Re: tough cases

[Guest guest]

Hi Trina,

I think we have e-spoke before. my daughter mary is a tough case. Slow,

very slow, improvement. But improvement none the less. So for that I'm

thankful, but still am ever so diligently working toward a total cure!

Tina M. Hendrix

Cure2000@...

Coordinator, Coalition, Northern California

Neuro-Immune Dysfunction Syndromes

Autism Spectrum Disorder, ADD/ADHD, Learning Disorders, Hyperactivity, CFS,

etc.

[Guest guest]

Hi

We have a son who is 11 years old and also high functioning autistic. We have

been following Dr. Goldberg's regiment for over a year and I have not seen a

" brighter and more alert " child yet. I have just decided this week that

enough was enough. We do not live in L.A. so it was a big deal to travel to

his office every other month and then to see no progress. I wish I could tell

you something different.

Reginanmax@...

[Guest guest]

If you are in Texas, close to the Dallas area, there is a therapist there

named Mac Alpine who took my son at age 3 from PDD/High Functioning

Autistic to being in Kindergarten in a regular school and testing as gifted

and talented. We still have some problems, we found out he has seizures in

his sleep (called Benign Epilepsy) but he is on medication and is still in

regular school. She is nothing short of a miracle worker, in my opinion.

Let me know if you are interested and I'll get you info on how to get in

touch with her.

Take care,

C.

" tough cases "

Hi everyone,

I am wanting to hear from other families that are patients of Goldberg that

have children that haven't necessarily responded to or as quickly to his

regimine. My son is now 7 and we have been patients of his for over four

years now. We have, obviously, done everything he has suggested. My son

currently is on Celexa, Diflucan, Famvir, Kutapressin, and some vitamins and

iron. My son is still considered autistic, in that he meets all of the

criteria. While he has made progress over the years, we have been doing ABA

to teach him his academics.

What I feel like I have is just a bigger and smarter autistic child, rather

than a less autistic child. Don't get me wrong- I'll take a smarter one

over nothing, but the reason we employed Dr. Goldberg as our autism

specialist and do all of the interventions he suggests is because he said he

could help our son become less autistic, if not recovered.

Goldberg himself has expressed frustration in our son's progress and vows

and declares he can still make a huge difference for him. He refers to us

as a " tough case " and says we just need to keep adjusting the meds, etc.

until we get it right.

I need to hear from other " tough cases " like ours who are doing the Goldberg

thing. Like I said, it has been over four years.

Thanks,

Trina

[Guest guest]

Dear C, how did you find out that he had seizures at night? Also, would you

say that it was this woman only that help recover your son? Thanks,

[Guest guest]

Hi,

I know what you mean. Its been about a year for us. Although we see

improvement, " autism " is the predominant feature. I wonder when this new

class of immuno-modulators are going to make an appearance.

Ray

Montgomery wrote:

>

> Hi everyone,

>

> I am wanting to hear from other families that are patients of Goldberg that

have children that haven't necessarily responded to or as quickly to his

regimine. My son is now 7 and we have been patients of his for over four years

now. We have, obviously, done everything he has suggested. My son currently is

on Celexa, Diflucan, Famvir, Kutapressin, and some vitamins and iron. My son is

still considered autistic, in that he meets all of the criteria. While he has

made progress over the years, we have been doing ABA to teach him his academics.

>

> What I feel like I have is just a bigger and smarter autistic child, rather

than a less autistic child. Don't get me wrong- I'll take a smarter one over

nothing, but the reason we employed Dr. Goldberg as our autism specialist and do

all of the interventions he suggests is because he said he could help our son

become less autistic, if not recovered.

>

> Goldberg himself has expressed frustration in our son's progress and vows and

declares he can still make a huge difference for him. He refers to us as a

" tough case " and says we just need to keep adjusting the meds, etc. until we get

it right.

>

> I need to hear from other " tough cases " like ours who are doing the Goldberg

thing. Like I said, it has been over four years.

>

> Thanks,

>

> Trina

>

>

[Guest guest]

Hi Trina

We have been with Dr. G now for four years and my son who will be eight

has made some gains but not recovered. Still no speech and I am home

schooling him. However the last 3 months, he picked up pace in his

learning that is short of astonishing everybody. He still has sloppy

speech, not spontaneous, but he is reading and comprehending what he is

reading. He is signing and writing. He keeps it up and we may be able to

catch up. I have not given up on Dr. G's protocol and will continue to

adjust the meds. He said one day my son will talk and I said that before

him. Despite the odds and the difficult case. Keep it up mom and don't

give up hope. Your child will turn the corner.

Mercy

[Guest guest]

Hi Everyone!!

My name is Michele Davies and I am the mother of a 7-year old girl who was

diagnosed with Autism/PDD at age 3. We have tried EVERYTHING and had

absolutely no response.

She was in excrutiating pain almost every day of her life until Dr.

Goldberg started her on his protocol, which I may add has been scientificlly

tested and tested. She is no longer in any pain. If she does experience

some type of physical pain it never lasts longer than 15-30 mins. And occurs

only once a month, if that. Also, I would like to add that her crying,

screaming, hitting and banging prior to her being treated by Dr. Goldberg

would have lasted up to 4-5 hours at a time. Every day or every other day!!!

This is a miracle in itself. We began seeing Dr. Goldberg in March, 2000.

The older the child " the longer they have been suffering internally " ..

therefore will take longer to recover. Our children did not become ill

overnite, therefore WE ALL must be more patient. Please do not give up.

Dr. Goldberg's medical studies and hypotheses are proven. Please read up on

all of his findings: ...at neuroimmunedr.com. I understand how frustrated

it is and how terrible we have been and continue to be treated by most

medical professionals. Dr. Goldberg is an exception. He has helped many,

many children, and unfortunately some have taken up to 5 years to make

significant progresses. Some children are younger and some children respond

more quickly to the medications. Please, Please....We have to stick

together!!!

Sincerely and With Respect To All of You!

Michele C. Davies

isoaa@...

[Guest guest]

Thanks for adding your comments, . I was getting a little anxious

there. Our son is 11 and we have our first appt. with Dr. Goldberg in Jan.

2001. Speaking as a parent of an " older child " though I have to say you go

through so many stages emotionally. And, while I would do anything to help

my son if he were in obvious pain, I also have to say that I have lately

scared myself a bit by realizing I am becoming very accepting of who he is as

a person and sometimes wonder whether I am doing the right thing dragging him

from one doctor to another. He is usally so at peace and has far more happy

days than the average person. I have stood by his hospital bed and wept at

his pain and terror in the past with CT's, EEG's, lab tests, etc. Sometimes

I truely wonder whether I' m doing it for him or me. I would welcome

improvement but really don't know how much more I can put him through. Oops.

Didn't mean to get so emotional here. Sorry everyone. I envy those of you

with younger children. OOHHH to have known and had access to the info now

available to all of you. But, what is meant to be will be. I just love him

one day at a time!

[Guest guest]

Imagine having one child who has essentially " recovered " cognitively, and one

who for whatever reason who has not. That's where we're at. turned

around rapidly, after the introduction of antifungals and prozac, but then

again, he also responded to ABA almost immediately. 's autism was very

late onset...he was almost three. I truly believe this child remembered the

time where he could speak and interact.

slipped away after a bout of rotavirus which left him hospitalized when

he was seven months old. He never came back from it. However, Dr.

Goldberg's protocol has offered even our severely autistic six year old son

hope for a better life. Since starting the protocol in September, he is

reading, writing, and his ABA skill aquistion rate has skyrocketed. He's

learned more in the last three months than he has in a lifetime. Tantrums are

few and far between.

Is he talking? No. Is he still autistic? Definitely. I wonder if I do an

injustice to my older son when I adopt the idea that failure to recover means

he's lost the game, or that I " ve failed him. Still, when flew past his

big brother developmentally, it was a double edged experience. I was elated

for one child, and heart broken for the other.

We haven't seen Dr. G in person yet--(traveling cross country with this child

just isn't an option right now), but our neurologist has embraced the

protocol and is simply amazed by what our boys are doing. So am I. God give

me patience to see this thing through, lol!

Traci

[Guest guest]

For the sake of your child please hang in there! If he was already 10 when he

started the protocol it will take a while to see a response. You have to undo

10 years of damage and that is not the same as undoing 3 years. Please

remember that is a systemic disease. These kids have more wrong with

them than just Autistic Spectrum disorders. You can't see his pancreas or his

thyroid but they too are responding to this protocol. is progressive.

These children are sick. Please don't give up. My daughter is 11 and I am

really concerned about the age factor. I don't torture myself by thinking how

things might have been had I started her on the protocol earlier I think

about what her future might be if I had not started it at all. Her fasting

blood sugar is high normal. Her thyroid autoimmune antibodies are abnormally

high. Do I really want her to be a diabetic on thyroid medication in addition

to her other issues? Please for the sake of your child do not give up. The

immunemodulators are on the way. They will make a difference! Kathy R

[Guest guest]

My pediatrician referred us to a neurologist because he still wet the bed at

night, and she did an EEG - one where they put him to sleep, it was a really

long test, and he had spikes on the test. Since then I've noticed some

absence seizures, at which time he usually wets or soils himself, then cries

and says he can't help it. He also thinks he says things he doesn't say,

then doesn't understand why we don't answer him, or thinks kids at school

say things they don't say.

As for Mac Alpine, I'd say she was 70% of the reason for his

improvement. I also took him off dairy (he had chronic ear infections, 3

sets of tubes) and off eggs, added several vitamins, nothing " strange " ,

primarily the B vitamins and Omega 3 Oils (I would rub the oil into his

skin) and he got very healthy, the ear infections stopped, and suddenly he

was not meeting the criteria for autism. taught me and him to use

sign language, which led to verbal language through drawing, and pragmatic

therapy. He wouldn't be nearly the child he is today without her. I've

since moved to California, but I'm planning a trip to take my son to see her

because he has been having some difficulties lately and I know she can help.

That's how much I believe in her. I have 3 other children and will have to

arrange for a babysitter as well as pay for the trip, but it's worth it.

If you have any more questions, feel free to contact me. She will be in

Italy through Thanksgiving (she has set up an autism clinic there), but

after that you can email her at BrainTrain@.... If she doesn't answer

right away it's because she's in Italy.

Take care, love to your little one,

Carolyn

Re: " tough cases "

Dear C, how did you find out that he had seizures at night? Also, would you

say that it was this woman only that help recover your son? Thanks,

Responsibility for the content of this message lies strictly with

the original author, and is not necessarily endorsed by or the

opinion of the Research Institute.

[Guest guest]

Carolyn,

I am near DFW airport in Coppell. Would you please send me

information on Mac Alpine. My daughter is PDD/HFA as well.

Thanks in advance for your help.

Felicia Ward

> If you are in Texas, close to the Dallas area, there is a therapist

there

> named Mac Alpine who took my son at age 3 from PDD/High

Functioning

> Autistic to being in Kindergarten in a regular school and testing

as

gifted

> and talented. We still have some problems, we found out he has

seizures in

> his sleep (called Benign Epilepsy) but he is on medication and is

still in

> regular school. She is nothing short of a miracle worker, in my

opinion.

> Let me know if you are interested and I'll get you info on how to

get in

> touch with her.

>

> Take care,

> C.

>

> " tough cases "

>

>

> Hi everyone,

>

> I am wanting to hear from other families that are patients of

Goldberg that

> have children that haven't necessarily responded to or as quickly

to

his

> regimine. My son is now 7 and we have been patients of his for

over

four

> years now. We have, obviously, done everything he has suggested.

My son

> currently is on Celexa, Diflucan, Famvir, Kutapressin, and some

vitamins and

> iron. My son is still considered autistic, in that he meets all of

the

> criteria. While he has made progress over the years, we have been

doing ABA

> to teach him his academics.

>

> What I feel like I have is just a bigger and smarter autistic

child,

rather

> than a less autistic child. Don't get me wrong- I'll take a

smarter

one

> over nothing, but the reason we employed Dr. Goldberg as our autism

> specialist and do all of the interventions he suggests is because

he

said he

> could help our son become less autistic, if not recovered.

>

> Goldberg himself has expressed frustration in our son's progress

and

vows

> and declares he can still make a huge difference for him. He

refers

to us

> as a " tough case " and says we just need to keep adjusting the meds,

etc.

> until we get it right.

>

> I need to hear from other " tough cases " like ours who are doing the

Goldberg

> thing. Like I said, it has been over four years.

>

>

> Thanks,

>

> Trina

>

>

>

[Guest guest]

Carolyn,

Is a doctor? I heard that skin absorption of

vitamin a was the least effective but I cannot get my

daughter to take it any form or any flavor. So, you saw a

noticeable improvement with it? Thanks for your help.

Felicia

I am near DFW in Coppell. Is listed in the phone

book or should I contact via email?

On Thu, 16 Nov 2000 11:38:25 -0800 Carolyn Saltiel

<carolyn@...> wrote:

> My pediatrician referred us to a neurologist because he still wet the bed at

> night, and she did an EEG - one where they put him to sleep, it was a really

> long test, and he had spikes on the test. Since then I've noticed some

> absence seizures, at which time he usually wets or soils himself, then cries

> and says he can't help it. He also thinks he says things he doesn't say,

> then doesn't understand why we don't answer him, or thinks kids at school

> say things they don't say.

>

> As for Mac Alpine, I'd say she was 70% of the reason for his

> improvement. I also took him off dairy (he had chronic ear infections, 3

> sets of tubes) and off eggs, added several vitamins, nothing " strange " ,

> primarily the B vitamins and Omega 3 Oils (I would rub the oil into his

> skin) and he got very healthy, the ear infections stopped, and suddenly he

> was not meeting the criteria for autism. taught me and him to use

> sign language, which led to verbal language through drawing, and pragmatic

> therapy. He wouldn't be nearly the child he is today without her. I've

> since moved to California, but I'm planning a trip to take my son to see her

> because he has been having some difficulties lately and I know she can help.

> That's how much I believe in her. I have 3 other children and will have to

> arrange for a babysitter as well as pay for the trip, but it's worth it.

>

> If you have any more questions, feel free to contact me. She will be in

> Italy through Thanksgiving (she has set up an autism clinic there), but

> after that you can email her at BrainTrain@.... If she doesn't answer

> right away it's because she's in Italy.

>

> Take care, love to your little one,

> Carolyn

>

> Re: " tough cases "

>

>

> Dear C, how did you find out that he had seizures at night? Also, would you

> say that it was this woman only that help recover your son? Thanks,

>

>

> Responsibility for the content of this message lies strictly with

> the original author, and is not necessarily endorsed by or the

> opinion of the Research Institute.

>

>

>

>

>

> Responsibility for the content of this message lies strictly with

> the original author, and is not necessarily endorsed by or the

> opinion of the Research Institute.

>

>

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

Felicia S. Ward

felicia.ward@...

[Guest guest]

Hi,

I'm sorry to hear that your son has not responded to Dr. Goldbergs

treatments. I am constructing a protocol of all the possible treatments for

autism/ADD/CFS and attempting to rank them in the order of most effective to

least effective.

If you wouldn't mind, please send an E-mail to larry11111111@...

that is the name Larry followed by eight ones at hotmail.com

I would like to hear about what did and did not work, and I would perfer it

be thur private e-mail. There are a lot of people who will benefit from the

ideas on this message board and I would not want to discourage them in

anyway. I'm sure you understand.

I might be of a service to you in the future.

>From: Reginanmax@...

>Reply-egroups

>egroups

>Subject: Re: " tough cases "

>Date: Wed, 15 Nov 2000 16:14:40 EST

>

>Hi

>We have a son who is 11 years old and also high functioning autistic. We

>have

>been following Dr. Goldberg's regiment for over a year and I have not seen

>a

> " brighter and more alert " child yet. I have just decided this week that

>enough was enough. We do not live in L.A. so it was a big deal to travel to

>his office every other month and then to see no progress. I wish I could

>tell

>you something different.

>

>Reginanmax@...

_________________________________________________________________________

Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com.

Share information about yourself, create your own public profile at

http://profiles.msn.com.

[Guest guest]

Carolyn thanks for taking the time to reply. I am so happy for you and your

child-it's a positivestory that I will hold on too! Take care,

[Guest guest]

In terms of tough cases...

Have any of you who are parents of children who are not progressing as

quickly as you had hoped done any of the following:

1. aggressive removal of all possible allergens (not just limited to food but

inhalants as well)

2. utilized rehabilitative services/programs that you would recommend (for or

against)

We are starting a clinic here and will probably have a few kids that

also do not respond as we would like. I think that when we have the

immunemodulators that will help but I am exploring what else would be useful

to recommend to Parents. Anyone have any opinions on ABA when a child is on

the Protocol? How about TEACHH (is that correct?) ? Thanks for your

opinions. Kathy R President, Coalition-Northern New York Chapter

[Guest guest]

I do think the Protocol makes our children more able to benefit from

therapies such as ABA.

As far as allergens go...oy....one year on the CF/gluten free/soy free diet

showed NO benefits other than elimination of diarrhea. The SSRI's seem to

have made the biggest difference in our kids. Their ABA aquisition rates

skyrocketed after introducing them.

I have to swear by the PECS program. I wish I'd started it with the

day he was diagnosed. He has learned functional communications and has,

after a year on the program, begun verbalizing some of the PECS cards and

requests he makes. He's reading because of the constant pairing of a written

word with a picture.

The constant reinforcement of hearing the language that goes with the cards

has really helped his receptive language. PECS helped Jmy younger son,

..who was verbal...learn about the structure of language. It helped

both kids realize that they could engage another human being to get what they

want/need without screaming. Tantrums are way down in this house.

I love PECS. It's cheap, easy to learn, and a universal form of

communications which anyone can understand. As I said, I wish I'd known

about it the day our oldest boy was diagnosed. He picked up on the idea of

the " exchange " in one day. He's learned colors, shapes, size, yes and no, I

want, I see and I hear. He knows how to wait turns and follow a visual

schedule.

Most importantly, he has learned to fundamental need to engage another human

being in order to communicate his wants and needs.

Lots of if only's, huh? Anyway, for more information about PECS, visit

www.pecs.com. It is a wonderful addition to an ABA program, as it is based

on many of the principals of ABA, but is a more " gentle " program, as it

teaches the child through a reinforcer which he has requested and highly

desires.

Traci

[Guest guest]

Hi,

Is there anyone who might be able to give me their experience with antifungal

treatment? We are having a rough experience and the worry has clearly set in

around here.

Anyone who had to switch antifungals one or more times?

Sharon

[Guest guest]

Hi Sharon,

Have had the following experiences with antifungals over a two year period

with our 6 1/2 year old grandson.

Diflucan - Helped him sleep through the night and reduced stimming. Withdrew

after one month to try Nizoral

Nizoral - Had tough time getting him to take it due to bitter taste.

Nystatin - used for over a year and half due to fact it is not retained in

the body so no liver concerns. Seemed to help but never quite sure about

consistent effectiveness.

Diflucan - Tried again with terrible hives reaction for 3 days after one and

a half doses.

Nizoral - Currently taking and is working.

Biggest benefit of antifungals for our grandson is improved sleeping and

reduced stimming. It also may have helped in toilet training. We never had

him tested for yeast but this might be a good idea to determine the need for

and effectiveness of antifungals.

Best wishes,

Bernie

[Guest guest]

How can you possibly rank therapies based upon anecdotals? Kathy R

[Guest guest]

Antifungals by themselves are not adequate as for most children have as much

if not more of a problem with viruses. Testing is not necessarily conclusive

in a child with a dysfunctional immune system. It must be a part of a battery

of tests. Kathy R Coalition-Northern New York

[Guest guest]

,

I really enjoyed your post. I can understand loving your child for the

way that he is. But remember although he may be happy all the time,

he is still not healthy internally. This is where the protocol comes

into place. Hang in there. You will see wonderful results!! Hopefully,

we will all be able to receive these new immune modulators soon.

Best Of Luck,

Michele

[Guest guest]

Michele, these new immune modulators-will these as well as the

antifungal-viral medicines help with the immune system as well as the blood

flow in the brain? I am trying to paint a picture in my head. Also, does Dr.

G first treat the huge yeast problem before he goes to the next step. Does he

hugely rely on the yeast test results or does he want to see a change in the

bowel formation? Thanks,

[Guest guest]

Ginger,

Thank you for your reply. Can I ask what your die-off symptoms were like?

We are having a rough regression and Dr G feels this is die-off. Lots of

praying around here lately :-).

Sharon

[Guest guest]

Hello:

We have been on Nizoral (lasted only 2 weeks because immediately

after giving it to my daughter, she would race around and around the

house as if we just put in a new battery); then we went to Diflucan

and stayed with that for about 11 months and felt that we had the

yeast under control (regular blood tests did not show any change in

liver function) and then went to Amphoteracin B. At first we did not

notice a big change, but gradually she regressed and she lost her

language (a total of 10 weeks on Amphoteracin . So, we put her

back on Diflucan (saw die-off again - not as bad - for about 5 days)

and have been on that since September. Her language has come back as

well as her awareness. We are close to where we were when we first

took her off Diflucan and put her on Amphoteracin B. I feel that we

have kept a close watch on her liver function and her system is

obviously not able to hold her yeast in check yet. I really don't

think that we will be able to get off Diflucan until we have the new

neuroimmune transmitters to beef up her immune system and let her

body take care of the yeast on its own. (I can't wait until the

trials start!)

Note: We have been with Dr. G for 18 months.

Ginger

> Hi,

> Is there anyone who might be able to give me their experience with

antifungal

> treatment? We are having a rough experience and the worry has

clearly set in

> around here.

> Anyone who had to switch antifungals one or more times?

> Sharon