Re: Doing for a year - no improvements

[Guest guest]

It seems possible that your child may have PANDAS. You need to go to

www.pandasnetwork.org and review PADNAS symptoms.  The ASO and DNASE titers are

only high in 50% of the kids per our doc who is a PANDAS specialist.  You are

just starting the Ery Ped. I would give that a try for awhile. Hang in there. It

takes time. Does your son have a lot of OCD, aggression, anxiety. These are some

of the signs of PANDAS. If your son does not respond to the Ery Ped you may want

to try a steroid or IVIG.

 

Best wishes

From: kathd9 <kathyd3@...>

Subject: Doing for a year - no improvements

Date: Friday, December 10, 2010, 8:06 PM

 

My son is almost 8 and has been doing for a year. I had my heart set on

this because it makes absolute sense to me. But are no improvements. He has

still not picked up any language - has not improved on his LOUD vocal stims and

muscle tense/hand rubbing stims (don't know how to explain this) I have not

found anyone on this board with a similar kid so I am doubtful that this is

helping. is on celexa/acyclovir/immunovir/wellbutrin/tenex/ketaconazole

and into his 3rd week on erytab. He's 100% on the diet/we keep up our reports to

Dr G and have our phone consult next week. I am tempted to ask him how to ween

off of all this. I know he will discourage me but I don't see any light in this

tunnel. I know that no one else is helping our kids and Dr G is on top of the

research in the American Pediatric Community for autism. But these prescriptions

are not doing anything. I am considering stem cells and homeopathy as other

options. I know there is no

research behind either of these but I can't stand trying all of these

medications on him with absolutely no help. In the section where we report

improvements - it is always a guessing game for me and I feel obliged to write

something - possibly sleeping better but then 2 nights later he is up again at

3am. Dr G. asks me if there is any light in his eyes but there isn't he is

probably (I hate to say it) but worse.

Sorry I know this is a forum which celebrates how much Dr G does for our kids

but it isn't happening for me and I am so sad about it. My heart aches. I mean

day after day. I would think that a year would be enough time to know if things

will get better and it hasn't. It was exactly Jan 2010 during School Christmas

break that we first met Dr G. Any advice would be greatly appreciated.

Kathy

[Guest guest]

Hi, Kathy.

I am a patient of Dr. G's along with my three boys. I have high strep titers and

I didn't see any real improvement in anxiety, OCD like symptoms, and extreme

emotionalism until my strep titers started coming down. I was more than a year

on Ery Tab before they started to consistently drop. I'm still on the highest

dose because every time we try to scale back, my numbers go up. I can usually

tell before we even get the labs back because the anxiety is so bad.

You may want to give the Ery-Ped some time to work. What about labs...are you

seeing any improvements in those? In my experience with my boys, especially

Noah, we see improvements in labs and it takes a little longer for the behavior

to improve or symptom to subside.

I hope this helps. Hang in there!

All the best,

Robyn

From: kathd9 <kathyd3@...>

Subject: Doing for a year - no improvements

Date: Friday, December 10, 2010, 8:06 PM

 

My son is almost 8 and has been doing for a year. I had my heart set on

this because it makes absolute sense to me. But are no improvements. He has

still not picked up any language - has not improved on his LOUD vocal stims and

muscle tense/hand rubbing stims (don't know how to explain this) I have not

found anyone on this board with a similar kid so I am doubtful that this is

helping. is on celexa/acyclovir/immunovir/wellbutrin/tenex/ketaconazole

and into his 3rd week on erytab. He's 100% on the diet/we keep up our reports to

Dr G and have our phone consult next week. I am tempted to ask him how to ween

off of all this. I know he will discourage me but I don't see any light in this

tunnel. I know that no one else is helping our kids and Dr G is on top of the

research in the American Pediatric Community for autism. But these prescriptions

are not doing anything. I am considering stem cells and homeopathy as other

options. I know there is no

research behind either of these but I can't stand trying all of these

medications on him with absolutely no help. In the section where we report

improvements - it is always a guessing game for me and I feel obliged to write

something - possibly sleeping better but then 2 nights later he is up again at

3am. Dr G. asks me if there is any light in his eyes but there isn't he is

probably (I hate to say it) but worse.

Sorry I know this is a forum which celebrates how much Dr G does for our kids

but it isn't happening for me and I am so sad about it. My heart aches. I mean

day after day. I would think that a year would be enough time to know if things

will get better and it hasn't. It was exactly Jan 2010 during School Christmas

break that we first met Dr G. Any advice would be greatly appreciated.

Kathy

[Guest guest]

Dear Kathy.

 

I feel awful for what you are going through.  There is nothing worse than

getting this diagnosis, trying to sort through and find what is right for your

child, do everything that

you are supposed to, and then get bad results. Also, you might have other

so-called experts chirping in your ear that your son is never going to get

better.

 

My son has been with Dr. Goldberg for eight years, he is now twelve.  My

son was okay when he was born and during the first 15 months of his life. 

After that age, it was like

he checked out ,then the A word began, and he was a full-blown case.  When we

started with Dr. Goldberg, he was very low functioning.  I was told he would

never talk or understand anything that I said. He would scream in public over

something that he suddenly became obsessed with.  At one point at about age

five, he would vomit on purpose  in school because he enjoyed the negative

attention.  I thought I was going to have  a stroke that year, but we made it

through that awful period.When he was younger, in public, people at times were

very judgmental, but I grew to either hate or love people and it didn't matter

what anymore.

 

Right now,  after all these years, I am in the midst of experiencing a

regression with him, but he is still below in pragmatic language but making

progress, 2 years behind in subjects in school, social knowledge,  and needs

work in the auditory processing area.  However, he is constantly learning while

typical kids may be spending more time being wasteful.  Also, with our kids or

any kids, often regressions happen before progress, but I know even after all

these years, it is diffficult to keep in mind.

 

Dr. Goldberg sometimes has a lot of tweaking to do and it takes time to find the

right combination.  Often, there are die-off periods where things become much

worse. We as parents  have to make sure that we fill in the pieces with the

right combination of home therapy, speech therapy, I would suggest Floortime,

hopefully playdates, and also working to catch him up in school subjects. 

Superduperinc, Linguisystems, Great Ideas for Teaching have been valuable

resources that I have used for home therapy products.  While you invest in

therapies, you have to learn to trust your own instincts and educate yourself so

that you know when to smell a rat and also be in the position to be able to

teach your child yourself better than anyone else and be a valuable

contribution of your son's therapy team.  The children that are hard cases

require a lot of time each week and most people simply cannot afford 20 hours of

therapy.

 

There are a lot of frauds out there and it is good to be careful.  I have seen

a lot written over the past 10 years with the various groups that I have joined

and clearly, there are people who don't care about our kids and are out to make

money at the expense of our children's health.  Dr. Goldberg would never do

anything that would not benefit your child, but sometimes it takes time.  My

son was so bad off to begin with, the only thing that is saving him is this

protocol and EXTENSIVE work.   If you can make the investment, Dr. Fosnot was

an excellent resource that put me on the right track to find things that would

help my son and outline immediate goals.

 

Again, I wrote previously about a regression that my son is experiencing in

school, but tonight, I am watching him look up videos on the TV on demand and

play it on his drum set.   He is very proud and good at what he does.  When

we first started out, I would have never imagined that he would get anything

that " normal " kids would.  There are some kids who will never 100% recover and

my son might very well be one of them, but the higher functioning we can get

them, the better off they will be in life.

 

There are also a lot of good people in this group that have great advice that

have been through what you are experiencing. Please feel free to write or

contact me any time.  Take care.

 

Lynn Tetrault

From: kathd9 <kathyd3@...>

Subject: Doing for a year - no improvements

Date: Friday, December 10, 2010, 8:06 PM

 

My son is almost 8 and has been doing for a year. I had my heart set on

this because it makes absolute sense to me. But are no improvements. He has

still not picked up any language - has not improved on his LOUD vocal stims and

muscle tense/hand rubbing stims (don't know how to explain this) I have not

found anyone on this board with a similar kid so I am doubtful that this is

helping. is on celexa/acyclovir/immunovir/wellbutrin/tenex/ketaconazole

and into his 3rd week on erytab. He's 100% on the diet/we keep up our reports to

Dr G and have our phone consult next week. I am tempted to ask him how to ween

off of all this. I know he will discourage me but I don't see any light in this

tunnel. I know that no one else is helping our kids and Dr G is on top of the

research in the American Pediatric Community for autism. But these prescriptions

are not doing anything. I am considering stem cells and homeopathy as other

options. I know there is no

research behind either of these but I can't stand trying all of these

medications on him with absolutely no help. In the section where we report

improvements - it is always a guessing game for me and I feel obliged to write

something - possibly sleeping better but then 2 nights later he is up again at

3am. Dr G. asks me if there is any light in his eyes but there isn't he is

probably (I hate to say it) but worse.

Sorry I know this is a forum which celebrates how much Dr G does for our kids

but it isn't happening for me and I am so sad about it. My heart aches. I mean

day after day. I would think that a year would be enough time to know if things

will get better and it hasn't. It was exactly Jan 2010 during School Christmas

break that we first met Dr G. Any advice would be greatly appreciated.

Kathy

[Guest guest]

Thank you for reading my post and writing out your thoughts. A few things I

would like to address - PANDAS. I have suspected it in some form and was happy

that we were trying Erytab for that reason. Dr G wasn't in a hurry to start

because his strep was elevated at some point but nothing that he said was of

concern. We ran another lab and it was elevated but not as much as the previous

test. It was then that we started Ery-tab probably just to see what would

happen. My son has a big red rash across the top of his lip that he gets from

Sept - June. It gets worse when he gets sick like a cold but it is generally

there all the time. THe first week of Erytab it disappeared - behaviours didn't

but I thought this was it - things would get better. But we are still on Erytab

and the rash is back exactly as before. He's not sick (well I mean a cold or

anything) but the rash is red and sometimes it gets sore - in the past when he

obsessed about it it would bleed a little from him wiping it soo much. Sometimes

I gage how stimmy he will be based on how red the rash is.

2. On his viral panel at the start of all this; only his HHV6 was elevated it

was 1:320 that was something for me to get excited about because I thought it

meant it was something I could treat. Now his level is 1:160 so they are going

down but nothing has changed. I don't think he had low NK cells but is on

Immunovir anyway.

3. He does have OCD in a few things actually just that he constantly finds

string to run through his fingers. Its more a stim than an OCD but he isn't OCD

about closing doors/having things a certain way/ I guess I'm not sure whether he

has OCD really or not. His OCD is towards himself. Hand ringing/holding string

in front of his face and body tensing (this is extremely difficult to describe)

can't decide if it is a stim or OCD.

4. He has no anxiety or aggression - I know its hard to believe but he doesn't

5. He has a lot of support - A LOT. I have hit the jackpot at school. He has an

aid who cares for him deeply and runs wonderful academic programs for him on her

own in a great room that is setup for him. She brings in other kids from his

grade to do activities with him but he cannot stay in his regular classroom. He

is in grade 2 but is not really at any grade level if that makes any sense. He

just learns in his own way. He cannot write - although we work on it along with

many other fine motor skills. Right now we are trying to teach sight words. This

is more about him memorizing the words visually.

6. At home we have been running an ABA program since the day he was diagnosed.

We have tried different approaches but now are working on certain academics -

learning familiar people's names - him touching who we ask him to acknowledge.

He is unable to say the names. We are now finally going to use pecs (picture

exchange communication). I have postponed this forever in hopes of him using

language but am now at a point where I have to find some other form for him to

communicate. This may be frowned upon but I am scared he will have no way to

tell me anything. I could go on and on about the money we have spent on

treatment whether it is biomedical or behaviourial but I am fully aware that

they go hand in hand. That was my dream this year. It wasn't that he would

recover (that was dream from 5 years ago) it was that he would start to feel

better so that he could learn. He could retain what we are teaching but in all

honesty he doesn't one day he will touch - MAMA (my pic) and the next he will

get it wrong. Its devastating.

There is a happy side to this. He is a happy boy. He is loved deeply by his

small family and the community that he is in. Its just that he is getting older

and not getting better.

I will look more into PANDAS and thank you Lynn for your encouraging story about

your son. I am thrilled for you and everyone on this list. When I read about

everyone's journey I am excited and always imagined I would be able to tell

's recovery story too one day. I'm just getting nervous that day won't

come

Kathy

>

>

> From: kathd9 <kathyd3@...>

> Subject: Doing for a year - no improvements

>

> Date: Friday, December 10, 2010, 8:06 PM

>

>

>  

>

>

>

> My son is almost 8 and has been doing for a year. I had my heart set on

this because it makes absolute sense to me. But are no improvements. He has

still not picked up any language - has not improved on his LOUD vocal stims and

muscle tense/hand rubbing stims (don't know how to explain this) I have not

found anyone on this board with a similar kid so I am doubtful that this is

helping. is on celexa/acyclovir/immunovir/wellbutrin/tenex/ketaconazole

and into his 3rd week on erytab. He's 100% on the diet/we keep up our reports to

Dr G and have our phone consult next week. I am tempted to ask him how to ween

off of all this. I know he will discourage me but I don't see any light in this

tunnel. I know that no one else is helping our kids and Dr G is on top of the

research in the American Pediatric Community for autism. But these prescriptions

are not doing anything. I am considering stem cells and homeopathy as other

options. I know there is no

> research behind either of these but I can't stand trying all of these

medications on him with absolutely no help. In the section where we report

improvements - it is always a guessing game for me and I feel obliged to write

something - possibly sleeping better but then 2 nights later he is up again at

3am. Dr G. asks me if there is any light in his eyes but there isn't he is

probably (I hate to say it) but worse.

> Sorry I know this is a forum which celebrates how much Dr G does for our kids

but it isn't happening for me and I am so sad about it. My heart aches. I mean

day after day. I would think that a year would be enough time to know if things

will get better and it hasn't. It was exactly Jan 2010 during School Christmas

break that we first met Dr G. Any advice would be greatly appreciated.

> Kathy

>

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

What Lynn is saying is so important.  I've heard Dr Goldberg say quite a few

times that the whole first year is for immune system recovering, that the second

year is when you start to see gaps filling in.  Sometimes it's much quicker for

people to see results.

Does Dr G see any improvement in labs? That would be important.  And sometimes

kids are learning language long before they ever begin expressing it verbally -

sometimes a couple years.  Soooo hard to believe when you're not seeing any

signs of it, though.

And maybe, just maybe, next year, we'll have a lot more info on XMRV.  Maybe

this will be a significant factor in treatment.  In CFS, which Dr G says is

much

the same as autism only a different age of onset - the more severly ill people

are bedridden for years even under the care of the very best doctors out

there. 

And some of those people are already being started on antiretrovirals, and they

are making progress for the first time.

Don't give up hope yet.  We KNOW the immune system is dysfunctional.  If

you're

not making progress might now, you might still be protecting.  You might be

preventing pain.  You might be preventing worsening. 

Do you know what the specific findings in your son's labs are?

I would certainly talk very frankly w/Dr G and ask him directly what he sees in

the labs, whether there is progress, and how many kids in this state did he see

make progress later, and what kind?  I remember another mom who I still see on

another list who for a couple of years was in despair over her son's severe

state.  We kept urging her to hang in there, but I wondered a lot if there was

any hope.  Then first time in a year or more, I saw a post from her that was so

different from before.  She sounded so much happier and more positive than I

had

seen in forever.  I wish I could call up her name.  Maybe I saved the post,

and

if I did, I'll ask her if she'll contact you and share the time frames and what

she went thru with her son, ok?

I really hope you can find some answers...

________________________________

From: Lynn Capone <ecapne@...>

Sent: Fri, December 10, 2010 7:48:58 PM

Subject: Re: Doing for a year - no improvements

 

Dear Kathy.

 

I feel awful for what you are going through.  There is nothing worse than

getting this diagnosis, trying to sort through and find what is right for your

child, do everything that

you are supposed to, and then get bad results. Also, you might have other

so-called experts chirping in your ear that your son is never going to get

better.

 

My son has been with Dr. Goldberg for eight years, he is now twelve.  My

son was

okay when he was born and during the first 15 months of his life.  After that

age, it was like

he checked out ,then the A word began, and he was a full-blown case.  When we

started with Dr. Goldberg, he was very low functioning.  I was told he would

never talk or understand anything that I said. He would scream in public over

something that he suddenly became obsessed with.  At one point at about age

five, he would vomit on purpose  in school because he enjoyed the negative

attention.  I thought I was going to have  a stroke that year, but we made it

through that awful period.When he was younger, in public, people at times were

very judgmental, but I grew to either hate or love people and it didn't matter

what anymore.

 

Right now,  after all these years, I am in the midst of experiencing a

regression with him, but he is still below in pragmatic language but making

progress, 2 years behind in subjects in school, social knowledge,  and needs

work in the auditory processing area.  However, he is constantly learning while

typical kids may be spending more time being wasteful.  Also, with our kids or

any kids, often regressions happen before progress, but I know even after all

these years, it is diffficult to keep in mind.

 

Dr. Goldberg sometimes has a lot of tweaking to do and it takes time to find the

right combination.  Often, there are die-off periods where things become much

worse. We as parents  have to make sure that we fill in the pieces with the

right combination of home therapy, speech therapy, I would suggest Floortime,

hopefully playdates, and also working to catch him up in school subjects. 

Superduperinc, Linguisystems, Great Ideas for Teaching have been valuable

resources that I have used for home therapy products.  While you invest in

therapies, you have to learn to trust your own instincts and educate yourself so

that you know when to smell a rat and also be in the position to be able to

teach your child yourself better than anyone else and be a valuable

contribution

of your son's therapy team.  The children that are hard cases require a lot of

time each week and most people simply cannot afford 20 hours of therapy.

 

There are a lot of frauds out there and it is good to be careful.  I have seen

a

lot written over the past 10 years with the various groups that I have joined

and clearly, there are people who don't care about our kids and are out to make

money at the expense of our children's health.  Dr. Goldberg would never do

anything that would not benefit your child, but sometimes it takes time.  My

son

was so bad off to begin with, the only thing that is saving him is this protocol

and EXTENSIVE work.   If you can make the investment, Dr. Fosnot was an

excellent resource that put me on the right track to find things that would help

my son and outline immediate goals.

 

Again, I wrote previously about a regression that my son is experiencing in

school, but tonight, I am watching him look up videos on the TV on demand and

play it on his drum set.   He is very proud and good at what he does.  When

we

first started out, I would have never imagined that he would get anything that

" normal " kids would.  There are some kids who will never 100% recover and my

son

might very well be one of them, but the higher functioning we can get them, the

better off they will be in life.

 

There are also a lot of good people in this group that have great advice that

have been through what you are experiencing. Please feel free to write or

contact me any time.  Take care.

 

Lynn Tetrault

From: kathd9 <kathyd3@...>

Subject: Doing for a year - no improvements

Date: Friday, December 10, 2010, 8:06 PM

 

My son is almost 8 and has been doing for a year. I had my heart set on

this because it makes absolute sense to me. But are no improvements. He has

still not picked up any language - has not improved on his LOUD vocal stims and

muscle tense/hand rubbing stims (don't know how to explain this) I have not

found anyone on this board with a similar kid so I am doubtful that this is

helping. is on celexa/acyclovir/immunovir/wellbutrin/tenex/ketaconazole

and into his 3rd week on erytab. He's 100% on the diet/we keep up our reports to

Dr G and have our phone consult next week. I am tempted to ask him how to ween

off of all this. I know he will discourage me but I don't see any light in this

tunnel. I know that no one else is helping our kids and Dr G is on top of the

research in the American Pediatric Community for autism. But these prescriptions

are not doing anything. I am considering stem cells and homeopathy as other

options. I know there is no

research behind either of these but I can't stand trying all of these

medications on him with absolutely no help. In the section where we report

improvements - it is always a guessing game for me and I feel obliged to write

something - possibly sleeping better but then 2 nights later he is up again at

3am. Dr G. asks me if there is any light in his eyes but there isn't he is

probably (I hate to say it) but worse.

Sorry I know this is a forum which celebrates how much Dr G does for our kids

but it isn't happening for me and I am so sad about it. My heart aches. I mean

day after day. I would think that a year would be enough time to know if things

will get better and it hasn't. It was exactly Jan 2010 during School Christmas

break that we first met Dr G. Any advice would be greatly appreciated.

Kathy

[Guest guest]

and Lynn are giving you excellent advice. I was struck by 's

comment about language. Noah's expressive language is not near what I want it to

be, but his expressive language is extensive and probably quite near typical. I

keep telling everyone who works with him to just keep exposing him to a variety

of communication and curriculum. I know it will be fruit one day. We are

starting to see that now with him. He has now reached the point where he is

seeking us out to communicate with us about something more than wants and

needs.He is now sharing his artwork with me without being prompted.

Take care and continue to post. There are so many wonderful people on this list

that can help.

All the best,

Robyn

From: kathd9 <kathyd3@...>

Subject: Doing for a year - no improvements

Date: Friday, December 10, 2010, 8:06 PM

 

My son is almost 8 and has been doing for a year. I had my heart set on

this because it makes absolute sense to me. But are no improvements. He has

still not picked up any language - has not improved on his LOUD vocal stims and

muscle tense/hand rubbing stims (don't know how to explain this) I have not

found anyone on this board with a similar kid so I am doubtful that this is

helping. is on celexa/acyclovir/immunovir/wellbutrin/tenex/ketaconazole

and into his 3rd week on erytab. He's 100% on the diet/we keep up our reports to

Dr G and have our phone consult next week. I am tempted to ask him how to ween

off of all this. I know he will discourage me but I don't see any light in this

tunnel. I know that no one else is helping our kids and Dr G is on top of the

research in the American Pediatric Community for autism. But these prescriptions

are not doing anything. I am considering stem cells and homeopathy as other

options. I know there is no

research behind either of these but I can't stand trying all of these

medications on him with absolutely no help. In the section where we report

improvements - it is always a guessing game for me and I feel obliged to write

something - possibly sleeping better but then 2 nights later he is up again at

3am. Dr G. asks me if there is any light in his eyes but there isn't he is

probably (I hate to say it) but worse.

Sorry I know this is a forum which celebrates how much Dr G does for our kids

but it isn't happening for me and I am so sad about it. My heart aches. I mean

day after day. I would think that a year would be enough time to know if things

will get better and it hasn't. It was exactly Jan 2010 during School Christmas

break that we first met Dr G. Any advice would be greatly appreciated.

Kathy

[Guest guest]

We did about 4 years with no lasting benefits, but it's wonderful the

protocol works for some of you. Apparently we did not fit the profile.

The combinations of strong Rx drugs and long term usage were always a concern,

but we tried it. There was no literature on the drugs in combination - testing

had not been done. Don't know if it ever has, but the regular blood tests were

scary to us. (and expensive)

My son was developing normally and had a clear serious MMR reaction at age 1 and

lost everything. Dr Ritvo told us to get long term care, he would never talk,

etc. We hoped would cure but eventually gave up.

We found GFCF diet to be HUGE benefit.

Next amazing treatment was HIGH VITAMIN A protocol - 48 hrs, under $20 - had eye

contact within a week or two, plus major cognitive leaps.

Chelation to remove the mercury using ALA (health food supplement Alpha Lipoic

Acid anti oxidant with virtually no downside) low/frequent dose has been

remarkable - my son, almost 15, tells us he wants to continue because he can

think more clearly. It costs about $50/year and takes about 2 yrs.

One thing that blows us away - we just asked him what his earliest memories are.

My son did not speak until age 7. He told us about a train set he got at age

3...named all the trains. He told us every school and teacher he had including 5

different elementaries, Jr High and High School. His ATEC is plummeting and he

has had straight A's since mid 7th grade - at grade level curriculum, some

mainstream classes. Also playing sports and amazing on the computer.

He has missed only 1 or 2 days of school per year from colds. His allergies are

almost gone. He used to be sick constantly.

He takes no prescriptions, very few supplements and will totally be weaned from

everything within the next 18-24 months.

I have watched hundreds of kids improve and lose their diagnosis, get off the

diet, medication and supplements.

Autism Research Institute (ARI) has a really cool page where parents rate

treatments - over 27,000 parents have chimed in. It's eye opening to see what

has improved, worsened or not affected kids.

It's apparent there is no panacea for all kids, but I wanted to share our

experience and wish health, happiness and love to all of us everywhere and hope

everyone finds what works best for them.

[Guest guest]

Kathy,

It sounds like you are doing everything right. It is your kind of kid that

makes me ache. He has a family and a mom who would do anything for him and

it just isn't working yet. I'm glad you brought this to the list because

this is not an uphill climb and other moms need to see that. We all need to

help each other and those like you who are silently suffering need to know

this is two steps forward and ten steps back. It does take time for them to

get better and sometimes kid's immune systems are just so messed up it

takes a lot of time. Remember he has been sick for years and it takes years

for him to get better.

Another issue is we tend to measure a child's improvement and progress by

language and if your kiddo doesn't have any it is not a good measurement to

use. Think about that Spanish class you were in. Although you started to

understand, you still couldn't speak fluently after several years. It takes

a " normal " child three years to develop language and ours are sick.

In addition, as moms we notice all the issues our kids have and the things

we need to work on. We are with them daily so it is hard to notice small

improvements but instead notice the weird stuff because how can you ignore

it. With I sometimes didn't think he was improving, but actually he

was. Each year at the beginning of school I wrote a note to his new teacher

with bullets about what he needed to learn. And sometimes I did not realize

how far he had come until I wrote the note for the following year and saw

all the things I could remove from the list.

Like your son, strep was an issue with . He and I both would pass it

back and forth. We were both usually sick with it. We had it constantly

and antibiotics didn't help. He improved tremendously after I had his

tonsils out in first grade and he finally was not constantly battling the

strep. When you talked about the rash above his lip, used to get that

in the early days. The antifungals and antivirals finally took care of it.

Hang in there, Kathy, You are doing everything right. This is the hardest

thing I have ever done and I don't ever want to do it again. And please

call if I can help in any way. I'm not too good at the medical, but I'm

great with educational, behavioral interventions, and just understanding how

hard this is.

Best,

Marcia

805 497-8202

[Guest guest]

You are so right we had receptive language years before we saw any expressive

language. Now although we are far from atypical expressive speech, we are making

all A's and B's based on his receptive language skills. The expressive will come

arm in arm with social. Last Thursday I was driving five kids home from school

and Connor announced that they would all wear black shoes tomorrow, he went on

and on about it at home, (I have not a clue where this came from other than

possibly the new Wii game he got and they are competing on) The next

morning I picked each of them up and they ALL showed up with black shoes on. YOU

COULD NOT SHUT CONNOR UP! he was so excited that he had actual friends that

would listen. I never, in twelve years hear him speak so spontaneously and so

eloquently.

Think about it! Why talk when no one is listening, kids this age NEVER talk to

mom and dad.

________________________________

From: Robyn & Greg Coggins <rngcoggs@...>

Sent: Sat, December 11, 2010 12:23:30 AM

Subject: Re: Doing for a year - no improvements

and Lynn are giving you excellent advice. I was struck by 's

comment about language. Noah's expressive language is not near what I want it to

be, but his expressive language is extensive and probably quite near typical. I

keep telling everyone who works with him to just keep exposing him to a variety

of communication and curriculum. I know it will be fruit one day. We are

starting to see that now with him. He has now reached the point where he is

seeking us out to communicate with us about something more than wants and

needs.He is now sharing his artwork with me without being prompted.

Take care and continue to post. There are so many wonderful people on this list

that can help.

All the best,

Robyn

From: kathd9 <kathyd3@...>

Subject: Doing for a year - no improvements

Date: Friday, December 10, 2010, 8:06 PM

My son is almost 8 and has been doing for a year. I had my heart set on

this because it makes absolute sense to me. But are no improvements. He has

still not picked up any language - has not improved on his LOUD vocal stims and

muscle tense/hand rubbing stims (don't know how to explain this) I have not

found anyone on this board with a similar kid so I am doubtful that this is

helping. is on celexa/acyclovir/immunovir/wellbutrin/tenex/ketaconazole

and into his 3rd week on erytab. He's 100% on the diet/we keep up our reports to

Dr G and have our phone consult next week. I am tempted to ask him how to ween

off of all this. I know he will discourage me but I don't see any light in this

tunnel. I know that no one else is helping our kids and Dr G is on top of the

research in the American Pediatric Community for autism. But these prescriptions

are not doing anything. I am considering stem cells and homeopathy as other

options. I know there is no

research behind either of these but I can't stand trying all of these

medications on him with absolutely no help. In the section where we report

improvements - it is always a guessing game for me and I feel obliged to write

something - possibly sleeping better but then 2 nights later he is up again at

3am. Dr G. asks me if there is any light in his eyes but there isn't he is

probably (I hate to say it) but worse.

Sorry I know this is a forum which celebrates how much Dr G does for our kids

but it isn't happening for me and I am so sad about it. My heart aches. I mean

day after day. I would think that a year would be enough time to know if things

will get better and it hasn't. It was exactly Jan 2010 during School Christmas

break that we first met Dr G. Any advice would be greatly appreciated.

Kathy

[Guest guest]

That is awesome, Bill.

All the best,

Robyn

From: kathd9 <kathyd3@...>

Subject: Doing for a year - no improvements

Date: Friday, December 10, 2010, 8:06 PM

My son is almost 8 and has been doing for a year. I had my heart set on

this because it makes absolute sense to me. But are no improvements. He has

still not picked up any language - has not improved on his LOUD vocal stims and

muscle tense/hand rubbing stims (don't know how to explain this) I have not

found anyone on this board with a similar kid so I am doubtful that this is

helping. is on celexa/acyclovir/immunovir/wellbutrin/tenex/ketaconazole

and into his 3rd week on erytab. He's 100% on the diet/we keep up our reports to

Dr G and have our phone consult next week. I am tempted to ask him how to ween

off of all this. I know he will discourage me but I don't see any light in this

tunnel. I know that no one else is helping our kids and Dr G is on top of the

research in the American Pediatric Community for autism. But these prescriptions

are not doing anything. I am considering stem cells and homeopathy as other

options. I know there is no

research behind either of these but I can't stand trying all of these

medications on him with absolutely no help. In the section where we report

improvements - it is always a guessing game for me and I feel obliged to write

something - possibly sleeping better but then 2 nights later he is up again at

3am. Dr G. asks me if there is any light in his eyes but there isn't he is

probably (I hate to say it) but worse.

Sorry I know this is a forum which celebrates how much Dr G does for our kids

but it isn't happening for me and I am so sad about it. My heart aches. I mean

day after day. I would think that a year would be enough time to know if things

will get better and it hasn't. It was exactly Jan 2010 during School Christmas

break that we first met Dr G. Any advice would be greatly appreciated.

Kathy

[Guest guest]

Thanks for posting rwb. It's nice to know there are some that can do it

without spending a fortune.

_____

From: [mailto: ] On Behalf Of rwb000

Sent: Saturday, December 11, 2010 2:04 AM

Subject: Re: Doing for a year - no improvements

We did about 4 years with no lasting benefits, but it's wonderful the

protocol works for some of you. Apparently we did not fit the profile.

The combinations of strong Rx drugs and long term usage were always a

concern, but we tried it. There was no literature on the drugs in

combination - testing had not been done. Don't know if it ever has, but the

regular blood tests were scary to us. (and expensive)

My son was developing normally and had a clear serious MMR reaction at age 1

and lost everything. Dr Ritvo told us to get long term care, he would never

talk, etc. We hoped would cure but eventually gave up.

We found GFCF diet to be HUGE benefit.

Next amazing treatment was HIGH VITAMIN A protocol - 48 hrs, under $20 - had

eye contact within a week or two, plus major cognitive leaps.

Chelation to remove the mercury using ALA (health food supplement Alpha

Lipoic Acid anti oxidant with virtually no downside) low/frequent dose has

been remarkable - my son, almost 15, tells us he wants to continue because

he can think more clearly. It costs about $50/year and takes about 2 yrs.

One thing that blows us away - we just asked him what his earliest memories

are. My son did not speak until age 7. He told us about a train set he got

at age 3...named all the trains. He told us every school and teacher he had

including 5 different elementaries, Jr High and High School. His ATEC is

plummeting and he has had straight A's since mid 7th grade - at grade level

curriculum, some mainstream classes. Also playing sports and amazing on the

computer.

He has missed only 1 or 2 days of school per year from colds. His allergies

are almost gone. He used to be sick constantly.

He takes no prescriptions, very few supplements and will totally be weaned

from everything within the next 18-24 months.

I have watched hundreds of kids improve and lose their diagnosis, get off

the diet, medication and supplements.

Autism Research Institute (ARI) has a really cool page where parents rate

treatments - over 27,000 parents have chimed in. It's eye opening to see

what has improved, worsened or not affected kids.

It's apparent there is no panacea for all kids, but I wanted to share our

experience and wish health, happiness and love to all of us everywhere and

hope everyone finds what works best for them.

[Guest guest]

You know, I don't mention it much, but when my youngest son had his onset of CFS

at age 5 (after coming off the protocol almost a year before), he really lost

tons of expressive and receptive language.  It was really scarey, but I

understood what was going on but could only watch (well, listen) in horror. 

The

changes were pretty dramatic.  It improved rapidly months later after he spiked

a 106.9 fever and went well for several more months.  Then the first sign that

he was regressing again back into CFIDS was the language and speech - subtle at

first.

It's still not back to totally normal, although it's not severe.  And I can see

it fluctuate - sometimes in the same day.  It's so wierd.  I'm more aware of

it

sometimes, and once in a while it seems fine.  I often feel uneasy about it,

but

I'm in that place of acceptance being he's doing well enough and I know time on

the protocol should continue to improve it.

________________________________

From: Bill klimas <klimas_bill@...>

Sent: Sat, December 11, 2010 12:48:08 PM

Subject: Re: Doing for a year - no improvements

 

You are so right we had receptive language years before we saw any expressive

language. Now although we are far from atypical expressive speech, we are making

all A's and B's based on his receptive language skills. The expressive will come

arm in arm with social. Last Thursday I was driving five kids home from school

and Connor announced that they would all wear black shoes tomorrow, he went on

and on about it at home, (I have not a clue where this came from other than

possibly the new Wii game he got and they are competing on) The next

morning I picked each of them up and they ALL showed up with black shoes on. YOU

COULD NOT SHUT CONNOR UP! he was so excited that he had actual friends that

would listen. I never, in twelve years hear him speak so spontaneously and so

eloquently.

Think about it! Why talk when no one is listening, kids this age NEVER talk to

mom and dad.

________________________________

From: Robyn & Greg Coggins <rngcoggs@...>

Sent: Sat, December 11, 2010 12:23:30 AM

Subject: Re: Doing for a year - no improvements

and Lynn are giving you excellent advice. I was struck by 's

comment about language. Noah's expressive language is not near what I want it to

be, but his expressive language is extensive and probably quite near typical. I

keep telling everyone who works with him to just keep exposing him to a variety

of communication and curriculum. I know it will be fruit one day. We are

starting to see that now with him. He has now reached the point where he is

seeking us out to communicate with us about something more than wants and

needs.He is now sharing his artwork with me without being prompted.

Take care and continue to post. There are so many wonderful people on this list

that can help.

All the best,

Robyn

From: kathd9 <kathyd3@...>

Subject: Doing for a year - no improvements

Date: Friday, December 10, 2010, 8:06 PM

My son is almost 8 and has been doing for a year. I had my heart set on

this because it makes absolute sense to me. But are no improvements. He has

still not picked up any language - has not improved on his LOUD vocal stims and

muscle tense/hand rubbing stims (don't know how to explain this) I have not

found anyone on this board with a similar kid so I am doubtful that this is

helping. is on celexa/acyclovir/immunovir/wellbutrin/tenex/ketaconazole

and into his 3rd week on erytab. He's 100% on the diet/we keep up our reports to

Dr G and have our phone consult next week. I am tempted to ask him how to ween

off of all this. I know he will discourage me but I don't see any light in this

tunnel. I know that no one else is helping our kids and Dr G is on top of the

research in the American Pediatric Community for autism. But these prescriptions

are not doing anything. I am considering stem cells and homeopathy as other

options. I know there is no

research behind either of these but I can't stand trying all of these

medications on him with absolutely no help. In the section where we report

improvements - it is always a guessing game for me and I feel obliged to write

something - possibly sleeping better but then 2 nights later he is up again at

3am. Dr G. asks me if there is any light in his eyes but there isn't he is

probably (I hate to say it) but worse.

Sorry I know this is a forum which celebrates how much Dr G does for our kids

but it isn't happening for me and I am so sad about it. My heart aches. I mean

day after day. I would think that a year would be enough time to know if things

will get better and it hasn't. It was exactly Jan 2010 during School Christmas

break that we first met Dr G. Any advice would be greatly appreciated.

Kathy

[Guest guest]

So glad your son is doing well!! Your hard work has definitely paid off!

Thanks for the tip on the ARI website!

Sent on the Sprint® Now Network from my BlackBerry®

Re: Doing for a year - no improvements

We did about 4 years with no lasting benefits, but it's wonderful the

protocol works for some of you. Apparently we did not fit the profile.

The combinations of strong Rx drugs and long term usage were always a concern,

but we tried it. There was no literature on the drugs in combination - testing

had not been done. Don't know if it ever has, but the regular blood tests were

scary to us. (and expensive)

My son was developing normally and had a clear serious MMR reaction at age 1 and

lost everything. Dr Ritvo told us to get long term care, he would never talk,

etc. We hoped would cure but eventually gave up.

We found GFCF diet to be HUGE benefit.

Next amazing treatment was HIGH VITAMIN A protocol - 48 hrs, under $20 - had eye

contact within a week or two, plus major cognitive leaps.

Chelation to remove the mercury using ALA (health food supplement Alpha Lipoic

Acid anti oxidant with virtually no downside) low/frequent dose has been

remarkable - my son, almost 15, tells us he wants to continue because he can

think more clearly. It costs about $50/year and takes about 2 yrs.

One thing that blows us away - we just asked him what his earliest memories are.

My son did not speak until age 7. He told us about a train set he got at age

3...named all the trains. He told us every school and teacher he had including 5

different elementaries, Jr High and High School. His ATEC is plummeting and he

has had straight A's since mid 7th grade - at grade level curriculum, some

mainstream classes. Also playing sports and amazing on the computer.

He has missed only 1 or 2 days of school per year from colds. His allergies are

almost gone. He used to be sick constantly.

He takes no prescriptions, very few supplements and will totally be weaned from

everything within the next 18-24 months.

I have watched hundreds of kids improve and lose their diagnosis, get off the

diet, medication and supplements.

Autism Research Institute (ARI) has a really cool page where parents rate

treatments - over 27,000 parents have chimed in. It's eye opening to see what

has improved, worsened or not affected kids.

It's apparent there is no panacea for all kids, but I wanted to share our

experience and wish health, happiness and love to all of us everywhere and hope

everyone finds what works best for them.