ph Update

[Guest guest]

Oh ,

I'm so sorry things went like this for you, b......y good

job you know your stuff !

Over here I haven't heard too much about Dr.Goldstein except how wonderful

he is ! Just goes to show we can't relax and blindly trust where our

children are concerned. Well done, you're doing a great job for your son.

Hope things work out for you all.

Julea )

We must not allow other peoples limited perceptions to define us.

[Guest guest]

r u sure it would be appreciated?

i don't know who the anger would be addressed to?

when you fall in a sucker trap who is to blame?

iodine, seleniums, carotenes, retinyls..............................

sun exposure

answers

but not wanted

autism is unforgiving of intermediaries

thats not because it forgives

> Hi Everyone. ph had an appt. with Dr. Goldberg yesterday. I had

thought those awful Doctor's appts. ( you know, where you drive home

crying, grateful your child is in the backseat so they can't see you)

were over. Let me preface what I'm about to say with a little

background. ph had a bit of a fever, with some constipation for

about a week prior to this visit. Pediatrician said " virus " . Gave him

Children's Motrin, when the fever hit 102, and gave unbuffered

powdered Vit. C for the constipation. Bowel movements followed Vit.C

dose. Bowel movements were normal looking.

> Dr. Goldberg has my weekly updates, plus this new info. and gets

very upset at the Vit. C. ph has no behavioral or painful

intestinal reaction to the Vit. C, can't say that for the laxatives

out there. He says children can go up to a week with no bowel

movement. No, children can't go a week with no bowel movement and

remain " healthy " . So, I read Devin's earlier post, and boy did he hit

the nail on the head, when he said Doctors' who step outside their

realm of expertise, know enough to be dangerous.

> ph has been taking Valtrex since June, adjustment period, yes,

but he made such developmental gains, that the " adjustment " period

was nominal. June 30, we started Nizoral to attack the fungal issues.

ph experienced an initial adjustment, then die-off, then blisters

in his mouth and fever, lethargy, lack of appetite and generally

felt " sick " . Both pediatrician and Dr. Goldberg said " virus " , despite

all these things being listed on the adverse reactions chart.

Probiotics took care of the blisters, and the " virus? " ran it's

course. We then had a roller coaster ride of adjustment. Some days he

is " on " other days " off " . Sound sensory issues are out of control,

attention span is minimal, therapy is cancelled frequently. However,

incidental learning ( learning from his environment) and the

improvement in fine and gross motor skills is unbelievable. His

speech has improved to the degree that even his speech pathologist

is " amazed " and " intrigued " . Then we have this last week of fever,

constipation, etc.

> So Dr. Goldberg wants to know if we think the Nizoral is working.

Well, lets see, all these improvements, but this questionable see saw

of on and off days, plus ph is experiencing pruritus ( skin

changes and itching around anal opening), paraesthesia ( pins and

needles) and dyspepsia (abdominal discomfort). I didn't know the

adjustment would last this long. All the info. on Nizoral said 2

weeks dosage.

> Dr. Goldberg thinks all the bad side effects after the initial die-

off are not due to the Nizoral. Maybe he is right, maybe not. But are

we causing other problems by keeping him on the Nizoral so long?

> Dr. Goldberg now wants SSRI's to be the next step in ph's

treatment.Turns out that to increase blood flow in ph's brain,

SSRI's are the way to do it. I've done enough research on SSRI's to

know I don't want ph on them, to me, it's like last spring when

the Doctors at UCLA wanted ph on year round antibiotics, and were

giving him vaccine after vaccine. Maybe it's just that I know only

enough to be dangerous. I'm scared.

> The kicker is that seeing my reaction, Dr. Goldberg quickly pawned

me off on his nurses, to answer my next questions. I relayed what I

knew with regards to SSRI's, and I know at least a year on these

things is the norm. Now wait a minute here. A year? What happened to

our 4-6 months and we'll have a cured, healthier, non-autistic

symptomatic ph? With no meds? Turns out we need immune modulators

for that, and they aren't even done with the clinical trials yet,

much less on the FDA's notoriously slow list of meds. to be approved.

> Turns out, these hundreds of children that Dr. Goldberg has " cured "

are still on these meds. to a small degree. Only a handful have

walked away better without continuously needing the meds. Are they

socially adjusted? You bet. Getting good grades? Yes. Exhibiting

Autistic like symptoms? Of course not. Having dietary issues? Nope.

But they are still taking these SSRI's. And of course most who stop,

for whatever reason, see a regression in all improvement.

> So, turns out my idea of " cured " and his idea of " cured " are two

different things. All the research I did on this, well, when I read

the word " treated " I took it as past tense, turns out it was meant

present tense.

> A side note is, the blood tests show ph is having allergic

reactions, turns out those food challenges he told us were okay,

weren't okay. Despite not seeing any red ears, or behavioral issues

from Cheerios and bagels, some of our challenges, we apparently need

to go back to the GFCF diet for the most part. Except oats. Oats I

had introduced prior to his initial blood workup from Dr. Goldberg,

and that one said ph was doing great and showing no food

reactions. Thank God for the enzymes, because without them we'd still

be eating plain chicken and rice and drinking only water.

> I've a lot of reading to do now, it's very hard because I don't

understand a lot, and then have to keep in mind, much of what is in

print is outdated, and some of what is printed isn't true. There's

one more piece in this puzzle. I'm either going to find it, or die

trying.

> An irrelevant but painful side note is we had planned on having

another child next year. We thought, if ph's issues were gone,

and I'd taken this medication to also get rid of this virus, we'd be

able to have more children. I'm just so angry right now. Any advice

would be appreciated. Thank you.

>

>

>

[Guest guest]

On Tue, Aug 12, 2003 at 01:38:04PM -0700, Mattson wrote:

>

> Hi Everyone. ph had an appt. with Dr. Goldberg yesterday.

> An irrelevant but painful side note is we had planned on having

another child next year. We thought, if ph's issues were gone, and

I'd taken this medication to also get rid of this virus, we'd be able

to have more children. I'm just so angry right now. Any advice would be

appreciated. Thank you.

I know this is hard for you but you are right to question things. I also feel

especially remembering your excitement after your first meeting that you have

a right to be angry. I was describing your experience to my AS husband and he

reccommends that you go to the American Medical Association and complain,

especially if you were lied to, deceived, or did not get the full disclosure

about these alternative and experimental procedures. Complain about being led

on. If this man is doing this to others and has such a good reputation you want

to have some complaints to counterbalance that.

--

Ganger sganger@...

www.teawithstephanie.com

[Guest guest]

Thank you for the encouragement.

Re: ph Update

Oh ,

I'm so sorry things went like this for you, b......y good

job you know your stuff !

Over here I haven't heard too much about Dr.Goldstein except how wonderful

he is ! Just goes to show we can't relax and blindly trust where our

children are concerned. Well done, you're doing a great job for your son.

Hope things work out for you all.

Julea )

We must not allow other peoples limited perceptions to define us.

[Guest guest]

You're right. I didn't even think that far yet. I'm going to confront Dr.

Goldberg, just not yet. I like to get all my ducks in a row, and I need to

decide what I want. This is the first Doctor to prescribe the antiviral and

antifungal, despite my evidence and requests for it, from other Doctors. I can't

afford to go off half cocked, and right now I'm so upset I'm not even thinking

clearly. It was all I could do to buy groceries and shower today.----- Original

Message -----

From: Ganger

Sent: Tuesday, August 12, 2003 4:37 PM

Subject: Re: ph Update

On Tue, Aug 12, 2003 at 01:38:04PM -0700, Mattson wrote:

>

> Hi Everyone. ph had an appt. with Dr. Goldberg yesterday.

> An irrelevant but painful side note is we had planned on having

another child next year. We thought, if ph's issues were gone, and

I'd taken this medication to also get rid of this virus, we'd be able

to have more children. I'm just so angry right now. Any advice would be

appreciated. Thank you.

I know this is hard for you but you are right to question things. I also feel

especially remembering your excitement after your first meeting that you have

a right to be angry. I was describing your experience to my AS husband and he

reccommends that you go to the American Medical Association and complain,

especially if you were lied to, deceived, or did not get the full disclosure

about these alternative and experimental procedures. Complain about being led

on. If this man is doing this to others and has such a good reputation you

want

to have some complaints to counterbalance that.

--

Ganger sganger@...

www.teawithstephanie.com

[Guest guest]

Yup, I'm sure. I've become very adept at adapting to new info., if it of course

pertains. Like most parents I'm in a time crunch, trying to give the most help,

with the least damage. So, if on first inspection, it doesn't seem to pertain, I

move on. Occasionally divine intervention will lead me to something I've already

dismissed. So I apologize to ph if the answers have already been given to

me, and I was too dense to recognize them. I apologize to the group if I repeat

questions that have already been asked and answered. Autism is most unforgiving,

that is why I am so angry. This is the most important moment of my life, and I

am running bare chested into the hurdles. I'm not asking to sail over the

hurdles, but I don't want to be sucker punched while I'm running the race

either. Dr. Goldberg was not a sucker trap, I've known for a long time there was

a virus/bacteria/fungus at the heart of ph's issues. I've asked

gastroenterologists, immunologists, allergists, nutritionists, neurologists,

pediatric specialists, our pediatrician and numerous Doctors I've

written/corresponded with, for these exact meds., to no avail. But, like all

those other Doctors' it seems Dr. Goldberg is limited in his ability to help us.

Fortunately this time I have the balls, voice and ability to stop Dr. Goldberg

before he hurts ph. I just need help. I'm printing your e-mail. Everything

you just mentioned and more will be on my list of things to research. I remember

when I first did the GFCF diet, and everyone thought I was nuts then. I know the

answers are out there, just got to find them.

Re: ph Update

r u sure it would be appreciated?

i don't know who the anger would be addressed to?

when you fall in a sucker trap who is to blame?

iodine, seleniums, carotenes, retinyls..............................

sun exposure

answers

but not wanted

autism is unforgiving of intermediaries

thats not because it forgives

> Hi Everyone. ph had an appt. with Dr. Goldberg yesterday. I had

thought those awful Doctor's appts. ( you know, where you drive home

crying, grateful your child is in the backseat so they can't see you)

were over. Let me preface what I'm about to say with a little

background. ph had a bit of a fever, with some constipation for

about a week prior to this visit. Pediatrician said " virus " . Gave him

Children's Motrin, when the fever hit 102, and gave unbuffered

powdered Vit. C for the constipation. Bowel movements followed Vit.C

dose. Bowel movements were normal looking.

> Dr. Goldberg has my weekly updates, plus this new info. and gets

very upset at the Vit. C. ph has no behavioral or painful

intestinal reaction to the Vit. C, can't say that for the laxatives

out there. He says children can go up to a week with no bowel

movement. No, children can't go a week with no bowel movement and

remain " healthy " . So, I read Devin's earlier post, and boy did he hit

the nail on the head, when he said Doctors' who step outside their

realm of expertise, know enough to be dangerous.

> ph has been taking Valtrex since June, adjustment period, yes,

but he made such developmental gains, that the " adjustment " period

was nominal. June 30, we started Nizoral to attack the fungal issues.

ph experienced an initial adjustment, then die-off, then blisters

in his mouth and fever, lethargy, lack of appetite and generally

felt " sick " . Both pediatrician and Dr. Goldberg said " virus " , despite

all these things being listed on the adverse reactions chart.

Probiotics took care of the blisters, and the " virus? " ran it's

course. We then had a roller coaster ride of adjustment. Some days he

is " on " other days " off " . Sound sensory issues are out of control,

attention span is minimal, therapy is cancelled frequently. However,

incidental learning ( learning from his environment) and the

improvement in fine and gross motor skills is unbelievable. His

speech has improved to the degree that even his speech pathologist

is " amazed " and " intrigued " . Then we have this last week of fever,

constipation, etc.

> So Dr. Goldberg wants to know if we think the Nizoral is working.

Well, lets see, all these improvements, but this questionable see saw

of on and off days, plus ph is experiencing pruritus ( skin

changes and itching around anal opening), paraesthesia ( pins and

needles) and dyspepsia (abdominal discomfort). I didn't know the

adjustment would last this long. All the info. on Nizoral said 2

weeks dosage.

> Dr. Goldberg thinks all the bad side effects after the initial die-

off are not due to the Nizoral. Maybe he is right, maybe not. But are

we causing other problems by keeping him on the Nizoral so long?

> Dr. Goldberg now wants SSRI's to be the next step in ph's

treatment.Turns out that to increase blood flow in ph's brain,

SSRI's are the way to do it. I've done enough research on SSRI's to

know I don't want ph on them, to me, it's like last spring when

the Doctors at UCLA wanted ph on year round antibiotics, and were

giving him vaccine after vaccine. Maybe it's just that I know only

enough to be dangerous. I'm scared.

> The kicker is that seeing my reaction, Dr. Goldberg quickly pawned

me off on his nurses, to answer my next questions. I relayed what I

knew with regards to SSRI's, and I know at least a year on these

things is the norm. Now wait a minute here. A year? What happened to

our 4-6 months and we'll have a cured, healthier, non-autistic

symptomatic ph? With no meds? Turns out we need immune modulators

for that, and they aren't even done with the clinical trials yet,

much less on the FDA's notoriously slow list of meds. to be approved.

> Turns out, these hundreds of children that Dr. Goldberg has " cured "

are still on these meds. to a small degree. Only a handful have

walked away better without continuously needing the meds. Are they

socially adjusted? You bet. Getting good grades? Yes. Exhibiting

Autistic like symptoms? Of course not. Having dietary issues? Nope.

But they are still taking these SSRI's. And of course most who stop,

for whatever reason, see a regression in all improvement.

> So, turns out my idea of " cured " and his idea of " cured " are two

different things. All the research I did on this, well, when I read

the word " treated " I took it as past tense, turns out it was meant

present tense.

> A side note is, the blood tests show ph is having allergic

reactions, turns out those food challenges he told us were okay,

weren't okay. Despite not seeing any red ears, or behavioral issues

from Cheerios and bagels, some of our challenges, we apparently need

to go back to the GFCF diet for the most part. Except oats. Oats I

had introduced prior to his initial blood workup from Dr. Goldberg,

and that one said ph was doing great and showing no food

reactions. Thank God for the enzymes, because without them we'd still

be eating plain chicken and rice and drinking only water.

> I've a lot of reading to do now, it's very hard because I don't

understand a lot, and then have to keep in mind, much of what is in

print is outdated, and some of what is printed isn't true. There's

one more piece in this puzzle. I'm either going to find it, or die

trying.

> An irrelevant but painful side note is we had planned on having

another child next year. We thought, if ph's issues were gone,

and I'd taken this medication to also get rid of this virus, we'd be

able to have more children. I'm just so angry right now. Any advice

would be appreciated. Thank you.

>

>

>

[Guest guest]

>We thought, if ph's issues were gone, and >I'd taken this medication to

also get rid of >this virus, we'd be able to have more children. >I'm just so

angry right now. Any advice would >be appreciated. Thank you.

Can't give you any advice , but I really feel for you and am praying for

you. You know you WILL get there, you know that. You are a huge blessing to

ph and you will find the piece in the puzzle that you still need.

Prue

[Guest guest]

> Dr. Goldberg now wants SSRI's to be the next step in ph's

treatment.Turns out that to increase blood flow in ph's brain,

SSRI's are the way to do it. I've done enough research on SSRI's to

know I don't want ph on them, to me, it's like last spring when

the Doctors at UCLA wanted ph on year round antibiotics, and were

giving him vaccine after vaccine. Maybe it's just that I know only

enough to be dangerous. I'm scared.

From what I read from other parents, Dr. Goldberg's protocol is

basically the same for each child, and he believes it is the ONLY way

to treat autism. So SSRI's are the next step, and he believes they

are required. If a parent indicates hesitation, then he really has no

other options. Plus he probably does not like being questioned.

But any doctor that would want to go against the wishes of the parent,

and treat you the way you indicate when you disagreed or questioned

him, I would not recommend you continue to trust him or see him. I

know it is difficult when you have seen improvement, but perhaps you

can find another doctor who would be willing to " take over " with other

interventions you have found helpful for your son, and not require the

interventions/medications you disagree with.

Good luck.

Dana

[Guest guest]

Thank You.

Re: ph Update

> Dr. Goldberg now wants SSRI's to be the next step in ph's

treatment.Turns out that to increase blood flow in ph's brain,

SSRI's are the way to do it. I've done enough research on SSRI's to

know I don't want ph on them, to me, it's like last spring when

the Doctors at UCLA wanted ph on year round antibiotics, and were

giving him vaccine after vaccine. Maybe it's just that I know only

enough to be dangerous. I'm scared.

From what I read from other parents, Dr. Goldberg's protocol is

basically the same for each child, and he believes it is the ONLY way

to treat autism. So SSRI's are the next step, and he believes they

are required. If a parent indicates hesitation, then he really has no

other options. Plus he probably does not like being questioned.

But any doctor that would want to go against the wishes of the parent,

and treat you the way you indicate when you disagreed or questioned

him, I would not recommend you continue to trust him or see him. I

know it is difficult when you have seen improvement, but perhaps you

can find another doctor who would be willing to " take over " with other

interventions you have found helpful for your son, and not require the

interventions/medications you disagree with.

Good luck.

Dana

[Guest guest]

Thank You for that.

ph Update

>We thought, if ph's issues were gone, and >I'd taken this medication to

also get rid of >this virus, we'd be able to have more children. >I'm just so

angry right now. Any advice would >be appreciated. Thank you.

Can't give you any advice , but I really feel for you and am praying for

you. You know you WILL get there, you know that. You are a huge blessing to

ph and you will find the piece in the puzzle that you still need.

Prue

[Guest guest]

Hi , thanks for taking the time to update us on your

experiences. It's really helpful.

I found the parts about ph's vision fascinating because I have a

vision condition I never even think about anymore, but I was reminded

about it when reading your post. When I was in junior high I had to

sit right next to the teacher's desk for years because they thought I

had mild dyslexia, or some kind of learning disability, because of

the way I get my numbers and letters mixed up all the time. Never

could do math. FINALLY, an eye noticed that my eyes don't " hold

straight " . They " wiggle " when I'm tired or stressed especially, and

that makes me see things all mixed up. Once the brain registers a

word or group of numbers one way, it will never register it correctly

when you look at it again (unless you are consciously aware that you

may have mixed it up, then you have to concentrate very hard on each

individual character). So anyway, I'm supposed to always have a pair

of glasses to help with intensive numbering and reading, but the

glasses will actually weaken my eyes, so I'm to use them as little as

possible. Those overhead compartments would have driven me BONKERS,

especially if I were overtired. First I would have seen them open,

and my brain would have registered them open. Then when I would have

looked at that long bland row of closed compartments, two things

would be working against me. First, my eyes would be jumping all

over the place because there's no one thing to focus on, and second,

my brain would want them open cuz that's the way it registered them

the first time.

I think you've had ph's vision checked before, but maybe

this " eye jumping " thing might be worth mentioning at some point?

When my parents understood what was happening, they could finally

notice when my eyes jumped, if they looked hard enough, long enough,

at the time it happened (not easy). Maybe you can even see ph's

eyes jump if you watch long enough? It happens to me the most when I

try to read in bad lighting...

Well, sorry for the rambling, but hope that might help in some way.

My best to your little ph.

> Hi Everyone.

[Guest guest]

Thank you much. The ophthalmologist we use specializes in this problem, and she

prescribed some special glasses that actually make his eyes work harder, she is

the one that initially formally confirmed that although he has 20/20 vision he

can't sustain his focus. I wanted the rod dysfunction addressed though, which is

what Dr. Megson is doing. You are completely right about the misdiagnosed

learning issues. Dr. Megson told us that if ph was old enough to be reading,

he'd be diagnosed dyslexic. We use picture books, and find that if we point to

the appropriate picture, he gets it all wrong, but if we give him time, lots of

light and don't point, he can track the appropriate pictures, although even

here, not always in the right order. Plus, he goes so slow, I'm not sure he gets

the benefit of the " story " taking place. Dr. Megson describes it as the picture

in the mall, you know, those pictures made up of hundreds of little squares, and

you have to step back to " see " the picture. Yeah, that's what ph has to do

everyday. Unless of course it's in its' own box, such as the TV or Computer. Dr.

Megson treats some of the parents of the children she sees. She recommended some

stuff for me, but I have too much to do with ph to deal with it now. Good

luck to you, and Thanks again.

Re: ph Update

Hi , thanks for taking the time to update us on your

experiences. It's really helpful.

I found the parts about ph's vision fascinating because I have a

vision condition I never even think about anymore, but I was reminded

about it when reading your post. When I was in junior high I had to

sit right next to the teacher's desk for years because they thought I

had mild dyslexia, or some kind of learning disability, because of

the way I get my numbers and letters mixed up all the time. Never

could do math. FINALLY, an eye noticed that my eyes don't " hold

straight " . They " wiggle " when I'm tired or stressed especially, and

that makes me see things all mixed up. Once the brain registers a

word or group of numbers one way, it will never register it correctly

when you look at it again (unless you are consciously aware that you

may have mixed it up, then you have to concentrate very hard on each

individual character). So anyway, I'm supposed to always have a pair

of glasses to help with intensive numbering and reading, but the

glasses will actually weaken my eyes, so I'm to use them as little as

possible. Those overhead compartments would have driven me BONKERS,

especially if I were overtired. First I would have seen them open,

and my brain would have registered them open. Then when I would have

looked at that long bland row of closed compartments, two things

would be working against me. First, my eyes would be jumping all

over the place because there's no one thing to focus on, and second,

my brain would want them open cuz that's the way it registered them

the first time.

I think you've had ph's vision checked before, but maybe

this " eye jumping " thing might be worth mentioning at some point?

When my parents understood what was happening, they could finally

notice when my eyes jumped, if they looked hard enough, long enough,

at the time it happened (not easy). Maybe you can even see ph's

eyes jump if you watch long enough? It happens to me the most when I

try to read in bad lighting...

Well, sorry for the rambling, but hope that might help in some way.

My best to your little ph.

> Hi Everyone.

[Guest guest]

that's great news!

< For those that want to increase GSH with foods, fresh fruits and

vegetables, eggs, milk, cheese and whey protein work, of course these are

all things many of our munchkins can't eat.>

Re the glutathione, our son had lower levels of Glutathione on testing and

to check if this was significant I opted for some IV Glutathione treatments.

He showed noticeable improvement in speech and focus after the first

session, similar to the random improvemnts we had seen during ALA days on

chelation, but this time the effect was more and lasted longer. We went for

IV to bypass the digestive system to get a definite assessment of effect of

the glutathione. He is having it weekly for 6 weeks then we will space out

and wind down. We have started whey protein concentrate which is 100% casein

free. Check with manufactures as some add in skim milk which then of course

includes casein. We give it mixed with 200mls water, banana or strawberry

(with No fenol), 3tbsp almond or hazelnut meal and sometime add 1tbsp

lecithin, sunflower & almond mix. Occasionally I add a tbsp of soy icecream.

He has this every morning and we plan to increase it to after school soon as

well. His stamina is also increasing and he can run faster at basketball and

stayed on court for almost a whole game on Friday without fatigue and was

" reading the game " better than he ever has.

I have recently seen videos of Dr Goldberg and I think he has some good

stuff about viral involvement but I am not prepared to do SSRIs either. We

have had viral serology done recently.. awaiting results, and have just

started on Lauricidin as a general antiviral. I'm sure that between all the

info and experience around here we can come up with a more natural but very

effective protocol. I would love to boost natural Vit A, but my son is

currently on medication for cystic acne that prevents this. Dana's results

from daily ALA and Vit A are very encouraging.

Please keep posting how ph is going and how you modify the treatment as

he goes along.

Thanks

Fran

Melbourne

Australia

[Guest guest]

You go there, cry, and then come out the other side. I didn't go there till

earlier this year, 4 years after Sam's Dx. You HAVE to still believe, the

alternative is to hard to bear.

Mandi in UK

> Dr. Megson's acknowledgement of the issues, gentle protocol, and realistic

> projections have done what no one else and nothing else has done, it's made

> me acknowledge that there is a possibility ph may never function at a

> neurotypical level. How do you acknowledge the awful and still work towards a

> miracle?

>

[Guest guest]

Thanks much. I'm excited about your progress. Dr. Megson suggested we continue

to stay gluten free, one of the tests for celiac's came back low positive, not

sure yet what that means. I've yet to receive all the test results, much less

analyze what they mean. Perhaps in the future we too will use whey with AFP pep.

and some Zyme. We've been off Valtrex for almost a week now, we've been

substituting the monolaurin as the antiviral, but I must confess, his

enunciation has suffered terribly and the drooling is back. I too want the

increased stamina and strength. Slowly, ever so slowly we go now. May I also

confess I've sunk somewhat into a funk. I'm excited by Dr. Megson, but her

answers are what I expected of Dr. Goldberg, you know, a few years and we'd be

there. That whole " cure " thing and 4-6 mo. time period, it was too much, I know.

But usually it only takes a day or two for me to get over one of these Doctor

visits. I've been sleeping and moping about, it's terrible. My husband has been

incredibly understanding. He has taken over, supplements, entertaining, getting

ph out of the house for periods of time for me to do all the things I

" need " to do but don't have the time to do with all the reading and research. So

what in the heck is my problem. God has answered my prayers, and I know ph

will heal in time, so why am I unable to jump back into my regular routine. Is

it possible that this time not only has the protocol changed, but I've changed

as well? Dr. Megson's acknowledgement of the issues, gentle protocol, and

realistic projections have done what no one else and nothing else has done, it's

made me acknowledge that there is a possibility ph may never function at a

neurotypical level. How do you acknowledge the awful and still work towards a

miracle?

Re:ph Update

[Guest guest]

Thank you for that. There's not a single person I know personally that could say

that to me and make me feel better. Sam is very lucky to have you. I'm glad you

can honestly tell me there is an " other side " . In my heart I know it, but in

this funk/depression, I just needed someone to say it.Thank you for being that

someone. Re: Re:ph Update

You go there, cry, and then come out the other side. I didn't go there till

earlier this year, 4 years after Sam's Dx. You HAVE to still believe, the

alternative is to hard to bear.

Mandi in UK

> Dr. Megson's acknowledgement of the issues, gentle protocol, and realistic

> projections have done what no one else and nothing else has done, it's made

> me acknowledge that there is a possibility ph may never function at a

> neurotypical level. How do you acknowledge the awful and still work towards

a

> miracle?

>

[Guest guest]

Why can't you keep him on the Valtrex for a while?

Re:ph Update

[Guest guest]

May I venture to say neurotypical is over rated?

I don't want to be NT and I'm not the only one.

Don't worry about the final outcome. Concentrate on today.

P

> Dr. Megson's acknowledgement of the issues, gentle protocol, and

realistic projections have done what no one else and nothing else has

done, it's made me acknowledge that there is a possibility ph may

never function at a neurotypical level. How do you acknowledge the

awful and still work towards a miracle?

[Guest guest]

Dr. Megson's acknowledgement of the issues, gentle protocol, and

realistic projections have done what no one else and nothing else

has done, it's made me acknowledge that there is a possibility

ph may never function at a neurotypical level. How do you

acknowledge the awful and still work towards a miracle?

,

Your challenge is to continue working towards the miracle - the one

you have been working for all this time, regardless of doctor or

protocol or procedure or dose. The sadness is understandable, the

sense of possible futility is understandable. You've been able to

live because of your hope for major change for ph. Maybe the

gentle and conservative care of Dr Megson has lead you to

temporarily lose hope. It's odd how sadness can creep in when the

fire in our bellies isn't fuelled by anger at incompetence/

arrogance/rudenss/etc.

Take care of yourself and give yourself space to feel the pain of

loss, even if it is only a POSSIBLE loss. It's okay. Besides, from

reading your posts, you have shown your strength and willingness to

face a battle. Yes, another one.

You will be in my thoughts. Please post again soon.

Jaci, Australia

[Guest guest]

Thank you. It's sad, but yes, anger has been part of my fuel. God has really

blessed us, I'm hoping he will bless me by replacing the anger with strength. We

pray for ph's recovery all the time, but now my husband and I pray together,

I can't remember the passage, but in the Bible it says, where ever there are

two, your voices will be heard. Maybe it's just the miraculous of two very

flawed humans getting together and agreeing on anything long enough to pray for

it.

I got up today, did everything, or mostly everything I set out to do, so, today

has been a good day, but your encouragement makes it an even better one. Thank

you.

Re:ph Update

Dr. Megson's acknowledgement of the issues, gentle protocol, and

realistic projections have done what no one else and nothing else

has done, it's made me acknowledge that there is a possibility

ph may never function at a neurotypical level. How do you

acknowledge the awful and still work towards a miracle?

,

Your challenge is to continue working towards the miracle - the one

you have been working for all this time, regardless of doctor or

protocol or procedure or dose. The sadness is understandable, the

sense of possible futility is understandable. You've been able to

live because of your hope for major change for ph. Maybe the

gentle and conservative care of Dr Megson has lead you to

temporarily lose hope. It's odd how sadness can creep in when the

fire in our bellies isn't fuelled by anger at incompetence/

arrogance/rudenss/etc.

Take care of yourself and give yourself space to feel the pain of

loss, even if it is only a POSSIBLE loss. It's okay. Besides, from

reading your posts, you have shown your strength and willingness to

face a battle. Yes, another one.

You will be in my thoughts. Please post again soon.

Jaci, Australia

[Guest guest]

Thank You. I just discussed this very thing today. I guess I just want ph to

have the " choice " of whether or not he fits in. If I could just get him to the

level he was at the day he was born, prior to all the toxic insults he received,

I would be happy. This problem has blessed us with a prolonged baby and toddler

phase, but it has also hurt us with a prolonged baby and toddler phase. I will

concentrate on today, your advice is excellent. I read something, I think I'll

embroider it in my free time, ( ha ha ha). " Yesterday is History, Tomorrow is a

Mystery, Today is a Gift, that is why it is called the Present. "

Re:ph Update

May I venture to say neurotypical is over rated?

I don't want to be NT and I'm not the only one.

Don't worry about the final outcome. Concentrate on today.

P

> Dr. Megson's acknowledgement of the issues, gentle protocol, and

realistic projections have done what no one else and nothing else has

done, it's made me acknowledge that there is a possibility ph may

never function at a neurotypical level. How do you acknowledge the

awful and still work towards a miracle?

[Guest guest]

Dr. Megson is interested in using the Monolaurin as a gentle antiviral, and we

get to reintroduce the Ojibwa tea. The Valtrex posed a couple of problems. The

first being Dr. Goldberg will not continue to treat my son, unless we agree to

follow his protocol. Hence our supplier of the Valtrex prescriptions. I'm sure

we can ask Dr. Megson to give us the prescription, but she shared my recent

belief that perhaps the virus is " hiding " behind the mercury in my son's body.

Our active levels haven't gone down at all, and he's been on the Valtrex for 6

mo. The real point of the Valtrex is to give the immune system a small amount of

breathing room so that it can effectively form its' own antibodies to the virus.

We will concentrate on healing the gut ( 60% of the immune system is located

there), and continue with our gentle antiviral treatment. My last problem with

the Valtrex, no one to monitor the blood work any longer. Valtrex is great for a

portion of this issue, no doubt in my mind. We've not seen any of the Obsessive

Compulsiveness return, but he's only been off of it for a few days.-----

Original Message -----

From: jennifer thompson

Sent: Monday, December 15, 2003 7:07 PM

Subject: Re: Re:ph Update

Why can't you keep him on the Valtrex for a while?

Re:ph Update

[Guest guest]

In a message dated 12/15/2003 2:19:46 PM Mountain Standard Time,

Mum231ASD@... writes:

> . Megson's acknowledgement of the issues, gentle protocol, and realistic

> >projections have done what no one else and nothing else has done, it's made

>

> >me acknowledge that there is a possibility ph may never function at a

> >neurotypical level. How do you acknowledge the awful and still work towards

> a

> >miracle?

> >

>

>

>

Why did she think that?

Pam

[Guest guest]

I disagree , its about being a mother and the one you are referring to

has done heaps of research on all she does for her child. There are some

things men just don't get, spectrum or no spectrum

Mandi in UK

> " and so this couple of weeks of depression for me was really

> unnerving.'

>

> thats to long and symptomatic of neural and metals retention issues

>

> because you have placed your faith in doctors rather than developing

> youe own knowledge and experience you are increasingly

> vulnerable..........

>

[Guest guest]

Dr. Megson told us what her expectations were for ph and what her hopes were

for ph. She told us her current statistics, and so was realistic with us

about the potential outcomes. She was not negative in any way, but that is what

struck such a chord with me, it sounded realistic. I've been " unrealistic "

according to all the specialists we'd thus far consulted ( prior to Dr.

Goldberg). I was so determined I never once allowed myself doubt. But after

years of fighting, I for a moment or two acknowledged the possibility ph

might not completely " catch up " . That made me really sad. But, I'm over it now.

This group was really wonderful. Very encouraging, and let me vent without

judging me. I'm normally a very positive person ( my shrink called me a little

bulldog, and told my husband he thought I would recover my son through sheer

dint of will), and so this couple of weeks of depression for me was really

unnerving. So no, it wasn't anything Dr. Megson said that was negative, just my

doubts calling on me. Dr. Megson said about 5% of her kids recover completely

after treatment. 48% measurably improve and the remainder go unchanged, due to

issues she has yet to diagnose or have the ability to resolve.

Re: Re:ph Update

In a message dated 12/15/2003 2:19:46 PM Mountain Standard Time,

Mum231ASD@... writes:

> . Megson's acknowledgement of the issues, gentle protocol, and realistic

> >projections have done what no one else and nothing else has done, it's made

>

> >me acknowledge that there is a possibility ph may never function at a

> >neurotypical level. How do you acknowledge the awful and still work towards

> a

> >miracle?

> >

>

>

>

Why did she think that?

Pam