Re: Tonsillectomy for Pandas

[Guest guest]

Hi

My 9 year old has pandas/pitands and autism. He was diagnosed with pandas at

age 7. He does respond to antibiotics even when he has just a virus. I asked my

doctors if removing Jake's tonsils or addenoids would help him and I was told

no. Those doctors were not really specialists though. Have you looked into ivig

treatments. My DAN believes that these are the best approaches for severe pandas

problems.

swriter20022002 <swriter20022002@...> wrote:

Hi all,

I was wondering if anyone has a child with Pandas who had a

tonsillectomy and was it beneficial?

My son is 7 yo with Pdd and Pandas (which is more of an issue

than the Pdd is). He is scheduled for a tonsillectomy on Wednesday

for recurrent strep infections resistent to all antibiotics, OLE, and

Laurciden.

Two weeks after the tonsillectomy, he is supposed to start on

Prozac for his Pandas tics and OCD symptoms. Would I be better off

waiting a couple of months to see if the Pandas symptoms go away

without medicine. is not functioning. He is in 1st grade and

can't even print his name. Would it take too long for the symptoms to

go away on their own? Any input is appreciated.

Thanks,

Sue

---------------------------------

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[Guest guest]

> Hi all,

>

> I was wondering if anyone has a child with Pandas who had a

> tonsillectomy and was it beneficial?

>

> My son is 7 yo with Pdd and Pandas (which is more of an issue

> than the Pdd is). He is scheduled for a tonsillectomy on Wednesday

> for recurrent strep infections resistent to all antibiotics, OLE, and

> Laurciden.

>

> Two weeks after the tonsillectomy, he is supposed to start on

> Prozac for his Pandas tics and OCD symptoms. Would I be better off

> waiting a couple of months to see if the Pandas symptoms go away

> without medicine. is not functioning. He is in 1st grade and

> can't even print his name. Would it take too long for the symptoms to

> go away on their own? Any input is appreciated.

>

> Thanks,

> Sue

>

>

>

>

>

>

> ---------------------------------

> Be a better friend, newshound, and know-it-all with Mobile.

Try it now.

>

>

[Guest guest]

I can only relate my personal experience and see if it might help. I

had many, many strep infections as a child. In my twenties, the strep

infections were one right after another. 3-4 weeks after finishing a

10 day course of antibiotics I was back at the doctor's with another

case of strep. Finally, I was referred to an ENT and he recommended I

have my tonsils removed. I didn't have another sore throat for more

than 10 years after were removed until recently. My ASO titres were

almost 2,000. A three month course of antibiotics resulted in titres

around 1000. The strep throats started again along with lots of

fatigue, dizziness, muscle and joint pain, etc., so my gen

practitioner referred me to a rheumatologist, who noticed my tonsils

had partially grown back.

For me, having my tonsils out resulted in about 10 years of no strep

symptoms whatsoever.

HTH,

Robyn

p.s. Even though I had no visible signs of strep for those 10 years,

I don't know what my ASO titres were. I only have data on that for

the last year.

[Guest guest]

I know a little girl who had (has) continuous strep. She had her tonsils

removed and it didn't alleviate the problem at all. Now the strep lives in her

nose instead of her tonsils! I know that there are those whom this surgery has

helped, but I wouldn't consider it a cure. I'd recommend proceeding with the

PANDAS treatment even with the surgery. Of course more importantly, you're the

mom and you've just got to go with your gut.

I wish you the best

April

Re: Tonsillectomy for Pandas

I can only relate my personal experience and see if it might help. I

had many, many strep infections as a child. In my twenties, the strep

infections were one right after another. 3-4 weeks after finishing a

10 day course of antibiotics I was back at the doctor's with another

case of strep. Finally, I was referred to an ENT and he recommended I

have my tonsils removed. I didn't have another sore throat for more

than 10 years after were removed until recently. My ASO titres were

almost 2,000. A three month course of antibiotics resulted in titres

around 1000. The strep throats started again along with lots of

fatigue, dizziness, muscle and joint pain, etc., so my gen

practitioner referred me to a rheumatologist, who noticed my tonsils

had partially grown back.

For me, having my tonsils out resulted in about 10 years of no strep

symptoms whatsoever.

HTH,

Robyn

p.s. Even though I had no visible signs of strep for those 10 years,

I don't know what my ASO titres were. I only have data on that for

the last year.

[Guest guest]

Hi,

My son also had his tonsils out for strept/PANDAS two years ago. The PANDAS just

came back this past December along with strept. We are considering IVIG as a

last resort. Our son is doing beautifully but when the strept returned so did

the old behaviors. OCD off the wall, odd movements, hyperactivity ect..

@...: april@...: Tue, 5 Feb 2008 16:42:09

-0600Subject: Re: Re: Tonsillectomy for Pandas

I know a little girl who had (has) continuous strep. She had her tonsils removed

and it didn't alleviate the problem at all. Now the strep lives in her nose

instead of her tonsils! I know that there are those whom this surgery has

helped, but I wouldn't consider it a cure. I'd recommend proceeding with the

PANDAS treatment even with the surgery. Of course more importantly, you're the

mom and you've just got to go with your gut.I wish you the bestApril-----

Original Message ----- From: Robyn Sent: Tuesday,

February 05, 2008 12:00 PMSubject: Re: Tonsillectomy for PandasI can only

relate my personal experience and see if it might help. I had many, many strep

infections as a child. In my twenties, the strep infections were one right after

another. 3-4 weeks after finishing a 10 day course of antibiotics I was back at

the doctor's with another case of strep. Finally, I was referred to an ENT and

he recommended I have my tonsils removed. I didn't have another sore throat for

more than 10 years after were removed until recently. My ASO titres were almost

2,000. A three month course of antibiotics resulted in titres around 1000. The

strep throats started again along with lots of fatigue, dizziness, muscle and

joint pain, etc., so my gen practitioner referred me to a rheumatologist, who

noticed my tonsils had partially grown back.For me, having my tonsils out

resulted in about 10 years of no strep symptoms whatsoever. HTH,Robynp.s. Even

though I had no visible signs of strep for those 10 years, I don't know what my

ASO titres were. I only have data on that for the last year.[Non-text portions

of this message have been removed]

[Guest guest]

I never had mine removed. I had another PANDAS

episode in my mid-thirties, but it would not have

happened if the docs had not labeled me a carrier and

if it had not been extremely difficult to get

sufficient treatment for the first year.

But all in all I have been able to recover without

treatment. Really, time is a big factor. There isn't

a quick fix, and even with treatment, you're likely

looking at 2 years of symptoms. You can have BIG

improvements during that time, and it can wax and

wane.

Then, when tonsils are removed, you can still get

chronic mycoplasma pneumonia and other chronic

bacterias, and they also affect PANDAS on a lower

level. That's not documented, it's just experience,

and many others have had it too.

One mom here regretted waiting so long to have her

son's out, because it helped her son tremendously.

All in all I'd do whatever else could be done for a

couple of years prior to removing them, ie long-term

ery-ped and IMGG if needed. Watch certain probiotics

too - lactobacillus and l.rhamuses (aka Culturelle)

can worsen it. Acidophilus and Kyodophilus tend to be

ok. Also, treating w/antibiotics AND antifungals

makes a HUGE difference in treating my PANDAS.

Neither alone does near what the combo does.

HTH-

--- April Jagnow <april@...> wrote:

> I know a little girl who had (has) continuous strep.

> She had her tonsils removed and it didn't alleviate

> the problem at all. Now the strep lives in her nose

> instead of her tonsils! I know that there are those

> whom this surgery has helped, but I wouldn't

> consider it a cure. I'd recommend proceeding with

> the PANDAS treatment even with the surgery. Of

> course more importantly, you're the mom and you've

> just got to go with your gut.

>

> I wish you the best

> April

>

>

> Re: Tonsillectomy for Pandas

>

>

> I can only relate my personal experience and see

> if it might help. I

> had many, many strep infections as a child. In my

> twenties, the strep

> infections were one right after another. 3-4 weeks

> after finishing a

> 10 day course of antibiotics I was back at the

> doctor's with another

> case of strep. Finally, I was referred to an ENT

> and he recommended I

> have my tonsils removed. I didn't have another

> sore throat for more

> than 10 years after were removed until recently.

> My ASO titres were

> almost 2,000. A three month course of antibiotics

> resulted in titres

> around 1000. The strep throats started again along

> with lots of

> fatigue, dizziness, muscle and joint pain, etc.,

> so my gen

> practitioner referred me to a rheumatologist, who

> noticed my tonsils

> had partially grown back.

>

> For me, having my tonsils out resulted in about 10

> years of no strep

> symptoms whatsoever.

>

> HTH,

>

> Robyn

>

> p.s. Even though I had no visible signs of strep

> for those 10 years,

> I don't know what my ASO titres were. I only have

> data on that for

> the last year.

>

>

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

________________________________________________________________________________\

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[Guest guest]

That's not a bad plan. Is he also continuing some

antibiotics or monitoring the ASO titer? (We actually

support IMGG - intramuscular - instead of IVIG but

that's becoming harder to get lately.) SSRIs do

impact the immune system.

HTH-

--- swriter20022002 <swriter20022002@...> wrote:

>

> > Hi all,

> >

> > I was wondering if anyone has a child with Pandas

> who had a

> > tonsillectomy and was it beneficial?

> >

> > My son is 7 yo with Pdd and Pandas (which is more

> of an issue

> > than the Pdd is). He is scheduled for a

> tonsillectomy on Wednesday

> > for recurrent strep infections resistent to all

> antibiotics, OLE, and

> > Laurciden.

> >

> > Two weeks after the tonsillectomy, he is supposed

> to start on

> > Prozac for his Pandas tics and OCD symptoms. Would

> I be better off

> > waiting a couple of months to see if the Pandas

> symptoms go away

> > without medicine. is not functioning. He

> is in 1st grade and

> > can't even print his name. Would it take too long

> for the symptoms to

> > go away on their own? Any input is appreciated.

> >

> > Thanks,

> > Sue

> >

> >

> >

> >

> >

> >

> > ---------------------------------

> > Be a better friend, newshound, and know-it-all

> with Mobile.

> Try it now.

> >

> > [Non-text portions of this message have been

> removed]

> >

>

>

>

________________________________________________________________________________\

____

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[Guest guest]

Sue,

I guess by now your son has had the surgery. I hope he's recovering well.

I second the person who said it took every minute of the recovery time

prescribed to recover... it's worth it to get up in the middle of the night

every night until then to give those pain killers!

One of our boys (now age 12) has still had definite strep related symptoms

(years after surgery)... he had his tonsils and adenoids removed when he was

about 4. At the time, nobody thought to check him for strep. He had the

surgery because of severe sleep apnea that made us fear for his life.

I was hoping that his surgery would improve some of his " behaviors " and it

did... a little. I think that was mostly due to the fact that he was

getting a lovely night of sleep instead of the horrific struggling sleep he

had been experiencing.

When he started with Dr. G (at age 6), Dr. G started monitoring his ASO

levels and they were high, but not at through the roof high levels. He got

to a point in grade 2 (age 7) where he was completely spaced out in class...

couldn't follow the teacher at all and was just marching to his own beat.

It was so severe that I voluntarily pulled him out of school (he was in a

gifted class and I was worried because he was distracting the class- and the

teacher was 9 months pregnant and at her wits' end). We called Dr. G and he

immediately put my son on Erythromycin. The Erythromycin upset his stomach,

but even as he was lying in bed with miserable nausea, we could see that he

was much more focused again. Dr. G switched him to ERYPed (a more stomach

friendly form of Erythromycin) and he was able to go back to school the last

day his teacher taught before taking maternity leave. She called me in the

middle of the day to say that his improvement was miraculous... he was

totally back on track.

So, here's my point. The surgery for us was probably treating a symptom

rather than the cause of my son's strep, which is a dysfunctional immune

system. He just doesn't have the ability to fight strep well on his own.

Then again, at the time it was all we knew to do. I often wonder if he had

underlying strep infection for years following the surgery.

I don't know that you had much of a choice about having the surgery

either... it sounds like you had your back up against the wall.

Regarding how my son (now 12) is now, he is still quite OCD so the surgery

didn't cure that. He is on SSRIs and they do benefit him.

I guess it might be helpful for you to see you son post op for at least

couple of weeks after he recovers so that you'll know where he started (have

a baseline) emotionally. I'm sure you're anxious to see if the SSRIs help

(I know I was), but really in the grand scheme of things, a couple of weeks

is not all that long, and it might give you a better idea of what the SSRIs

were doing for him.

Two more thoughts. If it were me, I would ask the Drs to monitor his ASO to

see if his titers go down. Strep can reside in places in the body other

than tonsils. My second thought is just to remind you that in the future,

since your son's tonsils are gone, you need to remember to remind Drs. Of

that when he's sick (they're looking for swollen tonsils that aren't there,

which can trick them).

I hope that helps.

Caroline

[Guest guest]

Hi, Caroline.

Your post to Sue was very interesting (Sue, I hope your son is doing well). My

oldest son was diagnosed with autistic tendencies and my middle son is

mild/moderate " A " word. Your son sounds much like my oldest and I'm wondering if

I should have him tested for ASO titers. His inattention and difficulty

concentrating at school seem to come and go. It's as if he has two different

kids inside of him. We just started our middle son with Dr. G and plan to start

our oldest with him soon. He did have scarlet fever last May, and I have had

really high strep titers (almost 2,000) for a year now. Maybe this is his

problem as well.

Thanks for the post.

Robyn

Caroline Glover <sfglover@...> wrote:

Sue,

I guess by now your son has had the surgery. I hope he's recovering well.

I second the person who said it took every minute of the recovery time

prescribed to recover... it's worth it to get up in the middle of the night

every night until then to give those pain killers!

One of our boys (now age 12) has still had definite strep related symptoms

(years after surgery)... he had his tonsils and adenoids removed when he was

about 4. At the time, nobody thought to check him for strep. He had the

surgery because of severe sleep apnea that made us fear for his life.

I was hoping that his surgery would improve some of his " behaviors " and it

did... a little. I think that was mostly due to the fact that he was

getting a lovely night of sleep instead of the horrific struggling sleep he

had been experiencing.

When he started with Dr. G (at age 6), Dr. G started monitoring his ASO

levels and they were high, but not at through the roof high levels. He got

to a point in grade 2 (age 7) where he was completely spaced out in class...

couldn't follow the teacher at all and was just marching to his own beat.

It was so severe that I voluntarily pulled him out of school (he was in a

gifted class and I was worried because he was distracting the class- and the

teacher was 9 months pregnant and at her wits' end). We called Dr. G and he

immediately put my son on Erythromycin. The Erythromycin upset his stomach,

but even as he was lying in bed with miserable nausea, we could see that he

was much more focused again. Dr. G switched him to ERYPed (a more stomach

friendly form of Erythromycin) and he was able to go back to school the last

day his teacher taught before taking maternity leave. She called me in the

middle of the day to say that his improvement was miraculous... he was

totally back on track.

So, here's my point. The surgery for us was probably treating a symptom

rather than the cause of my son's strep, which is a dysfunctional immune

system. He just doesn't have the ability to fight strep well on his own.

Then again, at the time it was all we knew to do. I often wonder if he had

underlying strep infection for years following the surgery.

I don't know that you had much of a choice about having the surgery

either... it sounds like you had your back up against the wall.

Regarding how my son (now 12) is now, he is still quite OCD so the surgery

didn't cure that. He is on SSRIs and they do benefit him.

I guess it might be helpful for you to see you son post op for at least

couple of weeks after he recovers so that you'll know where he started (have

a baseline) emotionally. I'm sure you're anxious to see if the SSRIs help

(I know I was), but really in the grand scheme of things, a couple of weeks

is not all that long, and it might give you a better idea of what the SSRIs

were doing for him.

Two more thoughts. If it were me, I would ask the Drs to monitor his ASO to

see if his titers go down. Strep can reside in places in the body other

than tonsils. My second thought is just to remind you that in the future,

since your son's tonsils are gone, you need to remember to remind Drs. Of

that when he's sick (they're looking for swollen tonsils that aren't there,

which can trick them).

I hope that helps.

Caroline

[Guest guest]

It's pretty routine for him to pull those at the first appointment so

if he's already had an appointment, you should get your results at

your next appointment. If you've already had your next appointment

and he didn't mention it then it's likely they came back normal but

you should talk about it just incase.

Cheryl

On Feb 8, 2008, at 11:34 AM, Robyn & Greg Coggins wrote:

> Hi, Caroline.

>

> Your post to Sue was very interesting (Sue, I hope your son is

> doing well). My oldest son was diagnosed with autistic tendencies

> and my middle son is mild/moderate " A " word. Your son sounds much

> like my oldest and I'm wondering if I should have him tested for

> ASO titers. His inattention and difficulty concentrating at school

> seem to come and go. It's as if he has two different kids inside of

> him. We just started our middle son with Dr. G and plan to start

> our oldest with him soon. He did have scarlet fever last May, and I

> have had really high strep titers (almost 2,000) for a year now.

> Maybe this is his problem as well.

>

> Thanks for the post.

>

> Robyn

>

> Caroline Glover <sfglover@...> wrote:

> Sue,

>

> I guess by now your son has had the surgery. I hope he's recovering

> well.

> I second the person who said it took every minute of the recovery time

> prescribed to recover... it's worth it to get up in the middle of

> the night

> every night until then to give those pain killers!

>

> One of our boys (now age 12) has still had definite strep related

> symptoms

> (years after surgery)... he had his tonsils and adenoids removed

> when he was

> about 4. At the time, nobody thought to check him for strep. He had

> the

> surgery because of severe sleep apnea that made us fear for his life.

>

> I was hoping that his surgery would improve some of his " behaviors "

> and it

> did... a little. I think that was mostly due to the fact that he was

> getting a lovely night of sleep instead of the horrific struggling

> sleep he

> had been experiencing.

>

> When he started with Dr. G (at age 6), Dr. G started monitoring his

> ASO

> levels and they were high, but not at through the roof high levels.

> He got

> to a point in grade 2 (age 7) where he was completely spaced out in

> class...

> couldn't follow the teacher at all and was just marching to his own

> beat.

> It was so severe that I voluntarily pulled him out of school (he

> was in a

> gifted class and I was worried because he was distracting the

> class- and the

> teacher was 9 months pregnant and at her wits' end). We called Dr.

> G and he

> immediately put my son on Erythromycin. The Erythromycin upset his

> stomach,

> but even as he was lying in bed with miserable nausea, we could see

> that he

> was much more focused again. Dr. G switched him to ERYPed (a more

> stomach

> friendly form of Erythromycin) and he was able to go back to school

> the last

> day his teacher taught before taking maternity leave. She called me

> in the

> middle of the day to say that his improvement was miraculous... he was

> totally back on track.

>

> So, here's my point. The surgery for us was probably treating a

> symptom

> rather than the cause of my son's strep, which is a dysfunctional

> immune

> system. He just doesn't have the ability to fight strep well on his

> own.

> Then again, at the time it was all we knew to do. I often wonder if

> he had

> underlying strep infection for years following the surgery.

>

> I don't know that you had much of a choice about having the surgery

> either... it sounds like you had your back up against the wall.

>

> Regarding how my son (now 12) is now, he is still quite OCD so the

> surgery

> didn't cure that. He is on SSRIs and they do benefit him.

>

> I guess it might be helpful for you to see you son post op for at

> least

> couple of weeks after he recovers so that you'll know where he

> started (have

> a baseline) emotionally. I'm sure you're anxious to see if the

> SSRIs help

> (I know I was), but really in the grand scheme of things, a couple

> of weeks

> is not all that long, and it might give you a better idea of what

> the SSRIs

> were doing for him.

>

> Two more thoughts. If it were me, I would ask the Drs to monitor

> his ASO to

> see if his titers go down. Strep can reside in places in the body

> other

> than tonsils. My second thought is just to remind you that in the

> future,

> since your son's tonsils are gone, you need to remember to remind

> Drs. Of

> that when he's sick (they're looking for swollen tonsils that

> aren't there,

> which can trick them).

>

> I hope that helps.

>

> Caroline

>

>

[Guest guest]

Thanks, Cheryl. We have our second appointment on 2/20. I can't wait to hear

about the lab results!

Robyn

Cheryl Lowrance <c.lowrance@...> wrote:

It's pretty routine for him to pull those at the first appointment so

if he's already had an appointment, you should get your results at

your next appointment. If you've already had your next appointment

and he didn't mention it then it's likely they came back normal but

you should talk about it just incase.

Cheryl

On Feb 8, 2008, at 11:34 AM, Robyn & Greg Coggins wrote:

> Hi, Caroline.

>

> Your post to Sue was very interesting (Sue, I hope your son is

> doing well). My oldest son was diagnosed with autistic tendencies

> and my middle son is mild/moderate " A " word. Your son sounds much

> like my oldest and I'm wondering if I should have him tested for

> ASO titers. His inattention and difficulty concentrating at school

> seem to come and go. It's as if he has two different kids inside of

> him. We just started our middle son with Dr. G and plan to start

> our oldest with him soon. He did have scarlet fever last May, and I

> have had really high strep titers (almost 2,000) for a year now.

> Maybe this is his problem as well.

>

> Thanks for the post.

>

> Robyn

>

> Caroline Glover <sfglover@...> wrote:

> Sue,

>

> I guess by now your son has had the surgery. I hope he's recovering

> well.

> I second the person who said it took every minute of the recovery time

> prescribed to recover... it's worth it to get up in the middle of

> the night

> every night until then to give those pain killers!

>

> One of our boys (now age 12) has still had definite strep related

> symptoms

> (years after surgery)... he had his tonsils and adenoids removed

> when he was

> about 4. At the time, nobody thought to check him for strep. He had

> the

> surgery because of severe sleep apnea that made us fear for his life.

>

> I was hoping that his surgery would improve some of his " behaviors "

> and it

> did... a little. I think that was mostly due to the fact that he was

> getting a lovely night of sleep instead of the horrific struggling

> sleep he

> had been experiencing.

>

> When he started with Dr. G (at age 6), Dr. G started monitoring his

> ASO

> levels and they were high, but not at through the roof high levels.

> He got

> to a point in grade 2 (age 7) where he was completely spaced out in

> class...

> couldn't follow the teacher at all and was just marching to his own

> beat.

> It was so severe that I voluntarily pulled him out of school (he

> was in a

> gifted class and I was worried because he was distracting the

> class- and the

> teacher was 9 months pregnant and at her wits' end). We called Dr.

> G and he

> immediately put my son on Erythromycin. The Erythromycin upset his

> stomach,

> but even as he was lying in bed with miserable nausea, we could see

> that he

> was much more focused again. Dr. G switched him to ERYPed (a more

> stomach

> friendly form of Erythromycin) and he was able to go back to school

> the last

> day his teacher taught before taking maternity leave. She called me

> in the

> middle of the day to say that his improvement was miraculous... he was

> totally back on track.

>

> So, here's my point. The surgery for us was probably treating a

> symptom

> rather than the cause of my son's strep, which is a dysfunctional

> immune

> system. He just doesn't have the ability to fight strep well on his

> own.

> Then again, at the time it was all we knew to do. I often wonder if

> he had

> underlying strep infection for years following the surgery.

>

> I don't know that you had much of a choice about having the surgery

> either... it sounds like you had your back up against the wall.

>

> Regarding how my son (now 12) is now, he is still quite OCD so the

> surgery

> didn't cure that. He is on SSRIs and they do benefit him.

>

> I guess it might be helpful for you to see you son post op for at

> least

> couple of weeks after he recovers so that you'll know where he

> started (have

> a baseline) emotionally. I'm sure you're anxious to see if the

> SSRIs help

> (I know I was), but really in the grand scheme of things, a couple

> of weeks

> is not all that long, and it might give you a better idea of what

> the SSRIs

> were doing for him.

>

> Two more thoughts. If it were me, I would ask the Drs to monitor

> his ASO to

> see if his titers go down. Strep can reside in places in the body

> other

> than tonsils. My second thought is just to remind you that in the

> future,

> since your son's tonsils are gone, you need to remember to remind

> Drs. Of

> that when he's sick (they're looking for swollen tonsils that

> aren't there,

> which can trick them).

>

> I hope that helps.

>

> Caroline

>

>

[Guest guest]

If you want, you can call the office and have them fax it to you so

you can look over it before you see him. This way you can ask

questions. I managed to get a copy of our labs because at that point

i was still going in practically weekly since my son had sick

appointments all the time. It was pretty easy for me to get the labs

since I was in there all the time. I don't know if they will fax it

but it's worth asking. If you wanted to go pick it up, I'm sure

they'd let you.

Cheryl

On Feb 8, 2008, at 4:25 PM, Robyn & Greg Coggins wrote:

> Thanks, Cheryl. We have our second appointment on 2/20. I can't

> wait to hear about the lab results!

>

> Robyn

>

> Cheryl Lowrance <c.lowrance@...> wrote:

> It's pretty routine for him to pull those at the first appointment so

> if he's already had an appointment, you should get your results at

> your next appointment. If you've already had your next appointment

> and he didn't mention it then it's likely they came back normal but

> you should talk about it just incase.

>

> Cheryl

>

> On Feb 8, 2008, at 11:34 AM, Robyn & Greg Coggins wrote:

>

> > Hi, Caroline.

> >

> > Your post to Sue was very interesting (Sue, I hope your son is

> > doing well). My oldest son was diagnosed with autistic tendencies

> > and my middle son is mild/moderate " A " word. Your son sounds much

> > like my oldest and I'm wondering if I should have him tested for

> > ASO titers. His inattention and difficulty concentrating at school

> > seem to come and go. It's as if he has two different kids inside of

> > him. We just started our middle son with Dr. G and plan to start

> > our oldest with him soon. He did have scarlet fever last May, and I

> > have had really high strep titers (almost 2,000) for a year now.

> > Maybe this is his problem as well.

> >

> > Thanks for the post.

> >

> > Robyn

> >

> > Caroline Glover <sfglover@...> wrote:

> > Sue,

> >

> > I guess by now your son has had the surgery. I hope he's recovering

> > well.

> > I second the person who said it took every minute of the recovery

> time

> > prescribed to recover... it's worth it to get up in the middle of

> > the night

> > every night until then to give those pain killers!

> >

> > One of our boys (now age 12) has still had definite strep related

> > symptoms

> > (years after surgery)... he had his tonsils and adenoids removed

> > when he was

> > about 4. At the time, nobody thought to check him for strep. He had

> > the

> > surgery because of severe sleep apnea that made us fear for his

> life.

> >

> > I was hoping that his surgery would improve some of his " behaviors "

> > and it

> > did... a little. I think that was mostly due to the fact that he was

> > getting a lovely night of sleep instead of the horrific struggling

> > sleep he

> > had been experiencing.

> >

> > When he started with Dr. G (at age 6), Dr. G started monitoring his

> > ASO

> > levels and they were high, but not at through the roof high levels.

> > He got

> > to a point in grade 2 (age 7) where he was completely spaced out in

> > class...

> > couldn't follow the teacher at all and was just marching to his own

> > beat.

> > It was so severe that I voluntarily pulled him out of school (he

> > was in a

> > gifted class and I was worried because he was distracting the

> > class- and the

> > teacher was 9 months pregnant and at her wits' end). We called Dr.

> > G and he

> > immediately put my son on Erythromycin. The Erythromycin upset his

> > stomach,

> > but even as he was lying in bed with miserable nausea, we could see

> > that he

> > was much more focused again. Dr. G switched him to ERYPed (a more

> > stomach

> > friendly form of Erythromycin) and he was able to go back to school

> > the last

> > day his teacher taught before taking maternity leave. She called me

> > in the

> > middle of the day to say that his improvement was miraculous...

> he was

> > totally back on track.

> >

> > So, here's my point. The surgery for us was probably treating a

> > symptom

> > rather than the cause of my son's strep, which is a dysfunctional

> > immune

> > system. He just doesn't have the ability to fight strep well on his

> > own.

> > Then again, at the time it was all we knew to do. I often wonder if

> > he had

> > underlying strep infection for years following the surgery.

> >

> > I don't know that you had much of a choice about having the surgery

> > either... it sounds like you had your back up against the wall.

> >

> > Regarding how my son (now 12) is now, he is still quite OCD so the

> > surgery

> > didn't cure that. He is on SSRIs and they do benefit him.

> >

> > I guess it might be helpful for you to see you son post op for at

> > least

> > couple of weeks after he recovers so that you'll know where he

> > started (have

> > a baseline) emotionally. I'm sure you're anxious to see if the

> > SSRIs help

> > (I know I was), but really in the grand scheme of things, a couple

> > of weeks

> > is not all that long, and it might give you a better idea of what

> > the SSRIs

> > were doing for him.

> >

> > Two more thoughts. If it were me, I would ask the Drs to monitor

> > his ASO to

> > see if his titers go down. Strep can reside in places in the body

> > other

> > than tonsils. My second thought is just to remind you that in the

> > future,

> > since your son's tonsils are gone, you need to remember to remind

> > Drs. Of

> > that when he's sick (they're looking for swollen tonsils that

> > aren't there,

> > which can trick them).

> >

> > I hope that helps.

> >

> > Caroline

> >

> >

[Guest guest]

That's a great idea, Cheryl. I'll call on Monday. I have to call anyway to get

an order for Noah's neurspect scan for insurance purposes and 's new

patient packet, so I'll request the labs as well. I always seem to have a

million questions AFTER I leave the office.

Have a great weekend!

Robyn

Cheryl Lowrance <c.lowrance@...> wrote:

If you want, you can call the office and have them fax it to you so

you can look over it before you see him. This way you can ask

questions. I managed to get a copy of our labs because at that point

i was still going in practically weekly since my son had sick

appointments all the time. It was pretty easy for me to get the labs

since I was in there all the time. I don't know if they will fax it

but it's worth asking. If you wanted to go pick it up, I'm sure

they'd let you.

Cheryl

On Feb 8, 2008, at 4:25 PM, Robyn & Greg Coggins wrote:

> Thanks, Cheryl. We have our second appointment on 2/20. I can't

> wait to hear about the lab results!

>

> Robyn

>

> Cheryl Lowrance <c.lowrance@...> wrote:

> It's pretty routine for him to pull those at the first appointment so

> if he's already had an appointment, you should get your results at

> your next appointment. If you've already had your next appointment

> and he didn't mention it then it's likely they came back normal but

> you should talk about it just incase.

>

> Cheryl

>

> On Feb 8, 2008, at 11:34 AM, Robyn & Greg Coggins wrote:

>

> > Hi, Caroline.

> >

> > Your post to Sue was very interesting (Sue, I hope your son is

> > doing well). My oldest son was diagnosed with autistic tendencies

> > and my middle son is mild/moderate " A " word. Your son sounds much

> > like my oldest and I'm wondering if I should have him tested for

> > ASO titers. His inattention and difficulty concentrating at school

> > seem to come and go. It's as if he has two different kids inside of

> > him. We just started our middle son with Dr. G and plan to start

> > our oldest with him soon. He did have scarlet fever last May, and I

> > have had really high strep titers (almost 2,000) for a year now.

> > Maybe this is his problem as well.

> >

> > Thanks for the post.

> >

> > Robyn

> >

> > Caroline Glover <sfglover@...> wrote:

> > Sue,

> >

> > I guess by now your son has had the surgery. I hope he's recovering

> > well.

> > I second the person who said it took every minute of the recovery

> time

> > prescribed to recover... it's worth it to get up in the middle of

> > the night

> > every night until then to give those pain killers!

> >

> > One of our boys (now age 12) has still had definite strep related

> > symptoms

> > (years after surgery)... he had his tonsils and adenoids removed

> > when he was

> > about 4. At the time, nobody thought to check him for strep. He had

> > the

> > surgery because of severe sleep apnea that made us fear for his

> life.

> >

> > I was hoping that his surgery would improve some of his " behaviors "

> > and it

> > did... a little. I think that was mostly due to the fact that he was

> > getting a lovely night of sleep instead of the horrific struggling

> > sleep he

> > had been experiencing.

> >

> > When he started with Dr. G (at age 6), Dr. G started monitoring his

> > ASO

> > levels and they were high, but not at through the roof high levels.

> > He got

> > to a point in grade 2 (age 7) where he was completely spaced out in

> > class...

> > couldn't follow the teacher at all and was just marching to his own

> > beat.

> > It was so severe that I voluntarily pulled him out of school (he

> > was in a

> > gifted class and I was worried because he was distracting the

> > class- and the

> > teacher was 9 months pregnant and at her wits' end). We called Dr.

> > G and he

> > immediately put my son on Erythromycin. The Erythromycin upset his

> > stomach,

> > but even as he was lying in bed with miserable nausea, we could see

> > that he

> > was much more focused again. Dr. G switched him to ERYPed (a more

> > stomach

> > friendly form of Erythromycin) and he was able to go back to school

> > the last

> > day his teacher taught before taking maternity leave. She called me

> > in the

> > middle of the day to say that his improvement was miraculous...

> he was

> > totally back on track.

> >

> > So, here's my point. The surgery for us was probably treating a

> > symptom

> > rather than the cause of my son's strep, which is a dysfunctional

> > immune

> > system. He just doesn't have the ability to fight strep well on his

> > own.

> > Then again, at the time it was all we knew to do. I often wonder if

> > he had

> > underlying strep infection for years following the surgery.

> >

> > I don't know that you had much of a choice about having the surgery

> > either... it sounds like you had your back up against the wall.

> >

> > Regarding how my son (now 12) is now, he is still quite OCD so the

> > surgery

> > didn't cure that. He is on SSRIs and they do benefit him.

> >

> > I guess it might be helpful for you to see you son post op for at

> > least

> > couple of weeks after he recovers so that you'll know where he

> > started (have

> > a baseline) emotionally. I'm sure you're anxious to see if the

> > SSRIs help

> > (I know I was), but really in the grand scheme of things, a couple

> > of weeks

> > is not all that long, and it might give you a better idea of what

> > the SSRIs

> > were doing for him.

> >

> > Two more thoughts. If it were me, I would ask the Drs to monitor

> > his ASO to

> > see if his titers go down. Strep can reside in places in the body

> > other

> > than tonsils. My second thought is just to remind you that in the

> > future,

> > since your son's tonsils are gone, you need to remember to remind

> > Drs. Of

> > that when he's sick (they're looking for swollen tonsils that

> > aren't there,

> > which can trick them).

> >

> > I hope that helps.

> >

> > Caroline

> >

> >

[Guest guest]

>Hi all,

Sorry it has been a while since I first posted, but I was pretty

busy with my son. His surgery went well. The surgeon said that his

tonsils and adenoids were deplorable. The were both covered in pus.

He did not know which one was worse. He also said " This kid has been

sick a long time. "

We were on 4 courses of antibiotics before the surgery. I can

say that the strongest antibiotic which was the Clindamycin did not

even take the strep away, but his behavior was much better while

taking it. (more compliant, less irritable and moody) This makes me

beg the question. Does he have more strep in his body that I just

don't know about. I will be monitoring the ASo titer. They were sli

ghtly elevated in September (6wks after his August bout with strep).

We see the infectious disease doctor next month. She said if we don't

get the results we want from the SSRI we can try Actos. I would

rather try Actos than do the Respiridol that the Psychiatrist wants to

do. My ultimate goal is IVIG. My insurance will cover it.

Thanks for all the Support,

Sue

> Sue,

>

> I guess by now your son has had the surgery. I hope he's recovering

well.

> I second the person who said it took every minute of the recovery time

> prescribed to recover... it's worth it to get up in the middle of

the night

> every night until then to give those pain killers!

>

> One of our boys (now age 12) has still had definite strep related

symptoms

> (years after surgery)... he had his tonsils and adenoids removed

when he was

> about 4. At the time, nobody thought to check him for strep. He

had the

> surgery because of severe sleep apnea that made us fear for his life.

>

> I was hoping that his surgery would improve some of his " behaviors "

and it

> did... a little. I think that was mostly due to the fact that he was

> getting a lovely night of sleep instead of the horrific struggling

sleep he

> had been experiencing.

>

> When he started with Dr. G (at age 6), Dr. G started monitoring his ASO

> levels and they were high, but not at through the roof high levels.

He got

> to a point in grade 2 (age 7) where he was completely spaced out in

class...

> couldn't follow the teacher at all and was just marching to his own

beat.

> It was so severe that I voluntarily pulled him out of school (he was

in a

> gifted class and I was worried because he was distracting the class-

and the

> teacher was 9 months pregnant and at her wits' end). We called Dr.

G and he

> immediately put my son on Erythromycin. The Erythromycin upset his

stomach,

> but even as he was lying in bed with miserable nausea, we could see

that he

> was much more focused again. Dr. G switched him to ERYPed (a more

stomach

> friendly form of Erythromycin) and he was able to go back to school

the last

> day his teacher taught before taking maternity leave. She called me

in the

> middle of the day to say that his improvement was miraculous... he was

> totally back on track.

>

> So, here's my point. The surgery for us was probably treating a symptom

> rather than the cause of my son's strep, which is a dysfunctional immune

> system. He just doesn't have the ability to fight strep well on his

own.

> Then again, at the time it was all we knew to do. I often wonder if

he had

> underlying strep infection for years following the surgery.

>

> I don't know that you had much of a choice about having the surgery

> either... it sounds like you had your back up against the wall.

>

> Regarding how my son (now 12) is now, he is still quite OCD so the

surgery

> didn't cure that. He is on SSRIs and they do benefit him.

>

> I guess it might be helpful for you to see you son post op for at least

> couple of weeks after he recovers so that you'll know where he

started (have

> a baseline) emotionally. I'm sure you're anxious to see if the

SSRIs help

> (I know I was), but really in the grand scheme of things, a couple

of weeks

> is not all that long, and it might give you a better idea of what

the SSRIs

> were doing for him.

>

> Two more thoughts. If it were me, I would ask the Drs to monitor his

ASO to

> see if his titers go down. Strep can reside in places in the body other

> than tonsils. My second thought is just to remind you that in the

future,

> since your son's tonsils are gone, you need to remember to remind

Drs. Of

> that when he's sick (they're looking for swollen tonsils that aren't

there,

> which can trick them).

>

> I hope that helps.

>

> Caroline

>

[Guest guest]

Hi Sue,

How are you getting your insurance to cover the IVIG? We are about to schedule

this therapy for our sons Pandas and I just assumed that insurance will not

cover it.

@...: swriter20022002@...: Tue, 12 Feb 2008

03:51:18 +0000Subject: Re: Tonsillectomy for Pandas

>Hi all,Sorry

it has been a while since I first posted, but I was prettybusy with my son. His

surgery went well. The surgeon said that histonsils and adenoids were

deplorable. The were both covered in pus. He did not know which one was worse.

He also said " This kid has beensick a long time. " We were on 4 courses of

antibiotics before the surgery. I cansay that the strongest antibiotic which was

the Clindamycin did noteven take the strep away, but his behavior was much

better whiletaking it. (more compliant, less irritable and moody) This makes

mebeg the question. Does he have more strep in his body that I justdon't know

about. I will be monitoring the ASo titer. They were slightly elevated in

September (6wks after his August bout with strep).We see the infectious disease

doctor next month. She said if we don'tget the results we want from the SSRI we

can try Actos. I wouldrather try Actos than do the Respiridol that the

Psychiatrist wants todo. My ultimate goal is IVIG. My insurance will cover

it.Thanks for all the Support,Sue> Sue,> > I guess by now your son has had the

surgery. I hope he's recoveringwell.> I second the person who said it took every

minute of the recovery time> prescribed to recover... it's worth it to get up in

the middle ofthe night> every night until then to give those pain killers!> >

One of our boys (now age 12) has still had definite strep relatedsymptoms>

(years after surgery)... he had his tonsils and adenoids removedwhen he was>

about 4. At the time, nobody thought to check him for strep. Hehad the> surgery

because of severe sleep apnea that made us fear for his life.> > I was hoping

that his surgery would improve some of his " behaviors " and it> did... a little. I

think that was mostly due to the fact that he was> getting a lovely night of

sleep instead of the horrific strugglingsleep he> had been experiencing.> > When

he started with Dr. G (at age 6), Dr. G started monitoring his ASO> levels and

they were high, but not at through the roof high levels.He got> to a point in

grade 2 (age 7) where he was completely spaced out inclass...> couldn't follow

the teacher at all and was just marching to his ownbeat.> It was so severe that

I voluntarily pulled him out of school (he wasin a> gifted class and I was

worried because he was distracting the class-and the> teacher was 9 months

pregnant and at her wits' end). We called Dr.G and he> immediately put my son on

Erythromycin. The Erythromycin upset hisstomach,> but even as he was lying in

bed with miserable nausea, we could seethat he> was much more focused again. Dr.

G switched him to ERYPed (a morestomach> friendly form of Erythromycin) and he

was able to go back to schoolthe last> day his teacher taught before taking

maternity leave. She called mein the> middle of the day to say that his

improvement was miraculous... he was> totally back on track.> > So, here's my

point. The surgery for us was probably treating a symptom> rather than the cause

of my son's strep, which is a dysfunctional immune> system. He just doesn't have

the ability to fight strep well on hisown.> Then again, at the time it was all

we knew to do. I often wonder ifhe had> underlying strep infection for years

following the surgery.> > I don't know that you had much of a choice about

having the surgery> either... it sounds like you had your back up against the

wall.> > Regarding how my son (now 12) is now, he is still quite OCD so

thesurgery> didn't cure that. He is on SSRIs and they do benefit him.> > I guess

it might be helpful for you to see you son post op for at least> couple of weeks

after he recovers so that you'll know where hestarted (have> a baseline)

emotionally. I'm sure you're anxious to see if theSSRIs help> (I know I was),

but really in the grand scheme of things, a coupleof weeks> is not all that

long, and it might give you a better idea of whatthe SSRIs> were doing for him.>

> Two more thoughts. If it were me, I would ask the Drs to monitor hisASO to>

see if his titers go down. Strep can reside in places in the body other> than

tonsils. My second thought is just to remind you that in thefuture,> since your

son's tonsils are gone, you need to remember to remindDrs. Of> that when he's

sick (they're looking for swollen tonsils that aren'tthere,> which can trick

them).> > I hope that helps. > > Caroline>

[Guest guest]

If your sons' Total IgG level is low, they should cover it.

LINDA A <lsa5885@...> wrote:

Hi Sue,

How are you getting your insurance to cover the IVIG? We are about to schedule

this therapy for our sons Pandas and I just assumed that insurance will not

cover it.

@...: swriter20022002@...: Tue, 12 Feb 2008

03:51:18 +0000Subject: Re: Tonsillectomy for Pandas

>Hi all,Sorry

it has been a while since I first posted, but I was prettybusy with my son. His

surgery went well. The surgeon said that histonsils and adenoids were

deplorable. The were both covered in pus. He did not know which one was worse.

He also said " This kid has beensick a long time. " We were on 4 courses of

antibiotics before the surgery. I cansay that the strongest antibiotic which was

the Clindamycin did noteven take the strep away, but his behavior was much

better whiletaking it. (more compliant, less irritable and moody) This makes

mebeg the question. Does he have more strep in his body that I justdon't know

about. I will be monitoring the ASo titer. They were slightly elevated in

September (6wks after his August bout with strep).We see the infectious disease

doctor next month. She said if we don'tget the results we want from the SSRI we

can try Actos. I wouldrather try Actos than do the Respiridol

that the Psychiatrist wants todo. My ultimate goal is IVIG. My insurance will

cover it.Thanks for all the Support,Sue> Sue,> > I guess by now your son has had

the surgery. I hope he's recoveringwell.> I second the person who said it took

every minute of the recovery time> prescribed to recover... it's worth it to get

up in the middle ofthe night> every night until then to give those pain

killers!> > One of our boys (now age 12) has still had definite strep

relatedsymptoms> (years after surgery)... he had his tonsils and adenoids

removedwhen he was> about 4. At the time, nobody thought to check him for strep.

Hehad the> surgery because of severe sleep apnea that made us fear for his

life.> > I was hoping that his surgery would improve some of his " behaviors " and

it> did... a little. I think that was mostly due to the fact that he was>

getting a lovely night of sleep instead of the horrific strugglingsleep ! he> h

ad been experiencing.> > When he started with Dr. G (at age

6), Dr. G started monitoring his ASO> levels and they were high, but not at

through the roof high levels.He got> to a point in grade 2 (age 7) where he was

completely spaced out inclass...> couldn't follow the teacher at all and was

just marching to his ownbeat.> It was so severe that I voluntarily pulled him

out of school (he wasin a> gifted class and I was worried because he was

distracting the class-and the> teacher was 9 months pregnant and at her wits'

end). We called Dr.G and he> immediately put my son on Erythromycin. The

Erythromycin upset hisstomach,> but even as he was lying in bed with miserable

nausea, we could seethat he> was much more focused again. Dr. G switched him to

ERYPed (a morestomach> friendly form of Erythromycin) and he was able to go back

to schoolthe last> day his teacher taught before taking maternity leave. She

called mein the> middle of the day to say that his improvement was miraculous...

he was> totally back on track.> > So, here's my point.

The surgery for us was probably treating a symptom> rather than the cause of my

son's strep, which is a dysfunctional immune> system. He just doesn't have the

ability to fight strep well on hisown.> Then again, at the time it was all we

knew to do. I often wonder ifhe had> underlying strep infection for years

following the surgery.> > I don't know that you had much of a choice about

having the surgery> either... it sounds like you had your back up against the

wall.> > Regarding how my son (now 12) is now, he is still quite OCD so

thesurgery> didn't cure that. He is on SSRIs and they do benefit him.> > I guess

it might be helpful for you to see you son post op for at least> couple of weeks

after he recovers so that you'll know where hestarted (have> a baseline)

emotionally. I'm sure you're anxious to see if theSSRIs help> (I know I was),

but really in the grand scheme of th! ings, a coupleof weeks> is not all that

long, and it might give you a better idea of whatthe SSRIs>

were doing for him.> > Two more thoughts. If it were me, I would ask the Drs to

monitor hisASO to> see if his titers go down. Strep can reside in places in the

body other> than tonsils. My second thought is just to remind you that in

thefuture,> since your son's tonsils are gone, you need to remember to

remindDrs. Of> that when he's sick (they're looking for swollen tonsils that

aren'tthere,> which can trick them).> > I hope that helps. > > Caroline>

[Guest guest]

Thanks, his level was low in the past. I'm not sure what it is now, but I'll add

it the labs we need to draw tomorrow morning.

@...: schneid99@...: Tue, 12 Feb 2008

07:43:50 -0800Subject: RE: Re: Tonsillectomy for Pandas

If your sons' Total IgG level is low, they should cover it. LINDA A

<lsa5885@...> wrote: Hi Sue,How are you getting your insurance to cover the

IVIG? We are about to schedule this therapy for our sons Pandas and I just

assumed that insurance will not cover it.@...:

swriter20022002@...: Tue, 12 Feb 2008 03:51:18 +0000Subject:

Re: Tonsillectomy for Pandas>Hi all,Sorry it has been a while since I first posted, but

I was prettybusy with my son. His surgery went well. The surgeon said that

histonsils and adenoids were deplorable. The were both covered in pus. He did

not know which one was worse. He also said " This kid has beensick a long

time. " We were on 4 courses of antibiotics before the surgery. I cansay that the

strongest antibiotic which was the Clindamycin did noteven take the strep away,

but his behavior was much better whiletaking it. (more compliant, less irritable

and moody) This makes mebeg the question. Does he have more strep in his body

that I justdon't know about. I will be monitoring the ASo titer. They were

slightly elevated in September (6wks after his August bout with strep).We see

the infectious disease doctor next month. She said if we don'tget the results we

want from the SSRI we can try Actos. I wouldrather try Actos than do the

Respiridolthat the Psychiatrist wants todo. My ultimate goal is IVIG. My

insurance will cover it.Thanks for all the Support,Sue> Sue,> > I guess by now

your son has had the surgery. I hope he's recoveringwell.> I second the person

who said it took every minute of the recovery time> prescribed to recover...

it's worth it to get up in the middle ofthe night> every night until then to

give those pain killers!> > One of our boys (now age 12) has still had definite

strep relatedsymptoms> (years after surgery)... he had his tonsils and adenoids

removedwhen he was> about 4. At the time, nobody thought to check him for strep.

Hehad the> surgery because of severe sleep apnea that made us fear for his

life.> > I was hoping that his surgery would improve some of his " behaviors " and

it> did... a little. I think that was mostly due to the fact that he was>

getting a lovely night of sleep instead of the horrific strugglingsleep ! he> h

ad been experiencing.> > When he started with Dr. G (at age6), Dr. G started

monitoring his ASO> levels and they were high, but not at through the roof high

levels.He got> to a point in grade 2 (age 7) where he was completely spaced out

inclass...> couldn't follow the teacher at all and was just marching to his

ownbeat.> It was so severe that I voluntarily pulled him out of school (he wasin

a> gifted class and I was worried because he was distracting the class-and the>

teacher was 9 months pregnant and at her wits' end). We called Dr.G and he>

immediately put my son on Erythromycin. The Erythromycin upset hisstomach,> but

even as he was lying in bed with miserable nausea, we could seethat he> was much

more focused again. Dr. G switched him to ERYPed (a morestomach> friendly form

of Erythromycin) and he was able to go back to schoolthe last> day his teacher

taught before taking maternity leave. She called mein the> middle of the day to

say that his improvement was miraculous... he was> totally back on track.> > So,

here's my point.The surgery for us was probably treating a symptom> rather than

the cause of my son's strep, which is a dysfunctional immune> system. He just

doesn't have the ability to fight strep well on hisown.> Then again, at the time

it was all we knew to do. I often wonder ifhe had> underlying strep infection

for years following the surgery.> > I don't know that you had much of a choice

about having the surgery> either... it sounds like you had your back up against

the wall.> > Regarding how my son (now 12) is now, he is still quite OCD so

thesurgery> didn't cure that. He is on SSRIs and they do benefit him.> > I guess

it might be helpful for you to see you son post op for at least> couple of weeks

after he recovers so that you'll know where hestarted (have> a baseline)

emotionally. I'm sure you're anxious to see if theSSRIs help> (I know I was),

but really in the grand scheme of th! ings, a coupleof weeks> is not all that

long, and it might give you a better idea of whatthe SSRIs>were doing for him.>

> Two more thoughts. If it were me, I would ask the Drs to monitor hisASO to>

see if his titers go down. Strep can reside in places in the body other> than

tonsils. My second thought is just to remind you that in thefuture,> since your

son's tonsils are gone, you need to remember to remindDrs. Of> that when he's

sick (they're looking for swollen tonsils that aren'tthere,> which can trick

them).> > I hope that helps. > > Caroline> [Non-text portions of this message

have been removed]Sincerely Noel[Non-text portions of this message have been

removed]

[Guest guest]

>Hi

all,Sorry it has been a while since I first posted, but I was

prettybusy with my son. His surgery went well. The surgeon said that

histonsils and adenoids were deplorable. The were both covered in pus.

He did not know which one was worse. He also said " This kid has

beensick a long time. " We were on 4 courses of antibiotics before the

surgery. I cansay that the strongest antibiotic which was the

Clindamycin did noteven take the strep away, but his behavior was much

better whiletaking it. (more compliant, less irritable and moody) This

makes mebeg the question. Does he have more strep in his body that I

justdon't know about. I will be monitoring the ASo titer. They were

slightly elevated in September (6wks after his August bout with

strep).We see the infectious disease doctor next month. She said if we

don'tget the results we want from the SSRI we can try Actos. I

wouldrather try Actos than do the Respiridol that the Psychiatrist

wants todo. My ultimate goal is IVIG. My insurance will cover

it.Thanks for all the Support,Sue> Sue,> > I guess by now your son has

had the surgery. I hope he's recoveringwell.> I second the person who

said it took every minute of the recovery time> prescribed to

recover... it's worth it to get up in the middle ofthe night> every

night until then to give those pain killers!> > One of our boys (now

age 12) has still had definite strep relatedsymptoms> (years after

surgery)... he had his tonsils and adenoids removedwhen he was> about

4. At the time, nobody thought to check him for strep. Hehad the>

surgery because of severe sleep apnea that made us fear for his life.>

> I was hoping that his surgery would improve some of his

" behaviors " and it> did... a little. I think that was mostly due to the

fact that he was> getting a lovely night of sleep instead of the

horrific strugglingsleep he> had been experiencing.> > When he started

with Dr. G (at age 6), Dr. G started monitoring his ASO> levels and

they were high, but not at through the roof high levels.He got> to a

point in grade 2 (age 7) where he was completely spaced out

inclass...> couldn't follow the teacher at all and was just marching

to his ownbeat.> It was so severe that I voluntarily pulled him out of

school (he wasin a> gifted class and I was worried because he was

distracting the class-and the> teacher was 9 months pregnant and at

her wits' end). We called Dr.G and he> immediately put my son on

Erythromycin. The Erythromycin upset hisstomach,> but even as he was

lying in bed with miserable nausea, we could seethat he> was much more

focused again. Dr. G switched him to ERYPed (a morestomach> friendly

form of Erythromycin) and he was able to go back to schoolthe last>

day his teacher taught before taking maternity leave. She called mein

the> middle of the day to say that his improvement was miraculous...

he was> totally back on track.> > So, here's my point. The surgery for

us was probably treating a symptom> rather than the cause of my son's

strep, which is a dysfunctional immune> system. He just doesn't have

the ability to fight strep well on hisown.> Then again, at the time it

was all we knew to do. I often wonder ifhe had> underlying strep

infection for years following the surgery.> > I don't know that you

had much of a choice about having the surgery> either... it sounds

like you had your back up against the wall.> > Regarding how my son

(now 12) is now, he is still quite OCD so thesurgery> didn't cure

that. He is on SSRIs and they do benefit him.> > I guess it might be

helpful for you to see you son post op for at least> couple of weeks

after he recovers so that you'll know where hestarted (have> a

baseline) emotionally. I'm sure you're anxious to see if theSSRIs

help> (I know I was), but really in the grand scheme of things, a

coupleof weeks> is not all that long, and it might give you a better

idea of whatthe SSRIs> were doing for him.> > Two more thoughts. If it

were me, I would ask the Drs to monitor hisASO to> see if his titers

go down. Strep can reside in places in the body other> than tonsils.

My second thought is just to remind you that in thefuture,> since your

son's tonsils are gone, you need to remember to remindDrs. Of> that

when he's sick (they're looking for swollen tonsils that aren'tthere,>

which can trick them).> > I hope that helps. > > Caroline>

>

>

>

>

>

>

>

>

[Guest guest]

I'm curious about the use of SSRIs in the treatment of PANDAS. What does this

class of medication do to reverse the strep?

TIA,

Robyn

swriter20022002 <swriter20022002@...> wrote:

>Hi

all,Sorry it has been a while since I first posted, but I was

prettybusy with my son. His surgery went well. The surgeon said that

histonsils and adenoids were deplorable. The were both covered in pus.

He did not know which one was worse. He also said " This kid has

beensick a long time. " We were on 4 courses of antibiotics before the

surgery. I cansay that the strongest antibiotic which was the

Clindamycin did noteven take the strep away, but his behavior was much

better whiletaking it. (more compliant, less irritable and moody) This

makes mebeg the question. Does he have more strep in his body that I

justdon't know about. I will be monitoring the ASo titer. They were

slightly elevated in September (6wks after his August bout with

strep).We see the infectious disease doctor next month. She said if we

don'tget the results we want from the SSRI we can try Actos. I

wouldrather try Actos than do the Respiridol that the Psychiatrist

wants todo. My ultimate goal is IVIG. My insurance will cover

it.Thanks for all the Support,Sue> Sue,> > I guess by now your son has

had the surgery. I hope he's recoveringwell.> I second the person who

said it took every minute of the recovery time> prescribed to

recover... it's worth it to get up in the middle ofthe night> every

night until then to give those pain killers!> > One of our boys (now

age 12) has still had definite strep relatedsymptoms> (years after

surgery)... he had his tonsils and adenoids removedwhen he was> about

4. At the time, nobody thought to check him for strep. Hehad the>

surgery because of severe sleep apnea that made us fear for his life.>

> I was hoping that his surgery would improve some of his

" behaviors " and it> did... a little. I think that was mostly due to the

fact that he was> getting a lovely night of sleep instead of the

horrific strugglingsleep he> had been experiencing.> > When he started

with Dr. G (at age 6), Dr. G started monitoring his ASO> levels and

they were high, but not at through the roof high levels.He got> to a

point in grade 2 (age 7) where he was completely spaced out

inclass...> couldn't follow the teacher at all and was just marching

to his ownbeat.> It was so severe that I voluntarily pulled him out of

school (he wasin a> gifted class and I was worried because he was

distracting the class-and the> teacher was 9 months pregnant and at

her wits' end). We called Dr.G and he> immediately put my son on

Erythromycin. The Erythromycin upset hisstomach,> but even as he was

lying in bed with miserable nausea, we could seethat he> was much more

focused again. Dr. G switched him to ERYPed (a morestomach> friendly

form of Erythromycin) and he was able to go back to schoolthe last>

day his teacher taught before taking maternity leave. She called mein

the> middle of the day to say that his improvement was miraculous...

he was> totally back on track.> > So, here's my point. The surgery for

us was probably treating a symptom> rather than the cause of my son's

strep, which is a dysfunctional immune> system. He just doesn't have

the ability to fight strep well on hisown.> Then again, at the time it

was all we knew to do. I often wonder ifhe had> underlying strep

infection for years following the surgery.> > I don't know that you

had much of a choice about having the surgery> either... it sounds

like you had your back up against the wall.> > Regarding how my son

(now 12) is now, he is still quite OCD so thesurgery> didn't cure

that. He is on SSRIs and they do benefit him.> > I guess it might be

helpful for you to see you son post op for at least> couple of weeks

after he recovers so that you'll know where hestarted (have> a

baseline) emotionally. I'm sure you're anxious to see if theSSRIs

help> (I know I was), but really in the grand scheme of things, a

coupleof weeks> is not all that long, and it might give you a better

idea of whatthe SSRIs> were doing for him.> > Two more thoughts. If it

were me, I would ask the Drs to monitor hisASO to> see if his titers

go down. Strep can reside in places in the body other> than tonsils.

My second thought is just to remind you that in thefuture,> since your

son's tonsils are gone, you need to remember to remindDrs. Of> that

when he's sick (they're looking for swollen tonsils that aren'tthere,>

which can trick them).> > I hope that helps. > > Caroline>

>

>

>

>

>

>

>

>

[Guest guest]

Why the SSRI? may I ask? Noel schneid99@...

swriter20022002 <swriter20022002@...> wrote: >Hi

all,Sorry it has been a while since I first posted, but I was

prettybusy with my son. His surgery went well. The surgeon said that

histonsils and adenoids were deplorable. The were both covered in pus.

He did not know which one was worse. He also said " This kid has

beensick a long time. " We were on 4 courses of antibiotics before the

surgery. I cansay that the strongest antibiotic which was the

Clindamycin did noteven take the strep away, but his behavior was much

better whiletaking it. (more compliant, less irritable and moody) This

makes mebeg the question. Does he have more strep in his body that I

justdon't know about. I will be monitoring the ASo titer. They were

slightly elevated in September (6wks after his August bout with

strep).We see the infectious disease doctor next month. She said if we

don'tget the results we want from the SSRI we can try Actos. I

wouldrather try Actos than do the Respiridol that the Psychiatrist

wants todo. My ultimate goal is IVIG. My insurance will cover

it.Thanks for all the Support,Sue> Sue,> > I guess by now your son has

had the surgery. I hope he's recoveringwell.> I second the person who

said it took every minute of the recovery time> prescribed to

recover... it's worth it to get up in the middle ofthe night> every

night until then to give those pain killers!> > One of our boys (now

age 12) has still had definite strep relatedsymptoms> (years after

surgery)... he had his tonsils and adenoids removedwhen he was> about

4. At the time, nobody thought to check him for strep. Hehad the>

surgery because of severe sleep apnea that made us fear for his life.>

> I was hoping that his surgery would improve some of his

" behaviors " and it> did... a little. I think that was mostly due to the

fact that he was> getting a lovely night of sleep instead of the

horrific strugglingsleep he> had been experiencing.> > When he started

with Dr. G (at age 6), Dr. G started monitoring his ASO> levels and

they were high, but not at through the roof high levels.He got> to a

point in grade 2 (age 7) where he was completely spaced out

inclass...> couldn't follow the teacher at all and was just marching

to his ownbeat.> It was so severe that I voluntarily pulled him out of

school (he wasin a> gifted class and I was worried because he was

distracting the class-and the> teacher was 9 months pregnant and at

her wits' end). We called Dr.G and he> immediately put my son on

Erythromycin. The Erythromycin upset hisstomach,> but even as he was

lying in bed with miserable nausea, we could seethat he> was much more

focused again. Dr. G switched him to ERYPed (a morestomach> friendly

form of Erythromycin) and he was able to go back to schoolthe last>

day his teacher taught before taking maternity leave. She called mein

the> middle of the day to say that his improvement was miraculous...

he was> totally back on track.> > So, here's my point. The surgery for

us was probably treating a symptom> rather than the cause of my son's

strep, which is a dysfunctional immune> system. He just doesn't have

the ability to fight strep well on hisown.> Then again, at the time it

was all we knew to do. I often wonder ifhe had> underlying strep

infection for years following the surgery.> > I don't know that you

had much of a choice about having the surgery> either... it sounds

like you had your back up against the wall.> > Regarding how my son

(now 12) is now, he is still quite OCD so thesurgery> didn't cure

that. He is on SSRIs and they do benefit him.> > I guess it might be

helpful for you to see you son post op for at least> couple of weeks

after he recovers so that you'll know where hestarted (have> a

baseline) emotionally. I'm sure you're anxious to see if theSSRIs

help> (I know I was), but really in the grand scheme of things, a

coupleof weeks> is not all that long, and it might give you a better

idea of whatthe SSRIs> were doing for him.> > Two more thoughts. If it

were me, I would ask the Drs to monitor hisASO to> see if his titers

go down. Strep can reside in places in the body other> than tonsils.

My second thought is just to remind you that in thefuture,> since your

son's tonsils are gone, you need to remember to remindDrs. Of> that

when he's sick (they're looking for swollen tonsils that aren'tthere,>

which can trick them).> > I hope that helps. > > Caroline>

>

>

>

>

>

>

>

>

[Guest guest]

Thanks Sue,

My son has been on SSRI's for five years and the PANDAS symptoms still wax and

wane. The SSRI is helpful for behavior, anxiety, and blood flow () but

really doesn't help the OCD at all. Do you mind sharing with me what Children's

Hospital you go to and the name of the infectious disease doctor that is

studying PANDAS?

Thanks,

@...: swriter20022002@...: Wed, 13 Feb 2008

00:27:34 +0000Subject: Re: Tonsillectomy for Pandas

>Hiall,Sorry it has been

a while since I first posted, but I wasprettybusy with my son. His surgery went

well. The surgeon said thathistonsils and adenoids were deplorable. The were

both covered in pus.He did not know which one was worse. He also said " This kid

hasbeensick a long time. " We were on 4 courses of antibiotics before thesurgery.

I cansay that the strongest antibiotic which was theClindamycin did noteven take

the strep away, but his behavior was muchbetter whiletaking it. (more compliant,

less irritable and moody) Thismakes mebeg the question. Does he have more strep

in his body that Ijustdon't know about. I will be monitoring the ASo titer. They

wereslightly elevated in September (6wks after his August bout withstrep).We see

the infectious disease doctor next month. She said if wedon'tget the results we

want from the SSRI we can try Actos. Iwouldrather try Actos than do the

Respiridol that the Psychiatristwants todo. My ultimate goal is IVIG. My

insurance will coverit.Thanks for all the Support,Sue> Sue,> > I guess by now

your son hashad the surgery. I hope he's recoveringwell.> I second the person

whosaid it took every minute of the recovery time> prescribed torecover... it's

worth it to get up in the middle ofthe night> everynight until then to give

those pain killers!> > One of our boys (nowage 12) has still had definite strep

relatedsymptoms> (years aftersurgery)... he had his tonsils and adenoids

removedwhen he was> about4. At the time, nobody thought to check him for strep.

Hehad the>surgery because of severe sleep apnea that made us fear for his

life.>> I was hoping that his surgery would improve some of his " behaviors " and

it> did... a little. I think that was mostly due to thefact that he was> getting

a lovely night of sleep instead of thehorrific strugglingsleep he> had been

experiencing.> > When he startedwith Dr. G (at age 6), Dr. G started monitoring

his ASO> levels andthey were high, but not at through the roof high levels.He

got> to apoint in grade 2 (age 7) where he was completely spaced outinclass...>

couldn't follow the teacher at all and was just marchingto his ownbeat.> It was

so severe that I voluntarily pulled him out ofschool (he wasin a> gifted class

and I was worried because he wasdistracting the class-and the> teacher was 9

months pregnant and ather wits' end). We called Dr.G and he> immediately put my

son onErythromycin. The Erythromycin upset hisstomach,> but even as he waslying

in bed with miserable nausea, we could seethat he> was much morefocused again.

Dr. G switched him to ERYPed (a morestomach> friendlyform of Erythromycin) and

he was able to go back to schoolthe last>day his teacher taught before taking

maternity leave. She called meinthe> middle of the day to say that his

improvement was miraculous...he was> totally back on track.> > So, here's my

point. The surgery forus was probably treating a symptom> rather than the cause

of my son'sstrep, which is a dysfunctional immune> system. He just doesn't

havethe ability to fight strep well on hisown.> Then again, at the time itwas

all we knew to do. I often wonder ifhe had> underlying strepinfection for years

following the surgery.> > I don't know that youhad much of a choice about having

the surgery> either... it soundslike you had your back up against the wall.> >

Regarding how my son(now 12) is now, he is still quite OCD so thesurgery> didn't

curethat. He is on SSRIs and they do benefit him.> > I guess it might behelpful

for you to see you son post op for at least> couple of weeksafter he recovers so

that you'll know where hestarted (have> abaseline) emotionally. I'm sure you're

anxious to see if theSSRIshelp> (I know I was), but really in the grand scheme

of things, acoupleof weeks> is not all that long, and it might give you a

betteridea of whatthe SSRIs> were doing for him.> > Two more thoughts. If itwere

me, I would ask the Drs to monitor hisASO to> see if his titersgo down. Strep

can reside in places in the body other> than tonsils.My second thought is just

to remind you that in thefuture,> since yourson's tonsils are gone, you need to

remember to remindDrs. Of> thatwhen he's sick (they're looking for swollen

tonsils that aren'tthere,>which can trick them).> > I hope that helps. > >

Caroline> > > > > > > > >

[Guest guest]

It's not used for strep, it's used for OCD in PANDAS treatment. It

also stimulates immune response and activates T-cells and can lower

inflammation. There is also evidence that it inhibits the release of

cytokines. So while it's not directly attacking strep, it has immune

modulating properties.

Cheryl

On Feb 12, 2008, at 4:47 PM, Robyn & Greg Coggins wrote:

> I'm curious about the use of SSRIs in the treatment of PANDAS. What

> does this class of medication do to reverse the strep?

>

> TIA,

>

> Robyn

>

> swriter20022002 <swriter20022002@...> wrote:

> >Hi

> all,Sorry it has been a while since I first posted, but I was

> prettybusy with my son. His surgery went well. The surgeon said that

> histonsils and adenoids were deplorable. The were both covered in pus.

> He did not know which one was worse. He also said " This kid has

> beensick a long time. " We were on 4 courses of antibiotics before the

> surgery. I cansay that the strongest antibiotic which was the

> Clindamycin did noteven take the strep away, but his behavior was much

> better whiletaking it. (more compliant, less irritable and moody) This

> makes mebeg the question. Does he have more strep in his body that I

> justdon't know about. I will be monitoring the ASo titer. They were

> slightly elevated in September (6wks after his August bout with

> strep).We see the infectious disease doctor next month. She said if we

> don'tget the results we want from the SSRI we can try Actos. I

> wouldrather try Actos than do the Respiridol that the Psychiatrist

> wants todo. My ultimate goal is IVIG. My insurance will cover

> it.Thanks for all the Support,Sue> Sue,> > I guess by now your son has

> had the surgery. I hope he's recoveringwell.> I second the person who

> said it took every minute of the recovery time> prescribed to

> recover... it's worth it to get up in the middle ofthe night> every

> night until then to give those pain killers!> > One of our boys (now

> age 12) has still had definite strep relatedsymptoms> (years after

> surgery)... he had his tonsils and adenoids removedwhen he was> about

> 4. At the time, nobody thought to check him for strep. Hehad the>

> surgery because of severe sleep apnea that made us fear for his life.>

> > I was hoping that his surgery would improve some of his

> " behaviors " and it> did... a little. I think that was mostly due to the

> fact that he was> getting a lovely night of sleep instead of the

> horrific strugglingsleep he> had been experiencing.> > When he started

> with Dr. G (at age 6), Dr. G started monitoring his ASO> levels and

> they were high, but not at through the roof high levels.He got> to a

> point in grade 2 (age 7) where he was completely spaced out

> inclass...> couldn't follow the teacher at all and was just marching

> to his ownbeat.> It was so severe that I voluntarily pulled him out of

> school (he wasin a> gifted class and I was worried because he was

> distracting the class-and the> teacher was 9 months pregnant and at

> her wits' end). We called Dr.G and he> immediately put my son on

> Erythromycin. The Erythromycin upset hisstomach,> but even as he was

> lying in bed with miserable nausea, we could seethat he> was much more

> focused again. Dr. G switched him to ERYPed (a morestomach> friendly

> form of Erythromycin) and he was able to go back to schoolthe last>

> day his teacher taught before taking maternity leave. She called mein

> the> middle of the day to say that his improvement was miraculous...

> he was> totally back on track.> > So, here's my point. The surgery for

> us was probably treating a symptom> rather than the cause of my son's

> strep, which is a dysfunctional immune> system. He just doesn't have

> the ability to fight strep well on hisown.> Then again, at the time it

> was all we knew to do. I often wonder ifhe had> underlying strep

> infection for years following the surgery.> > I don't know that you

> had much of a choice about having the surgery> either... it sounds

> like you had your back up against the wall.> > Regarding how my son

> (now 12) is now, he is still quite OCD so thesurgery> didn't cure

> that. He is on SSRIs and they do benefit him.> > I guess it might be

> helpful for you to see you son post op for at least> couple of weeks

> after he recovers so that you'll know where hestarted (have> a

> baseline) emotionally. I'm sure you're anxious to see if theSSRIs

> help> (I know I was), but really in the grand scheme of things, a

> coupleof weeks> is not all that long, and it might give you a better

> idea of whatthe SSRIs> were doing for him.> > Two more thoughts. If it

> were me, I would ask the Drs to monitor hisASO to> see if his titers

> go down. Strep can reside in places in the body other> than tonsils.

> My second thought is just to remind you that in thefuture,> since your

> son's tonsils are gone, you need to remember to remindDrs. Of> that

> when he's sick (they're looking for swollen tonsils that aren'tthere,>

> which can trick them).> > I hope that helps. > > Caroline>

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Hi Robyn

SSRIs are the only medicine actually indicated for

OCD. They can be pretty helpful in PANDAS. I believe

there are probably a lot of cases of OCD that are

PANDAS but no one knows - it's not uncommon to be

asymptomatic w/a strep infection when you're prone to

PANDAS. Anyway, SSRIs are the primary treatment for

OCD regardless of the cause. And they can be very

helpful. I find it most helpful to treat the anxiety

personally, but I have had improvements on SSRIs as

well.

Keep in mind ... sometimes the strep is gone but the

PANDAS is not. It's very hard to say, though. The

ASOs may rise but that does NOT definitely say strep

is present - it just is good enough reason to treat

w/antibiotics *in case* there is an actual infection

(which there EASILY could be and in my case I would

prefer they assume that I do have one).

But the positive response to antibotics does not

always mean that there was an actual infection,

either, believe it or not. Because antibiotics have

immune effects too, and other subtle effects,

including affecting cytokines interleukins, etc., so

that could be a part of the improvement. We really

just can't know.

So since PANDAS is an immune dysfunction as part of

, it's related to cytokines etc and other immune

and metabolic disruptions, which in turn disrupts

serotonin etc. SSRIs address not only the serotonin

but have some positive benefits on the immune system,

they can protect the neurons some from the

inflammation, they increase blood flow to the frontal

or temporal lobes, etc. BUT if you have some

increases in negatives with it, some inexpensive Tenex

would probably be the med that would help counteract

that and also be quite helpful w/PANDAS.

Remember that strep can be the trigger in PANDAS, and

is also likely present and must be carefully watched

for and treated long-term, the actual phenomenon is a

lot more than a response to the bacteria, and even

after the strep is definitely gone, the PANDAS does

not necessarily stop. It improves a whole lot in my

experience, but doesn't stop altogether. Time and

meds help too. Long term antibiotics are the MOST

helpful in preventing another strep infection to

trigger it off worse and to keep from overlooking one

(that asymptomatic problem again).

HTH-

--- Robyn & Greg Coggins <rngcoggs@...>

wrote:

> I'm curious about the use of SSRIs in the treatment

> of PANDAS. What does this class of medication do to

> reverse the strep?

>

> TIA,

>

> Robyn

>

> swriter20022002 <swriter20022002@...> wrote:

> >Hi

> all,Sorry it has been a while since I first posted,

> but I was

> prettybusy with my son. His surgery went well. The

> surgeon said that

> histonsils and adenoids were deplorable. The were

> both covered in pus.

> He did not know which one was worse. He also said

> " This kid has

> beensick a long time. " We were on 4 courses of

> antibiotics before the

> surgery. I cansay that the strongest antibiotic

> which was the

> Clindamycin did noteven take the strep away, but his

> behavior was much

> better whiletaking it. (more compliant, less

> irritable and moody) This

> makes mebeg the question. Does he have more strep in

> his body that I

> justdon't know about. I will be monitoring the ASo

> titer. They were

> slightly elevated in September (6wks after his

> August bout with

> strep).We see the infectious disease doctor next

> month. She said if we

> don'tget the results we want from the SSRI we can

> try Actos. I

> wouldrather try Actos than do the Respiridol that

> the Psychiatrist

> wants todo. My ultimate goal is IVIG. My insurance

> will cover

> it.Thanks for all the Support,Sue> Sue,> > I guess

> by now your son has

> had the surgery. I hope he's recoveringwell.> I

> second the person who

> said it took every minute of the recovery time>

> prescribed to

> recover... it's worth it to get up in the middle

> ofthe night> every

> night until then to give those pain killers!> > One

> of our boys (now

> age 12) has still had definite strep

> relatedsymptoms> (years after

> surgery)... he had his tonsils and adenoids

> removedwhen he was> about

> 4. At the time, nobody thought to check him for

> strep. Hehad the>

> surgery because of severe sleep apnea that made us

> fear for his life.>

> > I was hoping that his surgery would improve some

> of his

> " behaviors " and it> did... a little. I think that was

> mostly due to the

> fact that he was> getting a lovely night of sleep

> instead of the

> horrific strugglingsleep he> had been experiencing.>

> > When he started

> with Dr. G (at age 6), Dr. G started monitoring his

> ASO> levels and

> they were high, but not at through the roof high

> levels.He got> to a

> point in grade 2 (age 7) where he was completely

> spaced out

> inclass...> couldn't follow the teacher at all and

> was just marching

> to his ownbeat.> It was so severe that I voluntarily

> pulled him out of

> school (he wasin a> gifted class and I was worried

> because he was

> distracting the class-and the> teacher was 9 months

> pregnant and at

> her wits' end). We called Dr.G and he> immediately

> put my son on

> Erythromycin. The Erythromycin upset hisstomach,>

> but even as he was

> lying in bed with miserable nausea, we could seethat

> he> was much more

> focused again. Dr. G switched him to ERYPed (a

> morestomach> friendly

> form of Erythromycin) and he was able to go back to

> schoolthe last>

> day his teacher taught before taking maternity

> leave. She called mein

> the> middle of the day to say that his improvement

> was miraculous...

> he was> totally back on track.> > So, here's my

> point. The surgery for

> us was probably treating a symptom> rather than the

> cause of my son's

> strep, which is a dysfunctional immune> system. He

> just doesn't have

> the ability to fight strep well on hisown.> Then

> again, at the time it

> was all we knew to do. I often wonder ifhe had>

> underlying strep

> infection for years following the surgery.> > I

> don't know that you

> had much of a choice about having the surgery>

> either... it sounds

> like you had your back up against the wall.> >

> Regarding how my son

> (now 12) is now, he is still quite OCD so

> thesurgery> didn't cure

> that. He is on SSRIs and they do benefit him.> > I

> guess it might be

> helpful for you to see you son post op for at least>

> couple of weeks

> after he recovers so that you'll know where

> hestarted (have> a

> baseline) emotionally. I'm sure you're anxious to

> see if theSSRIs

> help> (I know I was), but really in the grand scheme

> of things, a

> coupleof weeks> is not all that long, and it might

> give you a better

> idea of whatthe SSRIs> were doing for him.> > Two

> more thoughts. If it

> were me, I would ask the Drs to monitor hisASO to>

> see if his titers

> go down. Strep can reside in places in the body

> other> than tonsils.

> My second thought is just to remind you that in

> thefuture,> since your

> son's tonsils are gone, you need to remember to

> remindDrs. Of> that

> when he's sick (they're looking for swollen tonsils

> that aren'tthere,>

> which can trick them).> > I hope that helps. > >

> Caroline>

> >

> >

> >

> >

> >

> >

> >

> > [Non-text portions of this message have been

> removed]

> >

>

>

>

>

>

>

>

=== message truncated ===

________________________________________________________________________________\

____

Never miss a thing. Make your home page.

http://www./r/hs

[Guest guest]

Thanks for the explanation.

Robyn

Cheryl Lowrance <c.lowrance@...> wrote:

It's not used for strep, it's used for OCD in PANDAS treatment. It

also stimulates immune response and activates T-cells and can lower

inflammation. There is also evidence that it inhibits the release of

cytokines. So while it's not directly attacking strep, it has immune

modulating properties.

Cheryl

On Feb 12, 2008, at 4:47 PM, Robyn & Greg Coggins wrote:

> I'm curious about the use of SSRIs in the treatment of PANDAS. What

> does this class of medication do to reverse the strep?

>

> TIA,

>

> Robyn

>

> swriter20022002 <swriter20022002@...> wrote:

> >Hi

> all,Sorry it has been a while since I first posted, but I was

> prettybusy with my son. His surgery went well. The surgeon said that

> histonsils and adenoids were deplorable. The were both covered in pus.

> He did not know which one was worse. He also said " This kid has

> beensick a long time. " We were on 4 courses of antibiotics before the

> surgery. I cansay that the strongest antibiotic which was the

> Clindamycin did noteven take the strep away, but his behavior was much

> better whiletaking it. (more compliant, less irritable and moody) This

> makes mebeg the question. Does he have more strep in his body that I

> justdon't know about. I will be monitoring the ASo titer. They were

> slightly elevated in September (6wks after his August bout with

> strep).We see the infectious disease doctor next month. She said if we

> don'tget the results we want from the SSRI we can try Actos. I

> wouldrather try Actos than do the Respiridol that the Psychiatrist

> wants todo. My ultimate goal is IVIG. My insurance will cover

> it.Thanks for all the Support,Sue> Sue,> > I guess by now your son has

> had the surgery. I hope he's recoveringwell.> I second the person who

> said it took every minute of the recovery time> prescribed to

> recover... it's worth it to get up in the middle ofthe night> every

> night until then to give those pain killers!> > One of our boys (now

> age 12) has still had definite strep relatedsymptoms> (years after

> surgery)... he had his tonsils and adenoids removedwhen he was> about

> 4. At the time, nobody thought to check him for strep. Hehad the>

> surgery because of severe sleep apnea that made us fear for his life.>

> > I was hoping that his surgery would improve some of his

> " behaviors " and it> did... a little. I think that was mostly due to the

> fact that he was> getting a lovely night of sleep instead of the

> horrific strugglingsleep he> had been experiencing.> > When he started

> with Dr. G (at age 6), Dr. G started monitoring his ASO> levels and

> they were high, but not at through the roof high levels.He got> to a

> point in grade 2 (age 7) where he was completely spaced out

> inclass...> couldn't follow the teacher at all and was just marching

> to his ownbeat.> It was so severe that I voluntarily pulled him out of

> school (he wasin a> gifted class and I was worried because he was

> distracting the class-and the> teacher was 9 months pregnant and at

> her wits' end). We called Dr.G and he> immediately put my son on

> Erythromycin. The Erythromycin upset hisstomach,> but even as he was

> lying in bed with miserable nausea, we could seethat he> was much more

> focused again. Dr. G switched him to ERYPed (a morestomach> friendly

> form of Erythromycin) and he was able to go back to schoolthe last>

> day his teacher taught before taking maternity leave. She called mein

> the> middle of the day to say that his improvement was miraculous...

> he was> totally back on track.> > So, here's my point. The surgery for

> us was probably treating a symptom> rather than the cause of my son's

> strep, which is a dysfunctional immune> system. He just doesn't have

> the ability to fight strep well on hisown.> Then again, at the time it

> was all we knew to do. I often wonder ifhe had> underlying strep

> infection for years following the surgery.> > I don't know that you

> had much of a choice about having the surgery> either... it sounds

> like you had your back up against the wall.> > Regarding how my son

> (now 12) is now, he is still quite OCD so thesurgery> didn't cure

> that. He is on SSRIs and they do benefit him.> > I guess it might be

> helpful for you to see you son post op for at least> couple of weeks

> after he recovers so that you'll know where hestarted (have> a

> baseline) emotionally. I'm sure you're anxious to see if theSSRIs

> help> (I know I was), but really in the grand scheme of things, a

> coupleof weeks> is not all that long, and it might give you a better

> idea of whatthe SSRIs> were doing for him.> > Two more thoughts. If it

> were me, I would ask the Drs to monitor hisASO to> see if his titers

> go down. Strep can reside in places in the body other> than tonsils.

> My second thought is just to remind you that in thefuture,> since your

> son's tonsils are gone, you need to remember to remindDrs. Of> that

> when he's sick (they're looking for swollen tonsils that aren'tthere,>

> which can trick them).> > I hope that helps. > > Caroline>

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

>Hiall,Sorry it has been a while

since I first posted, but I wasprettybusy with my son. His surgery

went well. The surgeon said thathistonsils and adenoids were

deplorable. The were both covered in pus.He did not know which one was

worse. He also said " This kid hasbeensick a long time. " We were on 4

courses of antibiotics before thesurgery. I cansay that the strongest

antibiotic which was theClindamycin did noteven take the strep away,

but his behavior was muchbetter whiletaking it. (more compliant, less

irritable and moody) Thismakes mebeg the question. Does he have more

strep in his body that Ijustdon't know about. I will be monitoring the

ASo titer. They wereslightly elevated in September (6wks after his

August bout withstrep).We see the infectious disease doctor next

month. She said if wedon'tget the results we want from the SSRI we can

try Actos. Iwouldrather try Actos than do the Respiridol that the

Psychiatristwants todo. My ultimate goal is IVIG. My insurance will

coverit.Thanks for all the Support,Sue> Sue,> > I guess by now your

son hashad the surgery. I hope he's recoveringwell.> I second the

person whosaid it took every minute of the recovery time> prescribed

torecover... it's worth it to get up in the middle ofthe night>

everynight until then to give those pain killers!> > One of our boys

(nowage 12) has still had definite strep relatedsymptoms> (years

aftersurgery)... he had his tonsils and adenoids removedwhen he was>

about4. At the time, nobody thought to check him for strep. Hehad

the>surgery because of severe sleep apnea that made us fear for his

life.>> I was hoping that his surgery would improve some of

his " behaviors " and it> did... a little. I think that was mostly due to

thefact that he was> getting a lovely night of sleep instead of

thehorrific strugglingsleep he> had been experiencing.> > When he

startedwith Dr. G (at age 6), Dr. G started monitoring his ASO> levels

andthey were high, but not at through the roof high levels.He got> to

apoint in grade 2 (age 7) where he was completely spaced

outinclass...> couldn't follow the teacher at all and was just

marchingto his ownbeat.> It was so severe that I voluntarily pulled

him out ofschool (he wasin a> gifted class and I was worried because

he wasdistracting the class-and the> teacher was 9 months pregnant and

ather wits' end). We called Dr.G and he> immediately put my son

onErythromycin. The Erythromycin upset hisstomach,> but even as he

waslying in bed with miserable nausea, we could seethat he> was much

morefocused again. Dr. G switched him to ERYPed (a morestomach>

friendlyform of Erythromycin) and he was able to go back to schoolthe

last>day his teacher taught before taking maternity leave. She called

meinthe> middle of the day to say that his improvement was

miraculous...he was> totally back on track.> > So, here's my point.

The surgery forus was probably treating a symptom> rather than the

cause of my son'sstrep, which is a dysfunctional immune> system. He

just doesn't havethe ability to fight strep well on hisown.> Then

again, at the time itwas all we knew to do. I often wonder ifhe had>

underlying strepinfection for years following the surgery.> > I don't

know that youhad much of a choice about having the surgery> either...

it soundslike you had your back up against the wall.> > Regarding how

my son(now 12) is now, he is still quite OCD so thesurgery> didn't

curethat. He is on SSRIs and they do benefit him.> > I guess it might

behelpful for you to see you son post op for at least> couple of

weeksafter he recovers so that you'll know where hestarted (have>

abaseline) emotionally. I'm sure you're anxious to see if

theSSRIshelp> (I know I was), but really in the grand scheme of

things, acoupleof weeks> is not all that long, and it might give you a

betteridea of whatthe SSRIs> were doing for him.> > Two more thoughts.

If itwere me, I would ask the Drs to monitor hisASO to> see if his

titersgo down. Strep can reside in places in the body other> than

tonsils.My second thought is just to remind you that in thefuture,>

since yourson's tonsils are gone, you need to remember to remindDrs.

Of> thatwhen he's sick (they're looking for swollen tonsils that

aren'tthere,>which can trick them).> > I hope that helps. > >

Caroline> > > > > > > > > [Non-text portions of this message have been

removed]>

>

>

>

>

>

>

>

>