Re: tough cases

[Guest guest]

Ginger, why did you think that the yeast was under control after 11 months on

Diflucan-was it because of her behavior,her stool was improving, better eye

contact? Any input will be appreciated!Thanks,

[Guest guest]

Michele, Thanks for the words of encouragement. I guess we all have our

ups and downs don't we?! Happy Thanksgiving.

[Guest guest]

Hi-

's behavior was getting better and better. She was responding

to friends asking her questions at school (one sentence). She was

requesting that friends from school come over to play. When they

would come and play, I didn't have to remind her to " play " with that

friend and not get into a computer game or video by herself. She was

sad that her friend was going home after playing. Most days she was

very happy, humming or singing to herself. Her eye contact still was

not good (always has been fleeting). At that point she was 1/2 day

Kindergarten, 2 hours private speech a week, 1 hr OT, no real home

program at that time, Valtrex, Prozac, Kutapressin, Claritin,

Nasacort AQ (nasal spray), iron and the switch from Diflucan to

Amphoteracin B.

Okay, then at the end of the school year we felt that maybe we could

try it and watch over her. I was thrilled that she was maybe healthy

enough to try it. So, little by little over the summer, she

regressed. Quieter, quieter and more to herself. Didn't ask about

friends (even though I did have some come over). It happened very

gradually and then we started school (into a full day 1st

grade/parapro support all day shared with an Asperger's student,

everything else basically the same except we had added 4 hours of

behavioral at-home program). Her parapro (same from Kindergarten)

asked me " WHAT HAPPENED? " I kept making excuses - it was summer,

unstructured, it was her allergies, we were on vacation, etc... When

her parapro asked that question, it just hit me all at once. Of

course, her yeast!!

Anyway, we have been back on Diflucan since the end of September.

Her language and awareness is better, but we are still not where we

were at the end of June. I could just kick myself for letting it go

this long. One nice thing about this experience is that my

pediatrician was giving me such a hard time about her being on

Diflucan for 11 months and now he is supporting me because we did try

to eliminate it and it didn't work. So, he has informed the

insurance company to cover what we are doing (for now anyway).

Did anyone else have similar experiences? 's HHV6 has come down

from 40-60 to the 20 range now and her alpha-interferon was 220 and

now is very low. (under 5, but it was a different test with a range

<15). We KNOW she is getting healthier. She is major league testing

us. We just had a telephone conference with Dr. G and all we talked

about were discipline issues. I'm pooped out. I want this to get

easier and even as she gets healthier, we will still deal with all

the behavioral issues because pysho-socially she MUST grow through

these experiences. Anyway, we will stuggle on. After reading the

messages from " tough cases, " I really shouldn't be complaining. We

have seen good progress (with a lot of other support/not just meds)

and I am thankful. Still crabby and pooped, but thankful. Sorry

this got so long.

Ginger

> Ginger, why did you think that the yeast was under control after 11

months on

> Diflucan-was it because of her behavior,her stool was improving,

better eye

> contact? Any input will be appreciated!Thanks,

[Guest guest]

>Sharon -

Regression mode was rewinding or stopping videotapes over and over

again (we had finally gotten rid of this). Having to have her way at

the top of her lungs. She would get totally steaming mad in zero to

four seconds flat. Couldn't handle transitions at school. Vocal

stimming to herself. Really back into her own world. It was all

her " bad " behavior coming back to haunt us. It is amazing how

quickly you can get used to better behavior and forget the really

crazy stuff. Gradually this tapered off and now (see other post) we

are dealing with " normal " behavioral stuff (not going to bed at

night, yelling " shut up " at school, occasionally hitting people,

wanting to run out the doors at school when they have inside recess)

things like that. I mentioned in the other post that we just spoke

with Dr. G and ALL we discussed were discipline issues. It is

wearing us out because for the last 5 years we have dealt with a

zillion tantrums (as most of us have) and now we have to gear up

for " normal " behavioral issues. Okay, I just want a quiet vacation

in Aruba. Actually, the best Christmas present I could get would be

to hear that Goldberg's trials are finally starting! We shall see.

Anyway, hope this helps. Good luck.

Ginger

Ginger

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]

:

Sorry for not getting back sooner. Yes, Dr. Goldberg starts children

usually on an anti-viral. Then an anti-fungal and then a ssri. I really

don't know if that would be the way he would start if the new immune

modulators were available.

Let's hope and pray that they become available real soon. It would

be the greatest Holiday gift for all of us. I pray for this more than

anything in the world.

Michele Davies

isoaa@...

[Guest guest]

Michele, you really feel confident with these immune modulators!! I keep

aasking what these things will do, but nobody answers me so I am going to ask

you. What are the names of these modulators and will they evenually help with

the bloodflow to the brain. I remember asking Dr. G about this and his answer

still confused me. I have yet made an appointment with him because my son is

improving with ABA and diet but I too pray everyday that something added will

help these guys become more typical. I am going to take your positiveness on

these modulators and make it my biggest hope as well. Please respond if you

can share more knowledge with me. Tak care,

[Guest guest]

Hi ,

These immune modulators will expedite the healing process for our kids. Dr.

Goldberg's protocol involves healing the immune system. To do so, at this

point, we must only work with drugs/meds that are approved w/ FDA. These

drugs usually include, but are not limited to the following:

1-antivirals

2-antifungals

3-ssri (prozac, zoloft,etc.)

4-kutapressin

5-zyrtec (for sinus conditions)

These medications listed above help to eliminate the viruses, candida (excess

of

yeast) and improve bloodflow in the brain (temporal lobes) which should

enable the immune system to function more efficiently. It is sometimes an

extremely long process, could be anywhere from 1-5 years, and parents do seem

to lose their patience.

These immune modulators have been proven to be much more effective than

the medications listed above. These modulators will allow the body to not

only

function more efficiently but will maintain and regulate all the major

systems,

such as immune, central nervous system and blood flow in the temporal lobes

of the brain. The children will remain in a healthy balance, referred to as

homeostasis.

It is quite amazing how Dr. Goldberg linked this " New Type Of Autism " , REALLY

SHOULD BE REFERRED TO AS , to the immune system. His wife was ill and

suffered from Chronic Fatigue Syndrome, similar abnormalities in her blood

and our children diagnosed with PDD/Autism were noted. Then he began to

realize that it was in fact a medical condition these kids suffer from. His

heart and soul has been in it from the get go. Nobody was listening to his

philosophy,etc. But he has hard, solid, scientific evidence of his

findings. He deserves to be acknowledged not only as a physician; but as a

human being that wants to see people healthy and fulfilling their lives. I

never met a doctor quite like him. Don't you wait, get a phone call to his

office asap. And remember these kids did not get to where they are overnite.

Give your son/daughter time, they will come out of this!!!

Sincerely and With Great Respect,

Michele C. Davies

isoaa@...

[Guest guest]

Thanks Michele for your thorough reply. You give off such a positiveness in

your writing -too bad we can't meet. Anyway, how long have you been with

Dr.G? Yea, I agree ! When I do read the mail the parents do seem impatient,,

but I guess the attitude is that time is running out! Is his treatment

pretty much the same for each child? Does he pretty much assume that each

child has this viral infection? Do you know of anyone who had seen him and

the child has recovered? What test result did your child have that proved

that he/she had it? What behaviors did you see diminish once treated and did

the bowels change as well? The only behaviors that Richie has is limited

speech and social weakness even though he gets along so well with his

sister. He is a finicky eater, and he frequently wakes up at night.His bowels

are fine and rarely sick Lastly, these modulators,once approved how does one

get them? Thanks so much for replying,

[Guest guest]

Tina,

We have been doing the Dr. Goldberg protocol for more than five years for our

son, , who turned 10 last month. Dr. G. refers to as one of

his tough cases, and I do mean extremely tough. We have not seen much

improvement but are more aware of his potential. We have been on too many

meds to list here, but are currently using Kutapressin, Paxil (I have not

seen any results from any of the SSRIs), occasionally iron (I need to hide it

in foods and he usually detects it) and, from Dr. Aguilar, we have been using

FGF-2. We stopped it for 3 months in an attempt to see if it was making our

son worse, but I am now sure that it is not. I suspect Dr. G will want us to

restart Diflucan or another anti-fungal next, since we have been off them

for approx. a year. I have been very confused about what the obstacle is.

We have behavior problems as well and I can't think straight, so we hang in

there meanwhile with the hope for improved immune modulators.

mary n.

[Guest guest]

Thanx so much, , for your info! I don't feel so all alone anymore with

our tough little case.

Tina M. Hendrix

Cure2000@...

President, Coalition, Northern California

Neuro-Immune Dysfunction Syndromes

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

etc.

[Guest guest]

Dear ,

I will pray for and for your family also. This will be no comfort but

in medicine no protocol works 100% for all patients. If they did my cousin,

whom we just buried in July, would have gone into remission as the majority

of people with her cancer have done. Having said that, research continues and

if the funding falls into place testing will start with the first

immunemodulators within the next few months AND there are several more after

that already in existence that have possibilities. Those drugs may be the

answer. You may have not seen dramatic improvement with your son but how much

worse would he have been had you done nothing medical? One question if I may?

How extensive have you gone into allergen removal in your home? Kathy R

Coalition-Northern New York

[Guest guest]

Kathy,

thanks for your prompt and kind response. I do not check my messages

frequently, so if you send me anything and don't hear back soon, please

understand. our son, patrick, who was ten last month, wants me to put him to

bed and stay with him. by the time he goes to sleep, i am wiped out and our

older son or my husband are then monopolizing the computer. also, since we

got DSL, i encounter obtacles to signing on, as when DSL has been left on

overnight or for many hours.

As to your question on in-home allergens, we have not done much to date. We

have been using NAET treatments (both patrck and myself) for more than a year

and since then, patrick's eosinophils (as measured by blood work done by Dr.

G's office) have

come down and i believe this is largely due to the NAET treatments of food

and non-food allergies. Some of the non-food allergies we have worked on are

latex, which caused us to see that the continued presence of latex-backed

area rugs made clearing that allergy by NAET a prolonged experience. I have

kept the latex products out of patrick's room as much as possible. For

example, i put a small shelf into the hall outside of his room where i keep

his shoes, since they have latex soles. But there are small objects in his

room and elsewhere with latex and i have not removed then because he cleared

that allergy, meaning that it is, we hope, no longer a problem.

We have similarly treated p. for lead and copper using NAET. In case you are

not familiar with NAET, on children it involves accupressure while the child

holds a vial of the energy of the allergen. It is based on the meridians of

Chinese med. and is totally non-invasive. I have discussed this with Dr.

Goldberg, and I know he is sceptical but since P. is not ingesting any herbal

product, etc. with this, he does not object to it.

Back to the household allergen issue...our house is not clean and is

therefore full of dust, possibly molds, etc. I cannot keep up with the

housework and I gave up the once-a-week cleaning lady because we are so

buried by stuff that patrick pulls out of shelves, cupboards, etc. that i

feel i am the only one available to try to put the stuff back, and I can't

keep up with it enough to then do the kind of cleaning job I would like. It

so happens that i have been out looking at better vacuums and have my eye on

one of the Miele vacuums, which are sealed systems and have, in most models,

HEPA filters.

I do not allow any pesticides to be used in our house, even though we have

ant invasions when the weather is especially hot or rainy.

Maybe the above will spur your thoughts/suggestions. . thanks again for the

concern and for your work on the No. Cal. group.

mary n.

[Guest guest]

Kathy, sorry that referred to you as being part of the No. CAl. group...just

looked at your first message again and saw you are in N.Y. I attended the

first conference in May 1999. Do you know if a second such major

conference is planned?

mary n.

[Guest guest]

Don't know. Wouldn't that be nice! Kathy R