research study about post polio

syndrome, and it stated that the decendants of polio victims have

lower carnitine levels than controls, down to the grandchildren, so

since all of your kids tested lowish, the study popped into my

mind. Here it is

http://www.upnaway.com/~poliowa/Serum%20Carnitine%20Levels%202002.html

http://www.upnaway.com/~poliowa/index.html

> > >

> > > Even with normal vit E levels, I would give vit E a try. Its

safe

> > at

> > > the doses we've talked about here, and it may be that our kids

> need

> > > higher than the normal dose for the vitamin E to actually get

> > > transported into the nervous system - where it is critically

> > > needed. Also good to know that levels were or were not low when

> > you

> > > started. This is very interesting. I wonder how many kids out

> there

> > > with apraxia are carnitine deficient. Turns out that ALL my

> > children

> > > are carnitine deficient, although only one is apraxic...but my

> > > middle child has issues around his gluten-sensitivity.

> My " healthy "

> > > 8 year old daughter has a positivie celiac serology and low

> > > carnitine too. There is more to this story...and I think we've

> just

> > > scratched the surface.

> > >

> > > Here's hoping omega 3/carnitine and vit E help your little girl!

> > >

> > > -

> > >

> > > > This message is for to see and other Mothers to

> > > encourage

> > > > them to be stubborn to ask questions and demand answers... You

> > > were right

> > > > about your fears of carnitine levels...My daughter levels were

> > > below normal

> > > > and we have seen two neurologists, two genetists, an

> > > endocrinologist besides

> > > > 2 pediatricians none ever asked to check these levels...I had

> > > decided not to

> > > > start on the E till I had her ADEK , Zinc and

Carnitine

> > > levels

> > > > checked after reading this email message by .

We

> > > are still

> > > > waiting on the K and D levels but A & E are normal. We are

> > shocked

> > > to see

> > > > the low levels and wonder now who will follow up with this

turn

> > of

> > > events

> > > > And I wonder if now I should wait to start the E... I so

wanted

> > to

> > > start it

> > > > to see if it would help her sensory issues ..Her total

> Carnitine

> > > level is 21

> > > > and her Free Carnitine is 16. No wonder has the

> hypotonia.

> > > > Roxanne

> > > >

> > > > _____

> >

>

[Guest guest]

My maternal grandmother had polio as a child. I'm not sure about my paternal

side of the family. Why do you ask???

" claudia.morris " <claudia.morris@...> wrote:

> >

> > Even with normal vit E levels, I would give vit E a try. Its safe

> at

> > the doses we've talked about here, and it may be that our kids

need

> > higher than the normal dose for the vitamin E to actually get

> > transported into the nervous system - where it is critically

> > needed. Also good to know that levels were or were not low when

> you

> > started. This is very interesting. I wonder how many kids out

there

> > with apraxia are carnitine deficient. Turns out that ALL my

> children

> > are carnitine deficient, although only one is apraxic...but my

> > middle child has issues around his gluten-sensitivity.

My " healthy "

> > 8 year old daughter has a positivie celiac serology and low

> > carnitine too. There is more to this story...and I think we've

just

> > scratched the surface.

> >

> > Here's hoping omega 3/carnitine and vit E help your little girl!

> >

> > -

> >

> > > This message is for to see and other Mothers to

> > encourage

> > > them to be stubborn to ask questions and demand answers... You

> > were right

> > > about your fears of carnitine levels...My daughter levels were

> > below normal

> > > and we have seen two neurologists, two genetists, an

> > endocrinologist besides

> > > 2 pediatricians none ever asked to check these levels...I had

> > decided not to

> > > start on the E till I had her ADEK , Zinc and Carnitine

> > levels

> > > checked after reading this email message by . We

> > are still

> > > waiting on the K and D levels but A & E are normal. We are

> shocked

> > to see

> > > the low levels and wonder now who will follow up with this turn

> of

> > events

> > > And I wonder if now I should wait to start the E... I so wanted

> to

> > start it

> > > to see if it would help her sensory issues ..Her total

Carnitine

> > level is 21

> > > and her Free Carnitine is 16. No wonder has the

hypotonia.

> > > Roxanne

> > >

> > > _____

>

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

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