x post - advice.. please

[Guest guest]

Dear Listmates,

Today I brought my 16 month old dd to her pediatric neurologist at Weil Cornell

in NYC. MY dd had gone to see the doctor at 5 months after a vaccination

reaction where she underwent 3 24 hour video eegs. This appt was a follow-up as

well as an appt to get to the bottom of my dd's " twitches " at night. I brought

in a video tape with every intention that my dd would undergo another 24 hour

video eeg. Well, the doctor, who is really wonderful, looked at the tape and

said it was w/o a doubt benign myloclonic jerks of infancy and that she would

outgrow them. The same ones she saw after the vaccination. The doctor also knows

my concern about the possibility of my dd being on the spectrum b/c of her

reaction to the dtap, her regression for 3 weeks following the vaccination, her

low cysteine and french test results, the mthfr mutation, and the fact that her

speech (expressive) seems delayed. The doctor said that my dd is anything but

autistic, that she shows absoultely no signs and that the only thing we should

be thinking about is perhaps getting her private speech therapy. In addition,

she said that the cysteine was only marginally low, that 30% of the population

has the heterozygous mutation, and she has no idea what type of baseline to

compare with the french test and yeast results for the normal population (she

also did not understand why the french lab was the only reliable measure of

toxins). She went on to say that she would advise against chelation as she sees

nothing wrong with my dd and that even performing a challenge test won't really

tell us anything as again, what is the normal population....? blah blah (we were

going to do chelation based on the above as well as the fact that she did at one

point have lead in her blood from a playpen, it has since gone to level 1). She

did say that we should continue with her supplements - esp the cod liver oil,

multi, vit d, zinc (b/c she was low), nystatin (b/c she has yeast), probiotics,

but that to really think about whether we want to continue with mb12, folinic,

glutithione etc as we don't really even know if she needs them and why give her

something that she does not need..?). She went on to say that if we keep testing

for things we will find things but that our dd is perfectly healthy, as far as

she sees.

I know she is not a DAN doctor and sees things differently but part of me really

feels that she may be right. She also said that when she sees ASD she sees it by

now (16 months) and that those moms who say they see it later is either b/c of a

vacc reaction or b/c the mom did not see the signs but they were there.

My question is - what would you do? should we continue down the DAN path

including supplements and perhaps even chelation or should we scale back and

play a wait and see? We are not going to vaccinate ever again.

Thank you for your insight.

[Guest guest]

If you have the funds, I would try a gentle chelation, like Dr. Tim

O'Shea's. It can't hurt, and will likely help. You might also see if

he'll do a phone consult with you regarding the matter. He is very

insightful and cares deeply for children. He could likely point you

in the right direction for protocol... he's not DAN, but he's also

less expensive and his therapies have gotten good reviews.

http://www.thedoctorwithin.com/

On Tue, Jun 30, 2009 at 6:41 PM, <ccomunal@...> wrote:

> My question is - what would you do? should we continue down the DAN path

> including supplements and perhaps even chelation or should we scale back and

> play a wait and see? We are not going to vaccinate ever again.

> Thank you for your insight.

[Guest guest]

Are the night twitches the only reason for concern that you're going to the ped.

neurologist? Have they improved, stayed the same, gotten worse?

Why at 16 months do you think her speech is delayed? I think that's pretty young

to be talking about speech therapy, at least for the doc to say it.

I have to say I don't agree that by 16 months the doc would know if your child

had ASD or that moms miss the signs. Some things take time to develop.

If her lead level has gone down, would you still need to do chelation? Something

you're doing seems to be bringing it down. What's a french test?

Winnie

x post - advice.. please

chelatingkids2

Cc: Vaccinations

> Dear Listmates,

> Today I brought my 16 month old dd to her pediatric neurologist

> at Weil Cornell in NYC. MY dd had gone to see the doctor at 5

> months after a vaccination reaction where she underwent 3 24

> hour video eegs. This appt was a follow-up as well as an appt to

> get to the bottom of my dd's " twitches " at night. I brought in a

> video tape with every intention that my dd would undergo another

> 24 hour video eeg. Well, the doctor, who is really wonderful,

> looked at the tape and said it was w/o a doubt benign myloclonic

> jerks of infancy and that she would outgrow them. The same ones

> she saw after the vaccination. The doctor also knows my concern

> about the possibility of my dd being on the spectrum b/c of her

> reaction to the dtap, her regression for 3 weeks following the

> vaccination, her low cysteine and french test results, the mthfr

> mutation, and the fact that her speech (expressive) seems

> delayed. The doctor said that my dd is anything but autistic,

> that she shows absoultely no signs and that the

> only thing we should be thinking about is perhaps getting her

> private speech therapy. In addition, she said that the cysteine

> was only marginally low, that 30% of the population has the

> heterozygous mutation, and she has no idea what type of baseline

> to compare with the french test and yeast results for the normal

> population (she also did not understand why the french lab was

> the only reliable measure of toxins). She went on to say that

> she would advise against chelation as she sees nothing wrong

> with my dd and that even performing a challenge test won't

> really tell us anything as again, what is the normal

> population....? blah blah (we were going to do chelation based

> on the above as well as the fact that she did at one point have

> lead in her blood from a playpen, it has since gone to level 1).

> She did say that we should continue with her supplements - esp

> the cod liver oil, multi, vit d, zinc (b/c she was low),

> nystatin (b/c she has yeast), probiotics, but that to really think

> about whether we want to continue with mb12, folinic,

> glutithione etc as we don't really even know if she needs them

> and why give her something that she does not need..?). She went

> on to say that if we keep testing for things we will find things

> but that our dd is perfectly healthy, as far as she sees.

> I know she is not a DAN doctor and sees things differently but

> part of me really feels that she may be right. She also said

> that when she sees ASD she sees it by now (16 months) and that

> those moms who say they see it later is either b/c of a vacc

> reaction or b/c the mom did not see the signs but they were

> there.

> My question is - what would you do? should we continue down the

> DAN path including supplements and perhaps even chelation or

> should we scale back and play a wait and see? We are not going

> to vaccinate ever again.

> Thank you for your insight.

>

>

>

[Guest guest]

Christie, I would try to get at the root of what's causing her seizures. I

googled benign myloclonic jerks and was led to " Epilepsy " . They are in fact

seizures. Going the DAN route, you would be able to raise the threshold so that

the seizures no longer occur. Did you tell the DAN doctor that she is having

seizures?

I remember when I brought Austin for his EEG and the technician said, " If he's

having seizures only at night, this could be why his speech is lagging. It

would essentially prevent his speech from progressing any further. " She told me

that she's seen it with numerous children.

What I have learned is that simply through genetics, our children are extremely

sensitive to chemicals....they cannot detox properly and they cannot handle the

garbage in vaccines. That is why your daughter and my son reacted to their

vaccines the way that they did. Definitely talk to the DAN doctor about the

seizures and see what he says. Keep us posted - okay??

>

> Dear Listmates,

> Today I brought my 16 month old dd to her pediatric neurologist at Weil

Cornell in NYC. MY dd had gone to see the doctor at 5 months after a vaccination

reaction where she underwent 3 24 hour video eegs. This appt was a follow-up as

well as an appt to get to the bottom of my dd's " twitches " at night. I brought

in a video tape with every intention that my dd would undergo another 24 hour

video eeg. Well, the doctor, who is really wonderful, looked at the tape and

said it was w/o a doubt benign myloclonic jerks of infancy and that she would

outgrow them. The same ones she saw after the vaccination. The doctor also knows

my concern about the possibility of my dd being on the spectrum b/c of her

reaction to the dtap, her regression for 3 weeks following the vaccination, her

low cysteine and french test results, the mthfr mutation, and the fact that her

speech (expressive) seems delayed. The doctor said that my dd is anything but

autistic, that she shows absoultely no signs and that the only thing we should

be thinking about is perhaps getting her private speech therapy. In addition,

she said that the cysteine was only marginally low, that 30% of the population

has the heterozygous mutation, and she has no idea what type of baseline to

compare with the french test and yeast results for the normal population (she

also did not understand why the french lab was the only reliable measure of

toxins). She went on to say that she would advise against chelation as she sees

nothing wrong with my dd and that even performing a challenge test won't really

tell us anything as again, what is the normal population....? blah blah (we were

going to do chelation based on the above as well as the fact that she did at one

point have lead in her blood from a playpen, it has since gone to level 1). She

did say that we should continue with her supplements - esp the cod liver oil,

multi, vit d, zinc (b/c she was low), nystatin (b/c she has yeast), probiotics,

but that to really think about whether we want to continue with mb12, folinic,

glutithione etc as we don't really even know if she needs them and why give her

something that she does not need..?). She went on to say that if we keep testing

for things we will find things but that our dd is perfectly healthy, as far as

she sees.

> I know she is not a DAN doctor and sees things differently but part of me

really feels that she may be right. She also said that when she sees ASD she

sees it by now (16 months) and that those moms who say they see it later is

either b/c of a vacc reaction or b/c the mom did not see the signs but they were

there.

> My question is - what would you do? should we continue down the DAN path

including supplements and perhaps even chelation or should we scale back and

play a wait and see? We are not going to vaccinate ever again.

> Thank you for your insight.

>

>

>

[Guest guest]

Also, toxins and/or metabolic disorders can cause seizures. Don't let the

doctor talk you into being passive about the situation. Every parent who does

the " wait and see " approach regrets it later. If it is something wrong

metabolically, you could cause more harm by not addressing it as soon as

possible.

> >

> > Dear Listmates,

> > Today I brought my 16 month old dd to her pediatric neurologist at Weil

Cornell in NYC. MY dd had gone to see the doctor at 5 months after a vaccination

reaction where she underwent 3 24 hour video eegs. This appt was a follow-up as

well as an appt to get to the bottom of my dd's " twitches " at night. I brought

in a video tape with every intention that my dd would undergo another 24 hour

video eeg. Well, the doctor, who is really wonderful, looked at the tape and

said it was w/o a doubt benign myloclonic jerks of infancy and that she would

outgrow them. The same ones she saw after the vaccination. The doctor also knows

my concern about the possibility of my dd being on the spectrum b/c of her

reaction to the dtap, her regression for 3 weeks following the vaccination, her

low cysteine and french test results, the mthfr mutation, and the fact that her

speech (expressive) seems delayed. The doctor said that my dd is anything but

autistic, that she shows absoultely no signs and that the only thing we should

be thinking about is perhaps getting her private speech therapy. In addition,

she said that the cysteine was only marginally low, that 30% of the population

has the heterozygous mutation, and she has no idea what type of baseline to

compare with the french test and yeast results for the normal population (she

also did not understand why the french lab was the only reliable measure of

toxins). She went on to say that she would advise against chelation as she sees

nothing wrong with my dd and that even performing a challenge test won't really

tell us anything as again, what is the normal population....? blah blah (we were

going to do chelation based on the above as well as the fact that she did at one

point have lead in her blood from a playpen, it has since gone to level 1). She

did say that we should continue with her supplements - esp the cod liver oil,

multi, vit d, zinc (b/c she was low), nystatin (b/c she has yeast), probiotics,

but that to really think about whether we want to continue with mb12, folinic,

glutithione etc as we don't really even know if she needs them and why give her

something that she does not need..?). She went on to say that if we keep testing

for things we will find things but that our dd is perfectly healthy, as far as

she sees.

> > I know she is not a DAN doctor and sees things differently but part of me

really feels that she may be right. She also said that when she sees ASD she

sees it by now (16 months) and that those moms who say they see it later is

either b/c of a vacc reaction or b/c the mom did not see the signs but they were

there.

> > My question is - what would you do? should we continue down the DAN path

including supplements and perhaps even chelation or should we scale back and

play a wait and see? We are not going to vaccinate ever again.

> > Thank you for your insight.

> >

> >

> >

[Guest guest]

sorry, i meant to say Benign Neonatal Sleep Myoclonus. That's interesting about

the language thing. What I might do before having her undergo the 24 hour video

is to wait to see if her sleep develops in the next few months. if it does not

then i will bring her in.

Re: x post - advice.. please

Vaccinations

> Christie, I would try to get at the root of what's causing her

> seizures. I googled benign myloclonic jerks and was led to

> " Epilepsy " . They are in fact seizures. Going the DAN route,

> you would be able to raise the threshold so that the seizures no

> longer occur. Did you tell the DAN doctor that she is having

> seizures?

>

> I remember when I brought Austin for his EEG and the technician

> said, " If he's having seizures only at night, this could be why

> his speech is lagging. It would essentially prevent his speech

> from progressing any further. " She told me that she's seen it

> with numerous children.

>

> What I have learned is that simply through genetics, our

> children are extremely sensitive to chemicals....they cannot

> detox properly and they cannot handle the garbage in vaccines.

> That is why your daughter and my son reacted to their vaccines

> the way that they did. Definitely talk to the DAN doctor about

> the seizures and see what he says. Keep us posted - okay??

>

>

> >

> > Dear Listmates,

> > Today I brought my 16 month old dd to her pediatric

> neurologist at Weil Cornell in NYC. MY dd had gone to see the

> doctor at 5 months after a vaccination reaction where she

> underwent 3 24 hour video eegs. This appt was a follow-up as

> well as an appt to get to the bottom of my dd's " twitches " at

> night. I brought in a video tape with every intention that my dd

> would undergo another 24 hour video eeg. Well, the doctor, who

> is really wonderful, looked at the tape and said it was w/o a

> doubt benign myloclonic jerks of infancy and that she would

> outgrow them. The same ones she saw after the vaccination. The

> doctor also knows my concern about the possibility of my dd

> being on the spectrum b/c of her reaction to the dtap, her

> regression for 3 weeks following the vaccination, her low

> cysteine and french test results, the mthfr mutation, and the

> fact that her speech (expressive) seems delayed. The doctor said

> that my dd is anything but autistic, that she shows absoultely

> no signs and that the only thing we should be thinking about is

> perhaps getting her private speech therapy. In addition, she

> said that the cysteine was only marginally low, that 30% of the

> population has the heterozygous mutation, and she has no idea

> what type of baseline to compare with the french test and yeast

> results for the normal population (she also did not understand

> why the french lab was the only reliable measure of toxins). She

> went on to say that she would advise against chelation as she

> sees nothing wrong with my dd and that even performing a

> challenge test won't really tell us anything as again, what is

> the normal population....? blah blah (we were going to do

> chelation based on the above as well as the fact that she did at

> one point have lead in her blood from a playpen, it has since

> gone to level 1). She did say that we should continue with her

> supplements - esp the cod liver oil, multi, vit d, zinc (b/c she

> was low), nystatin (b/c she has yeast), probiotics, but that to

> really think about whether we want to continue with mb12,

> folinic, glutithione etc as we don't really even know if she

> needs them and why give her something that she does not

> need..?). She went on to say that if we keep testing for things

> we will find things but that our dd is perfectly healthy, as far

> as she sees.

> > I know she is not a DAN doctor and sees things differently but

> part of me really feels that she may be right. She also said

> that when she sees ASD she sees it by now (16 months) and that

> those moms who say they see it later is either b/c of a vacc

> reaction or b/c the mom did not see the signs but they were

> there.

> > My question is - what would you do? should we continue down

> the DAN path including supplements and perhaps even chelation or

> should we scale back and play a wait and see? We are not going

> to vaccinate ever again.

> > Thank you for your insight.

> >

> >

> >