Re: Calling it quits...patience

[Guest guest]

I am sorry for your pain & understand your sense of urgency. We all feel it.

I get the feeling that perhaps you were never clear about the disease process

and what specific meds do to treat.

We are not just filling up our kids with meds blindly. Meds DO fade out. Some

are kids are slower starters than others, but not all.

My son is in year 2 and we have a different child. His baseline scores on the

ATEC test

(scores range from 0-180, 0 =typical 180= is severe infantile) from ARI

institute ( was a 73 before Dr. G and necessary meds and he is now a 22! He is

in gen ed, and went from nonverbal and screaming to a child who uses 4 word

sentences, requests, and happily shares his interests with us.

Would this have happened if I hopped around interventions?

I hope whatever you do, you have no regrets.

I wish you the best!

Robin Driver

Sent via MOTOBLURâ„¢ on Verizon Wireless

Re: Re: Calling it quits...

[Guest guest]

Robin... I'm so glad to hear about your son improvements. You are right though,

when I signed up for the nids protocal I wasn't aware that it was a long term

xonminitmb. My son is On the protocal for 6 months now. My husband and I are

gonna give it until the end if this year to see some positive gains. Well see

how it goes. Thanks!

On Jan 25, 2011, at 6:59 PM, " Driver " <robindriver@...> wrote:

>

> I am sorry for your pain & understand your sense of urgency. We all feel it.

>

> I get the feeling that perhaps you were never clear about the disease process

and what specific meds do to treat.

> We are not just filling up our kids with meds blindly. Meds DO fade out. Some

are kids are slower starters than others, but not all.

>

> My son is in year 2 and we have a different child. His baseline scores on the

ATEC test

> (scores range from 0-180, 0 =typical 180= is severe infantile) from ARI

institute ( was a 73 before Dr. G and necessary meds and he is now a 22! He is

in gen ed, and went from nonverbal and screaming to a child who uses 4 word

sentences, requests, and happily shares his interests with us.

>

> Would this have happened if I hopped around interventions?

>

> I hope whatever you do, you have no regrets.

>

> I wish you the best!

>

> Robin Driver

>

> Sent via MOTOBLURâ„¢ on Verizon Wireless

>

> Re: Re: Calling it quits...

>

>

[Guest guest]

We have been with Dr G for 9 years! My son was never severe and so

sometimes I feel like he is not improving much but when I try and remove

the meds, then I see the decline. I know he is much healthier then he

was and that means a lot to me. I hope it will give him a much happier

life. He will be 14 this weekend. He is amazing on the guitar and has a

great voice. He is rather lazy from having an aide all these years in

school and from having CFS symptoms. We home school now so I am trying

to undo the aide mentality and making him do things on his own. He does

still go into his own world a lot and doesn't make much sense when he

talks about things in his own little world, his brother and I can figure

it out because we have seen the same movie or whatever it is. I try to

tell him he has to explain to people what he is talking about, you can't

just do the punch line. I think he goes into his own little world

because he likes too.He does tell me he hears voices sometimes and I

think this might be from a virus. He does not have a lot of energy,

allergies are our biggest obstacle. He occasionally gets restless legs.

He shakes, we had an occupational therapist work with us and she said it

is very hard to overcome the fine motor difficulties with the tremors. I

have generalized anxiety disorder and I think it is because I locked up

all the muscles in my neck and back to stop me from shaking and to stop

feeling pain in my ears, throat and a very upset stomach. So I'm

thinking my son has the same thing but I don't let him tighten up his

muscles so much. I don't want him to get locked this way. It is taking

me years to get this undone and then I shake sometimes too and start to

feel sick. Sorry for the long rant but sometimes i feel like we might

have something different going on. Anyone else have the shaking, tremors

thing? Would love some feedback. I so enjoy reading your posts too,

! Thanks so much, Jerri

>

> Robin... I'm so glad to hear about your son improvements. You are

> right though, when I signed up for the nids protocal I wasn't aware

> that it was a long term xonminitmb. My son is On the protocal for 6

> months now. My husband and I are gonna give it until the end if this

> year to see some positive gains. Well see how it goes. Thanks!

>

> On Jan 25, 2011, at 6:59 PM, " Driver " <robindriver@...

> <mailto:robindriver%40rocketmail.com>> wrote:

>

> >

> > I am sorry for your pain & understand your sense of urgency. We all

> feel it.

> >

> > I get the feeling that perhaps you were never clear about the

> disease process and what specific meds do to treat.

> > We are not just filling up our kids with meds blindly. Meds DO fade

> out. Some are kids are slower starters than others, but not all.

> >

> > My son is in year 2 and we have a different child. His baseline

> scores on the ATEC test

> > (scores range from 0-180, 0 =typical 180= is severe infantile) from

> ARI institute ( was a 73 before Dr. G and necessary meds and he is now

> a 22! He is in gen ed, and went from nonverbal and screaming to a

> child who uses 4 word sentences, requests, and happily shares his

> interests with us.

> >

> > Would this have happened if I hopped around interventions?

> >

> > I hope whatever you do, you have no regrets.

> >

> > I wish you the best!

> >

> > Robin Driver

> >

> > Sent via MOTOBLURâ„¢ on Verizon Wireless

> >

> > Re: Re: Calling it quits...

> >

> >

[Guest guest]

Do you guys have Lyme disease? Tammy F.

>

> We have been with Dr G for 9 years! My son was never severe and so

> sometimes I feel like he is not improving much but when I try and remove

> the meds, then I see the decline. I know he is much healthier then he

> was and that means a lot to me. I hope it will give him a much happier

> life. He will be 14 this weekend. He is amazing on the guitar and has a

> great voice. He is rather lazy from having an aide all these years in

> school and from having CFS symptoms. We home school now so I am trying

> to undo the aide mentality and making him do things on his own. He does

> still go into his own world a lot and doesn't make much sense when he

> talks about things in his own little world, his brother and I can figure

> it out because we have seen the same movie or whatever it is. I try to

> tell him he has to explain to people what he is talking about, you can't

> just do the punch line. I think he goes into his own little world

> because he likes too.He does tell me he hears voices sometimes and I

> think this might be from a virus. He does not have a lot of energy,

> allergies are our biggest obstacle. He occasionally gets restless legs.

> He shakes, we had an occupational therapist work with us and she said it

> is very hard to overcome the fine motor difficulties with the tremors. I

> have generalized anxiety disorder and I think it is because I locked up

> all the muscles in my neck and back to stop me from shaking and to stop

> feeling pain in my ears, throat and a very upset stomach. So I'm

> thinking my son has the same thing but I don't let him tighten up his

> muscles so much. I don't want him to get locked this way. It is taking

> me years to get this undone and then I shake sometimes too and start to

> feel sick. Sorry for the long rant but sometimes i feel like we might

> have something different going on. Anyone else have the shaking, tremors

> thing? Would love some feedback. I so enjoy reading your posts too,

> ! Thanks so much, Jerri

> >

> > Robin... I'm so glad to hear about your son improvements. You are

> > right though, when I signed up for the nids protocal I wasn't aware

> > that it was a long term xonminitmb. My son is On the protocal for 6

> > months now. My husband and I are gonna give it until the end if this

> > year to see some positive gains. Well see how it goes. Thanks!

> >

> > On Jan 25, 2011, at 6:59 PM, " Driver "

> <robindriver@... <mailto:robindriver%40rocketmail.com>

> > <mailto:robindriver%40rocketmail.com>> wrote:

> >

> > >

> > > I am sorry for your pain & understand your sense of urgency. We all

> > feel it.

> > >

> > > I get the feeling that perhaps you were never clear about the

> > disease process and what specific meds do to treat.

> > > We are not just filling up our kids with meds blindly. Meds DO fade

> > out. Some are kids are slower starters than others, but not all.

> > >

> > > My son is in year 2 and we have a different child. His baseline

> > scores on the ATEC test

> > > (scores range from 0-180, 0 =typical 180= is severe infantile) from

> > ARI institute ( was a 73 before Dr. G and necessary meds and he is now

> > a 22! He is in gen ed, and went from nonverbal and screaming to a

> > child who uses 4 word sentences, requests, and happily shares his

> > interests with us.

> > >

> > > Would this have happened if I hopped around interventions?

> > >

> > > I hope whatever you do, you have no regrets.

> > >

> > > I wish you the best!

> > >

> > > Robin Driver

> > >

> > > Sent via MOTOBLURâ„¢ on Verizon Wireless

> > >

> > > Re: Re: Calling it quits...

> > >

> > >

[Guest guest]

Hi, Jeri.

Just curious....have you been tested for strep titers? I've had an anxiety

disorder since I hit my teens. I was always sick with strep. I've been on

Ery-Tab for two years now and my anxiety has all but disappeared. As soon as my

strep titers increase, it comes back again. I can often tell before the labs get

back. You may want to have your son tested. As far as tremors, I do get them

occasionally, but at night, I jerk constantly. Sometimes it's just my legs and

other times it's my whole body. I'm on the protocol and have seen some

improvement in this.

HTH,

Robyn

>

> >

> > I am sorry for your pain & understand your sense of urgency. We all

> feel it.

> >

> > I get the feeling that perhaps you were never clear about the

> disease process and what specific meds do to treat.

> > We are not just filling up our kids with meds blindly. Meds DO fade

> out. Some are kids are slower starters than others, but not all.

> >

> > My son is in year 2 and we have a different child. His baseline

> scores on the ATEC test

> > (scores range from 0-180, 0 =typical 180= is severe infantile) from

> ARI institute ( was a 73 before Dr. G and necessary meds and he is now

> a 22! He is in gen ed, and went from nonverbal and screaming to a

> child who uses 4 word sentences, requests, and happily shares his

> interests with us.

> >

> > Would this have happened if I hopped around interventions?

> >

> > I hope whatever you do, you have no regrets.

> >

> > I wish you the best!

> >

> > Robin Driver

> >

> > Sent via MOTOBLURâ„¢ on Verizon Wireless

> >

> > Re: Re: Calling it quits...

> >

> >

[Guest guest]

Thank you for your response. I was tested once and I was not high but I

have no doubt I have strep lying dormant. I have acupuncture done to

break up all the knots and a lot of toxins come out after and sometimes

my ears and throat will hurt. I was going to have our whole family

treated by Dr G but could not afford it but I think I better at least

get myself treated by him. My husband has Alzheimer now and it really is

too much for me to handle everything. Dr G did tell me to try to do the

same diet for me as for my son. I have psoriasis and interstitial

cystitis too. Ahhh the auto-immune connection with all of us!! My son

did test high for titers and was on Ery-ped forever it seemed, before it

finally came down. I am pretty much in survival mode and do the best I

can. I can't do the diet exactly right without losing my mind. I love

your emails Marcia, " better to work with your kid " then do all that. I

have to make a good life for all 4 of us as best I can. It can't all be

about my one son anymore, we all need to live and thrive here if we can.

I know I've been falling fast and I am desperately trying to heal myself

too because if I go down, we are all done for. I have no family near me

to help. I got a nasty flu for the past 3 weeks and it was scary to see

how everything falls apart if I am not around. I am taking keflex to get

rid of a sinus infection from it and I at times feel relaxed and other

times I wish I could crawl out of my skin. But a long term antibiotic

use might be the trick. I love Marcia too, how you said our OCD is what

keeps us at it with our kids. That it so true! I've been reading the

emails forever just never respond much. Something kicked me off the

digest format and that helps to read one and then respond. Thanks so

much to you that do respond. I think there are a lot of us still on this

list that read but don't reply often. Jerri

>

> Hi, Jeri.

>

> Just curious....have you been tested for strep titers? I've had an

> anxiety disorder since I hit my teens. I was always sick with strep.

> I've been on Ery-Tab for two years now and my anxiety has all but

> disappeared. As soon as my strep titers increase, it comes back again.

> I can often tell before the labs get back. You may want to have your

> son tested. As far as tremors, I do get them occasionally, but at

> night, I jerk constantly. Sometimes it's just my legs and other times

> it's my whole body. I'm on the protocol and have seen some

> improvement in this.

>

> HTH,

>

> Robyn

>

>

>

> >

>

> > >

>

> > > I am sorry for your pain & understand your sense of urgency. We all

>

> > feel it.

>

> > >

>

> > > I get the feeling that perhaps you were never clear about the

>

> > disease process and what specific meds do to treat.

>

> > > We are not just filling up our kids with meds blindly. Meds DO fade

>

> > out. Some are kids are slower starters than others, but not all.

>

> > >

>

> > > My son is in year 2 and we have a different child. His baseline

>

> > scores on the ATEC test

>

> > > (scores range from 0-180, 0 =typical 180= is severe infantile) from

>

> > ARI institute ( was a 73 before Dr. G and necessary meds and he is now

>

> > a 22! He is in gen ed, and went from nonverbal and screaming to a

>

> > child who uses 4 word sentences, requests, and happily shares his

>

> > interests with us.

>

> > >

>

> > > Would this have happened if I hopped around interventions?

>

> > >

>

> > > I hope whatever you do, you have no regrets.

>

> > >

>

> > > I wish you the best!

>

> > >

>

> > > Robin Driver

>

> > >

>

> > > Sent via MOTOBLURâ„¢ on Verizon Wireless

>

> > >

>

> > > Re: Re: Calling it quits...

>

> > >

>

> > >

[Guest guest]

Strep or lyme. Have you tried long term antibiotics? Augmentin, zithromax are

ones commonely used for PANDAS.

> >

> > >

> > > I am sorry for your pain & understand your sense of urgency. We all

> > feel it.

> > >

> > > I get the feeling that perhaps you were never clear about the

> > disease process and what specific meds do to treat.

> > > We are not just filling up our kids with meds blindly. Meds DO fade

> > out. Some are kids are slower starters than others, but not all.

> > >

> > > My son is in year 2 and we have a different child. His baseline

> > scores on the ATEC test

> > > (scores range from 0-180, 0 =typical 180= is severe infantile) from

> > ARI institute ( was a 73 before Dr. G and necessary meds and he is now

> > a 22! He is in gen ed, and went from nonverbal and screaming to a

> > child who uses 4 word sentences, requests, and happily shares his

> > interests with us.

> > >

> > > Would this have happened if I hopped around interventions?

> > >

> > > I hope whatever you do, you have no regrets.

> > >

> > > I wish you the best!

> > >

> > > Robin Driver

> > >

> > > Sent via MOTOBLURâ„¢ on Verizon Wireless

> > >

> > > Re: Re: Calling it quits...

> > >

> > >

[Guest guest]

IC is commonly from bartonella which is a coinfection to lyme. Other syptoms of

bartonella include anxiety, mood swings, pains in the bottoms of feet, skin

tags, rashes, night sweats, heart palpitations, nausea, colitis and stretch

marks.

Many lyme patients (without treatment) are first dx with dementia and even ALS

or MS.

If you cannot see a lyme literate medical doctor for the family, consider

reading Buhner's, " Healing Lyme " to learn herbal protocols.

Caryn

> >

> > >

> >

> > > >

> >

> > > > I am sorry for your pain & understand your sense of urgency. We all

> >

> > > feel it.

> >

> > > >

> >

> > > > I get the feeling that perhaps you were never clear about the

> >

> > > disease process and what specific meds do to treat.

> >

> > > > We are not just filling up our kids with meds blindly. Meds DO fade

> >

> > > out. Some are kids are slower starters than others, but not all.

> >

> > > >

> >

> > > > My son is in year 2 and we have a different child. His baseline

> >

> > > scores on the ATEC test

> >

> > > > (scores range from 0-180, 0 =typical 180= is severe infantile) from

> >

> > > ARI institute ( was a 73 before Dr. G and necessary meds and he is now

> >

> > > a 22! He is in gen ed, and went from nonverbal and screaming to a

> >

> > > child who uses 4 word sentences, requests, and happily shares his

> >

> > > interests with us.

> >

> > > >

> >

> > > > Would this have happened if I hopped around interventions?

> >

> > > >

> >

> > > > I hope whatever you do, you have no regrets.

> >

> > > >

> >

> > > > I wish you the best!

> >

> > > >

> >

> > > > Robin Driver

> >

> > > >

> >

> > > > Sent via MOTOBLURâ„¢ on Verizon Wireless

> >

> > > >

> >

> > > > Re: Re: Calling it quits...

> >

> > > >

> >

> > > >

[Guest guest]

Did he regress? Have you looked into Landau Kleffner variant?

> >

> > >

> > > I am sorry for your pain & understand your sense of urgency. We all

> > feel it.

> > >

> > > I get the feeling that perhaps you were never clear about the

> > disease process and what specific meds do to treat.

> > > We are not just filling up our kids with meds blindly. Meds DO fade

> > out. Some are kids are slower starters than others, but not all.

> > >

> > > My son is in year 2 and we have a different child. His baseline

> > scores on the ATEC test

> > > (scores range from 0-180, 0 =typical 180= is severe infantile) from

> > ARI institute ( was a 73 before Dr. G and necessary meds and he is now

> > a 22! He is in gen ed, and went from nonverbal and screaming to a

> > child who uses 4 word sentences, requests, and happily shares his

> > interests with us.

> > >

> > > Would this have happened if I hopped around interventions?

> > >

> > > I hope whatever you do, you have no regrets.

> > >

> > > I wish you the best!

> > >

> > > Robin Driver

> > >

> > > Sent via MOTOBLURâ„¢ on Verizon Wireless

> > >

> > > Re: Re: Calling it quits...

> > >

> > >

[Guest guest]

PANDAS worth researching as well

> > >

> > > >

> > > > I am sorry for your pain & understand your sense of urgency. We all

> > > feel it.

> > > >

> > > > I get the feeling that perhaps you were never clear about the

> > > disease process and what specific meds do to treat.

> > > > We are not just filling up our kids with meds blindly. Meds DO fade

> > > out. Some are kids are slower starters than others, but not all.

> > > >

> > > > My son is in year 2 and we have a different child. His baseline

> > > scores on the ATEC test

> > > > (scores range from 0-180, 0 =typical 180= is severe infantile) from

> > > ARI institute ( was a 73 before Dr. G and necessary meds and he is now

> > > a 22! He is in gen ed, and went from nonverbal and screaming to a

> > > child who uses 4 word sentences, requests, and happily shares his

> > > interests with us.

> > > >

> > > > Would this have happened if I hopped around interventions?

> > > >

> > > > I hope whatever you do, you have no regrets.

> > > >

> > > > I wish you the best!

> > > >

> > > > Robin Driver

> > > >

> > > > Sent via MOTOBLURâ„¢ on Verizon Wireless

> > > >

> > > > Re: Re: Calling it quits...

> > > >

> > > >

[Guest guest]

I have not looked into this. I will do a search and see what it is.

Thanks, Jerri

>

> Did he regress? Have you looked into Landau Kleffner variant?

>

>

> > >

> > > >

> > > > I am sorry for your pain & understand your sense of urgency. We all

> > > feel it.

> > > >

> > > > I get the feeling that perhaps you were never clear about the

> > > disease process and what specific meds do to treat.

> > > > We are not just filling up our kids with meds blindly. Meds DO fade

> > > out. Some are kids are slower starters than others, but not all.

> > > >

> > > > My son is in year 2 and we have a different child. His baseline

> > > scores on the ATEC test

> > > > (scores range from 0-180, 0 =typical 180= is severe infantile) from

> > > ARI institute ( was a 73 before Dr. G and necessary meds and he is

> now

> > > a 22! He is in gen ed, and went from nonverbal and screaming to a

> > > child who uses 4 word sentences, requests, and happily shares his

> > > interests with us.

> > > >

> > > > Would this have happened if I hopped around interventions?

> > > >

> > > > I hope whatever you do, you have no regrets.

> > > >

> > > > I wish you the best!

> > > >

> > > > Robin Driver

> > > >

> > > > Sent via MOTOBLURâ " ¢ on Verizon Wireless

> > > >

> > > > Re: Re: Calling it quits...

> > > >

> > > >

[Guest guest]

Jerri,

How do you do this every day? Mom's like you amaze me and I'm in awe of your

dedication to your family. I have a few ideas that might help so call me

when you come up for air.

Best,

Marcia

805 497-8202

[Guest guest]

Thanks for that info. Our Dr.'s are definitely not up on this stuff.

I'll look for the book.

>

> IC is commonly from bartonella which is a coinfection to lyme. Other

> syptoms of bartonella include anxiety, mood swings, pains in the

> bottoms of feet, skin tags, rashes, night sweats, heart palpitations,

> nausea, colitis and stretch marks.

>

> Many lyme patients (without treatment) are first dx with dementia and

> even ALS or MS.

>

> If you cannot see a lyme literate medical doctor for the family,

> consider reading Buhner's, " Healing Lyme " to learn herbal protocols.

>

> Caryn

>

>

> > >

> > > >

> > >

> > > > >

> > >

> > > > > I am sorry for your pain & understand your sense of urgency.

> We all

> > >

> > > > feel it.

> > >

> > > > >

> > >

> > > > > I get the feeling that perhaps you were never clear about the

> > >

> > > > disease process and what specific meds do to treat.

> > >

> > > > > We are not just filling up our kids with meds blindly. Meds DO

> fade

> > >

> > > > out. Some are kids are slower starters than others, but not all.

> > >

> > > > >

> > >

> > > > > My son is in year 2 and we have a different child. His baseline

> > >

> > > > scores on the ATEC test

> > >

> > > > > (scores range from 0-180, 0 =typical 180= is severe infantile)

> from

> > >

> > > > ARI institute ( was a 73 before Dr. G and necessary meds and he

> is now

> > >

> > > > a 22! He is in gen ed, and went from nonverbal and screaming to a

> > >

> > > > child who uses 4 word sentences, requests, and happily shares his

> > >

> > > > interests with us.

> > >

> > > > >

> > >

> > > > > Would this have happened if I hopped around interventions?

> > >

> > > > >

> > >

> > > > > I hope whatever you do, you have no regrets.

> > >

> > > > >

> > >

> > > > > I wish you the best!

> > >

> > > > >

> > >

> > > > > Robin Driver

> > >

> > > > >

> > >

> > > > > Sent via MOTOBLURâ " ¢ on Verizon Wireless

> > >

> > > > >

> > >

> > > > > Re: Re: Calling it quits...

> > >

> > > > >

> > >

> > > > >

[Guest guest]

You amaze me too. I'm so glad you continue to post. You have kept a lot

of us going I am sure. Jerri

>

> Jerri,

>

> How do you do this every day? Mom's like you amaze me and I'm in awe

> of your

> dedication to your family. I have a few ideas that might help so call me

> when you come up for air.

>

> Best,

>

> Marcia

>

> 805 497-8202

>

>