Re: Re: P.S. we only eliminated the big triggers

[Guest guest]

Sorry for adding this but – has he been tested for lyme or had an mri?

From: [mailto: ] On Behalf Of

M

Sent: October-21-10 6:44 PM

Subject: Re: P.S. we only eliminated the big triggers

& Marcia,

Thank you so much for you thoughtful responses!

, I think your OCD may be a blessing, in that you are able to really

dial in to what the responses/reactions are! I feel like I usually finally

figure it out, but not nearly like you seem to be able to do!

Marcia, I've always been inspired and encouraged by you and your son's

story! We've been a patient of Dr. G for 9 years and can only hope and pray

(and work, too!) to be even remotely close to where is someday!

I started to reply to the two of you privately, but maybe there are others

who have a struggle similar to ours. My Josh will be 14 next month (seeing

Dr. G since he was 4-1/2) and even Dr. G has told us he is one of his more

difficult patients. Josh is basically non-verbal – he has a pretty large

vocabulary, but no real language. He can (sometimes) respond to yes/no

questions and request his basic needs, but that's really about all. He was

just potty-trained within the past year (though we still have some

challenges), he's not able to do many basic things easily/correctly – like

dress himself, shower, brush his own teeth, eat with a spoon without turning

it over, etc. With all of that, he is the happiest, most laid back,

compliant, lovable kid on the planet!

I think my point of giving that background is that because of his lack of

language and no behavioral issues, it makes it very difficult to know what's

going on with him. So I sometimes wonder if he's a mystery to Dr. G as well.

Along with the protocol, we have done years of private speech therapy and

OT. It makes it very difficult to know that we're doing the same things that

others do, but without the same results. So when we suddenly need to cut out

things from our diet that didn't seem to be a problem 3 months ago, I guess

I wonder if we're sort of grasping at straws. And not that I want to give

him anything that would harm him, but I also don't want to deprive him if

it's not truly causing issues. I probably do allow too many carbs, but I am

diligent about the main things ... dairy, whole grains, milk chocolate,

limit sugars. We've also eliminated all nuts, berries and cinnamon. I have

conceded to make the further eliminations (no corn and take almost all of

the carbs out of his diet completely) and see what the next bloodwork shows,

but I am admittedly feeling very defeated and frustrated at the moment.

Marcia, I've always subscribed to that thought process of fighting the big

fights and knowing that I can only do what I can do... just makes it hard

when you feel like your best isn't good enough when my son (all of our kids)

deserves so much more! I know you've been there. And I believe in Josh the

way I know you always believed in . I know he's " in there. "

Sorry for the long post... guess I just needed to vent a little!

Thanks again for your kind words,

>

> ,

>

> We only eliminated the big triggers from 's diet. Dairy being the most

> important one to eliminate for him and too many sugars. You can make

> yourself crazy with diet. Try to eliminate the foods in the most allergic

> column of the allergy blood test. used to come up off the charts

> allergic to garlic but now it is okay. You can drive yourself crazy with

> worrying what you can and cannot feed them. Some find it so taxing and

> restrictive that they eventually give up the diet and even the medical

> treatments. That is a big mistake. The medical component is essential to

> recovery.

>

>

>

>

> Instead, I wish parents would just try to concentrate on eliminating the

big

> triggers that greatly affect their child's immune systems instead of

wasting

> hours washing pink dye off the Diflucan tablets. There are

> only a finite number of hours in each day and you need to spend your time

on

> the things that will make the biggest difference for your child instead of

> sweating the small stuff. It would be better to spend this time working to

> teach your child the things they missed.

>

>

>

>

> Each kid is different and you need to do the best you can without making

> yourself or your child apprehensive about what they eat. It is important

> that your kid not feel totally different and that you do not wake up every

> morning (like I did) afraid to feed your child anything because it may

cause

> a reaction. For most kids with immune problems, the most offending foods

are

> usually dairy, whole wheat, and milk chocolate. And foods are not the only

> allergens that affect our kids. I still use " All " laundry detergent with

no

> dyes and perfumes " to alleviate some stress on 's immune system.

>

> Best,

>

> Marcia

>

>

>

>

>

>

[Guest guest]

, I totally know where you are coming from! I hate continuing

to cut things out of my daughter's diet because she is so limited as it

is. Our numbers are not where Dr. Goldberg would like so we continue

the cutting but it's so hard to know what the right thing is. I don't

see my daughter responding badly to any foods but we keep cutting.

I recently tried to get organized and put all our IEP and reports and

Dr. Goldberg stuff in one spot and I got to re-reading her stuff from

when she was 3 and 6 years old (she is almost 12 now) and I'm so glad I

did. I feel like I needed this perspective to see how far she has

come. Things are not perfect but I have seen growth, and I was not

feeling like we were making much progress. I get so caught up in the

day to day stuff that I forget to look at the big picture. Re-reading

these reports gave me a bit of the big picture that I needed.

Congratulations on the potty training. That is a life changing thing

for all of you.

Elaine

On 10/21/10 5:43 PM, M wrote:

>

> & Marcia,

>

> Thank you so much for you thoughtful responses!

>

> , I think your OCD may be a blessing, in that you are able to

> really dial in to what the responses/reactions are! I feel like I

> usually finally figure it out, but not nearly like you seem to be able

> to do!

>

> Marcia, I've always been inspired and encouraged by you and your son's

> story! We've been a patient of Dr. G for 9 years and can only hope and

> pray (and work, too!) to be even remotely close to where is someday!

>

> I started to reply to the two of you privately, but maybe there are

> others who have a struggle similar to ours. My Josh will be 14 next

> month (seeing Dr. G since he was 4-1/2) and even Dr. G has told us he

> is one of his more difficult patients. Josh is basically non-verbal ?

> he has a pretty large vocabulary, but no real language. He can

> (sometimes) respond to yes/no questions and request his basic needs,

> but that's really about all. He was just potty-trained within the past

> year (though we still have some challenges), he's not able to do many

> basic things easily/correctly ? like dress himself, shower, brush his

> own teeth, eat with a spoon without turning it over, etc. With all of

> that, he is the happiest, most laid back, compliant, lovable kid on

> the planet!

>

> I think my point of giving that background is that because of his lack

> of language and no behavioral issues, it makes it very difficult to

> know what's going on with him. So I sometimes wonder if he's a mystery

> to Dr. G as well. Along with the protocol, we have done years of

> private speech therapy and OT. It makes it very difficult to know that

> we're doing the same things that others do, but without the same

> results. So when we suddenly need to cut out things from our diet that

> didn't seem to be a problem 3 months ago, I guess I wonder if we're

> sort of grasping at straws. And not that I want to give him anything

> that would harm him, but I also don't want to deprive him if it's not

> truly causing issues. I probably do allow too many carbs, but I am

> diligent about the main things ... dairy, whole grains, milk

> chocolate, limit sugars. We've also eliminated all nuts, berries and

> cinnamon. I have conceded to make the further eliminations (no corn

> and take almost all of the carbs out of his diet completely) and see

> what the next bloodwork shows, but I am admittedly feeling very

> defeated and frustrated at the moment.

>

> Marcia, I've always subscribed to that thought process of fighting the

> big fights and knowing that I can only do what I can do... just makes

> it hard when you feel like your best isn't good enough when my son

> (all of our kids) deserves so much more! I know you've been there. And

> I believe in Josh the way I know you always believed in . I know

> he's " in there. "

>

> Sorry for the long post... guess I just needed to vent a little!

>

> Thanks again for your kind words,

>

>

[Guest guest]

Dear .

 

I am sorry that you are feeling defeated now.  The only thing that I could even

offer is

that if something doesn't work as far as teaching anything to your son, to try

something else.  I have found with my son that his school will often go to give

up if he doesn't get something right away and then I have to insist that we try

a new strategy, communicate it, and then get him to use it. During my years, I

learned how to reach my son better than his teachers or therapists.

 

My son didn't start putting two words together until about six.  This happened

after he learned the alphabet and learned how to read words.  By learning how

to read words, this began his vocabulary.  We used a lot of programs from

Linguisystems, SuperDuper Inc, and Great Ideas for Teaching.  I know that

lately Dr. Goldberg has been recommending the Rosetta Stone Program for

patients.  I am not sure what the feedback is on this last one, but it is

expensive, but allows you to try the program first for a trial

 

 After began talking, it was easier to teach him naturally.  He is still

a work in progress now and at 12 is behind two grade levels & socially

awkward.  He had a BEAM test done at three and they told me he would probably

never talk or understand anything that I say.  This is not true, but it has

been difficult with all the stops and starts with progress. He is so higher

functioning than they ever anticipated, but it is hard and there is much to do

still.

 

I hope you find something that helps your son.  He sounds like a wonderful boy

and well worth the fight. I have a lot of programs that I we do not use anymore

that I have kept hoping someone would use it one day and donate.  Please email

me off list if you are interested.

 

Take care.

 

Lynn

From: M <melissa@...>

Subject: Re: P.S. we only eliminated the big triggers

Date: Thursday, October 21, 2010, 5:43 PM

 

& Marcia,

Thank you so much for you thoughtful responses!

, I think your OCD may be a blessing, in that you are able to really dial

in to what the responses/reactions are! I feel like I usually finally figure it

out, but not nearly like you seem to be able to do!

Marcia, I've always been inspired and encouraged by you and your son's story!

We've been a patient of Dr. G for 9 years and can only hope and pray (and work,

too!) to be even remotely close to where is someday!

I started to reply to the two of you privately, but maybe there are others who

have a struggle similar to ours. My Josh will be 14 next month (seeing Dr. G

since he was 4-1/2) and even Dr. G has told us he is one of his more difficult

patients. Josh is basically non-verbal – he has a pretty large vocabulary, but

no real language. He can (sometimes) respond to yes/no questions and request his

basic needs, but that's really about all. He was just potty-trained within the

past year (though we still have some challenges), he's not able to do many basic

things easily/correctly – like dress himself, shower, brush his own teeth, eat

with a spoon without turning it over, etc. With all of that, he is the happiest,

most laid back, compliant, lovable kid on the planet!

I think my point of giving that background is that because of his lack of

language and no behavioral issues, it makes it very difficult to know what's

going on with him. So I sometimes wonder if he's a mystery to Dr. G as well.

Along with the protocol, we have done years of private speech therapy and OT. It

makes it very difficult to know that we're doing the same things that others do,

but without the same results. So when we suddenly need to cut out things from

our diet that didn't seem to be a problem 3 months ago, I guess I wonder if

we're sort of grasping at straws. And not that I want to give him anything that

would harm him, but I also don't want to deprive him if it's not truly causing

issues. I probably do allow too many carbs, but I am diligent about the main

things ... dairy, whole grains, milk chocolate, limit sugars. We've also

eliminated all nuts, berries and cinnamon. I have conceded to make the further

eliminations (no corn and take

almost all of the carbs out of his diet completely) and see what the next

bloodwork shows, but I am admittedly feeling very defeated and frustrated at the

moment.

Marcia, I've always subscribed to that thought process of fighting the big

fights and knowing that I can only do what I can do... just makes it hard when

you feel like your best isn't good enough when my son (all of our kids) deserves

so much more! I know you've been there. And I believe in Josh the way I know you

always believed in . I know he's " in there. "

Sorry for the long post... guess I just needed to vent a little!

Thanks again for your kind words,

>

> ,

>

> We only eliminated the big triggers from 's diet. Dairy being the most

> important one to eliminate for him and too many sugars. You can make

> yourself crazy with diet. Try to eliminate the foods in the most allergic

> column of the allergy blood test. used to come up off the charts

> allergic to garlic but now it is okay. You can drive yourself crazy with

> worrying what you can and cannot feed them. Some find it so taxing and

> restrictive that they eventually give up the diet and even the medical

> treatments. That is a big mistake. The medical component is essential to

> recovery.

>

>

>

>

> Instead, I wish parents would just try to concentrate on eliminating the big

> triggers that greatly affect their child's immune systems instead of wasting

> hours washing pink dye off the Diflucan tablets. There are

> only a finite number of hours in each day and you need to spend your time on

> the things that will make the biggest difference for your child instead of

> sweating the small stuff. It would be better to spend this time working to

> teach your child the things they missed.

>

>

>

>

> Each kid is different and you need to do the best you can without making

> yourself or your child apprehensive about what they eat. It is important

> that your kid not feel totally different and that you do not wake up every

> morning (like I did) afraid to feed your child anything because it may cause

> a reaction. For most kids with immune problems, the most offending foods are

> usually dairy, whole wheat, and milk chocolate. And foods are not the only

> allergens that affect our kids. I still use " All " laundry detergent with no

> dyes and perfumes " to alleviate some stress on 's immune system.

>

> Best,

>

> Marcia

>

>

>

>

>

>

[Guest guest]

Hey ,

I can only imagine how hard that is.  With my son at 11 and struggling in much

of the same ways as when he was 8 (I was just looking back at his diagnostic

report and some things haven't changed a bit), I do have a lot of fear.  I hold

on to a lot of hope with Marcia's experience, saying her son was still wierd and

behavioral around this age too.

I hope you don't give up hope, but I know it's much harder to go along not

making that progress.  I hope very much that if XMRV turns out to be a big

factor, that even the harder to treat children may then be able to make

significant progress.  I've read about HIV related dementia and illness for

years because so much of what has been learned in that research applies to

autism, so my hopes are hanging pretty high on this retroviral thing.

So.... if this does turn out to be as big as it might be.. I wish I could find a

couple of the links where Dr Klimas has talked about some of her patients w/full

blown AIDS, one weighing like 80 lbs and looking to be on his death bed, who is

now very healthy with a beautiful muscular body and playing basketball for

hours, living a full life.  I've read published case studies of children with

HIV who had lost all speech and developing symptoms appearing just like autism

making (of them full) recoveries after antiretroviral therapy.  That in

particular ought to be blowing paradigms all over the place, but it just isn't

being heard yet.

Soooo.... it may be that what you are doing for your son w/Dr G right now is

protecting his immune system as much as you can, preventing him from getting any

worse, protecting him from significant pain and misery, allowing happiness, and

then... in a year or two (if we're lucky but I bet things race rapidly if this

link is proven), maybe you will have a TRUE treatment for him.  And if you do,

you can still count on more periods of major brain growth ahead during the teens

and early 20s where big milestones can still be met. 

In addition to that, there are reports of children not having speech, but

apparently they were absorbing the language despite their inability to speak it,

and then something would change and their speech would rapidly progress.  Some

cannot speak, and yet they can write/type their thoughts and feelings very

fluently - often as they get older. 

I know 14 sounds " old " in the years of autism - 11 and 9 feel " old " to me,

too. 

I often feel like time is racing away and they're not going like the typicals. 

I even (and often) tend to compare myself to the parents of typical children and

convince myself that if only I was a better mom, more consistent, more

stimulating, and had put a lot more effort into this (instead of being sick,

often paralyzed by my anxiety, OCD, cognitive dysfunction & fatigue), that maybe

my kids would be much further ahead ... that maybe they'd be .... " normal " . 

(How's that for distorted thinking?) 

I guess those are the times when my anxiety decides to make my ocd turn cruel. 

I think of " them " as their own entities, partly to try to separate my

self-identity from my illness, because I have actually experienced a period of

a

couple of years where I had a quiet brain that might be what most described as

normal.  That didn't happen until I was 30.  Pregnancy did something to my

immune system (and gee - my son's too apparently), and the majority of my

symptoms diminished so much.  When the songs and constant thinking of 20-50

things all at once quieted down, I freaked out and thought I had brain damage. 

I had to learn that *this* was how most people think - not the way I knew. 

(The

only thing I missed was my wonderful musical library playing in my head, and a

couple of 'happy' tics that when I felt the urge to leap into the air, I had a

surge of joy with it. I usually miss the music when it goes away, and sometimes

to listen to it is so incredibly wonderful that I wonder why I'd ever want to

cure 'this'. But it always passes.)

Anyway, I share that, because my brain has undergone lots of changes and

fluctuations over time.  I've had times where I could barely speak or think,

and

then I have periods where I'm relatively well.  I've had times since being

treated for PANDAS that I've believed I could truly be healed completely some

day.  Then stress or something sets off more problems, I come apart, and I

think

this is all a load of crap and I'm slap @*$ crazy.  When I get to that point,

though, I run to the doctor, get an ASO titer, and it will always be way up. 

Then I start (the doctor does, rather), restart, increase, or change the

antibiotics, and a week or two or three later, I'm feeling like if I'd just stay

like this but have a little (ok a lot) more energy, I would be satisfied and

content with it, because that wild ride I had just taken really sucked.  I'm

still in that " staggered " stage this week after switching from my cherished

doxycycline to Keflex after a total meltdown freakout that was utterly

disabling.  And on the other end of it now, all throughout the day, finding I

can work a full day at a desk (I wasn't even able to think well) without

stgruggling desperately to think and do), I just pause and say 'whoa'.  And I

can't describe it to anyone but you guys because no one else would understand. 

Certainly not the 'normals' I work with lol.

But without my OCD, I would never have found .

So anyway, I've had a lot of 'stages', and a lot of very dysfunctional times,

but even at 30 years old, I was able to wake up out of a fog and change in ways

that I didn't even understand was 'normal'. 

It's never too late.  Never give up hope.  At 9, I had severe PANDAS.  At 12,

I

got 'mono', which supposedly went away but I didn't really get better, and

months later, I was diagnosed with it again later - unclear when,

At 14, I still had 'mono', my father died of acute leukemia, my mom went to bed

for the next 8 years.  Because of this, the symptoms I had then were thought to

be depression or stress or difficulty coping.  But those symptoms were: I

couldn't make eye contact.  I couldn't speak to people at school.  I could

barely speak until my mom screamed at me and demanded that I answer her - she

called it sulking.  I twirled.  I had severe sensory issues.  I could hear

into

the house next door (yet loud music in headphones was awesome - go figure).  I

was OH!-CD for real.  I had major cognitive dysfunction.  It was my onset of

CFIDS that I was experiencing, but the way I experienced it felt a lot more like

the onset of autism is described.  I was obsessed - I had 18 aquariums in my

room and spent my time building ecosystems and reading encyclopedias.  I was

definitely NOT normal.  At 16, I underwent another dramatic change, and

suddenly

went from having severe social anxiety and near inability to speak to people to

having friends and waking up to the world around me.    Oh - and I toe-walked

until I was 28.  (I think discovering I loved merlot had something to do with

my

change at 28 - and it certainly has to do w/why I have kids lol. Maybe I should

treat this illness w/red wine... lol - no time for wine w/kids.)  I didn't get

PANDAS treated until after I met Dr Goldberg at one of the first chats I'd

attended and asked " Hey ... have you ever heard of strep causing OCD? " -

because

I had figured out that connection when I was 9.  (Of course, being 9, I

wouldn't

tell anyone I had a sore throat and ocd-ing because that meant I'd get a shot.)

So.  I walk around looking normal enough, and most people I meet don't know how

screwed up my brain is.  Sometimes I despise myself and my illness.  And

sometimes I don't feel screwed up anymore.  And I hope someday I will be even

better, and more consistently.  Right now my ASO titers are back up to

900something, so no wonder I've freaked out again.  But at 14, I was one

seriously dysfunctioning kid.  High IQ - inability to function at school. 

Test

at 1 & 2% in the nation on aptitude tests, and get Ds & Fs on my report card, yet

have to be in advanced placement classes.  Wierd mix.  They were so confused

with me lol.  " Why won't you just do you work?? "   Well - because I

couldn't.  

, I know your son is a lot sicker than this.  I just don't want you to

think that his age means that he can't get better and live a good life if a

treatment is found.  At 30, I was just barely starting to grow up.  I cling

desperately to hope for our kids.  I KNOW they will find something important,

and that we can treat it.  And I know that even desperately ill children can

develop at any point in their lives.  Read amazing aids recovery stories! There

are so many damage paradigms being broken in research right now that I can't

list them all right now - I think I referred to a few recently though...

Just keep doing what you're doing.  I wish I could take away the pain that

comes

with that helpless feeling you have, and instill hope when there is despair.

Love you all!

 

________________________________

From: M <melissa@...>

Sent: Thu, October 21, 2010 4:43:39 PM

Subject: Re: P.S. we only eliminated the big triggers

 

& Marcia,

Thank you so much for you thoughtful responses!

, I think your OCD may be a blessing, in that you are able to really dial

in to what the responses/reactions are! I feel like I usually finally figure it

out, but not nearly like you seem to be able to do!

Marcia, I've always been inspired and encouraged by you and your son's story!

We've been a patient of Dr. G for 9 years and can only hope and pray (and work,

too!) to be even remotely close to where is someday!

I started to reply to the two of you privately, but maybe there are others who

have a struggle similar to ours. My Josh will be 14 next month (seeing Dr. G

since he was 4-1/2) and even Dr. G has told us he is one of his more difficult

patients. Josh is basically non-verbal – he has a pretty large vocabulary, but

no real language. He can (sometimes) respond to yes/no questions and request his

basic needs, but that's really about all. He was just potty-trained within the

past year (though we still have some challenges), he's not able to do many basic

things easily/correctly – like dress himself, shower, brush his own teeth, eat

with a spoon without turning it over, etc. With all of that, he is the happiest,

most laid back, compliant, lovable kid on the planet!

I think my point of giving that background is that because of his lack of

language and no behavioral issues, it makes it very difficult to know what's

going on with him. So I sometimes wonder if he's a mystery to Dr. G as well.

Along with the protocol, we have done years of private speech therapy and OT. It

makes it very difficult to know that we're doing the same things that others do,

but without the same results. So when we suddenly need to cut out things from

our diet that didn't seem to be a problem 3 months ago, I guess I wonder if

we're sort of grasping at straws. And not that I want to give him anything that

would harm him, but I also don't want to deprive him if it's not truly causing

issues. I probably do allow too many carbs, but I am diligent about the main

things ... dairy, whole grains, milk chocolate, limit sugars. We've also

eliminated all nuts, berries and cinnamon. I have conceded to make the further

eliminations (no corn and take almost all of the carbs out of his diet

completely) and see what the next bloodwork shows, but I am admittedly feeling

very defeated and frustrated at the moment.

Marcia, I've always subscribed to that thought process of fighting the big

fights and knowing that I can only do what I can do... just makes it hard when

you feel like your best isn't good enough when my son (all of our kids) deserves

so much more! I know you've been there. And I believe in Josh the way I know you

always believed in . I know he's " in there. "

Sorry for the long post... guess I just needed to vent a little!

Thanks again for your kind words,

>

> ,

>

> We only eliminated the big triggers from 's diet. Dairy being the most

> important one to eliminate for him and too many sugars. You can make

> yourself crazy with diet. Try to eliminate the foods in the most allergic

> column of the allergy blood test. used to come up off the charts

> allergic to garlic but now it is okay. You can drive yourself crazy with

> worrying what you can and cannot feed them. Some find it so taxing and

> restrictive that they eventually give up the diet and even the medical

> treatments. That is a big mistake. The medical component is essential to

> recovery.

>

>

>

>

> Instead, I wish parents would just try to concentrate on eliminating the big

> triggers that greatly affect their child's immune systems instead of wasting

> hours washing pink dye off the Diflucan tablets. There are

> only a finite number of hours in each day and you need to spend your time on

> the things that will make the biggest difference for your child instead of

> sweating the small stuff. It would be better to spend this time working to

> teach your child the things they missed.

>

>

>

>

> Each kid is different and you need to do the best you can without making

> yourself or your child apprehensive about what they eat. It is important

> that your kid not feel totally different and that you do not wake up every

> morning (like I did) afraid to feed your child anything because it may cause

> a reaction. For most kids with immune problems, the most offending foods are

> usually dairy, whole wheat, and milk chocolate. And foods are not the only

> allergens that affect our kids. I still use " All " laundry detergent with no

> dyes and perfumes " to alleviate some stress on 's immune system.

>

> Best,

>

> Marcia

>

>

>

>

>

>

[Guest guest]

Wow, , with some minor changes I thought I was reading my biography. I

was so messed up for so long that I just gave up. The only time I had any relief

(until Dr. G) was when I was pregnant. Most of the OCD and anxiety that I had

been living with for 2 and a half decades went away. I was the happiest when I

was pregnant. A few months after giving birth, though, it would all come back.

After the birth of my last child in 2002, it came back worse than ever. Ery-Tab

and Dr. G saved my sanity. I would never have been able to take care of three

kids--Asperger's, autism, and ADHD with bipolar tendencies, without his medical

assistance. Not only have my kids improved, but he has helped me to get well

enough to be a better mom and better advocate for my kids.

 

I agree with Marcia and ...hang in there. My boys, especially Noah, have

a long way to go, but we're getting there, together as a family.

 

God Bless,

 

Robyn

 

p.s. Thanks to all those willing to share their struggles and expose their

weaknesses. It gives all of us strength.

From: <thecolemans4@...>

Subject: Re: Re: P.S. we only eliminated the big triggers

Date: Thursday, October 21, 2010, 5:41 PM

 

Hey ,

I can only imagine how hard that is.  With my son at 11 and struggling in much

of the same ways as when he was 8 (I was just looking back at his diagnostic

report and some things haven't changed a bit), I do have a lot of fear.  I hold

on to a lot of hope with Marcia's experience, saying her son was still wierd and

behavioral around this age too.

I hope you don't give up hope, but I know it's much harder to go along not

making that progress.  I hope very much that if XMRV turns out to be a big

factor, that even the harder to treat children may then be able to make

significant progress.  I've read about HIV related dementia and illness for

years because so much of what has been learned in that research applies to

autism, so my hopes are hanging pretty high on this retroviral thing.

So.... if this does turn out to be as big as it might be.. I wish I could find a

couple of the links where Dr Klimas has talked about some of her patients w/full

blown AIDS, one weighing like 80 lbs and looking to be on his death bed, who is

now very healthy with a beautiful muscular body and playing basketball for

hours, living a full life.  I've read published case studies of children with

HIV who had lost all speech and developing symptoms appearing just like autism

making (of them full) recoveries after antiretroviral therapy.  That in

particular ought to be blowing paradigms all over the place, but it just isn't

being heard yet.

Soooo.... it may be that what you are doing for your son w/Dr G right now is

protecting his immune system as much as you can, preventing him from getting any

worse, protecting him from significant pain and misery, allowing happiness, and

then... in a year or two (if we're lucky but I bet things race rapidly if this

link is proven), maybe you will have a TRUE treatment for him.  And if you do,

you can still count on more periods of major brain growth ahead during the teens

and early 20s where big milestones can still be met. 

In addition to that, there are reports of children not having speech, but

apparently they were absorbing the language despite their inability to speak it,

and then something would change and their speech would rapidly progress.  Some

cannot speak, and yet they can write/type their thoughts and feelings very

fluently - often as they get older. 

I know 14 sounds " old " in the years of autism - 11 and 9 feel " old " to me,

too. 

I often feel like time is racing away and they're not going like the typicals. 

I even (and often) tend to compare myself to the parents of typical children and

convince myself that if only I was a better mom, more consistent, more

stimulating, and had put a lot more effort into this (instead of being sick,

often paralyzed by my anxiety, OCD, cognitive dysfunction & fatigue), that maybe

my kids would be much further ahead ... that maybe they'd be .... " normal " . 

(How's that for distorted thinking?) 

I guess those are the times when my anxiety decides to make my ocd turn cruel. 

I think of " them " as their own entities, partly to try to separate my

self-identity from my illness, because I have actually experienced a period of

a

couple of years where I had a quiet brain that might be what most described as

normal.  That didn't happen until I was 30.  Pregnancy did something to my

immune system (and gee - my son's too apparently), and the majority of my

symptoms diminished so much.  When the songs and constant thinking of 20-50

things all at once quieted down, I freaked out and thought I had brain damage. 

I had to learn that *this* was how most people think - not the way I knew. 

(The

only thing I missed was my wonderful musical library playing in my head, and a

couple of 'happy' tics that when I felt the urge to leap into the air, I had a

surge of joy with it. I usually miss the music when it goes away, and sometimes

to listen to it is so incredibly wonderful that I wonder why I'd ever want to

cure 'this'. But it always passes.)

Anyway, I share that, because my brain has undergone lots of changes and

fluctuations over time.  I've had times where I could barely speak or think,

and

then I have periods where I'm relatively well.  I've had times since being

treated for PANDAS that I've believed I could truly be healed completely some

day.  Then stress or something sets off more problems, I come apart, and I

think

this is all a load of crap and I'm slap @*$ crazy.  When I get to that point,

though, I run to the doctor, get an ASO titer, and it will always be way up. 

Then I start (the doctor does, rather), restart, increase, or change the

antibiotics, and a week or two or three later, I'm feeling like if I'd just stay

like this but have a little (ok a lot) more energy, I would be satisfied and

content with it, because that wild ride I had just taken really sucked.  I'm

still in that " staggered " stage this week after switching from my cherished

doxycycline to Keflex after a total meltdown freakout that was utterly

disabling.  And on the other end of it now, all throughout the day, finding I

can work a full day at a desk (I wasn't even able to think well) without

stgruggling desperately to think and do), I just pause and say 'whoa'.  And I

can't describe it to anyone but you guys because no one else would understand. 

Certainly not the 'normals' I work with lol.

But without my OCD, I would never have found .

So anyway, I've had a lot of 'stages', and a lot of very dysfunctional times,

but even at 30 years old, I was able to wake up out of a fog and change in ways

that I didn't even understand was 'normal'. 

It's never too late.  Never give up hope.  At 9, I had severe PANDAS.  At 12,

I

got 'mono', which supposedly went away but I didn't really get better, and

months later, I was diagnosed with it again later - unclear when,

At 14, I still had 'mono', my father died of acute leukemia, my mom went to bed

for the next 8 years.  Because of this, the symptoms I had then were thought to

be depression or stress or difficulty coping.  But those symptoms were: I

couldn't make eye contact.  I couldn't speak to people at school.  I could

barely speak until my mom screamed at me and demanded that I answer her - she

called it sulking.  I twirled.  I had severe sensory issues.  I could hear

into

the house next door (yet loud music in headphones was awesome - go figure).  I

was OH!-CD for real.  I had major cognitive dysfunction.  It was my onset of

CFIDS that I was experiencing, but the way I experienced it felt a lot more like

the onset of autism is described.  I was obsessed - I had 18 aquariums in my

room and spent my time building ecosystems and reading encyclopedias.  I was

definitely NOT normal.  At 16, I underwent another dramatic change, and

suddenly

went from having severe social anxiety and near inability to speak to people to

having friends and waking up to the world around me.    Oh - and I toe-walked

until I was 28.  (I think discovering I loved merlot had something to do with

my

change at 28 - and it certainly has to do w/why I have kids lol. Maybe I should

treat this illness w/red wine... lol - no time for wine w/kids.)  I didn't get

PANDAS treated until after I met Dr Goldberg at one of the first chats I'd

attended and asked " Hey ... have you ever heard of strep causing OCD? " -

because

I had figured out that connection when I was 9.  (Of course, being 9, I

wouldn't

tell anyone I had a sore throat and ocd-ing because that meant I'd get a shot.)

So.  I walk around looking normal enough, and most people I meet don't know how

screwed up my brain is.  Sometimes I despise myself and my illness.  And

sometimes I don't feel screwed up anymore.  And I hope someday I will be even

better, and more consistently.  Right now my ASO titers are back up to

900something, so no wonder I've freaked out again.  But at 14, I was one

seriously dysfunctioning kid.  High IQ - inability to function at school. 

Test

at 1 & 2% in the nation on aptitude tests, and get Ds & Fs on my report card, yet

have to be in advanced placement classes.  Wierd mix.  They were so confused

with me lol.  " Why won't you just do you work?? "   Well - because I

couldn't.  

, I know your son is a lot sicker than this.  I just don't want you to

think that his age means that he can't get better and live a good life if a

treatment is found.  At 30, I was just barely starting to grow up.  I cling

desperately to hope for our kids.  I KNOW they will find something important,

and that we can treat it.  And I know that even desperately ill children can

develop at any point in their lives.  Read amazing aids recovery stories! There

are so many damage paradigms being broken in research right now that I can't

list them all right now - I think I referred to a few recently though...

Just keep doing what you're doing.  I wish I could take away the pain that

comes

with that helpless feeling you have, and instill hope when there is despair.

Love you all!

 

________________________________

From: M <melissa@...>

Sent: Thu, October 21, 2010 4:43:39 PM

Subject: Re: P.S. we only eliminated the big triggers

 

& Marcia,

Thank you so much for you thoughtful responses!

, I think your OCD may be a blessing, in that you are able to really dial

in to what the responses/reactions are! I feel like I usually finally figure it

out, but not nearly like you seem to be able to do!

Marcia, I've always been inspired and encouraged by you and your son's story!

We've been a patient of Dr. G for 9 years and can only hope and pray (and work,

too!) to be even remotely close to where is someday!

I started to reply to the two of you privately, but maybe there are others who

have a struggle similar to ours. My Josh will be 14 next month (seeing Dr. G

since he was 4-1/2) and even Dr. G has told us he is one of his more difficult

patients. Josh is basically non-verbal – he has a pretty large vocabulary, but

no real language. He can (sometimes) respond to yes/no questions and request his

basic needs, but that's really about all. He was just potty-trained within the

past year (though we still have some challenges), he's not able to do many basic

things easily/correctly – like dress himself, shower, brush his own teeth, eat

with a spoon without turning it over, etc. With all of that, he is the happiest,

most laid back, compliant, lovable kid on the planet!

I think my point of giving that background is that because of his lack of

language and no behavioral issues, it makes it very difficult to know what's

going on with him. So I sometimes wonder if he's a mystery to Dr. G as well.

Along with the protocol, we have done years of private speech therapy and OT. It

makes it very difficult to know that we're doing the same things that others do,

but without the same results. So when we suddenly need to cut out things from

our diet that didn't seem to be a problem 3 months ago, I guess I wonder if

we're sort of grasping at straws. And not that I want to give him anything that

would harm him, but I also don't want to deprive him if it's not truly causing

issues. I probably do allow too many carbs, but I am diligent about the main

things ... dairy, whole grains, milk chocolate, limit sugars. We've also

eliminated all nuts, berries and cinnamon. I have conceded to make the further

eliminations (no corn and take almost all of the carbs out of his diet

completely) and see what the next bloodwork shows, but I am admittedly feeling

very defeated and frustrated at the moment.

Marcia, I've always subscribed to that thought process of fighting the big

fights and knowing that I can only do what I can do... just makes it hard when

you feel like your best isn't good enough when my son (all of our kids) deserves

so much more! I know you've been there. And I believe in Josh the way I know you

always believed in . I know he's " in there. "

Sorry for the long post... guess I just needed to vent a little!

Thanks again for your kind words,

>

> ,

>

> We only eliminated the big triggers from 's diet. Dairy being the most

> important one to eliminate for him and too many sugars. You can make

> yourself crazy with diet. Try to eliminate the foods in the most allergic

> column of the allergy blood test. used to come up off the charts

> allergic to garlic but now it is okay. You can drive yourself crazy with

> worrying what you can and cannot feed them. Some find it so taxing and

> restrictive that they eventually give up the diet and even the medical

> treatments. That is a big mistake. The medical component is essential to

> recovery.

>

>

>

>

> Instead, I wish parents would just try to concentrate on eliminating the big

> triggers that greatly affect their child's immune systems instead of wasting

> hours washing pink dye off the Diflucan tablets. There are

> only a finite number of hours in each day and you need to spend your time on

> the things that will make the biggest difference for your child instead of

> sweating the small stuff. It would be better to spend this time working to

> teach your child the things they missed.

>

>

>

>

> Each kid is different and you need to do the best you can without making

> yourself or your child apprehensive about what they eat. It is important

> that your kid not feel totally different and that you do not wake up every

> morning (like I did) afraid to feed your child anything because it may cause

> a reaction. For most kids with immune problems, the most offending foods are

> usually dairy, whole wheat, and milk chocolate. And foods are not the only

> allergens that affect our kids. I still use " All " laundry detergent with no

> dyes and perfumes " to alleviate some stress on 's immune system.

>

> Best,

>

> Marcia

>

>

>

>

>

>

[Guest guest]

Yes, Robyn, I thought of you as I typed that! I knew ... your ASO's been

higher than mine, so I know you know. lol.  Is it not amazing what happens

about

3 days after an antibiotic starts to kick in?  Or did you just start and

stay? 

Before I went to Dr , every time I'd finish my antibiotics, I'd have 3-5

days before it all started coming back.  Then after I'd lost my freakin mind,

I'd start the new one (after I begged enough doctors), and 3 days, I'd wake up

to the world around me and suddenly be able to get my house in order.  After

about 50 times, I finally  became convinced enough to travel.   (Actually, I

was convinced before I ever tried - it just had to be reinforced about 50 times

and I had to get a job to get to TX).

________________________________

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

Sent: Thu, October 21, 2010 8:38:55 PM

Subject: Re: Re: P.S. we only eliminated the big triggers

 

Wow, , with some minor changes I thought I was reading my biography. I

was so messed up for so long that I just gave up. The only time I had any relief

(until Dr. G) was when I was pregnant. Most of the OCD and anxiety that I had

been living with for 2 and a half decades went away. I was the happiest when I

was pregnant. A few months after giving birth, though, it would all come back.

After the birth of my last child in 2002, it came back worse than ever. Ery-Tab

and Dr. G saved my sanity. I would never have been able to take care of three

kids--Asperger's, autism, and ADHD with bipolar tendencies, without his medical

assistance. Not only have my kids improved, but he has helped me to get well

enough to be a better mom and better advocate for my kids.

 

I agree with Marcia and ...hang in there. My boys, especially Noah, have

a long way to go, but we're getting there, together as a family.

 

God Bless,

 

Robyn

 

p.s. Thanks to all those willing to share their struggles and expose their

weaknesses. It gives all of us strength.

From: <thecolemans4@...>

Subject: Re: Re: P.S. we only eliminated the big triggers

Date: Thursday, October 21, 2010, 5:41 PM

 

Hey ,

I can only imagine how hard that is.  With my son at 11 and struggling in much

of the same ways as when he was 8 (I was just looking back at his diagnostic

report and some things haven't changed a bit), I do have a lot of fear.  I hold

on to a lot of hope with Marcia's experience, saying her son was still wierd and

behavioral around this age too.

I hope you don't give up hope, but I know it's much harder to go along not

making that progress.  I hope very much that if XMRV turns out to be a big

factor, that even the harder to treat children may then be able to make

significant progress.  I've read about HIV related dementia and illness for

years because so much of what has been learned in that research applies to

autism, so my hopes are hanging pretty high on this retroviral thing.

So.... if this does turn out to be as big as it might be.. I wish I could find a

couple of the links where Dr Klimas has talked about some of her patients w/full

blown AIDS, one weighing like 80 lbs and looking to be on his death bed, who is

now very healthy with a beautiful muscular body and playing basketball for

hours, living a full life.  I've read published case studies of children with

HIV who had lost all speech and developing symptoms appearing just like autism

making (of them full) recoveries after antiretroviral therapy.  That in

particular ought to be blowing paradigms all over the place, but it just isn't

being heard yet.

Soooo.... it may be that what you are doing for your son w/Dr G right now is

protecting his immune system as much as you can, preventing him from getting any

worse, protecting him from significant pain and misery, allowing happiness, and

then... in a year or two (if we're lucky but I bet things race rapidly if this

link is proven), maybe you will have a TRUE treatment for him.  And if you do,

you can still count on more periods of major brain growth ahead during the teens

and early 20s where big milestones can still be met. 

In addition to that, there are reports of children not having speech, but

apparently they were absorbing the language despite their inability to speak it,

and then something would change and their speech would rapidly progress.  Some

cannot speak, and yet they can write/type their thoughts and feelings very

fluently - often as they get older. 

I know 14 sounds " old " in the years of autism - 11 and 9 feel " old " to me,

too. 

I often feel like time is racing away and they're not going like the typicals. 

I even (and often) tend to compare myself to the parents of typical children and

convince myself that if only I was a better mom, more consistent, more

stimulating, and had put a lot more effort into this (instead of being sick,

often paralyzed by my anxiety, OCD, cognitive dysfunction & fatigue), that maybe

my kids would be much further ahead ... that maybe they'd be .... " normal " . 

(How's that for distorted thinking?) 

I guess those are the times when my anxiety decides to make my ocd turn cruel. 

I think of " them " as their own entities, partly to try to separate my

self-identity from my illness, because I have actually experienced a period of

a

couple of years where I had a quiet brain that might be what most described as

normal.  That didn't happen until I was 30.  Pregnancy did something to my

immune system (and gee - my son's too apparently), and the majority of my

symptoms diminished so much.  When the songs and constant thinking of 20-50

things all at once quieted down, I freaked out and thought I had brain damage. 

I had to learn that *this* was how most people think - not the way I knew. 

(The

only thing I missed was my wonderful musical library playing in my head, and a

couple of 'happy' tics that when I felt the urge to leap into the air, I had a

surge of joy with it. I usually miss the music when it goes away, and sometimes

to listen to it is so incredibly wonderful that I wonder why I'd ever want to

cure 'this'. But it always passes.)

Anyway, I share that, because my brain has undergone lots of changes and

fluctuations over time.  I've had times where I could barely speak or think,

and

then I have periods where I'm relatively well.  I've had times since being

treated for PANDAS that I've believed I could truly be healed completely some

day.  Then stress or something sets off more problems, I come apart, and I

think

this is all a load of crap and I'm slap @*$ crazy.  When I get to that point,

though, I run to the doctor, get an ASO titer, and it will always be way up. 

Then I start (the doctor does, rather), restart, increase, or change the

antibiotics, and a week or two or three later, I'm feeling like if I'd just stay

like this but have a little (ok a lot) more energy, I would be satisfied and

content with it, because that wild ride I had just taken really sucked.  I'm

still in that " staggered " stage this week after switching from my cherished

doxycycline to Keflex after a total meltdown freakout that was utterly

disabling.  And on the other end of it now, all throughout the day, finding I

can work a full day at a desk (I wasn't even able to think well) without

stgruggling desperately to think and do), I just pause and say 'whoa'.  And I

can't describe it to anyone but you guys because no one else would understand. 

Certainly not the 'normals' I work with lol.

But without my OCD, I would never have found .

So anyway, I've had a lot of 'stages', and a lot of very dysfunctional times,

but even at 30 years old, I was able to wake up out of a fog and change in ways

that I didn't even understand was 'normal'. 

It's never too late.  Never give up hope.  At 9, I had severe PANDAS.  At 12,

I

got 'mono', which supposedly went away but I didn't really get better, and

months later, I was diagnosed with it again later - unclear when,

At 14, I still had 'mono', my father died of acute leukemia, my mom went to bed

for the next 8 years.  Because of this, the symptoms I had then were thought to

be depression or stress or difficulty coping.  But those symptoms were: I

couldn't make eye contact.  I couldn't speak to people at school.  I could

barely speak until my mom screamed at me and demanded that I answer her - she

called it sulking.  I twirled.  I had severe sensory issues.  I could hear

into

the house next door (yet loud music in headphones was awesome - go figure).  I

was OH!-CD for real.  I had major cognitive dysfunction.  It was my onset of

CFIDS that I was experiencing, but the way I experienced it felt a lot more like

the onset of autism is described.  I was obsessed - I had 18 aquariums in my

room and spent my time building ecosystems and reading encyclopedias.  I was

definitely NOT normal.  At 16, I underwent another dramatic change, and

suddenly

went from having severe social anxiety and near inability to speak to people to

having friends and waking up to the world around me.    Oh - and I toe-walked

until I was 28.  (I think discovering I loved merlot had something to do with

my

change at 28 - and it certainly has to do w/why I have kids lol. Maybe I should

treat this illness w/red wine... lol - no time for wine w/kids.)  I didn't get

PANDAS treated until after I met Dr Goldberg at one of the first chats I'd

attended and asked " Hey ... have you ever heard of strep causing OCD? " -

because

I had figured out that connection when I was 9.  (Of course, being 9, I

wouldn't

tell anyone I had a sore throat and ocd-ing because that meant I'd get a shot.)

So.  I walk around looking normal enough, and most people I meet don't know how

screwed up my brain is.  Sometimes I despise myself and my illness.  And

sometimes I don't feel screwed up anymore.  And I hope someday I will be even

better, and more consistently.  Right now my ASO titers are back up to

900something, so no wonder I've freaked out again.  But at 14, I was one

seriously dysfunctioning kid.  High IQ - inability to function at school. 

Test

at 1 & 2% in the nation on aptitude tests, and get Ds & Fs on my report card, yet

have to be in advanced placement classes.  Wierd mix.  They were so confused

with me lol.  " Why won't you just do you work?? "   Well - because I

couldn't.  

, I know your son is a lot sicker than this.  I just don't want you to

think that his age means that he can't get better and live a good life if a

treatment is found.  At 30, I was just barely starting to grow up.  I cling

desperately to hope for our kids.  I KNOW they will find something important,

and that we can treat it.  And I know that even desperately ill children can

develop at any point in their lives.  Read amazing aids recovery stories! There

are so many damage paradigms being broken in research right now that I can't

list them all right now - I think I referred to a few recently though...

Just keep doing what you're doing.  I wish I could take away the pain that

comes

with that helpless feeling you have, and instill hope when there is despair.

Love you all!

 

________________________________

From: M <melissa@...>

Sent: Thu, October 21, 2010 4:43:39 PM

Subject: Re: P.S. we only eliminated the big triggers

 

& Marcia,

Thank you so much for you thoughtful responses!

, I think your OCD may be a blessing, in that you are able to really dial

in to what the responses/reactions are! I feel like I usually finally figure it

out, but not nearly like you seem to be able to do!

Marcia, I've always been inspired and encouraged by you and your son's story!

We've been a patient of Dr. G for 9 years and can only hope and pray (and work,

too!) to be even remotely close to where is someday!

I started to reply to the two of you privately, but maybe there are others who

have a struggle similar to ours. My Josh will be 14 next month (seeing Dr. G

since he was 4-1/2) and even Dr. G has told us he is one of his more difficult

patients. Josh is basically non-verbal – he has a pretty large vocabulary, but

no real language. He can (sometimes) respond to yes/no questions and request his

basic needs, but that's really about all. He was just potty-trained within the

past year (though we still have some challenges), he's not able to do many basic

things easily/correctly – like dress himself, shower, brush his own teeth, eat

with a spoon without turning it over, etc. With all of that, he is the happiest,

most laid back, compliant, lovable kid on the planet!

I think my point of giving that background is that because of his lack of

language and no behavioral issues, it makes it very difficult to know what's

going on with him. So I sometimes wonder if he's a mystery to Dr. G as well.

Along with the protocol, we have done years of private speech therapy and OT. It

makes it very difficult to know that we're doing the same things that others do,

but without the same results. So when we suddenly need to cut out things from

our diet that didn't seem to be a problem 3 months ago, I guess I wonder if

we're sort of grasping at straws. And not that I want to give him anything that

would harm him, but I also don't want to deprive him if it's not truly causing

issues. I probably do allow too many carbs, but I am diligent about the main

things ... dairy, whole grains, milk chocolate, limit sugars. We've also

eliminated all nuts, berries and cinnamon. I have conceded to make the further

eliminations (no corn and take almost all of the carbs out of his diet

completely) and see what the next bloodwork shows, but I am admittedly feeling

very defeated and frustrated at the moment.

Marcia, I've always subscribed to that thought process of fighting the big

fights and knowing that I can only do what I can do... just makes it hard when

you feel like your best isn't good enough when my son (all of our kids) deserves

so much more! I know you've been there. And I believe in Josh the way I know you

always believed in . I know he's " in there. "

Sorry for the long post... guess I just needed to vent a little!

Thanks again for your kind words,

>

> ,

>

> We only eliminated the big triggers from 's diet. Dairy being the most

> important one to eliminate for him and too many sugars. You can make

> yourself crazy with diet. Try to eliminate the foods in the most allergic

> column of the allergy blood test. used to come up off the charts

> allergic to garlic but now it is okay. You can drive yourself crazy with

> worrying what you can and cannot feed them. Some find it so taxing and

> restrictive that they eventually give up the diet and even the medical

> treatments. That is a big mistake. The medical component is essential to

> recovery.

>

>

>

>

> Instead, I wish parents would just try to concentrate on eliminating the big

> triggers that greatly affect their child's immune systems instead of wasting

> hours washing pink dye off the Diflucan tablets. There are

> only a finite number of hours in each day and you need to spend your time on

> the things that will make the biggest difference for your child instead of

> sweating the small stuff. It would be better to spend this time working to

> teach your child the things they missed.

>

>

>

>

> Each kid is different and you need to do the best you can without making

> yourself or your child apprehensive about what they eat. It is important

> that your kid not feel totally different and that you do not wake up every

> morning (like I did) afraid to feed your child anything because it may cause

> a reaction. For most kids with immune problems, the most offending foods are

> usually dairy, whole wheat, and milk chocolate. And foods are not the only

> allergens that affect our kids. I still use " All " laundry detergent with no

> dyes and perfumes " to alleviate some stress on 's immune system.

>

> Best,

>

> Marcia

>

>

>

>

>

>

[Guest guest]

It is a true shame that you can not share this with so many others on other

lists. When I read your and other'sdescription about your feelings and

experiences it enlightens me to how my son is dealing with his illness. Your

comments about " (The only thing I missed was my wonderful musical library playing

in my head) explains a common behavior with Connor. He often sings quietly to

himself when working or playing. I looked at it as verbal self stim and have

often discouraged it. Your post put on the mark why he is so obstinate about

continuing to sing quietly - great way to put it - wonderful musical library

playing in my head. He loves music and now I am happy for him that he has it

with him endlessly,

Thanks for the post.

Bill

I will look for 's lectures. Her office manager at the Miami CFS Clinic

will know.

________________________________

From: <thecolemans4@...>

Sent: Thu, October 21, 2010 8:41:52 PM

Subject: Re: Re: P.S. we only eliminated the big triggers

Hey ,

I can only imagine how hard that is. With my son at 11 and struggling in much

of the same ways as when he was 8 (I was just looking back at his diagnostic

report and some things haven't changed a bit), I do have a lot of fear. I hold

on to a lot of hope with Marcia's experience, saying her son was still wierd and

behavioral around this age too.

I hope you don't give up hope, but I know it's much harder to go along not

making that progress. I hope very much that if XMRV turns out to be a big

factor, that even the harder to treat children may then be able to make

significant progress. I've read about HIV related dementia and illness for

years because so much of what has been learned in that research applies to

autism, so my hopes are hanging pretty high on this retroviral thing.

So.... if this does turn out to be as big as it might be.. I wish I could find a

couple of the links where Dr Klimas has talked about some of her patients w/full

blown AIDS, one weighing like 80 lbs and looking to be on his death bed, who is

now very healthy with a beautiful muscular body and playing basketball for

hours, living a full life. I've read published case studies of children with

HIV who had lost all speech and developing symptoms appearing just like autism

making (of them full) recoveries after antiretroviral therapy. That in

particular ought to be blowing paradigms all over the place, but it just isn't

being heard yet.

Soooo.... it may be that what you are doing for your son w/Dr G right now is

protecting his immune system as much as you can, preventing him from getting any

worse, protecting him from significant pain and misery, allowing happiness, and

then... in a year or two (if we're lucky but I bet things race rapidly if this

link is proven), maybe you will have a TRUE treatment for him. And if you do,

you can still count on more periods of major brain growth ahead during the teens

and early 20s where big milestones can still be met.

In addition to that, there are reports of children not having speech, but

apparently they were absorbing the language despite their inability to speak it,

and then something would change and their speech would rapidly progress. Some

cannot speak, and yet they can write/type their thoughts and feelings very

fluently - often as they get older.

I know 14 sounds " old " in the years of autism - 11 and 9 feel " old " to me, too.

I often feel like time is racing away and they're not going like the typicals.

I even (and often) tend to compare myself to the parents of typical children and

convince myself that if only I was a better mom, more consistent, more

stimulating, and had put a lot more effort into this (instead of being sick,

often paralyzed by my anxiety, OCD, cognitive dysfunction & fatigue), that maybe

my kids would be much further ahead ... that maybe they'd be .... " normal " .

(How's that for distorted thinking?)

I guess those are the times when my anxiety decides to make my ocd turn cruel.

I think of " them " as their own entities, partly to try to separate my

self-identity from my illness, because I have actually experienced a period of a

couple of years where I had a quiet brain that might be what most described as

normal. That didn't happen until I was 30. Pregnancy did something to my

immune system (and gee - my son's too apparently), and the majority of my

symptoms diminished so much. When the songs and constant thinking of 20-50

things all at once quieted down, I freaked out and thought I had brain damage.

I had to learn that *this* was how most people think - not the way I knew. (The

only thing I missed was my wonderful musical library playing in my head, and a

couple of 'happy' tics that when I felt the urge to leap into the air, I had a

surge of joy with it. I usually miss the music when it goes away, and sometimes

to listen to it is so incredibly wonderful that I wonder why I'd ever want to

cure 'this'. But it always passes.)

Anyway, I share that, because my brain has undergone lots of changes and

fluctuations over time. I've had times where I could barely speak or think, and

then I have periods where I'm relatively well. I've had times since being

treated for PANDAS that I've believed I could truly be healed completely some

day. Then stress or something sets off more problems, I come apart, and I think

this is all a load of crap and I'm slap @*$ crazy. When I get to that point,

though, I run to the doctor, get an ASO titer, and it will always be way up.

Then I start (the doctor does, rather), restart, increase, or change the

antibiotics, and a week or two or three later, I'm feeling like if I'd just stay

like this but have a little (ok a lot) more energy, I would be satisfied and

content with it, because that wild ride I had just taken really sucked. I'm

still in that " staggered " stage this week after switching from my cherished

doxycycline to Keflex after a total meltdown freakout that was utterly

disabling. And on the other end of it now, all throughout the day, finding I

can work a full day at a desk (I wasn't even able to think well) without

stgruggling desperately to think and do), I just pause and say 'whoa'. And I

can't describe it to anyone but you guys because no one else would understand.

Certainly not the 'normals' I work with lol.

But without my OCD, I would never have found .

So anyway, I've had a lot of 'stages', and a lot of very dysfunctional times,

but even at 30 years old, I was able to wake up out of a fog and change in ways

that I didn't even understand was 'normal'.

It's never too late. Never give up hope. At 9, I had severe PANDAS. At 12, I

got 'mono', which supposedly went away but I didn't really get better, and

months later, I was diagnosed with it again later - unclear when,

At 14, I still had 'mono', my father died of acute leukemia, my mom went to bed

for the next 8 years. Because of this, the symptoms I had then were thought to

be depression or stress or difficulty coping. But those symptoms were: I

couldn't make eye contact. I couldn't speak to people at school. I could

barely speak until my mom screamed at me and demanded that I answer her - she

called it sulking. I twirled. I had severe sensory issues. I could hear into

the house next door (yet loud music in headphones was awesome - go figure). I

was OH!-CD for real. I had major cognitive dysfunction. It was my onset of

CFIDS that I was experiencing, but the way I experienced it felt a lot more like

the onset of autism is described. I was obsessed - I had 18 aquariums in my

room and spent my time building ecosystems and reading encyclopedias. I was

definitely NOT normal. At 16, I underwent another dramatic change, and suddenly

went from having severe social anxiety and near inability to speak to people to

having friends and waking up to the world around me. Oh - and I toe-walked

until I was 28. (I think discovering I loved merlot had something to do with my

change at 28 - and it certainly has to do w/why I have kids lol. Maybe I should

treat this illness w/red wine... lol - no time for wine w/kids.) I didn't get

PANDAS treated until after I met Dr Goldberg at one of the first chats I'd

attended and asked " Hey ... have you ever heard of strep causing OCD? " - because

I had figured out that connection when I was 9. (Of course, being 9, I wouldn't

tell anyone I had a sore throat and ocd-ing because that meant I'd get a shot.)

So. I walk around looking normal enough, and most people I meet don't know how

screwed up my brain is. Sometimes I despise myself and my illness. And

sometimes I don't feel screwed up anymore. And I hope someday I will be even

better, and more consistently. Right now my ASO titers are back up to

900something, so no wonder I've freaked out again. But at 14, I was one

seriously dysfunctioning kid. High IQ - inability to function at school. Test

at 1 & 2% in the nation on aptitude tests, and get Ds & Fs on my report card, yet

have to be in advanced placement classes. Wierd mix. They were so confused

with me lol. " Why won't you just do you work?? " Well - because I couldn't.

, I know your son is a lot sicker than this. I just don't want you to

think that his age means that he can't get better and live a good life if a

treatment is found. At 30, I was just barely starting to grow up. I cling

desperately to hope for our kids. I KNOW they will find something important,

and that we can treat it. And I know that even desperately ill children can

develop at any point in their lives. Read amazing aids recovery stories! There

are so many damage paradigms being broken in research right now that I can't

list them all right now - I think I referred to a few recently though...

Just keep doing what you're doing. I wish I could take away the pain that comes

with that helpless feeling you have, and instill hope when there is despair.

Love you all!

________________________________

From: M <melissa@...>

Sent: Thu, October 21, 2010 4:43:39 PM

Subject: Re: P.S. we only eliminated the big triggers

& Marcia,

Thank you so much for you thoughtful responses!

, I think your OCD may be a blessing, in that you are able to really dial

in to what the responses/reactions are! I feel like I usually finally figure it

out, but not nearly like you seem to be able to do!

Marcia, I've always been inspired and encouraged by you and your son's story!

We've been a patient of Dr. G for 9 years and can only hope and pray (and work,

too!) to be even remotely close to where is someday!

I started to reply to the two of you privately, but maybe there are others who

have a struggle similar to ours. My Josh will be 14 next month (seeing Dr. G

since he was 4-1/2) and even Dr. G has told us he is one of his more difficult

patients. Josh is basically non-verbal – he has a pretty large vocabulary, but

no real language. He can (sometimes) respond to yes/no questions and request his

basic needs, but that's really about all. He was just potty-trained within the

past year (though we still have some challenges), he's not able to do many basic

things easily/correctly – like dress himself, shower, brush his own teeth, eat

with a spoon without turning it over, etc. With all of that, he is the happiest,

most laid back, compliant, lovable kid on the planet!

I think my point of giving that background is that because of his lack of

language and no behavioral issues, it makes it very difficult to know what's

going on with him. So I sometimes wonder if he's a mystery to Dr. G as well.

Along with the protocol, we have done years of private speech therapy and OT. It

makes it very difficult to know that we're doing the same things that others do,

but without the same results. So when we suddenly need to cut out things from

our diet that didn't seem to be a problem 3 months ago, I guess I wonder if

we're sort of grasping at straws. And not that I want to give him anything that

would harm him, but I also don't want to deprive him if it's not truly causing

issues. I probably do allow too many carbs, but I am diligent about the main

things ... dairy, whole grains, milk chocolate, limit sugars. We've also

eliminated all nuts, berries and cinnamon. I have conceded to make the further

eliminations (no corn and take almost all of the carbs out of his diet

completely) and see what the next bloodwork shows, but I am admittedly feeling

very defeated and frustrated at the moment.

Marcia, I've always subscribed to that thought process of fighting the big

fights and knowing that I can only do what I can do... just makes it hard when

you feel like your best isn't good enough when my son (all of our kids) deserves

so much more! I know you've been there. And I believe in Josh the way I know you

always believed in . I know he's " in there. "

Sorry for the long post... guess I just needed to vent a little!

Thanks again for your kind words,

>

> ,

>

> We only eliminated the big triggers from 's diet. Dairy being the most

> important one to eliminate for him and too many sugars. You can make

> yourself crazy with diet. Try to eliminate the foods in the most allergic

> column of the allergy blood test. used to come up off the charts

> allergic to garlic but now it is okay. You can drive yourself crazy with

> worrying what you can and cannot feed them. Some find it so taxing and

> restrictive that they eventually give up the diet and even the medical

> treatments. That is a big mistake. The medical component is essential to

> recovery.

>

>

>

>

> Instead, I wish parents would just try to concentrate on eliminating the big

> triggers that greatly affect their child's immune systems instead of wasting

> hours washing pink dye off the Diflucan tablets. There are

> only a finite number of hours in each day and you need to spend your time on

> the things that will make the biggest difference for your child instead of

> sweating the small stuff. It would be better to spend this time working to

> teach your child the things they missed.

>

>

>

>

> Each kid is different and you need to do the best you can without making

> yourself or your child apprehensive about what they eat. It is important

> that your kid not feel totally different and that you do not wake up every

> morning (like I did) afraid to feed your child anything because it may cause

> a reaction. For most kids with immune problems, the most offending foods are

> usually dairy, whole wheat, and milk chocolate. And foods are not the only

> allergens that affect our kids. I still use " All " laundry detergent with no

> dyes and perfumes " to alleviate some stress on 's immune system.

>

> Best,

>

> Marcia

>

>

>

>

>

>

[Guest guest]

Truly, Bill... he very well could be hearing it and just singing along.  Quiet

moments of work are sometimes the best times to " listen " .   Now if it were

other unusual animal sounds, squeaks, etc, I'd discourage it.

Sometimes music playing in my head (and when it won't play or I don't like the

current selection in the juke box - it was Barry Manillow the other day, gasp!,

& I wanted Bauhaus or Bowie that day), music playing nearby may be the only way

that I can work.  If I can't concentrate or think, and *especially* when I

can't

stay seated, all I have to do is start some quiet music or start singing to

myself and I can focus and stay put. 

And yes, truly I love it.  If I could choose to consistently keep my music &

the

joy that comes with it (consistently is the key word here), or be completely

healthy/well/normal - if I didn't have kids that need me at my best, it would be

a very difficult choice to make.

I just realized something I learned this week.  My anxiety must be treated, my

OCD must be quieter, or I can't hear the tunes. 

________________________________

From: Bill klimas <klimas_bill@...>

Sent: Fri, October 22, 2010 8:37:54 AM

Subject: Re: Re: P.S. we only eliminated the big triggers

 

It is a true shame that you can not share this with so many others on other

lists. When I read your and other'sdescription about your feelings and

experiences it enlightens me to how my son is dealing with his illness. Your

comments about " (The only thing I missed was my wonderful musical library playing

in my head) explains a common behavior with Connor. He often sings quietly to

himself when working or playing. I looked at it as verbal self stim and have

often discouraged it. Your post put on the mark why he is so obstinate about

continuing to sing quietly - great way to put it - wonderful musical library

playing in my head. He loves music and now I am happy for him that he has it

with him endlessly,

Thanks for the post.

Bill

I will look for 's lectures. Her office manager at the Miami CFS Clinic

will know.

________________________________

From: <thecolemans4@...>

Sent: Thu, October 21, 2010 8:41:52 PM

Subject: Re: Re: P.S. we only eliminated the big triggers

Hey ,

I can only imagine how hard that is. With my son at 11 and struggling in much

of the same ways as when he was 8 (I was just looking back at his diagnostic

report and some things haven't changed a bit), I do have a lot of fear. I hold

on to a lot of hope with Marcia's experience, saying her son was still wierd and

behavioral around this age too.

I hope you don't give up hope, but I know it's much harder to go along not

making that progress. I hope very much that if XMRV turns out to be a big

factor, that even the harder to treat children may then be able to make

significant progress. I've read about HIV related dementia and illness for

years because so much of what has been learned in that research applies to

autism, so my hopes are hanging pretty high on this retroviral thing.

So.... if this does turn out to be as big as it might be.. I wish I could find a

couple of the links where Dr Klimas has talked about some of her patients w/full

blown AIDS, one weighing like 80 lbs and looking to be on his death bed, who is

now very healthy with a beautiful muscular body and playing basketball for

hours, living a full life. I've read published case studies of children with

HIV who had lost all speech and developing symptoms appearing just like autism

making (of them full) recoveries after antiretroviral therapy. That in

particular ought to be blowing paradigms all over the place, but it just isn't

being heard yet.

Soooo.... it may be that what you are doing for your son w/Dr G right now is

protecting his immune system as much as you can, preventing him from getting any

worse, protecting him from significant pain and misery, allowing happiness, and

then... in a year or two (if we're lucky but I bet things race rapidly if this

link is proven), maybe you will have a TRUE treatment for him. And if you do,

you can still count on more periods of major brain growth ahead during the teens

and early 20s where big milestones can still be met.

In addition to that, there are reports of children not having speech, but

apparently they were absorbing the language despite their inability to speak it,

and then something would change and their speech would rapidly progress. Some

cannot speak, and yet they can write/type their thoughts and feelings very

fluently - often as they get older.

I know 14 sounds " old " in the years of autism - 11 and 9 feel " old " to me, too.

I often feel like time is racing away and they're not going like the typicals.

I even (and often) tend to compare myself to the parents of typical children and

convince myself that if only I was a better mom, more consistent, more

stimulating, and had put a lot more effort into this (instead of being sick,

often paralyzed by my anxiety, OCD, cognitive dysfunction & fatigue), that maybe

my kids would be much further ahead ... that maybe they'd be .... " normal " .

(How's that for distorted thinking?)

I guess those are the times when my anxiety decides to make my ocd turn cruel.

I think of " them " as their own entities, partly to try to separate my

self-identity from my illness, because I have actually experienced a period of a

couple of years where I had a quiet brain that might be what most described as

normal. That didn't happen until I was 30. Pregnancy did something to my

immune system (and gee - my son's too apparently), and the majority of my

symptoms diminished so much. When the songs and constant thinking of 20-50

things all at once quieted down, I freaked out and thought I had brain damage.

I had to learn that *this* was how most people think - not the way I knew. (The

only thing I missed was my wonderful musical library playing in my head, and a

couple of 'happy' tics that when I felt the urge to leap into the air, I had a

surge of joy with it. I usually miss the music when it goes away, and sometimes

to listen to it is so incredibly wonderful that I wonder why I'd ever want to

cure 'this'. But it always passes.)

Anyway, I share that, because my brain has undergone lots of changes and

fluctuations over time. I've had times where I could barely speak or think, and

then I have periods where I'm relatively well. I've had times since being

treated for PANDAS that I've believed I could truly be healed completely some

day. Then stress or something sets off more problems, I come apart, and I think

this is all a load of crap and I'm slap @*$ crazy. When I get to that point,

though, I run to the doctor, get an ASO titer, and it will always be way up.

Then I start (the doctor does, rather), restart, increase, or change the

antibiotics, and a week or two or three later, I'm feeling like if I'd just stay

like this but have a little (ok a lot) more energy, I would be satisfied and

content with it, because that wild ride I had just taken really sucked. I'm

still in that " staggered " stage this week after switching from my cherished

doxycycline to Keflex after a total meltdown freakout that was utterly

disabling. And on the other end of it now, all throughout the day, finding I

can work a full day at a desk (I wasn't even able to think well) without

stgruggling desperately to think and do), I just pause and say 'whoa'. And I

can't describe it to anyone but you guys because no one else would understand.

Certainly not the 'normals' I work with lol.

But without my OCD, I would never have found .

So anyway, I've had a lot of 'stages', and a lot of very dysfunctional times,

but even at 30 years old, I was able to wake up out of a fog and change in ways

that I didn't even understand was 'normal'.

It's never too late. Never give up hope. At 9, I had severe PANDAS. At 12, I

got 'mono', which supposedly went away but I didn't really get better, and

months later, I was diagnosed with it again later - unclear when,

At 14, I still had 'mono', my father died of acute leukemia, my mom went to bed

for the next 8 years. Because of this, the symptoms I had then were thought to

be depression or stress or difficulty coping. But those symptoms were: I

couldn't make eye contact. I couldn't speak to people at school. I could

barely speak until my mom screamed at me and demanded that I answer her - she

called it sulking. I twirled. I had severe sensory issues. I could hear into

the house next door (yet loud music in headphones was awesome - go figure). I

was OH!-CD for real. I had major cognitive dysfunction. It was my onset of

CFIDS that I was experiencing, but the way I experienced it felt a lot more like

the onset of autism is described. I was obsessed - I had 18 aquariums in my

room and spent my time building ecosystems and reading encyclopedias. I was

definitely NOT normal. At 16, I underwent another dramatic change, and suddenly

went from having severe social anxiety and near inability to speak to people to

having friends and waking up to the world around me. Oh - and I toe-walked

until I was 28. (I think discovering I loved merlot had something to do with my

change at 28 - and it certainly has to do w/why I have kids lol. Maybe I should

treat this illness w/red wine... lol - no time for wine w/kids.) I didn't get

PANDAS treated until after I met Dr Goldberg at one of the first chats I'd

attended and asked " Hey ... have you ever heard of strep causing OCD? " - because

I had figured out that connection when I was 9. (Of course, being 9, I wouldn't

tell anyone I had a sore throat and ocd-ing because that meant I'd get a shot.)

So. I walk around looking normal enough, and most people I meet don't know how

screwed up my brain is. Sometimes I despise myself and my illness. And

sometimes I don't feel screwed up anymore. And I hope someday I will be even

better, and more consistently. Right now my ASO titers are back up to

900something, so no wonder I've freaked out again. But at 14, I was one

seriously dysfunctioning kid. High IQ - inability to function at school. Test

at 1 & 2% in the nation on aptitude tests, and get Ds & Fs on my report card, yet

have to be in advanced placement classes. Wierd mix. They were so confused

with me lol. " Why won't you just do you work?? " Well - because I couldn't.

, I know your son is a lot sicker than this. I just don't want you to

think that his age means that he can't get better and live a good life if a

treatment is found. At 30, I was just barely starting to grow up. I cling

desperately to hope for our kids. I KNOW they will find something important,

and that we can treat it. And I know that even desperately ill children can

develop at any point in their lives. Read amazing aids recovery stories! There

are so many damage paradigms being broken in research right now that I can't

list them all right now - I think I referred to a few recently though...

Just keep doing what you're doing. I wish I could take away the pain that comes

with that helpless feeling you have, and instill hope when there is despair.

Love you all!

________________________________

From: M <melissa@...>

Sent: Thu, October 21, 2010 4:43:39 PM

Subject: Re: P.S. we only eliminated the big triggers

& Marcia,

Thank you so much for you thoughtful responses!

, I think your OCD may be a blessing, in that you are able to really dial

in to what the responses/reactions are! I feel like I usually finally figure it

out, but not nearly like you seem to be able to do!

Marcia, I've always been inspired and encouraged by you and your son's story!

We've been a patient of Dr. G for 9 years and can only hope and pray (and work,

too!) to be even remotely close to where is someday!

I started to reply to the two of you privately, but maybe there are others who

have a struggle similar to ours. My Josh will be 14 next month (seeing Dr. G

since he was 4-1/2) and even Dr. G has told us he is one of his more difficult

patients. Josh is basically non-verbal – he has a pretty large vocabulary, but

no real language. He can (sometimes) respond to yes/no questions and request his

basic needs, but that's really about all. He was just potty-trained within the

past year (though we still have some challenges), he's not able to do many basic

things easily/correctly – like dress himself, shower, brush his own teeth, eat

with a spoon without turning it over, etc. With all of that, he is the happiest,

most laid back, compliant, lovable kid on the planet!

I think my point of giving that background is that because of his lack of

language and no behavioral issues, it makes it very difficult to know what's

going on with him. So I sometimes wonder if he's a mystery to Dr. G as well.

Along with the protocol, we have done years of private speech therapy and OT. It

makes it very difficult to know that we're doing the same things that others do,

but without the same results. So when we suddenly need to cut out things from

our diet that didn't seem to be a problem 3 months ago, I guess I wonder if

we're sort of grasping at straws. And not that I want to give him anything that

would harm him, but I also don't want to deprive him if it's not truly causing

issues. I probably do allow too many carbs, but I am diligent about the main

things ... dairy, whole grains, milk chocolate, limit sugars. We've also

eliminated all nuts, berries and cinnamon. I have conceded to make the further

eliminations (no corn and take almost all of the carbs out of his diet

completely) and see what the next bloodwork shows, but I am admittedly feeling

very defeated and frustrated at the moment.

Marcia, I've always subscribed to that thought process of fighting the big

fights and knowing that I can only do what I can do... just makes it hard when

you feel like your best isn't good enough when my son (all of our kids) deserves

so much more! I know you've been there. And I believe in Josh the way I know you

always believed in . I know he's " in there. "

Sorry for the long post... guess I just needed to vent a little!

Thanks again for your kind words,

>

> ,

>

> We only eliminated the big triggers from 's diet. Dairy being the most

> important one to eliminate for him and too many sugars. You can make

> yourself crazy with diet. Try to eliminate the foods in the most allergic

> column of the allergy blood test. used to come up off the charts

> allergic to garlic but now it is okay. You can drive yourself crazy with

> worrying what you can and cannot feed them. Some find it so taxing and

> restrictive that they eventually give up the diet and even the medical

> treatments. That is a big mistake. The medical component is essential to

> recovery.

>

>

>

>

> Instead, I wish parents would just try to concentrate on eliminating the big

> triggers that greatly affect their child's immune systems instead of wasting

> hours washing pink dye off the Diflucan tablets. There are

> only a finite number of hours in each day and you need to spend your time on

> the things that will make the biggest difference for your child instead of

> sweating the small stuff. It would be better to spend this time working to

> teach your child the things they missed.

>

>

>

>

> Each kid is different and you need to do the best you can without making

> yourself or your child apprehensive about what they eat. It is important

> that your kid not feel totally different and that you do not wake up every

> morning (like I did) afraid to feed your child anything because it may cause

> a reaction. For most kids with immune problems, the most offending foods are

> usually dairy, whole wheat, and milk chocolate. And foods are not the only

> allergens that affect our kids. I still use " All " laundry detergent with no

> dyes and perfumes " to alleviate some stress on 's immune system.

>

> Best,

>

> Marcia

>

>

>

>

>

>