Brand New Here there's so much going on I hardly know what to say...

[Guest guest]

Hi, I thought I'd introduce myself and give a little bit of information about

why I was looking for a group like this.

My name is Bird and I've got a son who is 19. At seven years old he developed a

severe strep throat infection. Antibiotics were not very successful in clearing

up the infection and it came right back. He battled with the strep infection for

a month and when it was all done he had OCD. I'm not kidding. It came on so fast

and was such a huge change that it was stunning and heartbreaking.

My son has germ phobias, if that's the right way to put it. I'm not sure. He

washes his hands several times a day and for a few minutes or so each time. He,

at one point after an extremely severe viral infection (the Norwalk virus) was

not allowing anyone to touch him. He wore latex gloves or mitten everywhere, and

a mask, would hide in his closet when people came over in case they were sick.

He would have trouble getting out of bed because he felt the floor was

contaminated. He also carried a bucket around with him in case he threw up. It

terrified him. It was the most violent flu I'd ever seen. This lasted almost a

year and six months.

Now he is having trouble with feeling that food may be poisoned because it

wasn't cooked properly and such. He's also afraid of taking medication because

it may not have been made properly and poison him. His doctor says this is a

more rare type of OCD. It's awful. I actually test things for him so he isn't so

afraid that he won't eat. He's already super skinny from all the anxiety and

such.

He also does counting and toe flicking and counting the flicking; he has to turn

off the faucets just right or he may go blind according to his OCD. He knows all

of this is nonsense. He tells me that all the time but he can't make it stop.

It's so horrible to watch him suffer like this. I want to make it better and I

can't. It effects him nearly all the time... some anxiety about something that

he's thinking. He also gets sudden bad images in his mind, or thoughts, rather,

and they're weird. Like he will get afraid someone has been horribly hurt or

something like that. I have that one. I understand that one well. I can shake it

off now fairly well, he can't.

He battles depression, anxiety and panic attacks. He's been on antidepressants

since he was seven years old to help control the OCD, and sometimes it's done

great. Other times, well, it flares up and it takes several months to a year or

so to get it back into a more manageable state. Right now he's on Luvox and it's

not doing the trick.

We have a psychiatrist who isn't all that trained in OCD and we're having

trouble finding one. A psychologist has been recommended to us. He does

Neurofeedback- EEG monitoring and also uses electrical impulses sent back into

the brain to " cancel out " the impulses for OCD. I have never heard of it before

but my son was a bit afraid to try it and we've not decided if it's really valid

or not to try it. It's extremely expensive and not covered by insurance. It

could take a very long time before he improves, if he improves. WE're looking

into exposure therapy but have yet to find someone qualified to do the therapy.

It has been a very, very, very long and at times excruciating journey. Nobody

understands the hell of it unless they go through it themselves.

He has two therapists. One wants him off the medication and on supplements and

dietary changes as well as seeing a Functional Medicine doctor who may be

suspicious that he has strep infections that never went a way from the time he

was seven years old and would like to treat him with long term antibiotics and

antivirals.

The other therapist things he should be using essential oils, Reiki, meditation,

hands on healing and other such things to help him with this as well as his

medication and seeing a CBT.

We've been fighting through this, surviving through this for such a long time

and we're both so tired.

I have OCD as well, and I had several horrible strep infections and flus when I

was young. It developed right around the middle of a mass of these infections.

My sister has it as well, much worse than I do, and she was plagued with throat

infections as well. Whether these are all linked or coincidental I have no idea.

I'm looking for help, advice, anything. Anything that may help us figure things

out. So many therapies recommended to us now are not covered by insurance and

are super expensive and far away so we'd have to do a great deal of driving. One

suggestion for this essential oils hands on healing stuff is like $250 per

session and over an hour and a half away from us. I'm not really believing that

would work, though. Maybe help him relax some, but not cure or successfully

treat the OCD.

What treatments have you all tried and what has worked for you and/or your

children with OCD?

Thank you so much for letting me join this group. I appreciate it more than I

could ever say.

Thank you, thank you, thank you,

Bird

[Guest guest]

Oh yes, I'm not sure if this matters but my son and I both have AS.

>

> Hi, I thought I'd introduce myself and give a little bit of information about

why I was looking for a group like this.

>

> My name is Bird and I've got a son who is 19. At seven years old he developed

a severe strep throat infection. Antibiotics were not very successful in

clearing up the infection and it came right back. He battled with the strep

infection for a month and when it was all done he had OCD. I'm not kidding. It

came on so fast and was such a huge change that it was stunning and

heartbreaking.

>

> My son has germ phobias, if that's the right way to put it. I'm not sure. He

washes his hands several times a day and for a few minutes or so each time. He,

at one point after an extremely severe viral infection (the Norwalk virus) was

not allowing anyone to touch him. He wore latex gloves or mitten everywhere, and

a mask, would hide in his closet when people came over in case they were sick.

He would have trouble getting out of bed because he felt the floor was

contaminated. He also carried a bucket around with him in case he threw up. It

terrified him. It was the most violent flu I'd ever seen. This lasted almost a

year and six months.

>

> Now he is having trouble with feeling that food may be poisoned because it

wasn't cooked properly and such. He's also afraid of taking medication because

it may not have been made properly and poison him. His doctor says this is a

more rare type of OCD. It's awful. I actually test things for him so he isn't so

afraid that he won't eat. He's already super skinny from all the anxiety and

such.

>

> He also does counting and toe flicking and counting the flicking; he has to

turn off the faucets just right or he may go blind according to his OCD. He

knows all of this is nonsense. He tells me that all the time but he can't make

it stop. It's so horrible to watch him suffer like this. I want to make it

better and I can't. It effects him nearly all the time... some anxiety about

something that he's thinking. He also gets sudden bad images in his mind, or

thoughts, rather, and they're weird. Like he will get afraid someone has been

horribly hurt or something like that. I have that one. I understand that one

well. I can shake it off now fairly well, he can't.

>

> He battles depression, anxiety and panic attacks. He's been on antidepressants

since he was seven years old to help control the OCD, and sometimes it's done

great. Other times, well, it flares up and it takes several months to a year or

so to get it back into a more manageable state. Right now he's on Luvox and it's

not doing the trick.

>

> We have a psychiatrist who isn't all that trained in OCD and we're having

trouble finding one. A psychologist has been recommended to us. He does

Neurofeedback- EEG monitoring and also uses electrical impulses sent back into

the brain to " cancel out " the impulses for OCD. I have never heard of it before

but my son was a bit afraid to try it and we've not decided if it's really valid

or not to try it. It's extremely expensive and not covered by insurance. It

could take a very long time before he improves, if he improves. WE're looking

into exposure therapy but have yet to find someone qualified to do the therapy.

>

> It has been a very, very, very long and at times excruciating journey. Nobody

understands the hell of it unless they go through it themselves.

>

> He has two therapists. One wants him off the medication and on supplements and

dietary changes as well as seeing a Functional Medicine doctor who may be

suspicious that he has strep infections that never went a way from the time he

was seven years old and would like to treat him with long term antibiotics and

antivirals.

>

> The other therapist things he should be using essential oils, Reiki,

meditation, hands on healing and other such things to help him with this as well

as his medication and seeing a CBT.

>

> We've been fighting through this, surviving through this for such a long time

and we're both so tired.

>

> I have OCD as well, and I had several horrible strep infections and flus when

I was young. It developed right around the middle of a mass of these infections.

My sister has it as well, much worse than I do, and she was plagued with throat

infections as well. Whether these are all linked or coincidental I have no idea.

>

> I'm looking for help, advice, anything. Anything that may help us figure

things out. So many therapies recommended to us now are not covered by insurance

and are super expensive and far away so we'd have to do a great deal of driving.

One suggestion for this essential oils hands on healing stuff is like $250 per

session and over an hour and a half away from us. I'm not really believing that

would work, though. Maybe help him relax some, but not cure or successfully

treat the OCD.

>

> What treatments have you all tried and what has worked for you and/or your

children with OCD?

>

> Thank you so much for letting me join this group. I appreciate it more than I

could ever say.

>

> Thank you, thank you, thank you,

> Bird

>

[Guest guest]

Oh yes, I'm not sure if this matters but my son and I both have AS.

>

> Hi, I thought I'd introduce myself and give a little bit of information about

why I was looking for a group like this.

>

> My name is Bird and I've got a son who is 19. At seven years old he developed

a severe strep throat infection. Antibiotics were not very successful in

clearing up the infection and it came right back. He battled with the strep

infection for a month and when it was all done he had OCD. I'm not kidding. It

came on so fast and was such a huge change that it was stunning and

heartbreaking.

>

> My son has germ phobias, if that's the right way to put it. I'm not sure. He

washes his hands several times a day and for a few minutes or so each time. He,

at one point after an extremely severe viral infection (the Norwalk virus) was

not allowing anyone to touch him. He wore latex gloves or mitten everywhere, and

a mask, would hide in his closet when people came over in case they were sick.

He would have trouble getting out of bed because he felt the floor was

contaminated. He also carried a bucket around with him in case he threw up. It

terrified him. It was the most violent flu I'd ever seen. This lasted almost a

year and six months.

>

> Now he is having trouble with feeling that food may be poisoned because it

wasn't cooked properly and such. He's also afraid of taking medication because

it may not have been made properly and poison him. His doctor says this is a

more rare type of OCD. It's awful. I actually test things for him so he isn't so

afraid that he won't eat. He's already super skinny from all the anxiety and

such.

>

> He also does counting and toe flicking and counting the flicking; he has to

turn off the faucets just right or he may go blind according to his OCD. He

knows all of this is nonsense. He tells me that all the time but he can't make

it stop. It's so horrible to watch him suffer like this. I want to make it

better and I can't. It effects him nearly all the time... some anxiety about

something that he's thinking. He also gets sudden bad images in his mind, or

thoughts, rather, and they're weird. Like he will get afraid someone has been

horribly hurt or something like that. I have that one. I understand that one

well. I can shake it off now fairly well, he can't.

>

> He battles depression, anxiety and panic attacks. He's been on antidepressants

since he was seven years old to help control the OCD, and sometimes it's done

great. Other times, well, it flares up and it takes several months to a year or

so to get it back into a more manageable state. Right now he's on Luvox and it's

not doing the trick.

>

> We have a psychiatrist who isn't all that trained in OCD and we're having

trouble finding one. A psychologist has been recommended to us. He does

Neurofeedback- EEG monitoring and also uses electrical impulses sent back into

the brain to " cancel out " the impulses for OCD. I have never heard of it before

but my son was a bit afraid to try it and we've not decided if it's really valid

or not to try it. It's extremely expensive and not covered by insurance. It

could take a very long time before he improves, if he improves. WE're looking

into exposure therapy but have yet to find someone qualified to do the therapy.

>

> It has been a very, very, very long and at times excruciating journey. Nobody

understands the hell of it unless they go through it themselves.

>

> He has two therapists. One wants him off the medication and on supplements and

dietary changes as well as seeing a Functional Medicine doctor who may be

suspicious that he has strep infections that never went a way from the time he

was seven years old and would like to treat him with long term antibiotics and

antivirals.

>

> The other therapist things he should be using essential oils, Reiki,

meditation, hands on healing and other such things to help him with this as well

as his medication and seeing a CBT.

>

> We've been fighting through this, surviving through this for such a long time

and we're both so tired.

>

> I have OCD as well, and I had several horrible strep infections and flus when

I was young. It developed right around the middle of a mass of these infections.

My sister has it as well, much worse than I do, and she was plagued with throat

infections as well. Whether these are all linked or coincidental I have no idea.

>

> I'm looking for help, advice, anything. Anything that may help us figure

things out. So many therapies recommended to us now are not covered by insurance

and are super expensive and far away so we'd have to do a great deal of driving.

One suggestion for this essential oils hands on healing stuff is like $250 per

session and over an hour and a half away from us. I'm not really believing that

would work, though. Maybe help him relax some, but not cure or successfully

treat the OCD.

>

> What treatments have you all tried and what has worked for you and/or your

children with OCD?

>

> Thank you so much for letting me join this group. I appreciate it more than I

could ever say.

>

> Thank you, thank you, thank you,

> Bird

>

[Guest guest]

I assume you've looked into PANDAS? As I understand that can be treated.

-JuLeah

________________________________

To:

Sent: Sunday, February 26, 2012 12:17 PM

Subject: Re: Brand New Here there's so much going on I hardly

know what to say...

 

Oh yes, I'm not sure if this matters but my son and I both have AS.

>

> Hi, I thought I'd introduce myself and give a little bit of information about

why I was looking for a group like this.

>

> My name is Bird and I've got a son who is 19. At seven years old he developed

a severe strep throat infection. Antibiotics were not very successful in

clearing up the infection and it came right back. He battled with the strep

infection for a month and when it was all done he had OCD. I'm not kidding. It

came on so fast and was such a huge change that it was stunning and

heartbreaking.

>

> My son has germ phobias, if that's the right way to put it. I'm not sure. He

washes his hands several times a day and for a few minutes or so each time. He,

at one point after an extremely severe viral infection (the Norwalk virus) was

not allowing anyone to touch him. He wore latex gloves or mitten everywhere, and

a mask, would hide in his closet when people came over in case they were sick.

He would have trouble getting out of bed because he felt the floor was

contaminated. He also carried a bucket around with him in case he threw up. It

terrified him. It was the most violent flu I'd ever seen. This lasted almost a

year and six months.

>

> Now he is having trouble with feeling that food may be poisoned because it

wasn't cooked properly and such. He's also afraid of taking medication because

it may not have been made properly and poison him. His doctor says this is a

more rare type of OCD. It's awful. I actually test things for him so he isn't so

afraid that he won't eat. He's already super skinny from all the anxiety and

such.

>

> He also does counting and toe flicking and counting the flicking; he has to

turn off the faucets just right or he may go blind according to his OCD. He

knows all of this is nonsense. He tells me that all the time but he can't make

it stop. It's so horrible to watch him suffer like this. I want to make it

better and I can't. It effects him nearly all the time... some anxiety about

something that he's thinking. He also gets sudden bad images in his mind, or

thoughts, rather, and they're weird. Like he will get afraid someone has been

horribly hurt or something like that. I have that one. I understand that one

well. I can shake it off now fairly well, he can't.

>

> He battles depression, anxiety and panic attacks. He's been on antidepressants

since he was seven years old to help control the OCD, and sometimes it's done

great. Other times, well, it flares up and it takes several months to a year or

so to get it back into a more manageable state. Right now he's on Luvox and it's

not doing the trick.

>

> We have a psychiatrist who isn't all that trained in OCD and we're having

trouble finding one. A psychologist has been recommended to us. He does

Neurofeedback- EEG monitoring and also uses electrical impulses sent back into

the brain to " cancel out " the impulses for OCD. I have never heard of it before

but my son was a bit afraid to try it and we've not decided if it's really valid

or not to try it. It's extremely expensive and not covered by insurance. It

could take a very long time before he improves, if he improves. WE're looking

into exposure therapy but have yet to find someone qualified to do the therapy.

>

> It has been a very, very, very long and at times excruciating journey. Nobody

understands the hell of it unless they go through it themselves.

>

> He has two therapists. One wants him off the medication and on supplements and

dietary changes as well as seeing a Functional Medicine doctor who may be

suspicious that he has strep infections that never went a way from the time he

was seven years old and would like to treat him with long term antibiotics and

antivirals.

>

> The other therapist things he should be using essential oils, Reiki,

meditation, hands on healing and other such things to help him with this as well

as his medication and seeing a CBT.

>

> We've been fighting through this, surviving through this for such a long time

and we're both so tired.

>

> I have OCD as well, and I had several horrible strep infections and flus when

I was young. It developed right around the middle of a mass of these infections.

My sister has it as well, much worse than I do, and she was plagued with throat

infections as well. Whether these are all linked or coincidental I have no idea.

>

> I'm looking for help, advice, anything. Anything that may help us figure

things out. So many therapies recommended to us now are not covered by insurance

and are super expensive and far away so we'd have to do a great deal of driving.

One suggestion for this essential oils hands on healing stuff is like $250 per

session and over an hour and a half away from us. I'm not really believing that

would work, though. Maybe help him relax some, but not cure or successfully

treat the OCD.

>

> What treatments have you all tried and what has worked for you and/or your

children with OCD?

>

> Thank you so much for letting me join this group. I appreciate it more than I

could ever say.

>

> Thank you, thank you, thank you,

> Bird

>

[Guest guest]

Hi Bird,

I am somewhat of a newbie here myself, but I wanted to say welcome. I wish I

could offer some helpful answers or advice, but my only thought at the moment is

the PANDAS/PANS angle, as it sounds like your son (and you) could both be helped

by getting a proper diagnosis and treatment for PANDAS. You need to make sure

you see a doctor who has expertise diagnosing and treating PANDAS. I know, not

easy to find, but you may find something on the IOCDF website if you haven't

been there already: http://www.ocfoundation.org/

> Hi, I thought I'd introduce myself and give a little bit of information about

why I was looking for a group like this.

>

> My name is Bird and I've got a son who is 19. At seven years old he developed

a severe strep throat infection. Antibiotics were not very successful in

clearing up the infection and it came right back. He battled with the strep

infection for a month and when it was all done he had OCD. I'm not kidding. It

came on so fast and was such a huge change that it was stunning and

heartbreaking.

>

> My son has germ phobias, if that's the right way to put it. I'm not sure. He

washes his hands several times a day and for a few minutes or so each time. He,

at one point after an extremely severe viral infection (the Norwalk virus) was

not allowing anyone to touch him. He wore latex gloves or mitten everywhere, and

a mask, would hide in his closet when people came over in case they were sick.

He would have trouble getting out of bed because he felt the floor was

contaminated. He also carried a bucket around with him in case he threw up. It

terrified him. It was the most violent flu I'd ever seen. This lasted almost a

year and six months.

>

> Now he is having trouble with feeling that food may be poisoned because it

wasn't cooked properly and such. He's also afraid of taking medication because

it may not have been made properly and poison him. His doctor says this is a

more rare type of OCD. It's awful. I actually test things for him so he isn't so

afraid that he won't eat. He's already super skinny from all the anxiety and

such.

>

> He also does counting and toe flicking and counting the flicking; he has to

turn off the faucets just right or he may go blind according to his OCD. He

knows all of this is nonsense. He tells me that all the time but he can't make

it stop. It's so horrible to watch him suffer like this. I want to make it

better and I can't. It effects him nearly all the time... some anxiety about

something that he's thinking. He also gets sudden bad images in his mind, or

thoughts, rather, and they're weird. Like he will get afraid someone has been

horribly hurt or something like that. I have that one. I understand that one

well. I can shake it off now fairly well, he can't.

>

> He battles depression, anxiety and panic attacks. He's been on antidepressants

since he was seven years old to help control the OCD, and sometimes it's done

great. Other times, well, it flares up and it takes several months to a year or

so to get it back into a more manageable state. Right now he's on Luvox and it's

not doing the trick.

>

> We have a psychiatrist who isn't all that trained in OCD and we're having

trouble finding one. A psychologist has been recommended to us. He does

Neurofeedback- EEG monitoring and also uses electrical impulses sent back into

the brain to " cancel out " the impulses for OCD. I have never heard of it before

but my son was a bit afraid to try it and we've not decided if it's really valid

or not to try it. It's extremely expensive and not covered by insurance. It

could take a very long time before he improves, if he improves. WE're looking

into exposure therapy but have yet to find someone qualified to do the therapy.

>

> It has been a very, very, very long and at times excruciating journey. Nobody

understands the hell of it unless they go through it themselves.

>

> He has two therapists. One wants him off the medication and on supplements and

dietary changes as well as seeing a Functional Medicine doctor who may be

suspicious that he has strep infections that never went a way from the time he

was seven years old and would like to treat him with long term antibiotics and

antivirals.

>

> The other therapist things he should be using essential oils, Reiki,

meditation, hands on healing and other such things to help him with this as well

as his medication and seeing a CBT.

>

> We've been fighting through this, surviving through this for such a long time

and we're both so tired.

>

> I have OCD as well, and I had several horrible strep infections and flus when

I was young. It developed right around the middle of a mass of these infections.

My sister has it as well, much worse than I do, and she was plagued with throat

infections as well. Whether these are all linked or coincidental I have no idea.

>

> I'm looking for help, advice, anything. Anything that may help us figure

things out. So many therapies recommended to us now are not covered by insurance

and are super expensive and far away so we'd have to do a great deal of driving.

One suggestion for this essential oils hands on healing stuff is like $250 per

session and over an hour and a half away from us. I'm not really believing that

would work, though. Maybe help him relax some, but not cure or successfully

treat the OCD.

>

> What treatments have you all tried and what has worked for you and/or your

children with OCD?

>

> Thank you so much for letting me join this group. I appreciate it more than I

could ever say.

>

> Thank you, thank you, thank you,

> Bird

>

>

[Guest guest]

Hi Bird,

I am somewhat of a newbie here myself, but I wanted to say welcome. I wish I

could offer some helpful answers or advice, but my only thought at the moment is

the PANDAS/PANS angle, as it sounds like your son (and you) could both be helped

by getting a proper diagnosis and treatment for PANDAS. You need to make sure

you see a doctor who has expertise diagnosing and treating PANDAS. I know, not

easy to find, but you may find something on the IOCDF website if you haven't

been there already: http://www.ocfoundation.org/

> Hi, I thought I'd introduce myself and give a little bit of information about

why I was looking for a group like this.

>

> My name is Bird and I've got a son who is 19. At seven years old he developed

a severe strep throat infection. Antibiotics were not very successful in

clearing up the infection and it came right back. He battled with the strep

infection for a month and when it was all done he had OCD. I'm not kidding. It

came on so fast and was such a huge change that it was stunning and

heartbreaking.

>

> My son has germ phobias, if that's the right way to put it. I'm not sure. He

washes his hands several times a day and for a few minutes or so each time. He,

at one point after an extremely severe viral infection (the Norwalk virus) was

not allowing anyone to touch him. He wore latex gloves or mitten everywhere, and

a mask, would hide in his closet when people came over in case they were sick.

He would have trouble getting out of bed because he felt the floor was

contaminated. He also carried a bucket around with him in case he threw up. It

terrified him. It was the most violent flu I'd ever seen. This lasted almost a

year and six months.

>

> Now he is having trouble with feeling that food may be poisoned because it

wasn't cooked properly and such. He's also afraid of taking medication because

it may not have been made properly and poison him. His doctor says this is a

more rare type of OCD. It's awful. I actually test things for him so he isn't so

afraid that he won't eat. He's already super skinny from all the anxiety and

such.

>

> He also does counting and toe flicking and counting the flicking; he has to

turn off the faucets just right or he may go blind according to his OCD. He

knows all of this is nonsense. He tells me that all the time but he can't make

it stop. It's so horrible to watch him suffer like this. I want to make it

better and I can't. It effects him nearly all the time... some anxiety about

something that he's thinking. He also gets sudden bad images in his mind, or

thoughts, rather, and they're weird. Like he will get afraid someone has been

horribly hurt or something like that. I have that one. I understand that one

well. I can shake it off now fairly well, he can't.

>

> He battles depression, anxiety and panic attacks. He's been on antidepressants

since he was seven years old to help control the OCD, and sometimes it's done

great. Other times, well, it flares up and it takes several months to a year or

so to get it back into a more manageable state. Right now he's on Luvox and it's

not doing the trick.

>

> We have a psychiatrist who isn't all that trained in OCD and we're having

trouble finding one. A psychologist has been recommended to us. He does

Neurofeedback- EEG monitoring and also uses electrical impulses sent back into

the brain to " cancel out " the impulses for OCD. I have never heard of it before

but my son was a bit afraid to try it and we've not decided if it's really valid

or not to try it. It's extremely expensive and not covered by insurance. It

could take a very long time before he improves, if he improves. WE're looking

into exposure therapy but have yet to find someone qualified to do the therapy.

>

> It has been a very, very, very long and at times excruciating journey. Nobody

understands the hell of it unless they go through it themselves.

>

> He has two therapists. One wants him off the medication and on supplements and

dietary changes as well as seeing a Functional Medicine doctor who may be

suspicious that he has strep infections that never went a way from the time he

was seven years old and would like to treat him with long term antibiotics and

antivirals.

>

> The other therapist things he should be using essential oils, Reiki,

meditation, hands on healing and other such things to help him with this as well

as his medication and seeing a CBT.

>

> We've been fighting through this, surviving through this for such a long time

and we're both so tired.

>

> I have OCD as well, and I had several horrible strep infections and flus when

I was young. It developed right around the middle of a mass of these infections.

My sister has it as well, much worse than I do, and she was plagued with throat

infections as well. Whether these are all linked or coincidental I have no idea.

>

> I'm looking for help, advice, anything. Anything that may help us figure

things out. So many therapies recommended to us now are not covered by insurance

and are super expensive and far away so we'd have to do a great deal of driving.

One suggestion for this essential oils hands on healing stuff is like $250 per

session and over an hour and a half away from us. I'm not really believing that

would work, though. Maybe help him relax some, but not cure or successfully

treat the OCD.

>

> What treatments have you all tried and what has worked for you and/or your

children with OCD?

>

> Thank you so much for letting me join this group. I appreciate it more than I

could ever say.

>

> Thank you, thank you, thank you,

> Bird

>

>

[Guest guest]

Thank you, and . I've checked into PANDAS and I haven't found a

doctor who actually knows much about it in our area. I know that you can have

blood tests done for strep infections and antibiotics given, but other than

that, I've found a Functional Medicine doctor who was recommended to us. She is

quite expensive. By the time we get all the supplements, medications, treatments

we're talking about it being in the thousands...

The other thing that was recommended was EMDR, which I just learned about

through his current therapist and have no real information on. Has anyone used

this technique at all with success?

>

> Hi Bird,

>

> I am somewhat of a newbie here myself, but I wanted to say welcome. I wish I

could offer some helpful answers or advice, but my only thought at the moment is

the PANDAS/PANS angle, as it sounds like your son (and you) could both be helped

by getting a proper diagnosis and treatment for PANDAS. You need to make sure

you see a doctor who has expertise diagnosing and treating PANDAS. I know, not

easy to find, but you may find something on the IOCDF website if you haven't

been there already: http://www.ocfoundation.org/

>

>

>

> > Hi, I thought I'd introduce myself and give a little bit of information

about why I was looking for a group like this.

> >

> > My name is Bird and I've got a son who is 19. At seven years old he

developed a severe strep throat infection. Antibiotics were not very successful

in clearing up the infection and it came right back. He battled with the strep

infection for a month and when it was all done he had OCD. I'm not kidding. It

came on so fast and was such a huge change that it was stunning and

heartbreaking.

> >

> > My son has germ phobias, if that's the right way to put it. I'm not sure. He

washes his hands several times a day and for a few minutes or so each time. He,

at one point after an extremely severe viral infection (the Norwalk virus) was

not allowing anyone to touch him. He wore latex gloves or mitten everywhere, and

a mask, would hide in his closet when people came over in case they were sick.

He would have trouble getting out of bed because he felt the floor was

contaminated. He also carried a bucket around with him in case he threw up. It

terrified him. It was the most violent flu I'd ever seen. This lasted almost a

year and six months.

> >

> > Now he is having trouble with feeling that food may be poisoned because it

wasn't cooked properly and such. He's also afraid of taking medication because

it may not have been made properly and poison him. His doctor says this is a

more rare type of OCD. It's awful. I actually test things for him so he isn't so

afraid that he won't eat. He's already super skinny from all the anxiety and

such.

> >

> > He also does counting and toe flicking and counting the flicking; he has to

turn off the faucets just right or he may go blind according to his OCD. He

knows all of this is nonsense. He tells me that all the time but he can't make

it stop. It's so horrible to watch him suffer like this. I want to make it

better and I can't. It effects him nearly all the time... some anxiety about

something that he's thinking. He also gets sudden bad images in his mind, or

thoughts, rather, and they're weird. Like he will get afraid someone has been

horribly hurt or something like that. I have that one. I understand that one

well. I can shake it off now fairly well, he can't.

> >

> > He battles depression, anxiety and panic attacks. He's been on

antidepressants since he was seven years old to help control the OCD, and

sometimes it's done great. Other times, well, it flares up and it takes several

months to a year or so to get it back into a more manageable state. Right now

he's on Luvox and it's not doing the trick.

> >

> > We have a psychiatrist who isn't all that trained in OCD and we're having

trouble finding one. A psychologist has been recommended to us. He does

Neurofeedback- EEG monitoring and also uses electrical impulses sent back into

the brain to " cancel out " the impulses for OCD. I have never heard of it before

but my son was a bit afraid to try it and we've not decided if it's really valid

or not to try it. It's extremely expensive and not covered by insurance. It

could take a very long time before he improves, if he improves. WE're looking

into exposure therapy but have yet to find someone qualified to do the therapy.

> >

> > It has been a very, very, very long and at times excruciating journey.

Nobody understands the hell of it unless they go through it themselves.

> >

> > He has two therapists. One wants him off the medication and on supplements

and dietary changes as well as seeing a Functional Medicine doctor who may be

suspicious that he has strep infections that never went a way from the time he

was seven years old and would like to treat him with long term antibiotics and

antivirals.

> >

> > The other therapist things he should be using essential oils, Reiki,

meditation, hands on healing and other such things to help him with this as well

as his medication and seeing a CBT.

> >

> > We've been fighting through this, surviving through this for such a long

time and we're both so tired.

> >

> > I have OCD as well, and I had several horrible strep infections and flus

when I was young. It developed right around the middle of a mass of these

infections. My sister has it as well, much worse than I do, and she was plagued

with throat infections as well. Whether these are all linked or coincidental I

have no idea.

> >

> > I'm looking for help, advice, anything. Anything that may help us figure

things out. So many therapies recommended to us now are not covered by insurance

and are super expensive and far away so we'd have to do a great deal of driving.

One suggestion for this essential oils hands on healing stuff is like $250 per

session and over an hour and a half away from us. I'm not really believing that

would work, though. Maybe help him relax some, but not cure or successfully

treat the OCD.

> >

> > What treatments have you all tried and what has worked for you and/or your

children with OCD?

> >

> > Thank you so much for letting me join this group. I appreciate it more than

I could ever say.

> >

> > Thank you, thank you, thank you,

> > Bird

> >

> >

>

>

>

>

[Guest guest]

Thank you, and . I've checked into PANDAS and I haven't found a

doctor who actually knows much about it in our area. I know that you can have

blood tests done for strep infections and antibiotics given, but other than

that, I've found a Functional Medicine doctor who was recommended to us. She is

quite expensive. By the time we get all the supplements, medications, treatments

we're talking about it being in the thousands...

The other thing that was recommended was EMDR, which I just learned about

through his current therapist and have no real information on. Has anyone used

this technique at all with success?

>

> Hi Bird,

>

> I am somewhat of a newbie here myself, but I wanted to say welcome. I wish I

could offer some helpful answers or advice, but my only thought at the moment is

the PANDAS/PANS angle, as it sounds like your son (and you) could both be helped

by getting a proper diagnosis and treatment for PANDAS. You need to make sure

you see a doctor who has expertise diagnosing and treating PANDAS. I know, not

easy to find, but you may find something on the IOCDF website if you haven't

been there already: http://www.ocfoundation.org/

>

>

>

> > Hi, I thought I'd introduce myself and give a little bit of information

about why I was looking for a group like this.

> >

> > My name is Bird and I've got a son who is 19. At seven years old he

developed a severe strep throat infection. Antibiotics were not very successful

in clearing up the infection and it came right back. He battled with the strep

infection for a month and when it was all done he had OCD. I'm not kidding. It

came on so fast and was such a huge change that it was stunning and

heartbreaking.

> >

> > My son has germ phobias, if that's the right way to put it. I'm not sure. He

washes his hands several times a day and for a few minutes or so each time. He,

at one point after an extremely severe viral infection (the Norwalk virus) was

not allowing anyone to touch him. He wore latex gloves or mitten everywhere, and

a mask, would hide in his closet when people came over in case they were sick.

He would have trouble getting out of bed because he felt the floor was

contaminated. He also carried a bucket around with him in case he threw up. It

terrified him. It was the most violent flu I'd ever seen. This lasted almost a

year and six months.

> >

> > Now he is having trouble with feeling that food may be poisoned because it

wasn't cooked properly and such. He's also afraid of taking medication because

it may not have been made properly and poison him. His doctor says this is a

more rare type of OCD. It's awful. I actually test things for him so he isn't so

afraid that he won't eat. He's already super skinny from all the anxiety and

such.

> >

> > He also does counting and toe flicking and counting the flicking; he has to

turn off the faucets just right or he may go blind according to his OCD. He

knows all of this is nonsense. He tells me that all the time but he can't make

it stop. It's so horrible to watch him suffer like this. I want to make it

better and I can't. It effects him nearly all the time... some anxiety about

something that he's thinking. He also gets sudden bad images in his mind, or

thoughts, rather, and they're weird. Like he will get afraid someone has been

horribly hurt or something like that. I have that one. I understand that one

well. I can shake it off now fairly well, he can't.

> >

> > He battles depression, anxiety and panic attacks. He's been on

antidepressants since he was seven years old to help control the OCD, and

sometimes it's done great. Other times, well, it flares up and it takes several

months to a year or so to get it back into a more manageable state. Right now

he's on Luvox and it's not doing the trick.

> >

> > We have a psychiatrist who isn't all that trained in OCD and we're having

trouble finding one. A psychologist has been recommended to us. He does

Neurofeedback- EEG monitoring and also uses electrical impulses sent back into

the brain to " cancel out " the impulses for OCD. I have never heard of it before

but my son was a bit afraid to try it and we've not decided if it's really valid

or not to try it. It's extremely expensive and not covered by insurance. It

could take a very long time before he improves, if he improves. WE're looking

into exposure therapy but have yet to find someone qualified to do the therapy.

> >

> > It has been a very, very, very long and at times excruciating journey.

Nobody understands the hell of it unless they go through it themselves.

> >

> > He has two therapists. One wants him off the medication and on supplements

and dietary changes as well as seeing a Functional Medicine doctor who may be

suspicious that he has strep infections that never went a way from the time he

was seven years old and would like to treat him with long term antibiotics and

antivirals.

> >

> > The other therapist things he should be using essential oils, Reiki,

meditation, hands on healing and other such things to help him with this as well

as his medication and seeing a CBT.

> >

> > We've been fighting through this, surviving through this for such a long

time and we're both so tired.

> >

> > I have OCD as well, and I had several horrible strep infections and flus

when I was young. It developed right around the middle of a mass of these

infections. My sister has it as well, much worse than I do, and she was plagued

with throat infections as well. Whether these are all linked or coincidental I

have no idea.

> >

> > I'm looking for help, advice, anything. Anything that may help us figure

things out. So many therapies recommended to us now are not covered by insurance

and are super expensive and far away so we'd have to do a great deal of driving.

One suggestion for this essential oils hands on healing stuff is like $250 per

session and over an hour and a half away from us. I'm not really believing that

would work, though. Maybe help him relax some, but not cure or successfully

treat the OCD.

> >

> > What treatments have you all tried and what has worked for you and/or your

children with OCD?

> >

> > Thank you so much for letting me join this group. I appreciate it more than

I could ever say.

> >

> > Thank you, thank you, thank you,

> > Bird

> >

> >

>

>

>

>

[Guest guest]

Hi Bird, welcome! I have a son, 23, with OCD and also AS. His OCD began in 6th

grade, quite severely and what seemed overnight too. Never tied his to PANDAS

though.

Since your son obviously seems PANDAS, I was wondering what antibiotics he has

tried and for how long? I think a couple abx work better with treating PANDAS

and plus have to try a few weeks longer than just when treating strep. I think

some parents have found that Motrin (?) may show some slight improvement if it's

PANDAS, don't know if that's always the case but emphasize I just read it has

helped, not long-term or cured, etc. So maybe sort of an " indicator " if it

seems to help some.

Still, even with PANDAS, some do find an SSRI helps, but most need a low dose.

Well with OCD in general, you use the lowest dose that is effective, that's true

for everyone. My son was on Celexa in 9th and 10th grades, only SRRI we have

tried, and it worked great! Prior to that, we were lucky with inositol powder,

it helped him a lot in middle school (there's info in our FILES section here

about inositol powder). We tried it again later, after Celexa, but didn't help

his OCD. (Yep, his OCD returned in a new way after stopping the Celexa. He has

steadfastly refused to try medication since).

My thoughts are - see about antibiotic use for a few weeks if you haven't really

given that a good try yet.

Have you tried the OCD Foundation's website for searching for a therapist near

you?

's OCD would worsen with illness and would take weeks to die down. I

just increased his Celexa or inositol powder at those times.

We couldn't find a therapist near us and basically did the therapy on our own,

baby steps for us. With the help of inositol powder and the Celexa.

Like you, I have a " bit " of OCD myself that I can easily shrug off, distract

from. Not so for my son, the real disorder!!

Glad you found our group! We have other PANDAS parents here, hope they read

your post!

>

> Hi, I thought I'd introduce myself and give a little bit of information about

why I was looking for a group like this.

>

> My name is Bird and I've got a son who is 19. At seven years old he developed

a severe strep throat infection. Antibiotics were not very successful in

clearing up the infection and it came right back. He battled with the strep

infection for a month and when it was all done he had OCD. I'm not kidding. It

came on so fast and was such a huge change that it was stunning and

heartbreaking.

>

[Guest guest]

Hi Bird, welcome! I have a son, 23, with OCD and also AS. His OCD began in 6th

grade, quite severely and what seemed overnight too. Never tied his to PANDAS

though.

Since your son obviously seems PANDAS, I was wondering what antibiotics he has

tried and for how long? I think a couple abx work better with treating PANDAS

and plus have to try a few weeks longer than just when treating strep. I think

some parents have found that Motrin (?) may show some slight improvement if it's

PANDAS, don't know if that's always the case but emphasize I just read it has

helped, not long-term or cured, etc. So maybe sort of an " indicator " if it

seems to help some.

Still, even with PANDAS, some do find an SSRI helps, but most need a low dose.

Well with OCD in general, you use the lowest dose that is effective, that's true

for everyone. My son was on Celexa in 9th and 10th grades, only SRRI we have

tried, and it worked great! Prior to that, we were lucky with inositol powder,

it helped him a lot in middle school (there's info in our FILES section here

about inositol powder). We tried it again later, after Celexa, but didn't help

his OCD. (Yep, his OCD returned in a new way after stopping the Celexa. He has

steadfastly refused to try medication since).

My thoughts are - see about antibiotic use for a few weeks if you haven't really

given that a good try yet.

Have you tried the OCD Foundation's website for searching for a therapist near

you?

's OCD would worsen with illness and would take weeks to die down. I

just increased his Celexa or inositol powder at those times.

We couldn't find a therapist near us and basically did the therapy on our own,

baby steps for us. With the help of inositol powder and the Celexa.

Like you, I have a " bit " of OCD myself that I can easily shrug off, distract

from. Not so for my son, the real disorder!!

Glad you found our group! We have other PANDAS parents here, hope they read

your post!

>

> Hi, I thought I'd introduce myself and give a little bit of information about

why I was looking for a group like this.

>

> My name is Bird and I've got a son who is 19. At seven years old he developed

a severe strep throat infection. Antibiotics were not very successful in

clearing up the infection and it came right back. He battled with the strep

infection for a month and when it was all done he had OCD. I'm not kidding. It

came on so fast and was such a huge change that it was stunning and

heartbreaking.

>

[Guest guest]

Hi

Thank you for sharing so much about your son and what you've tried and gone

through. I am going to talk to his psychiatrist about antibiotics and the

inositol powder. He's on 150 mg of Luvox and they had him on 80 prozac with it.

That kind of freaked me out. They weened him off the prozac just this past

month. They said it may have been causing him to have saturation difficulties

and causing the opposite of what they were hoping to see happen. I hope his

psychiatrist can prescribe antibiotics because I think I'm going to be hard

pressed to find a doctor who'll willingly prescribe them for that long for

seemingly " no reason " ... or what they would suppose to be no reason.

I struggled horribly with OCD myself. I don't want to down play it. I still do.

Mine was in the form of scrupulosity when I was a teen, and now it's in the form

of health concerns because I got sick 12 years ago and that's just where it

decided to go. I always use a kind of " exposure therapy " for myself. Sometimes I

get panic attacks from it when I can't calm it down and I get scared easily.

But... I use calming techniques and such and do my best to try and deal with it.

I just can't stand how much this stuff can make life so danged horribly

difficult. And I hate watching my son go through it.

I am very much going to try and get a doctor to try these things with my son.

Thank you,

Bird

> >

> > Hi, I thought I'd introduce myself and give a little bit of information

about why I was looking for a group like this.

> >

> > My name is Bird and I've got a son who is 19. At seven years old he

developed a severe strep throat infection. Antibiotics were not very successful

in clearing up the infection and it came right back. He battled with the strep

infection for a month and when it was all done he had OCD. I'm not kidding. It

came on so fast and was such a huge change that it was stunning and

heartbreaking.

> >

>

[Guest guest]

What part of the country do you live in? There are really only a handful of

doctors that truly know how to treat PANDAS. I would recommend Dr. Bouboulis in

Connecticut. I know he treats both children and adults.

PANDAS Reousrce Network has a list of doctors around the country that are at

least PANDAS friendly.

Many PANDAS parents have found that DAN (Defeat Autism Now) doctors are

relatively knowledgable about PANDAS and willing to treat. I'm not quite sure

how to find a DAN doctor, though.

I think the best thing you can do is get to a doctor that knows how to diagnose

and treat. If it is PANDAS, the ssri's and therapy will not be the answer. They

may help a little, but you really need to treat the underlying infection/immune

disorder.

Kara

>

> Thank you, and . I've checked into PANDAS and I haven't found a

doctor who actually knows much about it in our area. I know that you can have

blood tests done for strep infections and antibiotics given, but other than

that, I've found a Functional Medicine doctor who was recommended to us. She is

quite expensive. By the time we get all the supplements, medications, treatments

we're talking about it being in the thousands...

>

> The other thing that was recommended was EMDR, which I just learned about

through his current therapist and have no real information on. Has anyone used

this technique at all with success?

>

>

[Guest guest]

What part of the country do you live in? There are really only a handful of

doctors that truly know how to treat PANDAS. I would recommend Dr. Bouboulis in

Connecticut. I know he treats both children and adults.

PANDAS Reousrce Network has a list of doctors around the country that are at

least PANDAS friendly.

Many PANDAS parents have found that DAN (Defeat Autism Now) doctors are

relatively knowledgable about PANDAS and willing to treat. I'm not quite sure

how to find a DAN doctor, though.

I think the best thing you can do is get to a doctor that knows how to diagnose

and treat. If it is PANDAS, the ssri's and therapy will not be the answer. They

may help a little, but you really need to treat the underlying infection/immune

disorder.

Kara

>

> Thank you, and . I've checked into PANDAS and I haven't found a

doctor who actually knows much about it in our area. I know that you can have

blood tests done for strep infections and antibiotics given, but other than

that, I've found a Functional Medicine doctor who was recommended to us. She is

quite expensive. By the time we get all the supplements, medications, treatments

we're talking about it being in the thousands...

>

> The other thing that was recommended was EMDR, which I just learned about

through his current therapist and have no real information on. Has anyone used

this technique at all with success?

>

>