Re: Hanging on by a thread!

[Guest guest]

Oh, ! I so wish I could wave a magic wand and have him there already.

Let's just fast-forward up to the part where he's admitted to . (Well,

heck, if we can fast-forward, let's just skip to the part where he's lots

better.) I don't suppose having your psychiatrist call would make things

go quicker? Keep taking us along with you.

> Hi all,

>

> I am just about at my wit's end with my son and getting him into 's.

After waiting since mid-November, 2 weeks ago I finally get some " probable "

dates of the week of 3/5 or 3/12. Well, here we are, still no definite date. I'm

calling almost daily at this point because things are continuing to go downhill

with my son.

>

> The urinating and defecating is increasing in frequency (outside the bathroom)

and the worst part is he just plain does not care, period. Today he peed all

over the back seat of my car, he sits in the car for quite a while in the garage

whenever we come home from going somewhere. Then I go to the store for an hour,

come home and there's a glass on the kitchen counter half full of pee! Then, I

go back out to my car to grab a bag of groceries from the back seat, I see an

empty Doritos bag my son had eaten on way home, I go to grab it and it's full of

pee!!!!

>

> Now he's not doing this at school, but I think partly because he tries

avoiding the bathroom there. And it's not a contamination issue with the

bathroom, because on the flip side, he'll go in the bathroom here and sit on the

toilet for well over an hour in the dark, just sitting there, sometimes not to

even go to the bathroom.

>

> When I drive in the car now he will kick my arm from the back seat and

constantly takes the shoulder strap off and puts it around his chest complaining

it's " too tight " So I have to keep the rearview mirror pointed at him and

continually have to yell at him every few minutes to put his seatbelt back on.

>

> This is an almost 16 year old boy who 6 months ago was nowhere near this

state. For the most part everything was " normal " except of course his

Tourette's/tics. He's been tested for PANDAS and just had a boat load of blood

work done for everything under the sun and so far nothing stands out as a

problem whatsoever. His psychiatrist feels it's a " psychotic regression, " which

I'd have to agree, however there is still the puzzling fact that he does *not*

exhibit these types of behaviors at school and if you were to sit and chat with

him, you'd never have a clue anything was amiss. He does only go to school 3

days a week, but still, how is he able to turn this on and off like a switch?!!

>

> I know it could be a lot worse and I'm grateful it's not, but I just don't

want it to get any worse and I pray that 's calls me with a date asap! I'm

so at the end of my rope, barely hanging on!

>

>

>

>

[Guest guest]

Oh, ! I so wish I could wave a magic wand and have him there already.

Let's just fast-forward up to the part where he's admitted to . (Well,

heck, if we can fast-forward, let's just skip to the part where he's lots

better.) I don't suppose having your psychiatrist call would make things

go quicker? Keep taking us along with you.

> Hi all,

>

> I am just about at my wit's end with my son and getting him into 's.

After waiting since mid-November, 2 weeks ago I finally get some " probable "

dates of the week of 3/5 or 3/12. Well, here we are, still no definite date. I'm

calling almost daily at this point because things are continuing to go downhill

with my son.

>

> The urinating and defecating is increasing in frequency (outside the bathroom)

and the worst part is he just plain does not care, period. Today he peed all

over the back seat of my car, he sits in the car for quite a while in the garage

whenever we come home from going somewhere. Then I go to the store for an hour,

come home and there's a glass on the kitchen counter half full of pee! Then, I

go back out to my car to grab a bag of groceries from the back seat, I see an

empty Doritos bag my son had eaten on way home, I go to grab it and it's full of

pee!!!!

>

> Now he's not doing this at school, but I think partly because he tries

avoiding the bathroom there. And it's not a contamination issue with the

bathroom, because on the flip side, he'll go in the bathroom here and sit on the

toilet for well over an hour in the dark, just sitting there, sometimes not to

even go to the bathroom.

>

> When I drive in the car now he will kick my arm from the back seat and

constantly takes the shoulder strap off and puts it around his chest complaining

it's " too tight " So I have to keep the rearview mirror pointed at him and

continually have to yell at him every few minutes to put his seatbelt back on.

>

> This is an almost 16 year old boy who 6 months ago was nowhere near this

state. For the most part everything was " normal " except of course his

Tourette's/tics. He's been tested for PANDAS and just had a boat load of blood

work done for everything under the sun and so far nothing stands out as a

problem whatsoever. His psychiatrist feels it's a " psychotic regression, " which

I'd have to agree, however there is still the puzzling fact that he does *not*

exhibit these types of behaviors at school and if you were to sit and chat with

him, you'd never have a clue anything was amiss. He does only go to school 3

days a week, but still, how is he able to turn this on and off like a switch?!!

>

> I know it could be a lot worse and I'm grateful it's not, but I just don't

want it to get any worse and I pray that 's calls me with a date asap! I'm

so at the end of my rope, barely hanging on!

>

>

>

>

[Guest guest]

Hi

I don't have any words of wisdom, but just want you to know that you are not

alone -- all of us out here are thinking of you and praying that you will get

that call from . I hope that once he is there (and getting the help he so

desperately needs), you will be able to find some respite and regain your

balance. He will get better, so do not let go of that thread.

Thinking of you,

Lee

Hanging on by a thread!

Hi all,

I am just about at my wit's end with my son and getting him into 's. After

waiting since mid-November, 2 weeks ago I finally get some " probable " dates of

the week of 3/5 or 3/12. Well, here we are, still no definite date. I'm calling

almost daily at this point because things are continuing to go downhill with my

son.

The urinating and defecating is increasing in frequency (outside the bathroom)

and the worst part is he just plain does not care, period. Today he peed all

over the back seat of my car, he sits in the car for quite a while in the garage

whenever we come home from going somewhere. Then I go to the store for an hour,

come home and there's a glass on the kitchen counter half full of pee! Then, I

go back out to my car to grab a bag of groceries from the back seat, I see an

empty Doritos bag my son had eaten on way home, I go to grab it and it's full of

pee!!!!

Now he's not doing this at school, but I think partly because he tries avoiding

the bathroom there. And it's not a contamination issue with the bathroom,

because on the flip side, he'll go in the bathroom here and sit on the toilet

for well over an hour in the dark, just sitting there, sometimes not to even go

to the bathroom.

When I drive in the car now he will kick my arm from the back seat and

constantly takes the shoulder strap off and puts it around his chest complaining

it's " too tight " So I have to keep the rearview mirror pointed at him and

continually have to yell at him every few minutes to put his seatbelt back on.

This is an almost 16 year old boy who 6 months ago was nowhere near this state.

For the most part everything was " normal " except of course his Tourette's/tics.

He's been tested for PANDAS and just had a boat load of blood work done for

everything under the sun and so far nothing stands out as a problem whatsoever.

His psychiatrist feels it's a " psychotic regression, " which I'd have to agree,

however there is still the puzzling fact that he does *not* exhibit these types

of behaviors at school and if you were to sit and chat with him, you'd never

have a clue anything was amiss. He does only go to school 3 days a week, but

still, how is he able to turn this on and off like a switch?!!

I know it could be a lot worse and I'm grateful it's not, but I just don't want

it to get any worse and I pray that 's calls me with a date asap! I'm so at

the end of my rope, barely hanging on!

[Guest guest]

Hi

I don't have any words of wisdom, but just want you to know that you are not

alone -- all of us out here are thinking of you and praying that you will get

that call from . I hope that once he is there (and getting the help he so

desperately needs), you will be able to find some respite and regain your

balance. He will get better, so do not let go of that thread.

Thinking of you,

Lee

Hanging on by a thread!

Hi all,

I am just about at my wit's end with my son and getting him into 's. After

waiting since mid-November, 2 weeks ago I finally get some " probable " dates of

the week of 3/5 or 3/12. Well, here we are, still no definite date. I'm calling

almost daily at this point because things are continuing to go downhill with my

son.

The urinating and defecating is increasing in frequency (outside the bathroom)

and the worst part is he just plain does not care, period. Today he peed all

over the back seat of my car, he sits in the car for quite a while in the garage

whenever we come home from going somewhere. Then I go to the store for an hour,

come home and there's a glass on the kitchen counter half full of pee! Then, I

go back out to my car to grab a bag of groceries from the back seat, I see an

empty Doritos bag my son had eaten on way home, I go to grab it and it's full of

pee!!!!

Now he's not doing this at school, but I think partly because he tries avoiding

the bathroom there. And it's not a contamination issue with the bathroom,

because on the flip side, he'll go in the bathroom here and sit on the toilet

for well over an hour in the dark, just sitting there, sometimes not to even go

to the bathroom.

When I drive in the car now he will kick my arm from the back seat and

constantly takes the shoulder strap off and puts it around his chest complaining

it's " too tight " So I have to keep the rearview mirror pointed at him and

continually have to yell at him every few minutes to put his seatbelt back on.

This is an almost 16 year old boy who 6 months ago was nowhere near this state.

For the most part everything was " normal " except of course his Tourette's/tics.

He's been tested for PANDAS and just had a boat load of blood work done for

everything under the sun and so far nothing stands out as a problem whatsoever.

His psychiatrist feels it's a " psychotic regression, " which I'd have to agree,

however there is still the puzzling fact that he does *not* exhibit these types

of behaviors at school and if you were to sit and chat with him, you'd never

have a clue anything was amiss. He does only go to school 3 days a week, but

still, how is he able to turn this on and off like a switch?!!

I know it could be a lot worse and I'm grateful it's not, but I just don't want

it to get any worse and I pray that 's calls me with a date asap! I'm so at

the end of my rope, barely hanging on!

[Guest guest]

My heart breaks for you. I wish I had some advice, but unfortunately I don't.

However, please know that I will keep your family in my thoughts and prayers.

>

> Hi

> I don't have any words of wisdom, but just want you to know that you are not

alone -- all of us out here are thinking of you and praying that you will get

that call from . I hope that once he is there (and getting the help he so

desperately needs), you will be able to find some respite and regain your

balance. He will get better, so do not let go of that thread.

> Thinking of you,

> Lee

>

>

>

> Hanging on by a thread!

>

>

>

>

>

> Hi all,

>

> I am just about at my wit's end with my son and getting him into 's.

After waiting since mid-November, 2 weeks ago I finally get some " probable "

dates of the week of 3/5 or 3/12. Well, here we are, still no definite date. I'm

calling almost daily at this point because things are continuing to go downhill

with my son.

>

> The urinating and defecating is increasing in frequency (outside the bathroom)

and the worst part is he just plain does not care, period. Today he peed all

over the back seat of my car, he sits in the car for quite a while in the garage

whenever we come home from going somewhere. Then I go to the store for an hour,

come home and there's a glass on the kitchen counter half full of pee! Then, I

go back out to my car to grab a bag of groceries from the back seat, I see an

empty Doritos bag my son had eaten on way home, I go to grab it and it's full of

pee!!!!

>

> Now he's not doing this at school, but I think partly because he tries

avoiding the bathroom there. And it's not a contamination issue with the

bathroom, because on the flip side, he'll go in the bathroom here and sit on the

toilet for well over an hour in the dark, just sitting there, sometimes not to

even go to the bathroom.

>

> When I drive in the car now he will kick my arm from the back seat and

constantly takes the shoulder strap off and puts it around his chest complaining

it's " too tight " So I have to keep the rearview mirror pointed at him and

continually have to yell at him every few minutes to put his seatbelt back on.

>

> This is an almost 16 year old boy who 6 months ago was nowhere near this

state. For the most part everything was " normal " except of course his

Tourette's/tics. He's been tested for PANDAS and just had a boat load of blood

work done for everything under the sun and so far nothing stands out as a

problem whatsoever. His psychiatrist feels it's a " psychotic regression, " which

I'd have to agree, however there is still the puzzling fact that he does *not*

exhibit these types of behaviors at school and if you were to sit and chat with

him, you'd never have a clue anything was amiss. He does only go to school 3

days a week, but still, how is he able to turn this on and off like a switch?!!

>

> I know it could be a lot worse and I'm grateful it's not, but I just don't

want it to get any worse and I pray that 's calls me with a date asap! I'm

so at the end of my rope, barely hanging on!

>

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

My heart breaks for you. I wish I had some advice, but unfortunately I don't.

However, please know that I will keep your family in my thoughts and prayers.

>

> Hi

> I don't have any words of wisdom, but just want you to know that you are not

alone -- all of us out here are thinking of you and praying that you will get

that call from . I hope that once he is there (and getting the help he so

desperately needs), you will be able to find some respite and regain your

balance. He will get better, so do not let go of that thread.

> Thinking of you,

> Lee

>

>

>

> Hanging on by a thread!

>

>

>

>

>

> Hi all,

>

> I am just about at my wit's end with my son and getting him into 's.

After waiting since mid-November, 2 weeks ago I finally get some " probable "

dates of the week of 3/5 or 3/12. Well, here we are, still no definite date. I'm

calling almost daily at this point because things are continuing to go downhill

with my son.

>

> The urinating and defecating is increasing in frequency (outside the bathroom)

and the worst part is he just plain does not care, period. Today he peed all

over the back seat of my car, he sits in the car for quite a while in the garage

whenever we come home from going somewhere. Then I go to the store for an hour,

come home and there's a glass on the kitchen counter half full of pee! Then, I

go back out to my car to grab a bag of groceries from the back seat, I see an

empty Doritos bag my son had eaten on way home, I go to grab it and it's full of

pee!!!!

>

> Now he's not doing this at school, but I think partly because he tries

avoiding the bathroom there. And it's not a contamination issue with the

bathroom, because on the flip side, he'll go in the bathroom here and sit on the

toilet for well over an hour in the dark, just sitting there, sometimes not to

even go to the bathroom.

>

> When I drive in the car now he will kick my arm from the back seat and

constantly takes the shoulder strap off and puts it around his chest complaining

it's " too tight " So I have to keep the rearview mirror pointed at him and

continually have to yell at him every few minutes to put his seatbelt back on.

>

> This is an almost 16 year old boy who 6 months ago was nowhere near this

state. For the most part everything was " normal " except of course his

Tourette's/tics. He's been tested for PANDAS and just had a boat load of blood

work done for everything under the sun and so far nothing stands out as a

problem whatsoever. His psychiatrist feels it's a " psychotic regression, " which

I'd have to agree, however there is still the puzzling fact that he does *not*

exhibit these types of behaviors at school and if you were to sit and chat with

him, you'd never have a clue anything was amiss. He does only go to school 3

days a week, but still, how is he able to turn this on and off like a switch?!!

>

> I know it could be a lot worse and I'm grateful it's not, but I just don't

want it to get any worse and I pray that 's calls me with a date asap! I'm

so at the end of my rope, barely hanging on!

>

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Thanks so much everyone for your words of encouragement and prayers, I truly

appreciate it.

Just got an email from the woman at 's this morning saying in so many words

that it sounds like the discharges she told me about that were happening this

week and next week may not be happening now and she's waiting for an update on

" additional " discharges.

I can not begin to describe how incredibly frustrated I am with the way the work

things at 's as far as the admitting process, it is beyond ridiculous!! I

was told 2 weeks ago that on a 1-10 scale there was a likelihood of an " 8 " that

my son could be admitted this week or next, then I was told last week they are

" putting together an admitting date " for my son, now who the heck knows what is

going on, I am beyond pissed!!

> My heart breaks for you. I wish I had some advice, but unfortunately I don't.

However, please know that I will keep your family in my thoughts and prayers.

>

>

> >

> > Hi

> > I don't have any words of wisdom, but just want you to know that you are not

alone -- all of us out here are thinking of you and praying that you will get

that call from . I hope that once he is there (and getting the help he so

desperately needs), you will be able to find some respite and regain your

balance. He will get better, so do not let go of that thread.

> > Thinking of you,

> > Lee

> >

> >

> >

> > Hanging on by a thread!

> >

> >

> >

> >

> >

> > Hi all,

> >

> > I am just about at my wit's end with my son and getting him into 's.

After waiting since mid-November, 2 weeks ago I finally get some " probable "

dates of the week of 3/5 or 3/12. Well, here we are, still no definite date. I'm

calling almost daily at this point because things are continuing to go downhill

with my son.

> >

> > The urinating and defecating is increasing in frequency (outside the

bathroom) and the worst part is he just plain does not care, period. Today he

peed all over the back seat of my car, he sits in the car for quite a while in

the garage whenever we come home from going somewhere. Then I go to the store

for an hour, come home and there's a glass on the kitchen counter half full of

pee! Then, I go back out to my car to grab a bag of groceries from the back

seat, I see an empty Doritos bag my son had eaten on way home, I go to grab it

and it's full of pee!!!!

> >

> > Now he's not doing this at school, but I think partly because he tries

avoiding the bathroom there. And it's not a contamination issue with the

bathroom, because on the flip side, he'll go in the bathroom here and sit on the

toilet for well over an hour in the dark, just sitting there, sometimes not to

even go to the bathroom.

> >

> > When I drive in the car now he will kick my arm from the back seat and

constantly takes the shoulder strap off and puts it around his chest complaining

it's " too tight " So I have to keep the rearview mirror pointed at him and

continually have to yell at him every few minutes to put his seatbelt back on.

> >

> > This is an almost 16 year old boy who 6 months ago was nowhere near this

state. For the most part everything was " normal " except of course his

Tourette's/tics. He's been tested for PANDAS and just had a boat load of blood

work done for everything under the sun and so far nothing stands out as a

problem whatsoever. His psychiatrist feels it's a " psychotic regression, " which

I'd have to agree, however there is still the puzzling fact that he does *not*

exhibit these types of behaviors at school and if you were to sit and chat with

him, you'd never have a clue anything was amiss. He does only go to school 3

days a week, but still, how is he able to turn this on and off like a switch?!!

> >

> > I know it could be a lot worse and I'm grateful it's not, but I just don't

want it to get any worse and I pray that 's calls me with a date asap! I'm

so at the end of my rope, barely hanging on!

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Thanks so much everyone for your words of encouragement and prayers, I truly

appreciate it.

Just got an email from the woman at 's this morning saying in so many words

that it sounds like the discharges she told me about that were happening this

week and next week may not be happening now and she's waiting for an update on

" additional " discharges.

I can not begin to describe how incredibly frustrated I am with the way the work

things at 's as far as the admitting process, it is beyond ridiculous!! I

was told 2 weeks ago that on a 1-10 scale there was a likelihood of an " 8 " that

my son could be admitted this week or next, then I was told last week they are

" putting together an admitting date " for my son, now who the heck knows what is

going on, I am beyond pissed!!

> My heart breaks for you. I wish I had some advice, but unfortunately I don't.

However, please know that I will keep your family in my thoughts and prayers.

>

>

> >

> > Hi

> > I don't have any words of wisdom, but just want you to know that you are not

alone -- all of us out here are thinking of you and praying that you will get

that call from . I hope that once he is there (and getting the help he so

desperately needs), you will be able to find some respite and regain your

balance. He will get better, so do not let go of that thread.

> > Thinking of you,

> > Lee

> >

> >

> >

> > Hanging on by a thread!

> >

> >

> >

> >

> >

> > Hi all,

> >

> > I am just about at my wit's end with my son and getting him into 's.

After waiting since mid-November, 2 weeks ago I finally get some " probable "

dates of the week of 3/5 or 3/12. Well, here we are, still no definite date. I'm

calling almost daily at this point because things are continuing to go downhill

with my son.

> >

> > The urinating and defecating is increasing in frequency (outside the

bathroom) and the worst part is he just plain does not care, period. Today he

peed all over the back seat of my car, he sits in the car for quite a while in

the garage whenever we come home from going somewhere. Then I go to the store

for an hour, come home and there's a glass on the kitchen counter half full of

pee! Then, I go back out to my car to grab a bag of groceries from the back

seat, I see an empty Doritos bag my son had eaten on way home, I go to grab it

and it's full of pee!!!!

> >

> > Now he's not doing this at school, but I think partly because he tries

avoiding the bathroom there. And it's not a contamination issue with the

bathroom, because on the flip side, he'll go in the bathroom here and sit on the

toilet for well over an hour in the dark, just sitting there, sometimes not to

even go to the bathroom.

> >

> > When I drive in the car now he will kick my arm from the back seat and

constantly takes the shoulder strap off and puts it around his chest complaining

it's " too tight " So I have to keep the rearview mirror pointed at him and

continually have to yell at him every few minutes to put his seatbelt back on.

> >

> > This is an almost 16 year old boy who 6 months ago was nowhere near this

state. For the most part everything was " normal " except of course his

Tourette's/tics. He's been tested for PANDAS and just had a boat load of blood

work done for everything under the sun and so far nothing stands out as a

problem whatsoever. His psychiatrist feels it's a " psychotic regression, " which

I'd have to agree, however there is still the puzzling fact that he does *not*

exhibit these types of behaviors at school and if you were to sit and chat with

him, you'd never have a clue anything was amiss. He does only go to school 3

days a week, but still, how is he able to turn this on and off like a switch?!!

> >

> > I know it could be a lot worse and I'm grateful it's not, but I just don't

want it to get any worse and I pray that 's calls me with a date asap! I'm

so at the end of my rope, barely hanging on!

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

,

I'm so sorry for everything you are going through. I wish I had some words of

advice to help get you and your son through it all.

You said he's had all sorts of blood tests run. Do you have copies of all of the

results? Or are you relying on the doctor to tell you whether anything is out of

the ordinary?

If you don't have copies, I recommend you get copies. That way you know exactly

what was run, when, and you can more easily share the results with any other

doctors that you use down the road. You could also start tracking any trends if

you have any tests repeated. As far as strep tests go, many people say one

measurement is not enough. You want to see whether the titers are changing

(rising or falling).

Also, you may want to educate yourself on how to read the test results. More

than once I've brought things to the attention of doctors that somehow

" overlooked " something. Furthermore, some doctor's interpret results differently

than others. This is especially true in the Lyme world. Doctor's who are not

Lyme Literate will interpret the results based on the CDC's surveillance

criteria (i.e requiring 5 positive bands on IgG or 2 on IgM), whereas a Lyme

Literate doctor may interpret it as positive with just one positive.

Was he tested for Lyme and co-infections in addition to the strep tests?

Kara

>

>

>

> This is an almost 16 year old boy who 6 months ago was nowhere near this

state. For the most part everything was " normal " except of course his

Tourette's/tics. He's been tested for PANDAS and just had a boat load of blood

work done for everything under the sun and so far nothing stands out as a

problem whatsoever. His psychiatrist feels it's a " psychotic regression, " which

I'd have to agree, however there is still the puzzling fact that he does *not*

exhibit these types of behaviors at school and if you were to sit and chat with

him, you'd never have a clue anything was amiss. He does only go to school 3

days a week, but still, how is he able to turn this on and off like a switch?!!

>

>

[Guest guest]

HI Kara,

Thanks so much. He does have chronic Lyme, and his MD is actually a LLMD and had

really bad Lyme himself, so I trust his interpretation of the tests. He said

that his Lyme level is near normal now and he's pretty up on the PANDAS and

other things along those lines. I do plan on taking the results and going for a

2nd opinion, but I was hoping my son would be at 's this week or next, now

it looks like that won't be the case.

He also has herpes virus in his system, so that could be a player in all of this

as well. The problem is trying to get all of the tests, go to all of the

doctors, etc. that could possibly help, takes SO much time and I feel he needs

to be at 's asap to at least stabilize him. I know that may be difficult if

some or all of this is stemming from immune issues, but my gut feeling is that

it's really a combination of a lot of things, including his Tourette's.

> ,

>

> I'm so sorry for everything you are going through. I wish I had some words of

advice to help get you and your son through it all.

>

> You said he's had all sorts of blood tests run. Do you have copies of all of

the results? Or are you relying on the doctor to tell you whether anything is

out of the ordinary?

>

> If you don't have copies, I recommend you get copies. That way you know

exactly what was run, when, and you can more easily share the results with any

other doctors that you use down the road. You could also start tracking any

trends if you have any tests repeated. As far as strep tests go, many people say

one measurement is not enough. You want to see whether the titers are changing

(rising or falling).

>

> Also, you may want to educate yourself on how to read the test results. More

than once I've brought things to the attention of doctors that somehow

" overlooked " something. Furthermore, some doctor's interpret results differently

than others. This is especially true in the Lyme world. Doctor's who are not

Lyme Literate will interpret the results based on the CDC's surveillance

criteria (i.e requiring 5 positive bands on IgG or 2 on IgM), whereas a Lyme

Literate doctor may interpret it as positive with just one positive.

>

> Was he tested for Lyme and co-infections in addition to the strep tests?

>

> Kara

>

>

> >

> >

> >

> > This is an almost 16 year old boy who 6 months ago was nowhere near this

state. For the most part everything was " normal " except of course his

Tourette's/tics. He's been tested for PANDAS and just had a boat load of blood

work done for everything under the sun and so far nothing stands out as a

problem whatsoever. His psychiatrist feels it's a " psychotic regression, " which

I'd have to agree, however there is still the puzzling fact that he does *not*

exhibit these types of behaviors at school and if you were to sit and chat with

him, you'd never have a clue anything was amiss. He does only go to school 3

days a week, but still, how is he able to turn this on and off like a switch?!!

> >

> >

>

>

[Guest guest]

HI Kara,

Thanks so much. He does have chronic Lyme, and his MD is actually a LLMD and had

really bad Lyme himself, so I trust his interpretation of the tests. He said

that his Lyme level is near normal now and he's pretty up on the PANDAS and

other things along those lines. I do plan on taking the results and going for a

2nd opinion, but I was hoping my son would be at 's this week or next, now

it looks like that won't be the case.

He also has herpes virus in his system, so that could be a player in all of this

as well. The problem is trying to get all of the tests, go to all of the

doctors, etc. that could possibly help, takes SO much time and I feel he needs

to be at 's asap to at least stabilize him. I know that may be difficult if

some or all of this is stemming from immune issues, but my gut feeling is that

it's really a combination of a lot of things, including his Tourette's.

> ,

>

> I'm so sorry for everything you are going through. I wish I had some words of

advice to help get you and your son through it all.

>

> You said he's had all sorts of blood tests run. Do you have copies of all of

the results? Or are you relying on the doctor to tell you whether anything is

out of the ordinary?

>

> If you don't have copies, I recommend you get copies. That way you know

exactly what was run, when, and you can more easily share the results with any

other doctors that you use down the road. You could also start tracking any

trends if you have any tests repeated. As far as strep tests go, many people say

one measurement is not enough. You want to see whether the titers are changing

(rising or falling).

>

> Also, you may want to educate yourself on how to read the test results. More

than once I've brought things to the attention of doctors that somehow

" overlooked " something. Furthermore, some doctor's interpret results differently

than others. This is especially true in the Lyme world. Doctor's who are not

Lyme Literate will interpret the results based on the CDC's surveillance

criteria (i.e requiring 5 positive bands on IgG or 2 on IgM), whereas a Lyme

Literate doctor may interpret it as positive with just one positive.

>

> Was he tested for Lyme and co-infections in addition to the strep tests?

>

> Kara

>

>

> >

> >

> >

> > This is an almost 16 year old boy who 6 months ago was nowhere near this

state. For the most part everything was " normal " except of course his

Tourette's/tics. He's been tested for PANDAS and just had a boat load of blood

work done for everything under the sun and so far nothing stands out as a

problem whatsoever. His psychiatrist feels it's a " psychotic regression, " which

I'd have to agree, however there is still the puzzling fact that he does *not*

exhibit these types of behaviors at school and if you were to sit and chat with

him, you'd never have a clue anything was amiss. He does only go to school 3

days a week, but still, how is he able to turn this on and off like a switch?!!

> >

> >

>

>

[Guest guest]

, I hate has had to put you off again!! Apparently those patients

weren't quite ready to go home, I wonder how that works....

Sigh! Wondering if in the meantime, just testing some supplements out (if your

son will take them) is at least something to try. Like Lysine/B6 for herpes.

Or try inositol powder (we mixed it in a cup of Kool-Aid, others have used other

noncarbonated drinks). Though anything would take TIME to see if made a

difference. Ugh! Still wonder about antibiotics, tho you've got strep and Lyme

going on....

Will he comment at all about what he is going through, doing? wouldn't

talk about it. I mean, after the first time he told me why he was doing things,

it's like he had answered me, " don't ask me again " etc.

In his history, was there any medication that brought a lot of relief?

>

> HI Kara,

>

> Thanks so much. He does have chronic Lyme, and his MD is actually a LLMD and

had really bad Lyme himself, so I trust his interpretation of the tests. He said

that his Lyme level is near normal now and he's pretty up on the PANDAS and

other things along those lines. I do plan on taking the results and going for a

2nd opinion, but I was hoping my son would be at 's this week or next, now

it looks like that won't be the case.

>

>

[Guest guest]

Thanks, yes it is beyond frustrating with the the 's situation.

While I completely understand the predicament on their end of not knowing exact

discharge dates, I think they need a better system of providing estimations on

admitting dates to parents with kids on the wait list so they can investigate

and secure other treatment options if necessary.

He already takes an array of supplements, including Lysine. I am going to try

Inositol though in the meantime. Like you said, that is my main problem with

everything right now....TIME. Everything, whether it's medication, therapy,

supplements, diagnostics, etc. takes time and trial and error. That's why I feel

it's so critical he gets to 's asap because at least he'll be in a

situation where a team of medical and mental health professionals can observe

and assess him on a daily basis and start putting the pieces of the puzzle

together while I continue researching treatment options, doctors, testing, etc.

on my end.

You asked about any meds that brought a lot of relief. He actually hasn't been

on many different meds because 6 months ago, we weren't anywhere near the point

we are now. He had also been on antibiotics for the Lyme for about 4-5 months,

but other than that he was only taking supplements until about 3 months ago when

he started on meds.

I''m going to talk to his doc again about antibiotics now that God only knows

when he'll get into 's. That's the main reason I was holding off with

reintroducing antibiotics because the doc and I concurred it wouldn't make much

sense to start that now with him going to 's in the next few weeks (or so

we thought!!!).

> , I hate has had to put you off again!! Apparently those patients

weren't quite ready to go home, I wonder how that works....

>

> Sigh! Wondering if in the meantime, just testing some supplements out (if your

son will take them) is at least something to try. Like Lysine/B6 for herpes. Or

try inositol powder (we mixed it in a cup of Kool-Aid, others have used other

noncarbonated drinks). Though anything would take TIME to see if made a

difference. Ugh! Still wonder about antibiotics, tho you've got strep and Lyme

going on....

>

> Will he comment at all about what he is going through, doing? wouldn't

talk about it. I mean, after the first time he told me why he was doing things,

it's like he had answered me, " don't ask me again " etc.

>

> In his history, was there any medication that brought a lot of relief?

>

>

>

>

> >

> > HI Kara,

> >

> > Thanks so much. He does have chronic Lyme, and his MD is actually a LLMD and

had really bad Lyme himself, so I trust his interpretation of the tests. He said

that his Lyme level is near normal now and he's pretty up on the PANDAS and

other things along those lines. I do plan on taking the results and going for a

2nd opinion, but I was hoping my son would be at 's this week or next, now

it looks like that won't be the case.

> >

> >

>

>

[Guest guest]

Thanks, yes it is beyond frustrating with the the 's situation.

While I completely understand the predicament on their end of not knowing exact

discharge dates, I think they need a better system of providing estimations on

admitting dates to parents with kids on the wait list so they can investigate

and secure other treatment options if necessary.

He already takes an array of supplements, including Lysine. I am going to try

Inositol though in the meantime. Like you said, that is my main problem with

everything right now....TIME. Everything, whether it's medication, therapy,

supplements, diagnostics, etc. takes time and trial and error. That's why I feel

it's so critical he gets to 's asap because at least he'll be in a

situation where a team of medical and mental health professionals can observe

and assess him on a daily basis and start putting the pieces of the puzzle

together while I continue researching treatment options, doctors, testing, etc.

on my end.

You asked about any meds that brought a lot of relief. He actually hasn't been

on many different meds because 6 months ago, we weren't anywhere near the point

we are now. He had also been on antibiotics for the Lyme for about 4-5 months,

but other than that he was only taking supplements until about 3 months ago when

he started on meds.

I''m going to talk to his doc again about antibiotics now that God only knows

when he'll get into 's. That's the main reason I was holding off with

reintroducing antibiotics because the doc and I concurred it wouldn't make much

sense to start that now with him going to 's in the next few weeks (or so

we thought!!!).

> , I hate has had to put you off again!! Apparently those patients

weren't quite ready to go home, I wonder how that works....

>

> Sigh! Wondering if in the meantime, just testing some supplements out (if your

son will take them) is at least something to try. Like Lysine/B6 for herpes. Or

try inositol powder (we mixed it in a cup of Kool-Aid, others have used other

noncarbonated drinks). Though anything would take TIME to see if made a

difference. Ugh! Still wonder about antibiotics, tho you've got strep and Lyme

going on....

>

> Will he comment at all about what he is going through, doing? wouldn't

talk about it. I mean, after the first time he told me why he was doing things,

it's like he had answered me, " don't ask me again " etc.

>

> In his history, was there any medication that brought a lot of relief?

>

>

>

>

> >

> > HI Kara,

> >

> > Thanks so much. He does have chronic Lyme, and his MD is actually a LLMD and

had really bad Lyme himself, so I trust his interpretation of the tests. He said

that his Lyme level is near normal now and he's pretty up on the PANDAS and

other things along those lines. I do plan on taking the results and going for a

2nd opinion, but I was hoping my son would be at 's this week or next, now

it looks like that won't be the case.

> >

> >

>

>

[Guest guest]

Hi :

I'm just thinking how OCD when it's bad can cause some behaviors that seem

psychotic. When anxiety and fear are high, the mind goes into desperation mode -

that's the way I think of it. My son at one point started crying (he was 13) and

asking me to get Sherlock Holmes (he was reading the book at the time) , that

Sherlock Holmes could save him, Sherlock was his only friend, etc. Later, I

asked him if he knew Sherlock wasn't real and he said yes, that he just felt

really scared and alone at the time. He also had bathroom problems (he has the

fear of contamination type OCD). However, even this type of OCD makes no sense,

as my son will admit. He would soil his pants rather than go to the bathroom. He

would never tell me why, but his therapist felt it was because the bathroom was

scary for him, a place where OCD told him to do numerous rituals so he would

avoid it and then the inevitable would happen. He would not change his soiled

underwear for hours sometime, playing video games to distract himself. He is

sooo much better now. During those dark days, this group was my life line

because I had no one else I could talk to about his behavior. It was just too

weird for anyone to relate to. So I'm glad you're here. Most of us have been in

your shoes, or close to it. My son was hospitalized for 2 weeks and they gave

him Abilify right away. They also gave him Klonopin (Klonozopam). Both of these

calmed him enough to take the edge off. Maybe you could your doctor to prescribe

these. The Klonopin can only be taken for a few weeks as it can become addictive

and I was able to wean him off the Abilify after a few months. These were just

to stabilize his anxiety until the Zoloft kicked in. He is like your son, even

at his worst. He could be so himself, which is happy and carefree, and something

would trigger OCD, and he would be depressed and irritable. Now he is mostly

himself, but still working on some triggers with a therapist, even after 3

years. Yesterday I took him to a regular doctor which is one of his big OCD

fears. I praised him, even though to the doctor he seemed sullen and

uncooperative, I knew how he was struggling just to be there. He refused to give

a urine sample (too OCD hard!), did let them do an allergy test on his back

(tested high on molds, and let them take his blood. The doctor wants to try some

enzyme supplements, but my son will have to get a urine sample for this. Anyone

know of an easy way for him to get one, please let me know. He's also going to

take some under the tongue allergy drops to try to get the mold under control.

She thinks that just getting his allergies better could help his immune system

calm down and thus his OCD. His psychiatrist is convinced that all OCD in

children is caused by an over active immune system. Which explains why PANDAS

(which he's been diagnosed with - caused by a strep pneumonia when he was 2)

causes OCD. Just an interesting side point. One more thing, we had to call a

mental health policeman to get my son to go the hospital as he refused to go.

The way the policeman handled it was to gently tell him he needed to go and get

checked out by a doctor, get some medicine to help him. He wanted to leave once

he got checked in, broke my heart to leave him, but with the kind staff and

medication, he gradually began to accept it and mingle with the other kids

there. It was the best I could I done for him.

Take care, and also praying calls soon.

Anita

>

> Thanks, yes it is beyond frustrating with the the 's situation.

While I completely understand the predicament on their end of not knowing exact

discharge dates, I think they need a better system of providing estimations on

admitting dates to parents with kids on the wait list so they can investigate

and secure other treatment options if necessary.

>

> He already takes an array of supplements, including Lysine. I am going to try

Inositol though in the meantime. Like you said, that is my main problem with

everything right now....TIME. Everything, whether it's medication, therapy,

supplements, diagnostics, etc. takes time and trial and error. That's why I feel

it's so critical he gets to 's asap because at least he'll be in a

situation where a team of medical and mental health professionals can observe

and assess him on a daily basis and start putting the pieces of the puzzle

together while I continue researching treatment options, doctors, testing, etc.

on my end.

>

> You asked about any meds that brought a lot of relief. He actually hasn't been

on many different meds because 6 months ago, we weren't anywhere near the point

we are now. He had also been on antibiotics for the Lyme for about 4-5 months,

but other than that he was only taking supplements until about 3 months ago when

he started on meds.

>

> I''m going to talk to his doc again about antibiotics now that God only knows

when he'll get into 's. That's the main reason I was holding off with

reintroducing antibiotics because the doc and I concurred it wouldn't make much

sense to start that now with him going to 's in the next few weeks (or so

we thought!!!).

>

>

>

>

>

>

[Guest guest]

I have OCD with the same symptoms as your son so I totally get him. When mine

was bad, I would old in my urine for long times because I was too afraid to go

in public bathrooms, then I would be mortified that I sometimes wet my clothes

because I couldn't hold it in anymore. To hear how crazy OCD is: I was a

highly esteemed learning specialist at a top school at the time and no one knew

about my OCD. I was cheerful and good at what I did, and yet, I remember

running, wet with urine, at lunch time to a local store to buy new clothes to

change into and return to work before I missed any of my classes. OCD causes

bizarre thinking, but it doesn't mean you are psychotic because the thinking is

so isolated to just your particular issues. For me and my daughter, who also

has OCD, Anafranil changes that thinking.

By the way, I TOTALLY disagree with your son's dr. that ALL OCD in children is

caused by an overactive immune system. I have had OCD all my life, my

grandmother had severe generalized anxiety, and now both my kids have had OCD or

generalized anxiety from as early as I can remember. Clearly, genetics plays a

HUGE role for many of us.

Re: Hanging on by a thread!

Hi :

I'm just thinking how OCD when it's bad can cause some behaviors that seem

psychotic. When anxiety and fear are high, the mind goes into desperation mode -

that's the way I think of it. My son at one point started crying (he was 13) and

asking me to get Sherlock Holmes (he was reading the book at the time) , that

Sherlock Holmes could save him, Sherlock was his only friend, etc. Later, I

asked him if he knew Sherlock wasn't real and he said yes, that he just felt

really scared and alone at the time. He also had bathroom problems (he has the

fear of contamination type OCD). However, even this type of OCD makes no sense,

as my son will admit. He would soil his pants rather than go to the bathroom. He

would never tell me why, but his therapist felt it was because the bathroom was

scary for him, a place where OCD told him to do numerous rituals so he would

avoid it and then the inevitable would happen. He would not change his soiled

underwear for hours sometime, playing video gam es to distract himself. He is

sooo much better now. During those dark days, this group was my life line

because I had no one else I could talk to about his behavior. It was just too

weird for anyone to relate to. So I'm glad you're here. Most of us have been in

your shoes, or close to it. My son was hospitalized for 2 weeks and they gave

him Abilify right away. They also gave him Klonopin (Klonozopam). Both of these

calmed him enough to take the edge off. Maybe you could your doctor to prescribe

these. The Klonopin can only be taken for a few weeks as it can become addictive

and I was able to wean him off the Abilify after a few months. These were just

to stabilize his anxiety until the Zoloft kicked in. He is like your son, even

at his worst. He could be so himself, which is happy and carefree, and something

would trigger OCD, and he would be depressed and irritable. Now he is mostly

himself, but still working on some triggers with a therapist, even after 3

years. Yesterday I took him to a regular doctor which is one of his big OCD

fears. I praised him, even though to the doctor he seemed sullen and

uncooperative, I knew how he was struggling just to be there. He refused to give

a urine sample (too OCD hard!), did let them do an allergy test on his back

(tested high on molds, and let them take his blood. The doctor wants to try some

enzyme supplements, but my son will have to get a urine sample for this. Anyone

know of an easy way for him to get one, please let me know. He's also going to

take some under the tongue allergy drops to try to get the mold under control.

She thinks that just getting his allergies better could help his immune system

calm down and thus his OCD. His psychiatrist is convinced that all OCD in

children is caused by an over active immune system. Which explains why PANDAS

(which he's been diagnosed with - caused by a strep pneumonia when he was 2)

causes OCD. Just an interesting side point. One more thing, we had to call a

mental health policeman to get my son to go the hospital as he refused to go.

The way the policeman handled it was to gently tell him he needed to go and get

checked out by a doctor, get some medicine to help him. He wanted to leave once

he got checked in, broke my heart to leave him, but with the kind staff and

medication, he gradually began to accept it and mingle with the other kids

there. It was the best I could I done for him.

Take care, and also praying calls soon.

Anita

>

> Thanks, yes it is beyond frustrating with the the 's situation.

While I completely understand the predicament on their end of not knowing exact

discharge dates, I think they need a better system of providing estimations on

admitting dates to parents with kids on the wait list so they can investigate

and secure other treatment options if necessary.

>

> He already takes an array of supplements, including Lysine. I am going to try

Inositol though in the meantime. Like you said, that is my main problem with

everything right now....TIME. Everything, whether it's medication, therapy,

supplements, diagnostics, etc. takes time and trial and error. That's why I feel

it's so critical he gets to 's asap because at least he'll be in a

situation where a team of medical and mental health professionals can observe

and assess him on a daily basis and start putting the pieces of the puzzle

together while I continue researching treatment options, doctors, testing, etc.

on my end.

>

> You asked about any meds that brought a lot of relief. He actually hasn't been

on many different meds because 6 months ago, we weren't anywhere near the point

we are now. He had also been on antibiotics for the Lyme for about 4-5 months,

but other than that he was only taking supplements until about 3 months ago when

he started on meds.

>

> I''m going to talk to his doc again about antibiotics now that God only knows

when he'll get into 's. That's the main reason I was holding off with

reintroducing antibiotics because the doc and I concurred it wouldn't make much

sense to start that now with him going to 's in the next few weeks (or so

we thought!!!).

>

>

>

>

>

>