Re: PANDAS - anyone have a subsequent flair up triggered by a cold?

[Guest guest]

Hi ,

We do not have experience with PANDAS so I can't help you there. I

did find with a cold ours could be worse, mostly because of

contamination issues, blowing his nose specifically being a problem.

General fatigue caused by cold or other usually also contributed to

flare ups.

I'm sure others who deal with this will have input. I'm still

unclear about the strep connection and how it is handled. Ours is a

carrier, but has never had strep throat. Do you treat every strep

flare up with antibiotics and does it stop the OCD?

I'm sure you must already know that the OCD comes in waves on its own

without strep. I'm sorry I am not remembering does your son have

tics in general or just with the strep?

Hope this round is not worse, or necessarily strep related,

perhaps " just " a wave coming through.... I remember well how awful

it can get.

Hang in there.

Barb

>

> Well, I was enjoying " lurking " here the past few weeks while my son

> enjoyed some normal time. I'd about convinced myself that what we

> experienced in Oct/Nov was PANDAS. (2 strep infections this fall,

two

> episodes of tics and OCD behavior, followed by normal, really

> pleasant times).

>

> Last Thursday & Fri, my son stayed home with a cold. Not a biggie,

> just kept him home as a precaution. Over the weekend, the cold

> started to get better and now he's just a little stuffy. But last

> night he twitched a little bit. He brought it to our attention, but

> we thought maybe he was just faking it, after enjoying 4 days home.

> His throat wasn't sore or red.

>

> This evening, he started twitching again and there was a slight,

> recognizable change in his behavior. Like the way the sky looks

> before a thunderstorm - you see it coming. Saw some minor OCD

> behaviors reappear too. At bedtime, he was a wreck, begging for

> someone to sleep next to him for the night. Very afraid of being

> alone.

>

> I think I've heard some of you say that subsequent flair ups didn't

> have to be triggered by strep. That the stress of other illness

could

> be a trigger once PANDAS had been " turned on " . But as cold? Or is

it

> worth the $60 to for a rapid strep test? Also, should I be bracing

> myself? Does each episode get worse? Oh, I'm so not ready for

this...

>

> Thanks for any insight...

>

>

[Guest guest]

Hi ,

My daughter has PANDAS.  Certain viruses cause big flair ups for her, too (but

so far - only ones that cause a fever). Some parents also claim that yeast

overgrowth is a big trigger (we haven't experienced this).   Separation anxiety,

tics, ocd and night time troubles are common symptoms with PANDAS, but not

diagnostic by themselves.  Does your son experience any urinary urgency with

these episodes - meaning needing to pee every minute or so even though his

bladder is empty?  This is another hallmark symptom.  One thing I would say

about strep tests, though, is that if possible, I'd do 72 hour cultured test,

too.  I've spoken to several parents who have said their kids test negative on

the rapid, but positive 72 hours later with the cultured test (also, some people

say that they have to specifically have to request the full 72 hours - some labs

short change the test and report after 48 hours, or less). If your pediatrician

suspects PANDAS

(if they know about it) they probably will want to draw blood and check the

titer levels - which may confirm a strep infection as well. It might be helpful

to keep a calender of when his is sick, and how he behaves and see what pattern

emerges. 

Take care,

Peggy

Subject: Re: PANDAS - anyone have a subsequent flair up

triggered by a cold?

To:

Date: Monday, December 15, 2008, 6:33 PM

Hi ,

We do not have experience with PANDAS so I can't help you there. I

did find with a cold ours could be worse, mostly because of

contamination issues, blowing his nose specifically being a problem.

General fatigue caused by cold or other usually also contributed to

flare ups.

I'm sure others who deal with this will have input. I'm still

unclear about the strep connection and how it is handled. Ours is a

carrier, but has never had strep throat. Do you treat every strep

flare up with antibiotics and does it stop the OCD?

I'm sure you must already know that the OCD comes in waves on its own

without strep. I'm sorry I am not remembering does your son have

tics in general or just with the strep?

Hope this round is not worse, or necessarily strep related,

perhaps " just " a wave coming through.... I remember well how awful

it can get.

Hang in there.

Barb

>

> Well, I was enjoying " lurking " here the past few weeks while my son

> enjoyed some normal time. I'd about convinced myself that what we

> experienced in Oct/Nov was PANDAS. (2 strep infections this fall,

two

> episodes of tics and OCD behavior, followed by normal, really

> pleasant times).

>

> Last Thursday & Fri, my son stayed home with a cold. Not a biggie,

> just kept him home as a precaution. Over the weekend, the cold

> started to get better and now he's just a little stuffy. But last

> night he twitched a little bit. He brought it to our attention, but

> we thought maybe he was just faking it, after enjoying 4 days home.

> His throat wasn't sore or red.

>

> This evening, he started twitching again and there was a slight,

> recognizable change in his behavior. Like the way the sky looks

> before a thunderstorm - you see it coming. Saw some minor OCD

> behaviors reappear too. At bedtime, he was a wreck, begging for

> someone to sleep next to him for the night. Very afraid of being

> alone.

>

> I think I've heard some of you say that subsequent flair ups didn't

> have to be triggered by strep. That the stress of other illness

could

> be a trigger once PANDAS had been " turned on " . But as cold? Or is

it

> worth the $60 to for a rapid strep test? Also, should I be bracing

> myself? Does each episode get worse? Oh, I'm so not ready for

this...

>

> Thanks for any insight...

>

>

[Guest guest]

Our son tested negative for PANDAS, so not sure about how that might

factor in for your son. But, wanted to say that like Barb's son, our

son reacted to any upset to his system. His OCD would flare, then

eventually settle back down after he was well, usually a week or so

later. Even colds would set him off. Any little blip in his life

seemed to get things stirred up. He's been well for a while now

though (fingers crossed). This time of year is a hard time, with all

the crud that gets passed around.

So sorry things have taken a turn for the worst, . Even without

sickness there is the potential for it, due to the waxing and waning

of it all. It's always rough when things flare back up.

BJ

>

> Well, I was enjoying " lurking " here the past few weeks while my son

> enjoyed some normal time. I'd about convinced myself that what we

> experienced in Oct/Nov was PANDAS. (2 strep infections this fall, two

> episodes of tics and OCD behavior, followed by normal, really

> pleasant times).

>

> Last Thursday & Fri, my son stayed home with a cold. Not a biggie,

> just kept him home as a precaution. Over the weekend, the cold

> started to get better and now he's just a little stuffy. But last

> night he twitched a little bit. He brought it to our attention, but

> we thought maybe he was just faking it, after enjoying 4 days home.

> His throat wasn't sore or red.

>

> This evening, he started twitching again and there was a slight,

> recognizable change in his behavior. Like the way the sky looks

> before a thunderstorm - you see it coming. Saw some minor OCD

> behaviors reappear too. At bedtime, he was a wreck, begging for

> someone to sleep next to him for the night. Very afraid of being

> alone.

>

> I think I've heard some of you say that subsequent flair ups didn't

> have to be triggered by strep. That the stress of other illness could

> be a trigger once PANDAS had been " turned on " . But as cold? Or is it

> worth the $60 to for a rapid strep test? Also, should I be bracing

> myself? Does each episode get worse? Oh, I'm so not ready for this...

>

> Thanks for any insight...

>

>

[Guest guest]

Hi all,

Just got back from the CVS minute clinic (we're unhappy with our

pediatrician and have an appt with a new one next week, so we're

between doctors). The rapid strep test was negative but his glands are

swollen. The doctor was unfamiliar with PANDAS but was very sympathetic

when I explained what we've been through the past 4 months.

For those who've asked - his tic has only shown up with strep. He

doesn't twitch when healthy. He gets very emotional, temper flair ups,

this OCD thing where he has to cross his fingers because it feels

right - all only after strep. Blair syndrome - after strep. I can

tell you the day on the calendar when each episode has started. My son

had strep in Sept, again end of Oct, now a cold but maybe something

more. Yet the current pediatrican refuses to consider PANDAS because

the twitch has come a few days before a positive strep test (this makes

no sense to me - I think he was just refusing to consider PANDAS under

any circumstances). He prescribed Respiradol. The neurologist just

wanted to treat the twitch and could care less about any OCD, so he

went on about dopamine being the problem, not seratonin. He wanted to

prescribe Haldol. Neither wanted to do a titer test. I started to feel

that the doctors were crazier than my son : ) Thus...a new doctor next

week.

We were going to do a 24 hr culture (that's all they do at CVS, no 72

hr test avail). But afer talking further, the doctor felt something

might be brewing and given the hell we go through after strep, she felt

no harm would come from antibiotics. So thankfully, some angel looked

out for us and sent us home with Augmentin.

It really is like living in the dark ages when it comes to mental

health. I feel like people will look back 100 yrs from now and shudder

at what we put our kids thru today. Just like we shake our heads at the

lobotomies and shock therapies of 50 years ago.

Thanks all of you for being here. At least I no longer have to face tis

alone.

[Guest guest]

" It really is like living in the dark ages when it comes to mental

health. I feel like people will look back 100 yrs from now and shudder

at what we put our kids thru today. Just like we shake our heads at the

lobotomies and shock therapies of 50 years ago. "

Oh, you say a mouthful there ! So many times I felt the same way,

and I was dealing with a team of doctors at our specialized mental

health hospital! So much is not yet understood about OCD in particular

I find. Thank God for all the wonderful people here who actively seak

alternatives, information, have access to experienced doctors, and are

willing to share their personal challenges so we can all learn and

figure out how the heck to navigate this horrendously challenging

disorder.

You are indeed not alone in this challenge!!! Do let us know how it

all resolves. Glad you got the antibiotic and hope it turns around

quickly. I have no experience with this, but if an antibiotic would

have turned around one of our sons severe episodes I think I might have

threated harm to a doctor that withheld it. Think I scared a few

doctors with my anger and unwillingness to accept vague answers...that

Mother bear instinct can be pretty strong. Unfortunately often

backfires and then they see you as the problem(which, when you have a

teen is a given)...but if we don't fight for our kids care who will???

Hang in there and I send you HUGS!!!

Barb

>

> Thanks all of you for being here. At least I no longer have to face

tis

> alone.

>

>

>