Re: discouraged

[Guest guest]

We've been seeing Dr. G for a year and a half in December and we haven't

seen much either. Just lots of sleepless nights and urine on the carpet,

ripped off wallpaper (OCD like behavior) on the SSRIs and a seizure like

event on zoloft.. I'm not sure how much longer to give the protocol. We've

tried about everything without success ( except ABA which has done wonders,

including to teach my 6 year old nonverbal child to type on assistive

technology, to read) and so I hate to give up on what I thought was our last

hope.

Discouraged

> We've been seeing Dr. Goldberg since July and have seen no

> improvements to speak of so far. I know it is still early in his

> treatment as Dr. Goldberg moves very slowly, but I can't help feel

> discouraged. I've read about so many positive results that I'm

> worried my son will be lumped into the category known as the " tough

> ones. " Has anyone else been in a similar situation?

> With the lab results we got back we should be seeing at least

> something. Any feedback would be appreciated.

>

>

>

>

>

> 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]

Unfortunately these kids are not all the same. There are probably 4 subgroups

of children. This needs to be researched. Dr. G has had two kids that did not

respond for two years and then the light bulb was turned on! Are you

following the blood work? Is the immune system healing? For some children the

damage is great and will take a longer time. Some kids need the immune

modulators. These drugs exist but have not been researched on children yet.

Dr. G and the rest of the Research Institute are trying to get funds to do

this. It costs about 750,000.00 to run a research study. The goal is to prove

that a drug does what you think it will do safely and then get FDA approval

so that you can use it. As long as we don't have the money to do the research

to get the drugs to use, some of these kids will not make the kind of rapid

recovery that we would all like to see. On the other hand if you stop the

protocol the harder to treat children will never have a chance. Kathy -NNY

[Guest guest]

,

Your disappointment is understandable. We have been seeing Dr. Goldberg for

six years now and have seen fabulous results OVER TIME. Before we started

with Dr. Goldberg, we were told that it was possible that our son may have

to be institutionalized. Hence, he wasn't going to be an easy case per se.

At first, it was difficult to see any real changes and like you, I had my

doubts early on as well whether this would be an effective intervention for

my son. But slowly we began to see small (at times, almost imperceptible)

changes and as time passed, momentum and progress grew, and grew beyond

anyone's belief.

If you've only been seeing Dr. Goldberg since July, it is quite likely that

your child is still in that embryonic stage where his body is just beginning

to address the dysregulation it has been living with for awhile. This type

of healing takes time; more time than many of us have the patience for.

Also, no two children with are quite the same. Hence, it takes some

additional time for those who may have unique manifestations of the disease

to see results.

Hold on to your hope! Your child needs you to hang tight while his body

slowly begins to heal. And when your spirit gets low, write or call someone

who you can share your feelings with, because you are not expected to be

perfect or be unfailingly " up " . This disease and healing process affects us

as parents too! We have the need and right to our own feelings as well.

Hang in there !!!

Pat Koltun

Discouraged

> We've been seeing Dr. Goldberg since July and have seen no

> improvements to speak of so far. I know it is still early in his

> treatment as Dr. Goldberg moves very slowly, but I can't help feel

> discouraged. I've read about so many positive results that I'm

> worried my son will be lumped into the category known as the " tough

> ones. " Has anyone else been in a similar situation?

> With the lab results we got back we should be seeing at least

> something. Any feedback would be appreciated.

>

>

>

>

>

> 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]

Dear Pat ~

Very well put ! I couldn't agree

with you more. My daughter was

7 years old when she began treatment

with Dr. Goldberg and now she is 9 and

we see results happening slowly... but

we try to look forward to the positiveness

that her body is healing and we are closer

than ever. The older the child is the longer

the child's immune system has been in a

dysfunctional state. We all need to stay

close and support one another through

these tough times, but hopefully all our

prayers will be answered when Dr. Goldberg

could begin trials with these NEW IMMUNE

MODULATORS.

Michele Davies

[Guest guest]

Michele,

Hi My name is . My son is 6 years old. He will be 7 next

February.

I haven't filled my paperwork out yet. ly I don't know if I'm going to.

Do you mind me asking how your child's symptoms were before you started

with Dr. Goldberg? What progress have you seen in two years? Could you be

more specific? Older children don't recover very fast according to all the

posts.

My son is verbal and has been for over three years. He talks in complete

sentences

and asks questions. Basically it all centers on his needs and wants. He does

not converse in regular conversation that " normal " 6 year olds do. He does

speak

spontaneously at times but not like other children his age.

Any response by anyone who started with Dr. Goldberg when their child

was

6 or older would be appreciated. Listening to all the negative side effects

that

these children experience with these drugs is really scary. My son does not

have any real behavioral difficulties. If he was to become upset and

agitated

this might really set my husband through the roof. And then to go through

this

protocol and have no positive changes, well I just don't know if it is worth

it.

[Guest guest]

,

My daughter, Lindsey was in physical pain practically every day of her life,

until Dr. Goldberg looked at her blood results and saw what was occurring

internally in her body. She would literally go into fits; hitting,

screaming, kicking walls and hurting herself and others, sometimes for up to

several hours at a time ! Initially I thought it was a psychosis. (From

what I have been told about this so-called lifetime disorder-Autism.)

Thankfully I have a wonderful supportive family, Lindsey's grandparents. We

did not accept this so-called autistic, damaged-good child diagnosis. It was

simply a diagnosis written at great lengths using terminology that I had to

literally have a dictionary opened to understand, and lastly a huge bill

attached with no logical, reasonable explanation as to why my child was the

way she was. This went on for years, until my mother found Marcia Hinds on

the Internet, who was describing the success her son was having.

Since my daughter Lindsey has been on Dr. Goldberg's protocol, she has and

continues to progress much like a regular child. She is doing far more than

any physician ever said she would be doing. She is now starting to talk-

even in small sentences, spontaneously, repeating words, reading from toddler

level, kindergarten level books and completing CD ROMs at such levels as

well. Some even independently ! : ) She makes eye-contact, she is

bright-eyed, alert, happy, laughs appropriately, understands at least 80-90%

of what is being said around her and listens, observes and lastly imitates.

A large way our children learn and grow !

Due to Dr. Goldberg's findings and dedication as a pediatrician, he has given

my daughter a chance at living and developing; as all children should have

this opportunity in life. Yes, there were dye-off periods, yes, there is

continual patience needed, no, we are far from Marcia Hinds success story,

but there is hope for my little girl and the only risk, which is a very small

one is the side effects from the medication. But I would much rather have

the viruses dead by this appropriate medication, than have them attacking and

eating her brain. And these medications are keeping her from living in

isolation, totally spaced and oblivious from the world around her.

If you have seen this child before she started Dr. Goldberg's protocol ...

there would be no question as to what was the correct thing to do. Our

children have a right to live a normal life and any parent who does not give

them that right is doing an injustice.

Dr. Goldberg's findings are accurate, proven and completed using science,

blood tests, NeuroSpect scans and examinations. It is really tragic that Dr.

Goldberg's research and group of other physicians are not " Worldly "

recognized as having the knowledge and expertise to treat our children and us

as parents falling into this

" Neuro-Immune Dysfunctional Syndrome " !

Any parent who finds Dr. Goldberg and makes effort to see him should be

grateful because there are millions of kids out there we have lost and will

continue to lose due to this epidemic across our nation and other nations.

Please don't take offense, I just have a real sensitivity to all the children

out there who need more doctors like Dr. Goldberg.

Michele Davies

[Guest guest]

I'm in the same boat. My son has been seeing Dr. Goldberg since May and has

had little turn around. He receives 18 hours a week of Discreet Trial Training

therapy, 1 hour speech, 1 hour OT, and has an aide at school. But despite his

slow progress, he has progressed. About a month ago I was ready to give up too

because my son had grown so aggressive and violent. I keep going and spending

the money because I sincerely believe that there is a medical side to Autism

that should not be left untreated. If anything our children will be healthier

in the longrun and better equipped to handle the onslaught of daily germs and

viruses they come in contact with everyday.

I've been sick these last two weeks and have only been able to function at

50% of my usual capacity. Imagine if we were ill all the time and not able to

tell anyone how we feel or what is hurting!

As I said before any progress is still progress. Sometimes I allow myself

to get depressed by what my son is not able to do. I have to remember what he

has accomplished and what he is capable of doing now. One thing you could try

is keeping a diary of your child's progress. Write down anything the least bit

positive. In time you'll be able to see that slowly but surely your child is

getting better. When my son first started speech therapy at the age of 2 his

therapy notes said almost nothing. At the end of a year his notes were filled

with positive progress, but it took a full year to be able to see the

difference. I read posts from other parents that say it took 3-4 years for

their children to recover, and I think I won't be able to last that long. Three

to four years from now I'm sure I'll be able to say it was worth it.

Adrienne, Mom to

, (7) PDD-NOS

, (5) Autism

Lorna, (2) Developmentally delayed, Undiagnosed

[Guest guest]

Michele,

I'm so glad that Dr. Goldberg has helped your daughter. From your earlier

post it seemed like the progress was minimal for two years of treatment.

Thank

you for clearing that up for me. I'm so glad your daughter has responded so

well to the protocol.

[Guest guest]

In a message dated 10/23/02 9:38:47 PM Central Daylight Time, isoaa@...

writes:

> My daughter, Lindsey was in physical pain practically every day of her life,

> until Dr. Goldberg looked at her blood results and saw what was occurring

> internally in her body.

Thanks for sharing your daughter's progress. So wonderful to hear. I am

curious to know what Dr. Goldberg found in her blood results that was tied to

the pain she was experiencing? I know every child is different but I've

worked with a few kids that really seem to be in pain and recall my son

complaining of pain in the past and would like to hear more about what

specifically was found in your daughter's blood work and how Dr. Goldberg

treated it if you don't mind sharing more.

Gaylen

[Guest guest]

,

Interesting that you noticed a change off the med but not one on it. There

have been a few things we've done with my son now that he's older that were

extremely subtle and built over time, so much so that we didn't really notice

changes until we stopped the supplement or treatment. I've found this to be

more the case now that he's older (just turned 11) and higher functioning.

I have also heard others on the protocol say they didn't really fully

grasp how much the meds were helping until they removed them. Maybe with

some kids the effect is gradual and building and you'll have to look really

close to see the benefits.

On the flip side, I've recently heard about worsening effects or strange side

effects when people try to wean off or stop some SSRIs. I've especially

heard this about Zoloft. In these cases, it took several months to wean the

person off the med before they could go without it and the negative effects

were often new ones never seen before rather than return of old symptoms. Is

it at all possible that this could be happening with the anti-virals? That

does seem less likely but something to understand before starting a drug if

it is a possibility.

Gaylen

[Guest guest]

,

I am one of those who started their child (a son) on the protocol at a later

age. He was 6 years 11 months when he started the meds. My heart goes out

to Michele and others like her who are feeling frustrated. I wish all of

the kids would have great responses. We were very fortunate to have

excellent results (increased focus, decreased anxiety, less " obsessing " over

things, better social understanding, great gains in large motor skills, and

even muscle tone seems to have normalized (he was hypotonic). He is not

completely " healed " , but so much better than he was 9 months ago.

Best of luck to you in what you decide... I went through this torment of

deciding just over a year ago, and I remember how stressful it was.

Caroline

> On 10/23/02 5:41 PM, " lmikesch8@... " <lmikesch8@...> wrote:

> Michele,

> Hi My name is . My son is 6 years old. He will be 7 next

> February.

> I haven't filled my paperwork out yet. ly I don't know if I'm going to.

> Do you mind me asking how your child's symptoms were before you started

> with Dr. Goldberg? What progress have you seen in two years? Could you be

> more specific? Older children don't recover very fast according to all the

> posts.

> My son is verbal and has been for over three years. He talks in complete

> sentences

> and asks questions. Basically it all centers on his needs and wants. He does

> not converse in regular conversation that " normal " 6 year olds do. He does

> speak

> spontaneously at times but not like other children his age.

> Any response by anyone who started with Dr. Goldberg when their child

> was

> 6 or older would be appreciated. Listening to all the negative side effects

> that

> these children experience with these drugs is really scary. My son does not

> have any real behavioral difficulties. If he was to become upset and

> agitated

> this might really set my husband through the roof. And then to go through

> this

> protocol and have no positive changes, well I just don't know if it is worth

> it.

>

>

[Guest guest]

Kathy,

Can you describe these 4 subgroups? Thanks in advance. Kathy

[Guest guest]

,

I don't know whether my son's experience and issues are close enough to your

son's, but I'd be happy to offer a perspective that I feel qualified both

personally and professionally to offer you.

First, from a personal perspective: Our son was 5 years and three months

when we first saw Dr. Goldberg. He was clearly significantly more impaired

from a communication and self-regulatory standpoint than your son is.

Six years later, this same child is in a regular sixth grade classroom

earning top grades in all his classes with no accommodations to the

curriculum or grading. Luck ? NO!!!!!! Hard work and effective MEDICAL

protocol that, with its ups and downs, has meant that he will face a much

brighter, independent and meaningful life than had we listened to every

other pediatrician, pediatric neurologist, psychologist, and the host of

therapists EVER THOUGHT WOULD HAVE BEEN POSSIBLE!

Now, from a professional perspective (learning disabilities clinician and

doctoral student in clinical psychology): You mention that is verbal

and does not have behavioral issues. Those are both wonderful

skills/attributes for a six year-old. Yet, you also allude to suspected

impairments in social conversational skills. At his

developmental/chronological stage, it is appropriate for you to have some

amount of concern about this. Does have a diagnosable condition? Only a

qualified medical or psychological professional can assess that. I'd offer

that Dr. Goldberg is a superb professional that understands the nuances of

the spectrum of developmental and medical disorders better than any other

professional (medical, psychologist, psychiatrist, neurologist, professor) I

have ever met! And we've traveled all over this country and seen the

nation's finest - no one, in my opinion, has the extensive experience,

insight, nor clinical success that Dr. Goldberg has. Does that mean that

there aren't patients that haven't been successful? Of course, that is true.

But it is equally true that these children are the exceptions. And it

saddens me deeply for those whose children have not benefitted tremendously

from this intervention. But, as with all things in life, a perspective is

what is needed. Most benefit, some don't; the protocol has to be customized

to a certain degree for each child and adjustments are made as you go along.

Not once in six years of work with Dr. Goldberg has my son ever suffered any

damage or incurred any risk - medical or emotional. In fact, his local

pediatrician is always amazed at how healthy he is.

And speaking of risk, you must ask yourself, what is the risk of not

responding to your concerns about ? IF, and I really do mean, " if " there

is a developmental issue present, it will most likely not go away. Rather,

over time, in school-related activities and elsewhere, its impacts will

manifest and possibly become more complex, and more difficult to treat. To

be specific, his learning, quality and quantity of social relationships, and

self-esteem are all put at risk. has many things working for him. But a

six year old needs his parent(s) to acknowledge the full picture of who he

is and what he needs and act upon their concerns. You already know this but

I reiterate here because we all need affirmation that even when we as

parents have questions or concerns, we still need to act, even if only to

inquire further. Ultimately, we each are responsible for the choices we make

on behalf of our children. You need, and have the right to, live in peace

with whatever decisions you make on behalf of . But as for risk, its

always part of the picture. Answer this for yourself: What is the greater

risk for ? Pursuing the protocol or staying the course?

Pat

Re: Discouraged

> Michele,

> Hi My name is . My son is 6 years old. He will be 7

next

> February.

> I haven't filled my paperwork out yet. ly I don't know if I'm going

to.

> Do you mind me asking how your child's symptoms were before you started

> with Dr. Goldberg? What progress have you seen in two years? Could you

be

> more specific? Older children don't recover very fast according to all

the

> posts.

> My son is verbal and has been for over three years. He talks in complete

> sentences

> and asks questions. Basically it all centers on his needs and wants. He

does

> not converse in regular conversation that " normal " 6 year olds do. He

does

> speak

> spontaneously at times but not like other children his age.

> Any response by anyone who started with Dr. Goldberg when their child

> was

> 6 or older would be appreciated. Listening to all the negative side

effects

> that

> these children experience with these drugs is really scary. My son does

not

> have any real behavioral difficulties. If he was to become upset and

> agitated

> this might really set my husband through the roof. And then to go through

> this

> protocol and have no positive changes, well I just don't know if it is

worth

> it.

>

>

>

>

>

> 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]

In a message dated 10/24/02 1:31:48 PM Eastern Daylight Time,

liamcbuckley@... writes:

>

>

>

> Kathy,

> Can you describe these 4 subgroups? Thanks in advance. Kathy

>

>

Kathy,

No I cannot because it is something that has not been studied. I think it

will be a matter of categorizing people by what cytokines are malfunctioning.

Kathy -NNY

[Guest guest]

In a message dated 10/24/02 4:35:47 PM Central Daylight Time,

JOSKAT95@... writes:

> No I cannot because it is something that has not been studied. I think it

> will be a matter of categorizing people by what cytokines are

> malfunctioning.

> Kathy -NNY

>

Are there plans to study this in the future through the group? That

would be very interesting.

Gaylen

[Guest guest]

* In a message dated 10/24/02 4:35:47 PM Central Daylight Time,

JOSKAT95@... writes:

No, I cannot because it is something that has not been studied. I think it will

be a matter of categorizing people by what cytokines are malfunctioning.

Kathy -NNY

** In a message dated 10/25/02 1:22:51 AM Eastern Daylight Time,

googahly@... writes:

Are there plans to study this in the future through the group?

_____________________

Studying cytokines, chemokines, etc., is where most of the research in the

immune system has been going for the past few years. Thank the Lord, because

all of the auto immune diseases seem to be reaching epidemic levels. Just

watching the asthma statistics is scary.

Kathy -NNY

[Guest guest]

my son's progress is sort of slow too, but, progress none the less! my son

is probably one of those who may take a while longer. i believe it depends

upon the child's own body chemistry. they are all different. even with

little progress, i hold fast to that and joy comes with each baby step.

though baby step.....it's still a step and a step ahead not backward.

hang in there. ive learned to not rush this " treatment " . my son didnt

develop autism overnight......with him, it was very slow and gradual decline

(regressive autism).

stay determined to do whatever is in your power to help your little one!

vicki in los angeles

[Guest guest]

I have been reading messages with encouragement and they made me feel much

much better - even though I do not feel discouraged ...yet, but starting.

We have seen dr. G in May and started treatment in June. The changes are so

small that sometimes I thing that it is my wishfull thinking to see the

changes. We did all of the blood work and all of it came back absolutely

normal. I still do not know if all our efforts are a shot in the dark or we

are really going somewhere. Did somebody see improvements after being on

the treatment even if the blood work was absolutely normal? Did somebody's

child's blood work ever came normal or everybody saw some abnormalities at

first?

>From: vickila1@...

>Reply-

>

>Subject: Re: Discouraged

>Date: Fri, 25 Oct 2002 23:28:28 EDT

>

>my son's progress is sort of slow too, but, progress none the less! my son

>is probably one of those who may take a while longer. i believe it depends

>upon the child's own body chemistry. they are all different. even with

>little progress, i hold fast to that and joy comes with each baby step.

>though baby step.....it's still a step and a step ahead not backward.

>

>hang in there. ive learned to not rush this " treatment " . my son didnt

>develop autism overnight......with him, it was very slow and gradual

>decline

>(regressive autism).

>

>stay determined to do whatever is in your power to help your little one!

>

>vicki in los angeles

>

>

>

[Guest guest]

If all of the bloodwork is absolutely normal, then what is your child being

treated for? How is he a patient, then? I thought Dr. G. treated kids

based on the bloodwork- if it is all normal, then what are you treating them

for? I understand yeast is hard to test for, and theoretically, you could do a

trial of anti-fungals to see if the child responds, but after that, where do you

go? I don't understand.

How long after you sent in your paperwork did it take for you to get a

phone call from the office to schedule an appt?

We sent ours in almost 2 wks. ago and have yet to hear anything. I've left

messges at the office and no one has called me back. I'm begining to wonder.....

Becky

Re: Discouraged

>Date: Fri, 25 Oct 2002 23:28:28 EDT

>

>my son's progress is sort of slow too, but, progress none the less! my son

>is probably one of those who may take a while longer. i believe it depends

>upon the child's own body chemistry. they are all different. even with

>little progress, i hold fast to that and joy comes with each baby step.

>though baby step.....it's still a step and a step ahead not backward.

>

>hang in there. ive learned to not rush this " treatment " . my son didnt

>develop autism overnight......with him, it was very slow and gradual

>decline

>(regressive autism).

>

>stay determined to do whatever is in your power to help your little one!

>

>vicki in los angeles

>

>

>

[Guest guest]

Bella,

My son's lab work came back " normal " that first time, too. He has made

wonderful progress. At that first appointment, Dr. Goldberg told me that my

son was a complicated case, but that he did expect to help him. Since that

first round of " normal " lab work, there have been things that showed up in

subsequent lab work which have provided clues for Dr. Goldberg to target

medically (such as white blood cells coming back consistently low after that

first time and a consistently high ASO titer (strep). There were also clues

outside of the blood work to consider (such as hypotonia, family history,

etc.).

As you know, it takes a lot of time to start the different meds and get the

dosages up to the desired amount. Dr. Goldberg once told me that, on

average (and barring extreme cases), it takes him about two years to get a

child's brain functioning as he would like it to. That doesn't mean you

won't see an improvement for two years, but it does show that this is a long

process.

There are still areas that I'm concerned about in my son, but I do see an

upward trend and excellent improvement in many areas.

We are in our 9th month of treatment and have tried 5 different meds so far

(at least 3, maybe 4 have proven to be beneficial)... and I know of at least

5 more meds that Dr. Goldberg is considering for future treatment. Each new

med brings a possibility for more gains. I agree that It is hard to measure

improvement. There has only been one time when I was absolutely sure of

what I was seeing right then, and that was because for us the first

anti-fungal was practically an overnight success. Other improvements have

been very gradual and only visible after being able to look at them in

hindsight (such as making a really nice gain in large motor skills in a 6

month period... this became obvious only after charting the results of his

large motor evaluation against the previous six years of data, all evaluated

by the same physical therapist).

One improvement that I would never have known about was that my son has

developed reflexes (the " hit the knee with a hammer " kind)... this was

discovered by a doctor who had followed him for 6 years. I would not have

checked for that, but she did and has since had a great conversation with

Dr. Goldberg and referred another child in her practice for him to see.

I hope that you will see some improvements soon. Best wishes.

Caroline

> On 10/27/02 5:09 PM, " Bella Stipakov " <bellastip@...> wrote:

>

> I have been reading messages with encouragement and they made me feel much

> much better - even though I do not feel discouraged ...yet, but starting.

> We have seen dr. G in May and started treatment in June. The changes are so

> small that sometimes I thing that it is my wishfull thinking to see the

> changes. We did all of the blood work and all of it came back absolutely

> normal. I still do not know if all our efforts are a shot in the dark or we

> are really going somewhere. Did somebody see improvements after being on

> the treatment even if the blood work was absolutely normal? Did somebody's

> child's blood work ever came normal or everybody saw some abnormalities at

> first?

[Guest guest]

Hi Becky.

We just had our first appointment with Dr. Goldberg a few weeks ago. It

took about three weeks to a month for his office to call me, from the time

I sent in the paper work. We got our appointment within about 2 months.

While there were alot of abnormalities in my son's bloodwork, I had been

very concerned that everything might come back " normal " and then what??? I

did ask Dr. G what the kid profile was, and regardless of my sons blood

results, did he fit it? He stated that very clearly, if a child learns to

sit up and walk and even start to talk and either loose that ability or fail

to continue to make progress, he can tell without even the bloodwork that

they have a situation. The bloodwork often helps him to understand the

etiology of the child a little better, but he also looks very closely at the

childs history. He did say that even if all bloodwork does come back

normal, when he does a neurospect scan he can then see more clearly what is

going on and that definitely physical abnormalities show up then. I hope

this helps ease your mind that his office will call and that Dr. Goldberg

looks at our children from many different angles to help figure the puzzle

out.

Lori

Re: Discouraged

If all of the bloodwork is absolutely normal, then what is your child

being treated for? How is he a patient, then? I thought Dr. G.

treated kids based on the bloodwork- if it is all normal, then what are you

treating them for? I understand yeast is hard to test for, and

theoretically, you could do a trial of anti-fungals to see if the child

responds, but after that, where do you go? I don't understand.

How long after you sent in your paperwork did it take for you to get

a phone call from the office to schedule an appt?

We sent ours in almost 2 wks. ago and have yet to hear anything. I've left

messges at the office and no one has called me back. I'm begining to

wonder.....

Becky

Re: Discouraged

>Date: Fri, 25 Oct 2002 23:28:28 EDT

>

>my son's progress is sort of slow too, but, progress none the less! my

son

>is probably one of those who may take a while longer. i believe it

depends

>upon the child's own body chemistry. they are all different. even

with

>little progress, i hold fast to that and joy comes with each baby step.

>though baby step.....it's still a step and a step ahead not backward.

>

>hang in there. ive learned to not rush this " treatment " . my son

didnt

>develop autism overnight......with him, it was very slow and gradual

>decline

>(regressive autism).

>

>stay determined to do whatever is in your power to help your little

one!

>

>vicki in los angeles

>

>

>

[Guest guest]

right now tess, you need to rest and take your meds, drink your fluids and

get better. hang in there and i am so sorry you are so sick. kathy in il

[Guest guest]

Tess you say you are down in x amount of inches, etc. because of your

body strengthening exercises, but you say that somehow that doesn't mean

as much right now...

Well, Tess, you are right... it probably doesn't matter much right now!

BREATHING is what matters right now! But the inches and your hard work,

will later. You are discouraged! Hey girl! You are sick! Call it flu,

the yuck, pneumonia or whatever...you are sick. And it is going around.

Seems we all feel discouraged about.... EVERYTHING when we get sick

with the flu, pneumonia, etc. (even normally healthy people who are NOT

chronically ill)! You just take your meds, and get over this bout of

crud, I did...I was SORELY DISCOURAGED in every aspect of my life I had

it so bad a couple weeks ago! IT WILL PASS~! Just like childbirth! ha!

And if you can go through that.....

I am with you on not wanting to do the pred right now however.... too

many other antibiotic combinations and " options they can try " before

they hang you with that one right now. I believe they tried me on 3

different antibiotics orally last year when I had pneumonia so bad. And

different Antibiotic SHOTS every 2 to 3 days! And FINALLY my OBGYN who

I was seeing for my yearly said, " Hey... it is obvious what they are

giving you is NOT working....I am giving you this Z-pack. " And Tess,

after 3 x's week visits to doctor clinic for the pneumonia for 4 months

and many different antibiotics, that one little bitty Z-pack knocked it

out! I felt great within 2 weeks after that! (The MTX was what I was

taking when my killer Pneumonia took me 4 1/2 months to get over last

year. I hate MTX. It about killed me. In my own opinion of course.

Everyone is different with drugs however.)

Being chronically ill is bad enough on our Spirit. And on our outlook.

But we do learn to keep our Spirit strengthened by little " tricks " and

things we do for ourselves...wether it is writing poetry, or doing

kindness for others. But when you have a chronically ill disease, and

then on top of everything else, get the " crud from heck " that is going

around in even the " normal population " , it pretty well takes the wind

out of our sails!

I seem to always want to crawl in a man hole and pull the cover over it

and cocoon when I get sickER or discouraged about something!

When I am discouraged as a matter of fact, that is what I do anyway! I

" Cocoon " !

So I have to watch myself with that. And crawl out, and be the Butterfly

God intended for me to be!

You will get well.... and all this will be just another hurdle you

hopped. And you will still be Tess. Don't let anything, any disease, or

anyone steal your Spirit. Things DO matter that you have done, things

will matter, and matter now, and will tomorrow!

You are just sick right now. So curl up, pamper yourself and just be

like every other normal person who gets this crud this time of year!

..... GET WELL, and unfold those beautiful wings and feel the sun drying

them and making them strong! Then Fly High on your Wings of Words you so

beautifully write and send us.

(I wrote a poem long ago about my poetry being like a butterfly's wings

and my " words " were as the Wings of Butterflys. " Wings of Words " )

You say you feel BLUE right now. Hey! There is a whole color spectrum to

a RAINBOW, so if you have to feel " a " color..... feel the whole color of

the RAINBOW!

Love, Elf

tess_northwest@... wrote:

> My doctor wanted to check me over today - she is not happy about

> this.

> She said the pneumonia hasn't responded as well or as quickly as she

> hoped - still a fever and green/yellow junk. My chest sounds like a

> wind tunnel. She believes I haven't responded well probably because I

>

> had Remicade 1 week prior to the pneumonia symptoms. She really wants

>

> to keep me out of the hospital for fear of picking some other awful

> thing up. She gave me an extra 5 days of Tequin, a 3rd inhaler, and

> instructions not to do anything or go anywhere. She says I'm still

> dehydrated and that I must push the fluids harder. The next step

> would

> be IV, different antibiotic and something like prednisone, or

> hospital.

> If we can manage things outside the hospital that's all for the

> better.

> I DON " T want any prednisone. I have worked to hard to turn into an

> emotionaly fragile, swollen puffball. (Please no one take offence -

> I'm

> just talking about me here.) And I'm not so sure I'm willing to do

> the

> Remicade thing again.

>

> I am discouraged...I can't go to Curves until there is no fever and

> I'm

> back to normal breathing. The good news is since beginning my upper

>

> body strengthening exercises I'm down 3 inches on my upper arms, and 1

>

> inch on my neck. Somehow that doesn't mean as much right now, but it

> will later right?

>

> I feel pretty blue right now, but I just need to keep putting one foot

>

> ahead of the other.

>

> I love all of you...

>

> Tess

>

>

>

[Guest guest]

Tess: The bout I had with pnemonia , took three rounds of

antibiotic, my PCP said the strain of pnemonia going around this year

is really resisitent to antibiotics. I am so sorry it got you, as it

is a real bummer. I am glad to hear you are being a love-seat potato,

as it is one of the best ways to kick it. What did she say about the

bloody mucous? Why cant she give you some IV fluids in the ER, I know

I felt alot better after they hydrated me, and it seemed to kick it

faster after that. I can understand the NOT wanting to do the

hospital thing, but why not hydrate you and let you go home? I am

sorry to hear you are so blue, but Elf has got something there with

the rainbow thing....you have the green and yellow so the rest is

just a few more colors.....anyway you are in my thoughts and prayers,

and sending chase away the P bug hugs....your okie friend Kathi

> My doctor wanted to check me over today - she is not happy about

this.

> She said the pneumonia hasn't responded as well or as quickly as she

> hoped - still a fever and green/yellow junk. My chest sounds like a

> wind tunnel. She believes I haven't responded well probably

because I

> had Remicade 1 week prior to the pneumonia symptoms. She really

wants

> to keep me out of the hospital for fear of picking some other awful

> thing up. She gave me an extra 5 days of Tequin, a 3rd inhaler, and

> instructions not to do anything or go anywhere. She says I'm still

> dehydrated and that I must push the fluids harder. The next step

would

> be IV, different antibiotic and something like prednisone, or

hospital.

> If we can manage things outside the hospital that's all for the

better.

> I DON " T want any prednisone. I have worked to hard to turn into an

> emotionaly fragile, swollen puffball. (Please no one take offence -

I'm

> just talking about me here.) And I'm not so sure I'm willing to do

the

> Remicade thing again.

>

> I am discouraged...I can't go to Curves until there is no fever and

I'm

> back to normal breathing. The good news is since beginning my

upper

> body strengthening exercises I'm down 3 inches on my upper arms,

and 1

> inch on my neck. Somehow that doesn't mean as much right now, but

it

> will later right?

>

> I feel pretty blue right now, but I just need to keep putting one

foot

> ahead of the other.

>

> I love all of you...

>

> Tess

[Guest guest]

Please don't get discouraged! This group certainly has it's more

vocal members and those that prefer to sit back more quietly, but it

is such a valuable source of information! I have a ten month old

daughter, Liliana, that has bleph, and although I am not a vocal

member of this group, I try to keep up on the messages and never

fail to find interesting and important information regarding Bleph.

Your son is a gorgeous little boy! How beneficial do you feel his

surgeries were? Did he have any complications or did they all go

smoothly? He looks wonderful! Don't ever hold back asking

questions - this group seems to have many knowlegable people. In

fact, it has gotten to the point that I think that my husband and I

know just as much (if not more) than our daughter's opthamologists

do about bleph. One of them even showed that in their text books

there was only 7 lines about bleph, and in another one only 2! Can

you imagine!?!? Of course, the surgeon will certainly have to be

another story as they know much more than we (or so we hope). I

would love to hear back more about you and your son! Take care and

have a wonderful weekend! -Suzy in Arizona

> well I am kind of feeling like an outsider, I have been contacted

by

> shawna which was great but have not had any responses from anyone

> else,I hope that I can find out some good thing from the members

of

> this group, I am not sure what kind of questions I need to ask but

I

> do have lots, I also have alot of info too,I am a nursing student

and

> have been doing alot of extensive research, it seems that you all

> know alot and maybe i can learn some more. I was reading past

> messages and noticed a message from ginamama2003@ it was left

on

> sept 2003, message #331 re: african american children with bleph.I

> have some interesting information for her regarding my own family.