RE: Re: Need some insights -- help!

[Guest guest]

Marcia has said that, and it has also been my

experience with both of my boys (now 5 & 7 and not on

the protocol at this time although my youngest needs

to be and my oldest would benefit). My oldest used to

be very reactive, and now you really can't tell unless

he eats alot of the same wrong food for about 5 days

or a lot more (depending on what it is, soy will still

really set him off). My youngest is not very obvious

either - never really was, but he does have to be

restricted or it will eventually affect him. But no,

my son does NOT fall apart at all anymore, and I mean

a trace was all it took in the beginning. It declined

w/in two years on the protocol.

I have to periodically screw up for a long time and

witness the results to reinforce my belief that I was

not imagining it all and that they can't continue to

eat these things all the time, because it's hard to

tell that it hurts them anymore. But it does in the

long term - but not once in a while. And it's just

that once-in-a-while's can become all the time all too

easily. When it does, and I start witnessing the

subtle decline, I pull back again and wonder why I

ever thought I could get away with that (yet).

So hang in there. Vigilance now will/should hopefully

pay off in the future.

--- princesspeach <donnaaron@...> wrote:

> Kristy, you just asked the $64,000 question!

>

> I think it was Marcia H. who told me that her son

> eventually was able

> to handle these kinds of " insults " much better, but

> it took a

> looooonnnng time.

>

> Donna

>

__________________________________________________

[Guest guest]

Marcia,

THANK YOU SO MUCH!! Very uplifting message. I really appreciate it.

Kristy

PS: You may already know this, but from a fellow pizza & ice cream lover who

has problems with dairy, here goes... It sounds like your son is suffering

from lactose intolerance when he consumes dairy, esp. since he consumes it

infrequently. The body will stop producing lactase (the sugar that breaks

down lactose) if it's not needed, so even a typically non-lactose intolerant

person can be lactose intolerant following a period of non-consumption of

dairy (after a stomach bug, for example). Taking an OTC product like Lactase

can help tremendously (pretty much eliminate the problem). BTW, I cannot

digest most regular ice cream, even with enzymes, but have no problem with

the low-fat varieties (and cannot tell much difference in taste). Dreyers

light-churned is esp. good.

Re: Need some insights -- help!

Kristy,

They do hit the point when their systems aren't so fragile. He used to

disinigrate with the smallest amount of dairy. When that happened I would

increase the water intake and exercise. But now there isn't much that can

throw off. He eats everything other kids his age do. (Don't tell Dr. G.

about the occassional pizza) Sometimes when he has an offending food (for

him ice cream) he gets a stomach ache and the runs, but it never affects his

mind anymore. When this happens, I just ask him what he ate and remind him

he needs to limit his intake. He now knows how to regulate this himself.

Recently, I have turned the meds over to , because next year he is off

to college and I won't be there to do it. Since he was feeling invincible, a

bit cocky, and like he no longer had Autism, he took it upon himself to not

take the afternoon antiviral. I didn't realize what was going on until I saw

a kid who was acting a bit Autistic and no longer feeling okay. Dr. G sat

him down and explained to him the repercussions of doing this and it hasn't

been a problem since. He is back in full force.

I know the point where most of you are now it seems this will never happen

to your kid. I too felt my kid would never get better. I was so envious of

the kids who did well and would sell my soul for that to happen to mine.

Most of what I did was so I wouldn't have guilt, if I ever had to place him

somewhere. He used to be so weird. I'm thankful for that guilt, because

without it I would have given up a long time ago and he never would have

gotten better.

It is so hard to get up every day and keep teaching them everything

everyone else just learns. But you have to hang on. We are all they have and

no one else but a parent would take this job. It is such a slow process. It

is not like you wake up and one day they are better. It is more like one day

you notice they are a little less bizarre and you have one less thing you

have to teach them. Believe it or not this kid who is applying to Stanford,

is getting almost straight " A's " in high school, drives his friends to

school, aced his ACT, is taking 4 Advanced Placement classes his senior year

of high school, just won " athlete of the meet " in cross country out of 200

kids, still has a few issues. He hates calling friends because he is still

anxious about rejection. (I think this is left over from when we lived in

Minnesota and he was the target of a group of bullies.) I still have to

remind him to wash his face, brush his teeth and put on deodorant. It is

never done. It is hard to realize when you're in the trenches, but looking

back you can see what your efforts accomplish. If I had known then what I

know now, I wouldn't have been so neurotic about every backslide and

concentrated more on the big picture. But you don't know that until you

lived it. Hang in there and Donna call Dr. G's office and tell them you need

help now. Then call me and by putting our heads together, maybe we can come

up with something to do in the mean time.

Marcia Hinds

805 497-8202

[Guest guest]

Marcia,

One more question....any tips on how to pay for Stanford after the expenses

of autism???

Kristy ;-)

[Guest guest]

BTW, guys. Just wanted to throw this in here.

Often (like almost all the time), the ONLY way that I

can tell that I am sick is by the changes in my

behavior. Usually, I realize I'm not connecting with

anyone, sequestering myself away, my house gets messy,

the dishes pile up in the sink, I'm unable to plan

meals well, I feel overwhelming anxiety or am unable

to focus, and after I've suffered that a while (don't

know why after so many years of this I can still be

sooo slow to catch on!!!), it will finally dawn on me

that I've been off of antibiotics for a few weeks now

(or Diflucan, whatever) and that I've regressed over

this period of time. Perhaps I'll feel the wheezing

in my chest and feel tired and I just didn't notice it

(which is frequently the case w/mycoplasma), but

usually, I simply cannot tell that I feel physically

bad. Usually I've already changed my physical

activity levels without realizing it so I don't know

that I'm extremely tired, or I just don't remember the

comparison to how I usually feel.

Then, as soon as I start an " appropriate " antibiotic,

I'll start to feel so much better, but even then I'm

slow to catch on. On that 3rd day, I'm like WOW, look

at all I've acomplished! What the heck is going on...

OH yeah... I just started doxycycline. It's after I

once again notice the changes in my behavior (back on

the upswing) that I realize that hey, I also kinda

feel better, too.

However, if it was Biaxin, or Zithromax, I'll get more

energy but more anxiety also, and I won't have that

wow moment, but rather about 5 days into the

antibiotic start wondering if I've been experiencing a

placebo effect all along. Finally I made the

connection to which types of antibiotics help and

which exacerbate, whereas before in the peak of

PANDAS, I would not have noticed the difference

because at that time, ANY antibiotic brought about

such significant improvement that I wouldn't have

noticed the difference before my ups and downs became

more subtle.

Just wanted to share that with you guys, because even

though your child may feel fine, no sore throat, etc,

does not mean that there is not an illness going on.

And also, I wanted you all to be aware that sometimes

erythromycin can actually exacerbate some parts of OCD

or PANDAS, even though initially it brought about

wonderful improvements.

--- jinyang061629 <yanglou@...> wrote:

He

> also told me he

> feels fine, do not know why he just losed it. >

>

He says he feels fine

> (i.e., healthy).

> > Donna

>

__________________________________________________

[Guest guest]

Pardon my ignorance but is Erythromycin the same as Eryped? My son's ASO

titer initially came down on Eryped but not they are coming back up. Dr.

G increased the dose to 3 times a day so I hoping for some improvement

but he said he might have to change it. Thnaks, Jerri

wrote:

> BTW, guys. Just wanted to throw this in here.

> Often (like almost all the time), the ONLY way that I

> can tell that I am sick is by the changes in my

> behavior. Usually, I realize I'm not connecting with

> anyone, sequestering myself away, my house gets messy,

> the dishes pile up in the sink, I'm unable to plan

> meals well, I feel overwhelming anxiety or am unable

> to focus, and after I've suffered that a while (don't

> know why after so many years of this I can still be

> sooo slow to catch on!!!), it will finally dawn on me

> that I've been off of antibiotics for a few weeks now

> (or Diflucan, whatever) and that I've regressed over

> this period of time. Perhaps I'll feel the wheezing

> in my chest and feel tired and I just didn't notice it

> (which is frequently the case w/mycoplasma), but

> usually, I simply cannot tell that I feel physically

> bad. Usually I've already changed my physical

> activity levels without realizing it so I don't know

> that I'm extremely tired, or I just don't remember the

> comparison to how I usually feel.

>

> Then, as soon as I start an " appropriate " antibiotic,

> I'll start to feel so much better, but even then I'm

> slow to catch on. On that 3rd day, I'm like WOW, look

> at all I've acomplished! What the heck is going on...

> OH yeah... I just started doxycycline. It's after I

> once again notice the changes in my behavior (back on

> the upswing) that I realize that hey, I also kinda

> feel better, too.

>

> However, if it was Biaxin, or Zithromax, I'll get more

> energy but more anxiety also, and I won't have that

> wow moment, but rather about 5 days into the

> antibiotic start wondering if I've been experiencing a

> placebo effect all along. Finally I made the

> connection to which types of antibiotics help and

> which exacerbate, whereas before in the peak of

> PANDAS, I would not have noticed the difference

> because at that time, ANY antibiotic brought about

> such significant improvement that I wouldn't have

> noticed the difference before my ups and downs became

> more subtle.

>

> Just wanted to share that with you guys, because even

> though your child may feel fine, no sore throat, etc,

> does not mean that there is not an illness going on.

> And also, I wanted you all to be aware that sometimes

> erythromycin can actually exacerbate some parts of OCD

> or PANDAS, even though initially it brought about

> wonderful improvements.

>

>

>

>

> --- jinyang061629 <yanglou@...> wrote:

>

> He

>

>> also told me he

>> feels fine, do not know why he just losed it. >

>>

>

>

>>

>>

>

> He says he feels fine

>

>> (i.e., healthy).

>>

>>> Donna

>>>

>

>

> __________________________________________________

>

[Guest guest]

Yes, Jerri, it is the same. Now don't let my

experience scare you away from it, simply be aware of

that possibility. Lots of kids DO improve

significantly (and recover from PANDAS) on the

ery-ped/erythromycin, and I don't know that I wasn't

very careful in previous posts to emphasize that just

'cause I had a problem with it doesn't mean all

will... just that if your child's symptoms are NOT

improving (and that it is not because the ASO won't

come down), then you'd need to start thinking about

it... In my experience, once the most dramatic

symptoms subsided and I was off then back on, I was

able to tell in 3-5 days that it was making parts (the

racing thoughts and difficulty focusing, and even

withdrawal from people) a bit worse.

I would not stop ery-ped or scare anyone away because

of my experience.

If any of you guys are like me, just hearing the

negative possibilities can sometimes make me start

worrying about them. I don't want to inflict that

kind of thing on you guys. I really think that you

would notice, just maybe not suspect the antibiotic

itself if it happened.

My experience was different from my youngest son's ...

he did just fine on it and I always saw improvement.

He did not have an elevated ASO (like I did) and does

not have PANDAS (yet), but he does get OCD w/strep and

sinus infections. Everytime he was on ery-ped, he

brightened significantly. So even though we're

similar in a lot of ways we react to some meds, this

area doesn't.

Would you ask Dr G what he thinks about the recent

study on minocycline and if he would consider using it

in the future if they're ruling out the problem

w/permanent teeth markings? I'd really like to know

what he has to say about it. We won't be able to see

him any time in the near future, and I'd like to know

his opinion. I'm wondering if it's like doxycycline

(pretty sure it must be), and since I respond so well

to it, I was really interested in it for my youngest,

who is not doing well right now.

How's your son's symptoms? And what's his ASO hanging

around at? (if you wanna answer).

Later-

--- Jerri Gann <njgann@...> wrote:

> Pardon my ignorance but is Erythromycin the same as

> Eryped? My son's ASO

> titer initially came down on Eryped but not they are

> coming back up. Dr.

> G increased the dose to 3 times a day so I hoping

> for some improvement

> but he said he might have to change it. Thnaks,

> Jerri

>

__________________________________________________

[Guest guest]

First off, I need to say I feel like you do most of the time when you

say you can tell something is off (unable to think about meals,

tired...etc) I have been on antibiotics for an extended period of time

recently, once because I got a bite from a deer tick and then because I

got walking pneumonia, and I never felt a dramatic improvement from the

antibiotic. Anyway, my son's ASO titer started very high. I think like

800. We got him down to 190 or something, ( I tried to look in the copy

of my lab reports but I am way too tired) and now they are going back up

with the last two lab reports, back up in the 200 range I think. Dr G

said to increase the dose to three times a day and if this doesn't work

he has to switch the antibiotic. He said he likes Eryped because it does

other things to help children as well but sometimes it quits working on

strep and in this case he has to change it. So this is all I know at

this time. I will ask him about the minocycline at my next phone

consult. If I can remember. I need to make a note of it somehow. Too

much on my plate right now. Helping with my mother in law as well. Hope

this makes sense. Too tired like I said. Anyway, my next phone consult

is Oct. 26 and I did make a note just now. So hopefully I will remember

to ask. Thank you so much, for all your helpful posts. I have

talked to Dr G many times about different things you have suggested and

they have always been helpful. Jerri

wrote:

> Yes, Jerri, it is the same. Now don't let my

> experience scare you away from it, simply be aware of

> that possibility. Lots of kids DO improve

> significantly (and recover from PANDAS) on the

> ery-ped/erythromycin, and I don't know that I wasn't

> very careful in previous posts to emphasize that just

> 'cause I had a problem with it doesn't mean all

> will... just that if your child's symptoms are NOT

> improving (and that it is not because the ASO won't

> come down), then you'd need to start thinking about

> it... In my experience, once the most dramatic

> symptoms subsided and I was off then back on, I was

> able to tell in 3-5 days that it was making parts (the

> racing thoughts and difficulty focusing, and even

> withdrawal from people) a bit worse.

>

> I would not stop ery-ped or scare anyone away because

> of my experience.

>

> If any of you guys are like me, just hearing the

> negative possibilities can sometimes make me start

> worrying about them. I don't want to inflict that

> kind of thing on you guys. I really think that you

> would notice, just maybe not suspect the antibiotic

> itself if it happened.

>

> My experience was different from my youngest son's ...

> he did just fine on it and I always saw improvement.

> He did not have an elevated ASO (like I did) and does

> not have PANDAS (yet), but he does get OCD w/strep and

> sinus infections. Everytime he was on ery-ped, he

> brightened significantly. So even though we're

> similar in a lot of ways we react to some meds, this

> area doesn't.

>

> Would you ask Dr G what he thinks about the recent

> study on minocycline and if he would consider using it

> in the future if they're ruling out the problem

> w/permanent teeth markings? I'd really like to know

> what he has to say about it. We won't be able to see

> him any time in the near future, and I'd like to know

> his opinion. I'm wondering if it's like doxycycline

> (pretty sure it must be), and since I respond so well

> to it, I was really interested in it for my youngest,

> who is not doing well right now.

>

> How's your son's symptoms? And what's his ASO hanging

> around at? (if you wanna answer).

>

> Later-

>

>

> --- Jerri Gann <njgann@...> wrote:

>

>

>> Pardon my ignorance but is Erythromycin the same as

>> Eryped? My son's ASO

>> titer initially came down on Eryped but not they are

>> coming back up. Dr.

>> G increased the dose to 3 times a day so I hoping

>> for some improvement

>> but he said he might have to change it. Thnaks,

>> Jerri

>>

>>

>

> __________________________________________________

>

[Guest guest]

Marcia,

Well said !! This list has the best people participating to support each

other. I love reading all the positive stories of true unconditional love.

Take care,

>From: <hindssite@...>

>Reply-

><krnardini@...>,< >

>Subject: Re: Need some insights -- help!

>Date: Fri, 22 Sep 2006 07:43:30 -0700

>

>Kristy,

>If I knew the answer of how to pay for college I would share it. I am

>still in hock from the first kid going to college. I don't think anyone

>can afford college anymore, even if you don't have kids as expensive as

>ours. But isn't that a great problem to have? My kid who the shrinks said

>would end up in an instution is well enough to go to college. If he does

>get into Stanford, which is a big if (I think you have to be a star athlete

>or have a patent), I will be going back to work full time after leaves

>for college. Right now I tutor and work with affected kids, but it is not

>enough. My husband flys for an airline (not the best place to be right now)

>and with all the pay cuts we are not making it without the college

>expenses. I keep hoping that if I ever finish that book about , I will

>help people as well as help us get out of hock. But I am the richest woman

>in the world, because is better and you can't buy that with all the

>money in the world. It is just easier to do if you have the funds to hire

>people to help you teach them. I was not in that posititon and had to do

>everything using only family and one therapist I trained myself and to help

>me. taught me anything is possible.

>Marcia

>

>