Re: outbursts for unknown reasons-

[Guest guest]

Hi ,

Thank you so much for sharing your experiences with me. Are there many adults

that have pandas? Your insight is so on target for my son. He cannot tolerate

probiotics. We found that out the hard way. The custom proiotics recommended by

the DAN DR is what actually sent me to . I even stopped the only one

kyodophilis that he seemed to tolerate. Dr had me remove it about 6

weeks ago because Jake was in a possible pandas flare and having a rough time.

The valtrex and diflucan both seem to help him. We had major language and

cognitive improvements on both initially.I'm sure you're correct about the ear

infection trigger. My Dr (general practitioner) who is friendly put Jake on

omnicef for the infection. Yes, he was great for  3-4 days and then the

outbursts started again. It just gets so confusing because I can't tell whether

it's the pandas, the antibiotic or the combo with the diflucan and valtrex.

I was keeping a journal when he was on DAN. But now I see I need to keep it on

too.

So you think I should finish the antibiotic, he has 3 more days on it. Continue

diflucan, valtrex, allergy meds and risperdal which he has been on for years,

and give motrin as needed. I know you are not a Dr but your experience is again

so on the mark!

I have one more concern that I would like to mention, Jake 's eye blinking tics

have escalated since starting the protocol. Dr believes it is

because of his elevated Aso titers(460). It seems to be really bad for a day or

two and then stops and then starts again. I have observed tics with his hands

and eyes during previous pandas flares. But they seem to be worse now . He has

also had pee accidents during the day and at night , that cycle on and off.

Can you tell me if you have experienced tics or bladder issues yourself durring

these times? Again, thank you for taking the time to explain your own

experiences. Please give me your valuable input it is a sanity saver for me.

I hope you and your boys continue to feel better and thrive!

Vicki

From: <thecolemans4@...>

Subject: Re: outbursts for unknown reasons

Date: Monday, July 7, 2008, 10:24 PM

Hey Vicki -

I have PANDAS (I'm about to be 39), and I've been struggling (untreated most of

the time except random antibiotics and some occasional Diflucan) since about

2002 with this last episode (probably my 4th, and they tend to last about 3-5

years untreated for me).  While I don't have tantrums (that'd be a problem for a

grown woman but could be fun I guess!), I can definitely say that ANY bacterial

infection can set it off.  For certain, mycoplasma pneumonia sets it off about

1/2 of the severity of strep.  Also, cerrtain probiotics do - Culturelle,

anything with l.Rhamusus in it.  So do use probiotics, but use only acidophilus,

or best of all (the least likely to trigger mine) is Kyodophilus.  But I do tend

cut back on all probiotics unfortunately when my PANDAS really really peaks ...

but that could just be that I'm suspecting it for no reason - I get paranoid

about all foods when my OCD peaks.  (My ocd manifests in rhuminations, a strong

urge to

gather wood, and food contamination anxiety, intense generalized &

social anxiety, and a complete inability to remember anything or focus on

anything).

Even more than the ear infection, if he took zythromycin (ie Z-pack), that could

really really set it off even more.  While that's a fine antibiotic for tackling

the infection, in my experience it will aggrevate the symptoms for a while -

although it does bring my ASO down which in the big picture isn't all bad.  I

don't know why it aggrevates it, but it does.  I still use it for my boys if

Cefzil isn't doing the job, but it WILL make my oldest quite irritable for a few

days.  I always always wash off the pink dye - it's the med itself.

I would recommend a journal, if only so that you feel you are doing something to

find the triggers.  But honestly, an infection can trigger it and for some time,

there's little you can do about it than avoid known triggers, until the protocol

has time (like... a year) to really cool down the over-reactive immune system. 

My boys would both get OCD 3 days prior to strep when they were little, which

fortunately went away once treated, but as they have gotten older, they react

like normal kids to strep lately.

How long was/is he on antibiotics? Which one?  Did you notice outbursts starting

at 3-5 day mark of the antibiotic?  That is when I feel the peak if it is

setting me off.  (That does not mean I'm going to stop the antibiotic though -

sometimes you just have to ride it out.)  BTW - Diflucan is a miracle for my

PANDAS.  The antibiotics never help as much alone as they do in combo

w/Diflucan.  I would not really worry about that one, but I would make sure

you're not using the hot-pink one.  Usually the generics are a salmon or light

pink, and they aren't usually as bad.  If Valtrex could trigger it, too bad -

it's too important, but I don't really think it would - as long as you're

washing off the blue dye. 

Just try to make it through these outbursts and stay in touch with the doc. 

Sometimes as you're making strides in one area, you take steps back in other

areas.  I change " One Day at a Time " to " 15 minutes at a time " when I'm going

through periods like that. 

HTH-

outbursts for unknown reasons

How do you figure out what is causing outursts? My son is very inconsistent and

it has always been a problem. He has PANDAS and is finally i believe getting the

right treatment plan by being on the protocol.

He started on valtrex and for a week he was amazing. Then he kind of plateaued.

He started diflucan and he was even more amazing. After 2 weeks he starts with

the outbursts and turns out he has a double ear infection. He starts

antibiotics, he's better, then he's freaking out with the outbursts again. All

along he still has high ASO strep titers.

How do you figure out the cause. Is the diflucan causing a die off and the

antibiotic is making it worse? Or is the PANDAS set off because of the ear

infection.

The outbursts are like major temper tantrums, they do look anxiety and

internally related initially then he lashes out and gets worked up and even

aggressive. They stop in about 10-15 minutes and he acts totally fine like it

never happened. Those 15 minutes are very very upsetting!!!

Any parents want to give me some insight or thoughts about what might be

going on. Through it all he has made more noticeable progress in the past 3

months on then any other time. I just wish I understood what is driving the

outbursts.

Vicki

[Guest guest]

I cannot relate totally to the Pandas experiences, but 2 things seem

to set my son off....1. tantrums during die off, and well after

sometimes I thought the die-off was over, and 2. cinnamon. Cinnamon

for him can be a treat, but if he has it multiple times over the

course of a few days watch out!

>

> From: <thecolemans4@...>

> Subject: Re: outbursts for unknown reasons

>

> Date: Monday, July 7, 2008, 10:24 PM

>

>

>

>

>

>

> Hey Vicki -

> I have PANDAS (I'm about to be 39), and I've been struggling

(untreated most of the time except random antibiotics and some

occasional Diflucan) since about 2002 with this last episode

(probably my 4th, and they tend to last about 3-5 years untreated for

me).  While I don't have tantrums (that'd be a problem for a grown

woman but could be fun I guess!), I can definitely say that ANY

bacterial infection can set it off.  For certain, mycoplasma

pneumonia sets it off about 1/2 of the severity of strep.  Also,

cerrtain probiotics do - Culturelle, anything with l.Rhamusus in it. 

So do use probiotics, but use only acidophilus, or best of all (the

least likely to trigger mine) is Kyodophilus.  But I do tend cut back

on all probiotics unfortunately when my PANDAS really really

peaks ... but that could just be that I'm suspecting it for no

reason - I get paranoid about all foods when my OCD peaks.  (My ocd

manifests in rhuminations, a strong urge to

> gather wood, and food contamination anxiety, intense generalized &

social anxiety, and a complete inability to remember anything or

focus on anything).

> Even more than the ear infection, if he took zythromycin (ie Z-

pack), that could really really set it off even more.  While that's a

fine antibiotic for tackling the infection, in my experience it will

aggrevate the symptoms for a while - although it does bring my ASO

down which in the big picture isn't all bad.  I don't know why it

aggrevates it, but it does.  I still use it for my boys if Cefzil

isn't doing the job, but it WILL make my oldest quite irritable for a

few days.  I always always wash off the pink dye - it's the med

itself.

> I would recommend a journal, if only so that you feel you are doing

something to find the triggers.  But honestly, an infection can

trigger it and for some time, there's little you can do about it than

avoid known triggers, until the protocol has time (like... a year) to

really cool down the over-reactive immune system.  My boys would both

get OCD 3 days prior to strep when they were little, which

fortunately went away once treated, but as they have gotten older,

they react like normal kids to strep lately.

> How long was/is he on antibiotics? Which one?  Did you notice

outbursts starting at 3-5 day mark of the antibiotic?  That is when I

feel the peak if it is setting me off.  (That does not mean I'm going

to stop the antibiotic though - sometimes you just have to ride it

out.)  BTW - Diflucan is a miracle for my PANDAS.  The antibiotics

never help as much alone as they do in combo w/Diflucan.  I would not

really worry about that one, but I would make sure you're not using

the hot-pink one.  Usually the generics are a salmon or light pink,

and they aren't usually as bad.  If Valtrex could trigger it, too

bad - it's too important, but I don't really think it would - as long

as you're washing off the blue dye. 

> Just try to make it through these outbursts and stay in touch with

the doc.  Sometimes as you're making strides in one area, you take

steps back in other areas.  I change " One Day at a Time " to " 15

minutes at a time " when I'm going through periods like that. 

> HTH-

>

>

> outbursts for unknown reasons

>

> How do you figure out what is causing outursts? My son is very

inconsistent and it has always been a problem. He has PANDAS and is

finally i believe getting the right treatment plan by being on the

protocol.

> He started on valtrex and for a week he was amazing. Then he kind

of plateaued. He started diflucan and he was even more amazing. After

2 weeks he starts with the outbursts and turns out he has a double

ear infection. He starts antibiotics, he's better, then he's freaking

out with the outbursts again. All along he still has high ASO strep

titers.

> How do you figure out the cause. Is the diflucan causing a die off

and the antibiotic is making it worse? Or is the PANDAS set off

because of the ear infection.

> The outbursts are like major temper tantrums, they do look anxiety

and internally related initially then he lashes out and gets worked

up and even aggressive. They stop in about 10-15 minutes and he acts

totally fine like it never happened. Those 15 minutes are very very

upsetting!!!

>

> Any parents want to give me some insight or thoughts about

what might be going on. Through it all he has made more noticeable

progress in the past 3 months on then any other time. I just

wish I understood what is driving the outbursts.

> Vicki

>

>

[Guest guest]

Interesting about cinnamon, because isn't it supposed to rev the metabolism

and also isn't it good for the immune system? Do you think that it could be

stirring up die-off like stuff?

Kristy

From: [mailto: ] On Behalf Of

meljackmom

Sent: Tuesday, July 08, 2008 5:00 AM

Subject: Re: outbursts for unknown reasons-

I cannot relate totally to the Pandas experiences, but 2 things seem

to set my son off....1. tantrums during die off, and well after

sometimes I thought the die-off was over, and 2. cinnamon. Cinnamon

for him can be a treat, but if he has it multiple times over the

course of a few days watch out!

>

> From: <thecolemans4@...>

> Subject: Re: outbursts for unknown reasons

> <mailto:%40>

> Date: Monday, July 7, 2008, 10:24 PM

>

>

>

>

>

>

> Hey Vicki -

> I have PANDAS (I'm about to be 39), and I've been struggling

(untreated most of the time except random antibiotics and some

occasional Diflucan) since about 2002 with this last episode

(probably my 4th, and they tend to last about 3-5 years untreated for

me). While I don't have tantrums (that'd be a problem for a grown

woman but could be fun I guess!), I can definitely say that ANY

bacterial infection can set it off. For certain, mycoplasma

pneumonia sets it off about 1/2 of the severity of strep. Also,

cerrtain probiotics do - Culturelle, anything with l.Rhamusus in it.

So do use probiotics, but use only acidophilus, or best of all (the

least likely to trigger mine) is Kyodophilus. But I do tend cut back

on all probiotics unfortunately when my PANDAS really really

peaks ... but that could just be that I'm suspecting it for no

reason - I get paranoid about all foods when my OCD peaks. (My ocd

manifests in rhuminations, a strong urge to

> gather wood, and food contamination anxiety, intense generalized &

social anxiety, and a complete inability to remember anything or

focus on anything).

> Even more than the ear infection, if he took zythromycin (ie Z-

pack), that could really really set it off even more. While that's a

fine antibiotic for tackling the infection, in my experience it will

aggrevate the symptoms for a while - although it does bring my ASO

down which in the big picture isn't all bad. I don't know why it

aggrevates it, but it does. I still use it for my boys if Cefzil

isn't doing the job, but it WILL make my oldest quite irritable for a

few days. I always always wash off the pink dye - it's the med

itself.

> I would recommend a journal, if only so that you feel you are doing

something to find the triggers. But honestly, an infection can

trigger it and for some time, there's little you can do about it than

avoid known triggers, until the protocol has time (like... a year) to

really cool down the over-reactive immune system. My boys would both

get OCD 3 days prior to strep when they were little, which

fortunately went away once treated, but as they have gotten older,

they react like normal kids to strep lately.

> How long was/is he on antibiotics? Which one? Did you notice

outbursts starting at 3-5 day mark of the antibiotic? That is when I

feel the peak if it is setting me off. (That does not mean I'm going

to stop the antibiotic though - sometimes you just have to ride it

out.) BTW - Diflucan is a miracle for my PANDAS. The antibiotics

never help as much alone as they do in combo w/Diflucan. I would not

really worry about that one, but I would make sure you're not using

the hot-pink one. Usually the generics are a salmon or light pink,

and they aren't usually as bad. If Valtrex could trigger it, too

bad - it's too important, but I don't really think it would - as long

as you're washing off the blue dye.

> Just try to make it through these outbursts and stay in touch with

the doc. Sometimes as you're making strides in one area, you take

steps back in other areas. I change " One Day at a Time " to " 15

minutes at a time " when I'm going through periods like that.

> HTH-

>

>

> outbursts for unknown reasons

>

> How do you figure out what is causing outursts? My son is very

inconsistent and it has always been a problem. He has PANDAS and is

finally i believe getting the right treatment plan by being on the

protocol.

> He started on valtrex and for a week he was amazing. Then he kind

of plateaued. He started diflucan and he was even more amazing. After

2 weeks he starts with the outbursts and turns out he has a double

ear infection. He starts antibiotics, he's better, then he's freaking

out with the outbursts again. All along he still has high ASO strep

titers.

> How do you figure out the cause. Is the diflucan causing a die off

and the antibiotic is making it worse? Or is the PANDAS set off

because of the ear infection.

> The outbursts are like major temper tantrums, they do look anxiety

and internally related initially then he lashes out and gets worked

up and even aggressive. They stop in about 10-15 minutes and he acts

totally fine like it never happened. Those 15 minutes are very very

upsetting!!!

>

> Any parents want to give me some insight or thoughts about

what might be going on. Through it all he has made more noticeable

progress in the past 3 months on then any other time. I just

wish I understood what is driving the outbursts.

> Vicki

>

>

[Guest guest]

Hi Vicki-   (this got long - should've taken it off-list but I've already

deleted the email address & don't dare risk losing all I've typed lol - sorry

all others)

No I don't mind sharing my experiences at all lol.  I do give away some mighty

personal info - I've considered making a 'screen name' for myself.

Re many adults w/PANDAS?  I dunno.  I do know that I observe lots of people

w/very high anxiety or OCD having increases in their symptoms w/strep - and a

history of chronic strep.  I don't know if by definition I can be called PANDAS

- except that my first remembered experience with it was when I was 9, and has

continued with new onsets thru to now.  I don't even really know if I have the

'official' diagnosis of it, but several specialists have studied it after my

being referred to them, and used it in discussing my care and treatment options

(practically nothing that they're offering - I'm not doing IVIG unless Dr G or

Dr R told me to), but really, I use the PANDAS lable ONLY for one reason:  I

refuse to let them say my ASO isn't important as long as I'm not having

symptoms.  Because I AM.  But it's more than that, and it took showing chronic

iron deficient anemia correlates to how high or low my titers are, and that was

the only thing they

couldn't deny that was 'significant' enough to warrant trying to treat me. 

They also ignore the fact that I have 3 knew heart murmers now that I didn't

have before, because they are " mild " .  Whatever.  So I'm on my way to see Dr

myself as soon as I save up the plane ticket funds.

  I've only had one experience in life where I was fully symptom-free (ages

27-30), and I didn't know what to think - I actually went to the doctor because

my mind was quiet and I couldn't understand what was wrong.  What was wrong was

that I was actually normal!  The main reason the symptoms lasted as long as they

did was that I NEVER took antibiotics because they hurt my stomach so badly, but

around age 27 I did finish several rounds desperate to get rid of mycoplasma

pneumonia.  Now I CAN treat w/antibiotics as long as I get enough Diflucan to go

with it, but that is very hard to come by so technically I'm still not getting

enough treatment.  Now that I've been off antiobitics, my ASO shot right back to

1100 a few months ago, and I feel it climbing higher than that now.  Anyway, I

think strep can trigger anxiety and mild almost unnoticable ocd-like symptoms in

even normal people - I've witnessed it - but it just goes away and isn't as

intense,

because their immune reactions aren't as intense. 

Re finishing the antibiotics - yup, I'd finish them.  But Omnicef wrecked my

brain too! lol.   So that's a last resort med now - only after lower spectrum

longer periods have not helped.  But all in all, you don't want a chronic

bacterial infection hanging around while you try a few other antibiotics either,

so you're cursed if you do and cursed if you don't.  Just ride it out and it

should ease up soon enough.  What about at other times .. is he not on a

long-term one too?  (I found erythromycin irrirated me too , and I'm allergic

to sufa so I can't do ery-ped.  I manage ok w/doxycycline - that brings me

miracles in combo w/diflucan ... but your son's not old enough for it yet I

don't think.  Minocycline was very dissappointing.

You MUST keep on with the antivirals.  They are very unlikely to trigger it, but

if they do, they're worth it.  Never miss a single day, and try to never miss a

single dose.  They're the most important thing you can do!  Who knows if

another one will bring better results - Dr may cycle them later

depending on labs - but this isn't something you do early on.  As far as

antifungals go, Nizoral was AWESOME!  So when your year is up w/Diflucan, you

might have that to look forward to.  Being a boy, and it increasing hormones

like testosterone @ puberty may be good or bad - I don't know.

I've never taken risperdol.  It would make me crazy.  Just about any stimulant

does.  No one would be able to be around me! lol  I am unable to take SSRIs too

(so far - I'll try again after other things are stabilized), but I loved Effexor

XR until I got acute gastritis - now it triggers it every time.   Motrin hurts

my stomach so I do tylenol.  I've never had the priveledge of trying antivirals,

but I'll let you know when I do. 

Re pee accidents ... um... shhhh.... yup.  When my ASO goes up (or if I've had

mycoplasma pne.), I lose the sensation of needing to go, and frequency

increases, and capacity of the bladder to hold it goes down.  I just wear a

liner and laugh if I cough, and otherwise carry a timer around to go every 30min

to an hour (depending on how bad it is) so that I don't have accidents.  Haven't

had that one in about a year, even though my ASO is right back up to where it

was, so I'm not really sure what that's all about.  But there is a hormone

affected that controls the urinary function (in PANDAS and in and other

things), but this is more of a symptom to manage than a major crisis, and it

will/should go away.  Just develop some potty humor.

I'm not as prone to tics this last attack, but recently I did have the eye

twitch a few times.  I also tend to want to leap into the air (gross motor). 

Restless leg may kick in at some point too.  Most of all, I get songs going in

my head - the more the merrier.  (I had a song stuck in my head for 15 years -

lucky me I loved the song.)  Or some phrase will go 'round and 'round ... that

one can drive me nuts.  The music is welcome, the phrases are not.  When I was

late-teens early twenties, the tics were awful but they were such gross-motor

(leaping ballet and squeaks and squeals) that I didn't know they were tics until

much later, and I met a little boy w/Tourette's at the park, and he was doing

the same thing.

You know, in my teens, I didn't know what was wrong with me, and I had no access

to medical care, and I can keep strep infections for years.  I think your son

will do a lot better, so when you hear me talking about teens and adulthood and

wonder if it's going to last that long, I simply don't know, but I seriously

doubt it. I'd guess you're going to deal with this two years before it's

all gone (not all the same severity), but THEN, maybe it won't be as likely to

get re-triggered (with good and lasting care). Because you'll never miss a

smoldering infection again - he has had plenty that no one knew about I'd

bet.  But I found a lot of humor in my problems, and I hope you will try to find

some with your son - when you suffer neurological disorders, you can really

develop a fascination about how the mind and body works.  The better accepting

you are about them, the more relaxed he'll be when people are asking him why he

does that.  I'd giggle

and say I don't know, and I was one WIERD duck, but I was loved anyway.  I saw

a show about boys with Tourette's, and they were just awesome cool kids.   What

I was like as a kid (I bet I seemed pretty hopeless) isn't the same as an

adult.  You guys need to experience it as an event to be fascinated by (albeit

frustrated and often miserable) and live playfully in spite of it.

HTH-

[Guest guest]

,

Thank you. You are amazing. You explain it all so well!

I have hope and promise to keep up on the humor.

I'll be in touch.

Vicki

From: <thecolemans4@...>

Subject: Re: outbursts for unknown reasons-

Date: Tuesday, July 8, 2008, 7:43 PM

Hi Vicki-   (this got long - should've taken it off-list but I've already

deleted the email address & don't dare risk losing all I've typed lol - sorry

all others)

No I don't mind sharing my experiences at all lol.  I do give away some mighty

personal info - I've considered making a 'screen name' for myself.

Re many adults w/PANDAS?  I dunno.  I do know that I observe lots of people

w/very high anxiety or OCD having increases in their symptoms w/strep - and a

history of chronic strep.  I don't know if by definition I can be called PANDAS

- except that my first remembered experience with it was when I was 9, and has

continued with new onsets thru to now.  I don't even really know if I have the

'official' diagnosis of it, but several specialists have studied it after my

being referred to them, and used it in discussing my care and treatment options

(practically nothing that they're offering - I'm not doing IVIG unless Dr G or

Dr R told me to), but really, I use the PANDAS lable ONLY for one reason:  I

refuse to let them say my ASO isn't important as long as I'm not having

symptoms.  Because I AM.  But it's more than that, and it took showing chronic

iron deficient anemia correlates to how high or low my titers are, and that was

the only thing they

couldn't deny that was 'significant' enough to warrant trying to treat me.  They

also ignore the fact that I have 3 knew heart murmers now that I didn't have

before, because they are " mild " .  Whatever.  So I'm on my way to see Dr

myself as soon as I save up the plane ticket funds.

  I've only had one experience in life where I was fully symptom-free (ages

27-30), and I didn't know what to think - I actually went to the doctor because

my mind was quiet and I couldn't understand what was wrong.  What was wrong was

that I was actually normal!  The main reason the symptoms lasted as long as they

did was that I NEVER took antibiotics because they hurt my stomach so badly, but

around age 27 I did finish several rounds desperate to get rid of mycoplasma

pneumonia.  Now I CAN treat w/antibiotics as long as I get enough Diflucan to go

with it, but that is very hard to come by so technically I'm still not getting

enough treatment.  Now that I've been off antiobitics, my ASO shot right back to

1100 a few months ago, and I feel it climbing higher than that now.  Anyway, I

think strep can trigger anxiety and mild almost unnoticable ocd-like symptoms in

even normal people - I've witnessed it - but it just goes away and isn't as

intense,

because their immune reactions aren't as intense. 

Re finishing the antibiotics - yup, I'd finish them.  But Omnicef wrecked my

brain too! lol.   So that's a last resort med now - only after lower spectrum

longer periods have not helped.  But all in all, you don't want a chronic

bacterial infection hanging around while you try a few other antibiotics either,

so you're cursed if you do and cursed if you don't.  Just ride it out and it

should ease up soon enough.  What about at other times .. is he not on a

long-term one too?  (I found erythromycin irrirated me too , and I'm allergic

to sufa so I can't do ery-ped.  I manage ok w/doxycycline - that brings me

miracles in combo w/diflucan ... but your son's not old enough for it yet I

don't think.  Minocycline was very dissappointing.

You MUST keep on with the antivirals.  They are very unlikely to trigger it, but

if they do, they're worth it.  Never miss a single day, and try to never miss a

single dose.  They're the most important thing you can do!  Who knows if

another one will bring better results - Dr may cycle them later

depending on labs - but this isn't something you do early on.  As far as

antifungals go, Nizoral was AWESOME!  So when your year is up w/Diflucan, you

might have that to look forward to.  Being a boy, and it increasing hormones

like testosterone @ puberty may be good or bad - I don't know.

I've never taken risperdol.  It would make me crazy.  Just about any stimulant

does.  No one would be able to be around me! lol  I am unable to take SSRIs too

(so far - I'll try again after other things are stabilized), but I loved Effexor

XR until I got acute gastritis - now it triggers it every time.   Motrin hurts

my stomach so I do tylenol.  I've never had the priveledge of trying antivirals,

but I'll let you know when I do. 

Re pee accidents ... um... shhhh.... yup.  When my ASO goes up (or if I've had

mycoplasma pne.), I lose the sensation of needing to go, and frequency

increases, and capacity of the bladder to hold it goes down.  I just wear a

liner and laugh if I cough, and otherwise carry a timer around to go every 30min

to an hour (depending on how bad it is) so that I don't have accidents.  Haven't

had that one in about a year, even though my ASO is right back up to where it

was, so I'm not really sure what that's all about.  But there is a hormone

affected that controls the urinary function (in PANDAS and in and other

things), but this is more of a symptom to manage than a major crisis, and it

will/should go away.  Just develop some potty humor.

I'm not as prone to tics this last attack, but recently I did have the eye

twitch a few times.  I also tend to want to leap into the air (gross motor). 

Restless leg may kick in at some point too.  Most of all, I get songs going in

my head - the more the merrier.  (I had a song stuck in my head for 15 years -

lucky me I loved the song.)  Or some phrase will go 'round and 'round ... that

one can drive me nuts.  The music is welcome, the phrases are not.  When I was

late-teens early twenties, the tics were awful but they were such gross-motor

(leaping ballet and squeaks and squeals) that I didn't know they were tics until

much later, and I met a little boy w/Tourette's at the park, and he was doing

the same thing.

You know, in my teens, I didn't know what was wrong with me, and I had no access

to medical care, and I can keep strep infections for years.  I think your son

will do a lot better, so when you hear me talking about teens and adulthood and

wonder if it's going to last that long, I simply don't know, but I seriously

doubt it. I'd guess you're going to deal with this two years before it's

all gone (not all the same severity), but THEN, maybe it won't be as likely to

get re-triggered (with good and lasting care). Because you'll never miss a

smoldering infection again - he has had plenty that no one knew about I'd

bet.  But I found a lot of humor in my problems, and I hope you will try to find

some with your son - when you suffer neurological disorders, you can really

develop a fascination about how the mind and body works.  The better accepting

you are about them, the more relaxed he'll be when people are asking him why he

does that.  I'd giggle

and say I don't know, and I was one WIERD duck, but I was loved anyway.  I saw a

show about boys with Tourette's, and they were just awesome cool kids.   What I

was like as a kid (I bet I seemed pretty hopeless) isn't the same as an adult. 

You guys need to experience it as an event to be fascinated by (albeit

frustrated and often miserable) and live playfully in spite of it.

HTH-

[Guest guest]

Kristy, I really don't know. I remember Dr G mentioning it once to

take it out of his diet. And so we did, and now when he does get it,

he seems irritable 2-3 days later. There are so many things going

on, but my gut says I can tie it back to cinnamon. Weird, huh?

> >

> > From: <thecolemans4@>

> > Subject: Re: outbursts for unknown reasons

> > <mailto:%40>

> > Date: Monday, July 7, 2008, 10:24 PM

> >

> >

> >

> >

> >

> >

> > Hey Vicki -

> > I have PANDAS (I'm about to be 39), and I've been struggling

> (untreated most of the time except random antibiotics and some

> occasional Diflucan) since about 2002 with this last episode

> (probably my 4th, and they tend to last about 3-5 years untreated

for

> me). While I don't have tantrums (that'd be a problem for a grown

> woman but could be fun I guess!), I can definitely say that ANY

> bacterial infection can set it off. For certain, mycoplasma

> pneumonia sets it off about 1/2 of the severity of strep. Also,

> cerrtain probiotics do - Culturelle, anything with l.Rhamusus in

it.

> So do use probiotics, but use only acidophilus, or best of all (the

> least likely to trigger mine) is Kyodophilus. But I do tend cut

back

> on all probiotics unfortunately when my PANDAS really really

> peaks ... but that could just be that I'm suspecting it for no

> reason - I get paranoid about all foods when my OCD peaks. (My ocd

> manifests in rhuminations, a strong urge to

> > gather wood, and food contamination anxiety, intense generalized

&

> social anxiety, and a complete inability to remember anything or

> focus on anything).

> > Even more than the ear infection, if he took zythromycin (ie Z-

> pack), that could really really set it off even more. While that's

a

> fine antibiotic for tackling the infection, in my experience it

will

> aggrevate the symptoms for a while - although it does bring my ASO

> down which in the big picture isn't all bad. I don't know why it

> aggrevates it, but it does. I still use it for my boys if Cefzil

> isn't doing the job, but it WILL make my oldest quite irritable for

a

> few days. I always always wash off the pink dye - it's the med

> itself.

> > I would recommend a journal, if only so that you feel you are

doing

> something to find the triggers. But honestly, an infection can

> trigger it and for some time, there's little you can do about it

than

> avoid known triggers, until the protocol has time (like... a year)

to

> really cool down the over-reactive immune system. My boys would

both

> get OCD 3 days prior to strep when they were little, which

> fortunately went away once treated, but as they have gotten older,

> they react like normal kids to strep lately.

> > How long was/is he on antibiotics? Which one? Did you notice

> outbursts starting at 3-5 day mark of the antibiotic? That is when

I

> feel the peak if it is setting me off. (That does not mean I'm

going

> to stop the antibiotic though - sometimes you just have to ride it

> out.) BTW - Diflucan is a miracle for my PANDAS. The antibiotics

> never help as much alone as they do in combo w/Diflucan. I would

not

> really worry about that one, but I would make sure you're not using

> the hot-pink one. Usually the generics are a salmon or light pink,

> and they aren't usually as bad. If Valtrex could trigger it, too

> bad - it's too important, but I don't really think it would - as

long

> as you're washing off the blue dye.

> > Just try to make it through these outbursts and stay in touch

with

> the doc. Sometimes as you're making strides in one area, you take

> steps back in other areas. I change " One Day at a Time " to " 15

> minutes at a time " when I'm going through periods like that.

> > HTH-

> >

> >

> > outbursts for unknown reasons

> >

> > How do you figure out what is causing outursts? My son is very

> inconsistent and it has always been a problem. He has PANDAS and is

> finally i believe getting the right treatment plan by being on the

> protocol.

> > He started on valtrex and for a week he was amazing. Then he kind

> of plateaued. He started diflucan and he was even more amazing.

After

> 2 weeks he starts with the outbursts and turns out he has a double

> ear infection. He starts antibiotics, he's better, then he's

freaking

> out with the outbursts again. All along he still has high ASO strep

> titers.

> > How do you figure out the cause. Is the diflucan causing a die

off

> and the antibiotic is making it worse? Or is the PANDAS set off

> because of the ear infection.

> > The outbursts are like major temper tantrums, they do look

anxiety

> and internally related initially then he lashes out and gets worked

> up and even aggressive. They stop in about 10-15 minutes and he

acts

> totally fine like it never happened. Those 15 minutes are very very

> upsetting!!!

> >

> > Any parents want to give me some insight or thoughts about

> what might be going on. Through it all he has made more noticeable

> progress in the past 3 months on then any other time. I just

> wish I understood what is driving the outbursts.

> > Vicki

> >

> >