PANDAS questions

[Guest guest]

Another biomed mom (who is also my son's behavior consultant)has

pointed out to me recently my son has some OCD issues. I always

chalked it up to typical autism related rigidity, but she assures me

that of all the spectrum kids she has and does work with, that his

insistance of sameness is out of " normal " for kids on the spectrum.

She mentioned PANDAS which I have read about but always dismissed

thinking that my son didn't have problems with OCD. So, in reviewing

his behaviors and symptoms here's what I've come up with:

My son doesn't have " tics " but has had them in the past during a staph

aureus infection in his ear.

My son has OCD symptoms: the fan in his bedroom MUST be on, he has been

wearing the same hat 24 hours a day since June, he MUST wear the same

red coat outside regardless of temperature, yada yada yada yada.

As for the other 7 " symptoms " he has:

ADHD symptoms - hyperactivity, inattention, fidgety - unless he is

watching a favorite show, or working at the table during ABA, he DOES

NOT stop moving...ever...

Separation anxiety - He has the most INCREADIBLE separation anxiety

from me specifically. He is not happy with just Dad...has to be me.

Can't remember the last time I could use the bathroom by myself or take

a shower when he was awake.

Mood changes (irritability, sadness, emotional lability) - He has had

periods of intense moodiness. This seems to have died down recently,

but he does have ocassional bouts of crying for no reason.

Sleep disturbance - He has no problems with this...excellent sleeper!

Night- time bed wetting and/or day- time urinary frequency - Still in

pull-ups at night which are always wet when I get him up in the

morning. He drinks TONS throughout the day and pees in accordance with

the intake of fluids.

Fine/gross motor changes (e.g. changes in handwriting) - He has some

days where the gross motor goes out the window and he is a total

clutz. Fine motor is harder to judge b/c he's so little and it's still

developing.

Joint pains - doesn't seem to be any evidence of this.

So, what do you think? We just started working with Dr. Bock. He

switched us to Custom Probiotics D-Lactate-free blend. I don't believe

there are strep strains in it. Oh, and I forgot to mention that I had

strep about 13 times in 2 years in middle school and could very well be

a carrier...

Here are my questions:

1. What is the liklihood that my son is a PANDAS kid?

2. Is it important to do testing for it?

3. What is the most common protocol for treating PANDAS? (My son has a

TERRIBLE gut and is on SCD having just completed a round of

vanco/amphoB)

Thanks in advance for reading this novel,

Stacie

Mom to Will, 3 1/2, fighting hard to recover from ASD...and winning!

[Guest guest]

no way to tell, but the test is easy

Recovering from Autism is a marathonNOT a sprint, but FULLY possible!Read more about it on my BLOGs athttp://www.myspace.com/christelkinghttp://foggyrock.com/MyPage/recoveringwisheshttp://www.facebook.com/profile.php?id=677063169

PANDAS questions

Another biomed mom (who is also my son's behavior consultant)has pointed out to me recently my son has some OCD issues. I always chalked it up to typical autism related rigidity, but she assures me that of all the spectrum kids she has and does work with, that his insistance of sameness is out of "normal" for kids on the spectrum. She mentioned PANDAS which I have read about but always dismissed thinking that my son didn't have problems with OCD. So, in reviewing his behaviors and symptoms here's what I've come up with: My son doesn't have "tics" but has had them in the past during a staph aureus infection in his ear.My son has OCD symptoms: the fan in his bedroom MUST be on, he has been wearing the same hat 24 hours a day since June, he MUST wear the same red coat outside regardless of temperature, yada yada yada yada.As for the other 7 "symptoms" he has:ADHD symptoms - hyperactivity, inattention, fidgety - unless he is watching a favorite show, or working at the table during ABA, he DOES NOT stop moving...ever...Separation anxiety - He has the most INCREADIBLE separation anxiety from me specifically. He is not happy with just Dad...has to be me. Can't remember the last time I could use the bathroom by myself or take a shower when he was awake.Mood changes (irritability, sadness, emotional lability) - He has had periods of intense moodiness. This seems to have died down recently, but he does have ocassional bouts of crying for no reason.Sleep disturbance - He has no problems with this...excellent sleeper!Night- time bed wetting and/or day- time urinary frequency - Still in pull-ups at night which are always wet when I get him up in the morning. He drinks TONS throughout the day and pees in accordance with the intake of fluids.Fine/gross motor changes (e.g. changes in handwriting) - He has some days where the gross motor goes out the window and he is a total clutz. Fine motor is harder to judge b/c he's so little and it's still developing.Joint pains - doesn't seem to be any evidence of this.So, what do you think? We just started working with Dr. Bock. He switched us to Custom Probiotics D-Lactate-free blend. I don't believe there are strep strains in it. Oh, and I forgot to mention that I had strep about 13 times in 2 years in middle school and could very well be a carrier...Here are my questions:1. What is the liklihood that my son is a PANDAS kid?2. Is it important to do testing for it?3. What is the most common protocol for treating PANDAS? (My son has a TERRIBLE gut and is on SCD having just completed a round of vanco/amphoB)Thanks in advance for reading this novel,StacieMom to Will, 3 1/2, fighting hard to recover from ASD...and winning!

Internal Virus Database is out of date.Checked by AVG - http://www.avg.com Version: 8.0.175 / Virus Database: 270.8.3/1746 - Release Date: 10/25/2008 5:55 PM

[Guest guest]

My son had severe separation anxiety until we treated for

bartonella. Also, excessive thirst until we treated for babesia.

Many people with bartonella also have chronic strep as it is nearly

impossible to eradicate strep with a bartonella infection.

Caryn

>

> Another biomed mom (who is also my son's behavior consultant)has

> pointed out to me recently my son has some OCD issues. I always

> chalked it up to typical autism related rigidity, but she assures

me

> that of all the spectrum kids she has and does work with, that his

> insistance of sameness is out of " normal " for kids on the

spectrum.

> She mentioned PANDAS which I have read about but always dismissed

> thinking that my son didn't have problems with OCD. So, in

reviewing

> his behaviors and symptoms here's what I've come up with:

>

> My son doesn't have " tics " but has had them in the past during a

staph

> aureus infection in his ear.

>

> My son has OCD symptoms: the fan in his bedroom MUST be on, he has

been

> wearing the same hat 24 hours a day since June, he MUST wear the

same

> red coat outside regardless of temperature, yada yada yada yada.

>

> As for the other 7 " symptoms " he has:

> ADHD symptoms - hyperactivity, inattention, fidgety - unless he is

> watching a favorite show, or working at the table during ABA, he

DOES

> NOT stop moving...ever...

> Separation anxiety - He has the most INCREADIBLE separation anxiety

> from me specifically. He is not happy with just Dad...has to be

me.

> Can't remember the last time I could use the bathroom by myself or

take

> a shower when he was awake.

> Mood changes (irritability, sadness, emotional lability) - He has

had

> periods of intense moodiness. This seems to have died down

recently,

> but he does have ocassional bouts of crying for no reason.

> Sleep disturbance - He has no problems with this...excellent

sleeper!

> Night- time bed wetting and/or day- time urinary frequency - Still

in

> pull-ups at night which are always wet when I get him up in the

> morning. He drinks TONS throughout the day and pees in accordance

with

> the intake of fluids.

> Fine/gross motor changes (e.g. changes in handwriting) - He has

some

> days where the gross motor goes out the window and he is a total

> clutz. Fine motor is harder to judge b/c he's so little and it's

still

> developing.

> Joint pains - doesn't seem to be any evidence of this.

>

> So, what do you think? We just started working with Dr. Bock. He

> switched us to Custom Probiotics D-Lactate-free blend. I don't

believe

> there are strep strains in it. Oh, and I forgot to mention that I

had

> strep about 13 times in 2 years in middle school and could very

well be

> a carrier...

>

> Here are my questions:

> 1. What is the liklihood that my son is a PANDAS kid?

> 2. Is it important to do testing for it?

> 3. What is the most common protocol for treating PANDAS? (My son

has a

> TERRIBLE gut and is on SCD having just completed a round of

> vanco/amphoB)

>

> Thanks in advance for reading this novel,

> Stacie

> Mom to Will, 3 1/2, fighting hard to recover from ASD...and winning!

>

[Guest guest]

Thank you! How did you treat for Bartonella and babesia? How were

they diagnosed?

I appreciate your help!!

Stacie

Mom to Will, 3 1/2, fighting hard to recover from ASD...and winning!

> >

> > Another biomed mom (who is also my son's behavior consultant)has

> > pointed out to me recently my son has some OCD issues. I always

> > chalked it up to typical autism related rigidity, but she assures

> me

> > that of all the spectrum kids she has and does work with, that

his

> > insistance of sameness is out of " normal " for kids on the

> spectrum.

> > She mentioned PANDAS which I have read about but always dismissed

> > thinking that my son didn't have problems with OCD. So, in

> reviewing

> > his behaviors and symptoms here's what I've come up with:

> >

> > My son doesn't have " tics " but has had them in the past during a

> staph

> > aureus infection in his ear.

> >

> > My son has OCD symptoms: the fan in his bedroom MUST be on, he

has

> been

> > wearing the same hat 24 hours a day since June, he MUST wear the

> same

> > red coat outside regardless of temperature, yada yada yada yada.

> >

> > As for the other 7 " symptoms " he has:

> > ADHD symptoms - hyperactivity, inattention, fidgety - unless he

is

> > watching a favorite show, or working at the table during ABA, he

> DOES

> > NOT stop moving...ever...

> > Separation anxiety - He has the most INCREADIBLE separation

anxiety

> > from me specifically. He is not happy with just Dad...has to be

> me.

> > Can't remember the last time I could use the bathroom by myself

or

> take

> > a shower when he was awake.

> > Mood changes (irritability, sadness, emotional lability) - He has

> had

> > periods of intense moodiness. This seems to have died down

> recently,

> > but he does have ocassional bouts of crying for no reason.

> > Sleep disturbance - He has no problems with this...excellent

> sleeper!

> > Night- time bed wetting and/or day- time urinary frequency -

Still

> in

> > pull-ups at night which are always wet when I get him up in the

> > morning. He drinks TONS throughout the day and pees in

accordance

> with

> > the intake of fluids.

> > Fine/gross motor changes (e.g. changes in handwriting) - He has

> some

> > days where the gross motor goes out the window and he is a total

> > clutz. Fine motor is harder to judge b/c he's so little and it's

> still

> > developing.

> > Joint pains - doesn't seem to be any evidence of this.

> >

> > So, what do you think? We just started working with Dr. Bock.

He

> > switched us to Custom Probiotics D-Lactate-free blend. I don't

> believe

> > there are strep strains in it. Oh, and I forgot to mention that

I

> had

> > strep about 13 times in 2 years in middle school and could very

> well be

> > a carrier...

> >

> > Here are my questions:

> > 1. What is the liklihood that my son is a PANDAS kid?

> > 2. Is it important to do testing for it?

> > 3. What is the most common protocol for treating PANDAS? (My son

> has a

> > TERRIBLE gut and is on SCD having just completed a round of

> > vanco/amphoB)

> >

> > Thanks in advance for reading this novel,

> > Stacie

> > Mom to Will, 3 1/2, fighting hard to recover from ASD...and

winning!

> >

>

[Guest guest]

Caryn,

How did you treat the bartonella and babesia?

TIA-Gayle

> >

> > Another biomed mom (who is also my son's behavior consultant)has

> > pointed out to me recently my son has some OCD issues. I always

> > chalked it up to typical autism related rigidity, but she

assures

> me

> > that of all the spectrum kids she has and does work with, that

his

> > insistance of sameness is out of " normal " for kids on the

> spectrum.

> > She mentioned PANDAS which I have read about but always

dismissed

> > thinking that my son didn't have problems with OCD. So, in

> reviewing

> > his behaviors and symptoms here's what I've come up with:

> >

> > My son doesn't have " tics " but has had them in the past during a

> staph

> > aureus infection in his ear.

> >

> > My son has OCD symptoms: the fan in his bedroom MUST be on, he

has

> been

> > wearing the same hat 24 hours a day since June, he MUST wear the

> same

> > red coat outside regardless of temperature, yada yada yada yada.

> >

> > As for the other 7 " symptoms " he has:

> > ADHD symptoms - hyperactivity, inattention, fidgety - unless he

is

> > watching a favorite show, or working at the table during ABA, he

> DOES

> > NOT stop moving...ever...

> > Separation anxiety - He has the most INCREADIBLE separation

anxiety

> > from me specifically. He is not happy with just Dad...has to be

> me.

> > Can't remember the last time I could use the bathroom by myself

or

> take

> > a shower when he was awake.

> > Mood changes (irritability, sadness, emotional lability) - He

has

> had

> > periods of intense moodiness. This seems to have died down

> recently,

> > but he does have ocassional bouts of crying for no reason.

> > Sleep disturbance - He has no problems with this...excellent

> sleeper!

> > Night- time bed wetting and/or day- time urinary frequency -

Still

> in

> > pull-ups at night which are always wet when I get him up in the

> > morning. He drinks TONS throughout the day and pees in

accordance

> with

> > the intake of fluids.

> > Fine/gross motor changes (e.g. changes in handwriting) - He has

> some

> > days where the gross motor goes out the window and he is a total

> > clutz. Fine motor is harder to judge b/c he's so little and

it's

> still

> > developing.

> > Joint pains - doesn't seem to be any evidence of this.

> >

> > So, what do you think? We just started working with Dr. Bock.

He

> > switched us to Custom Probiotics D-Lactate-free blend. I don't

> believe

> > there are strep strains in it. Oh, and I forgot to mention that

I

> had

> > strep about 13 times in 2 years in middle school and could very

> well be

> > a carrier...

> >

> > Here are my questions:

> > 1. What is the liklihood that my son is a PANDAS kid?

> > 2. Is it important to do testing for it?

> > 3. What is the most common protocol for treating PANDAS? (My

son

> has a

> > TERRIBLE gut and is on SCD having just completed a round of

> > vanco/amphoB)

> >

> > Thanks in advance for reading this novel,

> > Stacie

> > Mom to Will, 3 1/2, fighting hard to recover from ASD...and

winning!

> >

>

[Guest guest]

Stacie - First of all say THANKS to the consultant who mentioned the OCD to you. My son has had symptoms for four years now, and I'm just now understanding them to be OCD as they were less than the obvious patterns. Four years and a billion doctors and I had to be the one to figure this out. Now I'm on a rampage to battle bacteria and combat the OCD. Tackle it now...it gets much much worse if it's anything ilke my son's. Dr. Bock is a great doctor. Wish I could afford to go to him. Ask him what to do about ocd and PLEASE keep I posted. I need help figuring this one out. Right now, I have him on pleo sans strep and zoloft.

PANDAS questions

Another biomed mom (who is also my son's behavior consultant)has pointed out to me recently my son has some OCD issues. I always chalked it up to typical autism related rigidity, but she assures me that of all the spectrum kids she has and does work with, that his insistance of sameness is out of "normal" for kids on the spectrum. She mentioned PANDAS which I have read about but always dismissed thinking that my son didn't have problems with OCD. So, in reviewing his behaviors and symptoms here's what I've come up with: My son doesn't have "tics" but has had them in the past during a staph aureus infection in his ear.My son has OCD symptoms: the fan in his bedroom MUST be on, he has been wearing the same hat 24 hours a day since June, he MUST wear the same red coat outside regardless of temperature, yada yada yada yada.As for the other 7 "symptoms" he has:ADHD symptoms - hyperactivity, inattention, fidgety - unless he is watching a favorite show, or working at the table during ABA, he DOES NOT stop moving...ever...Separation anxiety - He has the most INCREADIBLE separation anxiety from me specifically. He is not happy with just Dad...has to be me. Can't remember the last time I could use the bathroom by myself or take a shower when he was awake.Mood changes (irritability, sadness, emotional lability) - He has had periods of intense moodiness. This seems to have died down recently, but he does have ocassional bouts of crying for no reason.Sleep disturbance - He has no problems with this...excellent sleeper!Night- time bed wetting and/or day- time urinary frequency - Still in pull-ups at night which are always wet when I get him up in the morning. He drinks TONS throughout the day and pees in accordance with the intake of fluids.Fine/gross motor changes (e.g. changes in handwriting) - He has some days where the gross motor goes out the window and he is a total clutz. Fine motor is harder to judge b/c he's so little and it's still developing.Joint pains - doesn't seem to be any evidence of this.So, what do you think? We just started working with Dr. Bock. He switched us to Custom Probiotics D-Lactate-free blend. I don't believe there are strep strains in it. Oh, and I forgot to mention that I had strep about 13 times in 2 years in middle school and could very well be a carrier...Here are my questions:1. What is the liklihood that my son is a PANDAS kid?2. Is it important to do testing for it?3. What is the most common protocol for treating PANDAS? (My son has a TERRIBLE gut and is on SCD having just completed a round of vanco/amphoB)Thanks in advance for reading this novel,StacieMom to Will, 3 1/2, fighting hard to recover from ASD...and winning!

[Guest guest]

Oh please don't do that. Please don't hope it's PANDAS. Hope it's something simpler like yeast or bacteria. I hoped my son's PANDAS profile was positive. I was excited when I found out it was because atleast then I had an explanation for his change in behaviors and rapid decline. Now it's 15 months and about $20K later just for PANDAS and we're still not back to where he was 15 months ago.

I hope you find an answer. I hope it's something simple

Kerrie

Visit my list of PARENT TO PARENT toy and game suggestions for the holidays! Don't forget to email your suggestions so I can add them.PARENT TO PARENT TOY SUGGESTIONS FOR KIDS WITH AUTISM

We have a follow-up call w/Compain in December and I definitely will bring this up. Is it strange that a part of me hopes it is PANDAS so that we can treat it? Or do I just not know enough about this all? The seperation anxiety stuff is KILLING me. He has a total meltdown now anytime he *thinks* about me taking a shower. He was happily playing in the playroom and all of the sudden burst into tears, came racing into the kitchen screaming "All done mommy shower!!!!". Every morning when he wakes up we hear 20 minutes of "Stay at Wills house today. Stay Mommy Will at Wills house today". He's not happy until my husband leaves for work assuring him that I'm not leaving.AOL Search: Your one stop for directions, recipes and all other Holiday needs. Search Now.

[Guest guest]

What did you use to treat bartonella? Thanks Eileen

> >

> > Another biomed mom (who is also my son's behavior consultant)has

> > pointed out to me recently my son has some OCD issues. I always

> > chalked it up to typical autism related rigidity, but she assures

> me

> > that of all the spectrum kids she has and does work with, that

his

> > insistance of sameness is out of " normal " for kids on the

> spectrum.

> > She mentioned PANDAS which I have read about but always dismissed

> > thinking that my son didn't have problems with OCD. So, in

> reviewing

> > his behaviors and symptoms here's what I've come up with:

> >

> > My son doesn't have " tics " but has had them in the past during a

> staph

> > aureus infection in his ear.

> >

> > My son has OCD symptoms: the fan in his bedroom MUST be on, he

has

> been

> > wearing the same hat 24 hours a day since June, he MUST wear the

> same

> > red coat outside regardless of temperature, yada yada yada yada.

> >

> > As for the other 7 " symptoms " he has:

> > ADHD symptoms - hyperactivity, inattention, fidgety - unless he

is

> > watching a favorite show, or working at the table during ABA, he

> DOES

> > NOT stop moving...ever...

> > Separation anxiety - He has the most INCREADIBLE separation

anxiety

> > from me specifically. He is not happy with just Dad...has to be

> me.

> > Can't remember the last time I could use the bathroom by myself

or

> take

> > a shower when he was awake.

> > Mood changes (irritability, sadness, emotional lability) - He has

> had

> > periods of intense moodiness. This seems to have died down

> recently,

> > but he does have ocassional bouts of crying for no reason.

> > Sleep disturbance - He has no problems with this...excellent

> sleeper!

> > Night- time bed wetting and/or day- time urinary frequency -

Still

> in

> > pull-ups at night which are always wet when I get him up in the

> > morning. He drinks TONS throughout the day and pees in

accordance

> with

> > the intake of fluids.

> > Fine/gross motor changes (e.g. changes in handwriting) - He has

> some

> > days where the gross motor goes out the window and he is a total

> > clutz. Fine motor is harder to judge b/c he's so little and it's

> still

> > developing.

> > Joint pains - doesn't seem to be any evidence of this.

> >

> > So, what do you think? We just started working with Dr. Bock.

He

> > switched us to Custom Probiotics D-Lactate-free blend. I don't

> believe

> > there are strep strains in it. Oh, and I forgot to mention that

I

> had

> > strep about 13 times in 2 years in middle school and could very

> well be

> > a carrier...

> >

> > Here are my questions:

> > 1. What is the liklihood that my son is a PANDAS kid?

> > 2. Is it important to do testing for it?

> > 3. What is the most common protocol for treating PANDAS? (My son

> has a

> > TERRIBLE gut and is on SCD having just completed a round of

> > vanco/amphoB)

> >

> > Thanks in advance for reading this novel,

> > Stacie

> > Mom to Will, 3 1/2, fighting hard to recover from ASD...and

winning!

> >

>

[Guest guest]

In addition to checking out PANDAS/strep, the fact that he has had staph also raises flags. Some people with chronic illnesses do amazingly well after using the staph and strep nosodes together homeopathically. Dr Bock should be able to tell you if this would be appropriate for your son. Also, please look at the homeopathic remedy Indol and see if it rings any bells. It makes the body excrete excess indoles. I had to order mine from England, but it was absolutely amazing for Mike when it came to the OCD and constant motion. One of the leading indications for the remedy is constant motion of the fingers and feet. 's hands and feet moved even in his sleep. He also had a raised red rash on his cheeks that came and went, and he reacted badly to melatonin, prozac, valerian, blue fruits and blue food dye, and milk-all of which are loaded with indoles. Mike also

had sleep problems, and he was terrible about moving in the morning, also an indicator for that remedy. willsmomstacie wrote: Another biomed mom (who is also my son's behavior consultant)has pointed out to me recently my son has some OCD issues. I always chalked it up to typical autism related rigidity, but she assures me that of all the spectrum kids she has and does work with, that his insistance of sameness is out of "normal" for kids on the spectrum. She mentioned

PANDAS which I have read about but always dismissed thinking that my son didn't have problems with OCD. So, in reviewing his behaviors and symptoms here's what I've come up with: My son doesn't have "tics" but has had them in the past during a staph aureus infection in his ear.My son has OCD symptoms: the fan in his bedroom MUST be on, he has been wearing the same hat 24 hours a day since June, he MUST wear the same red coat outside regardless of temperature, yada yada yada yada.As for the other 7 "symptoms" he has:ADHD symptoms - hyperactivity, inattention, fidgety - unless he is watching a favorite show, or working at the table during ABA, he DOES NOT stop moving...ever...Separation anxiety - He has the most INCREADIBLE separation anxiety from me specifically. He is not happy with just Dad...has to be me. Can't remember the last time I could use the bathroom by myself or take a shower when he

was awake.Mood changes (irritability, sadness, emotional lability) - He has had periods of intense moodiness. This seems to have died down recently, but he does have ocassional bouts of crying for no reason.Sleep disturbance - He has no problems with this...excellent sleeper!Night- time bed wetting and/or day- time urinary frequency - Still in pull-ups at night which are always wet when I get him up in the morning. He drinks TONS throughout the day and pees in accordance with the intake of fluids.Fine/gross motor changes (e.g. changes in handwriting) - He has some days where the gross motor goes out the window and he is a total clutz. Fine motor is harder to judge b/c he's so little and it's still developing.Joint pains - doesn't seem to be any evidence of this.So, what do you think? We just started working with Dr. Bock. He switched us to Custom Probiotics D-Lactate-free blend. I don't believe there are

strep strains in it. Oh, and I forgot to mention that I had strep about 13 times in 2 years in middle school and could very well be a carrier...Here are my questions:1. What is the liklihood that my son is a PANDAS kid?2. Is it important to do testing for it?3. What is the most common protocol for treating PANDAS? (My son has a TERRIBLE gut and is on SCD having just completed a round of vanco/amphoB)Thanks in advance for reading this novel,StacieMom to Will, 3 1/2, fighting hard to recover from ASD...and winning!

[Guest guest]

HI there. You should bring this to Dr Bock's attention-he is an expert on PANDAS and is treating my son as well.

The symptoms you describe, however- in my opinion- are not abnormal for kids on the Spectrum. They are common in typical kids as well. My 10 yr old needs a fan on to sleep for the noise, yet he is very typical.

Bock can do specific testing for PANDAS. Let him know what you are thinking.

[Guest guest]

,

Thanks for your response. I LOVE my consultant and will forever be

indebted to her for many reasons, this being just one. Regarding the

pleo sans strep, did you test your son prior to starting, how much is

he taking, how much does he weigh and have you seen improvemnt?

Thanks!

Stacie

Mom to Will, 3 1/2, fighting hard to recover from ASD...and winning!

>

> Stacie - First of all say THANKS to the consultant who mentioned

the OCD to you. My son has had symptoms for four years now, and I'm

just now understanding them to be OCD as they were less than the

obvious patterns. Four years and a billion doctors and I had to be

the one to figure this out. Now I'm on a rampage to battle bacteria

and combat the OCD. Tackle it now...it gets much much worse if it's

anything ilke my son's. Dr. Bock is a great doctor. Wish I could

afford to go to him. Ask him what to do about ocd and PLEASE keep I

posted. I need help figuring this one out. Right now, I have him on

pleo sans strep and zoloft.

>

>

>

>

> PANDAS questions

>

>

> Another biomed mom (who is also my son's behavior consultant)has

> pointed out to me recently my son has some OCD issues. I always

> chalked it up to typical autism related rigidity, but she assures

me

> that of all the spectrum kids she has and does work with, that

his

> insistance of sameness is out of " normal " for kids on the

spectrum.

> She mentioned PANDAS which I have read about but always dismissed

> thinking that my son didn't have problems with OCD. So, in

reviewing

> his behaviors and symptoms here's what I've come up with:

>

> My son doesn't have " tics " but has had them in the past during a

staph

> aureus infection in his ear.

>

> My son has OCD symptoms: the fan in his bedroom MUST be on, he

has been

> wearing the same hat 24 hours a day since June, he MUST wear the

same

> red coat outside regardless of temperature, yada yada yada yada.

>

> As for the other 7 " symptoms " he has:

> ADHD symptoms - hyperactivity, inattention, fidgety - unless he

is

> watching a favorite show, or working at the table during ABA, he

DOES

> NOT stop moving...ever...

> Separation anxiety - He has the most INCREADIBLE separation

anxiety

> from me specifically. He is not happy with just Dad...has to be

me.

> Can't remember the last time I could use the bathroom by myself

or take

> a shower when he was awake.

> Mood changes (irritability, sadness, emotional lability) - He has

had

> periods of intense moodiness. This seems to have died down

recently,

> but he does have ocassional bouts of crying for no reason.

> Sleep disturbance - He has no problems with this...excellent

sleeper!

> Night- time bed wetting and/or day- time urinary frequency -

Still in

> pull-ups at night which are always wet when I get him up in the

> morning. He drinks TONS throughout the day and pees in accordance

with

> the intake of fluids.

> Fine/gross motor changes (e.g. changes in handwriting) - He has

some

> days where the gross motor goes out the window and he is a total

> clutz. Fine motor is harder to judge b/c he's so little and it's

still

> developing.

> Joint pains - doesn't seem to be any evidence of this.

>

> So, what do you think? We just started working with Dr. Bock. He

> switched us to Custom Probiotics D-Lactate-free blend. I don't

believe

> there are strep strains in it. Oh, and I forgot to mention that I

had

> strep about 13 times in 2 years in middle school and could very

well be

> a carrier...

>

> Here are my questions:

> 1. What is the liklihood that my son is a PANDAS kid?

> 2. Is it important to do testing for it?

> 3. What is the most common protocol for treating PANDAS? (My son

has a

> TERRIBLE gut and is on SCD having just completed a round of

> vanco/amphoB)

>

> Thanks in advance for reading this novel,

> Stacie

> Mom to Will, 3 1/2, fighting hard to recover from ASD...and

winning!

>

[Guest guest]

We have a follow-up call w/Compain in December and I definitely will

bring this up. Is it strange that a part of me hopes it is PANDAS so

that we can treat it? Or do I just not know enough about this all?

The seperation anxiety stuff is KILLING me. He has a total meltdown

now anytime he *thinks* about me taking a shower. He was happily

playing in the playroom and all of the sudden burst into tears, came

racing into the kitchen screaming " All done mommy shower!!!! " . Every

morning when he wakes up we hear 20 minutes of " Stay at Wills house

today. Stay Mommy Will at Wills house today " . He's not happy until my

husband leaves for work assuring him that I'm not leaving.

Sorry...whining over now...

Stacie

Mom to Will, 3 1/2, fighting hard to recover from ASD...and winning!

>

> HI there. You should bring this to Dr Bock's attention-he is an

expert on PANDAS and is treating my son as well.

> The symptoms you describe, however- in my opinion- are not abnormal

for kids on the Spectrum. They are common in typical kids as well. My

10 yr old needs a fan on to sleep for the noise, yet he is very typical.

> Bock can do specific testing for PANDAS. Let him know what you are

thinking.

>  

>

[Guest guest]

Stacie - We work with a homeopathic doctor in VA named Dr. Gennaro. She muscle tested Tommy and found him to be having a major problem with strep bacteria. Thus explaining the flare up of his OCD. When she muscle tested him for the pleo sans strep, he tested strongly for it. We are also giving him Pleo Not. He will need to go thru 6 bottles (correlates to his age I think), 5 drops of each, 2 x per day. He is 6 yrs. old, about 50-55 pounds. This is only his third day on it and so far I have not noted any improvements but I will keep you posted.

With the recent flare up he is having, the symptoms are so much more obvious than before. Such as, cups have to be in the fridge, lights have to be off, doors closed, etc etc etc to the point where it is very disruptive and he will tantrum over things that aren't perfectly the way he wants them. Prior to this new flare up, he had symptoms that I did not recognize (stupidly) such as only using one toilet in the entire world, and (since he's been 2 years old), breaking down into a rage/tantrum/crying/hitting etc. whenever he would make a mistake during ABA work (fear of mistakes big sign of ocd... I never knew.) I think if you're not familiar with all the symptoms of OCD it's easy to chalk them up to autistic behaviors or frustration or just quirkiness...like I was doing for the last four years. Luckily for you, someone knowledgeable pointed this out to you so you can now tackle it.

Others here have posted success in treating OCD with antibiotics such as zithromax and ceftin. Also, many use olive leaf extract, but it's very bitter tasting and I can't get my son to take it regularly.

PANDAS questions> > > Another biomed mom (who is also my son's behavior consultant)has > pointed out to me recently my son has some OCD issues. I always > chalked it up to typical autism related rigidity, but she assures me > that of all the spectrum kids she has and does work with, that his > insistance of sameness is out of "normal" for kids on the spectrum. > She mentioned PANDAS which I have read about but always dismissed > thinking that my son didn't have problems with OCD. So, in reviewing > his behaviors and symptoms here's what I've come up with: > > My son doesn't have "tics" but has had them in the past during a staph > aureus infection in his ear.> > My son has OCD symptoms: the fan in his bedroom MUST be on, he has been > wearing the same hat 24 hours a day since June, he MUST wear the same > red coat outside regardless of temperature, yada yada yada yada.> > As for the other 7 "symptoms" he has:> ADHD symptoms - hyperactivity, inattention, fidgety - unless he is > watching a favorite show, or working at the table during ABA, he DOES > NOT stop moving...ever...> Separation anxiety - He has the most INCREADIBLE separation anxiety > from me specifically. He is not happy with just Dad...has to be me. > Can't remember the last time I could use the bathroom by myself or take > a shower when he was awake.> Mood changes (irritability, sadness, emotional lability) - He has had > periods of intense moodiness. This seems to have died down recently, > but he does have ocassional bouts of crying for no reason.> Sleep disturbance - He has no problems with this...excellent sleeper!> Night- time bed wetting and/or day- time urinary frequency - Still in > pull-ups at night which are always wet when I get him up in the > morning. He drinks TONS throughout the day and pees in accordance with > the intake of fluids.> Fine/gross motor changes (e.g. changes in handwriting) - He has some > days where the gross motor goes out the window and he is a total > clutz. Fine motor is harder to judge b/c he's so little and it's still > developing.> Joint pains - doesn't seem to be any evidence of this.> > So, what do you think? We just started working with Dr. Bock. He > switched us to Custom Probiotics D-Lactate-free blend. I don't believe > there are strep strains in it. Oh, and I forgot to mention that I had > strep about 13 times in 2 years in middle school and could very well be > a carrier...> > Here are my questions:> 1. What is the liklihood that my son is a PANDAS kid?> 2. Is it important to do testing for it?> 3. What is the most common protocol for treating PANDAS? (My son has a > TERRIBLE gut and is on SCD having just completed a round of > vanco/amphoB)> > Thanks in advance for reading this novel,> Stacie> Mom to Will, 3 1/2, fighting hard to recover from ASD...and winning!>

[Guest guest]

It's never strange to hope that you find a treatable illness. Treatable = hope.

Re: PANDAS questions

We have a follow-up call w/Compain in December and I definitely will bring this up. Is it strange that a part of me hopes it is PANDAS so that we can treat it? Or do I just not know enough about this all? The seperation anxiety stuff is KILLING me. He has a total meltdown now anytime he *thinks* about me taking a shower. He was happily playing in the playroom and all of the sudden burst into tears, came racing into the kitchen screaming "All done mommy shower!!!!". Every morning when he wakes up we hear 20 minutes of "Stay at Wills house today. Stay Mommy Will at Wills house today". He's not happy until my husband leaves for work assuring him that I'm not leaving.Sorry...whining over now...StacieMom to Will, 3 1/2, fighting hard to recover from ASD...and winning!>> HI there. You should bring this to Dr Bock's attention-he is an expert on PANDAS and is treating my son as well.> The symptoms you describe, however- in my opinion- are not abnormal for kids on the Spectrum. They are common in typical kids as well. My 10 yr old needs a fan on to sleep for the noise, yet he is very typical.> Bock can do specific testing for PANDAS. Let him know what you are thinking.> >

[Guest guest]

Kerrie - What have you treated him with that cost so much money?

Re: Re: PANDAS questions

Oh please don't do that. Please don't hope it's PANDAS. Hope it's something simpler like yeast or bacteria. I hoped my son's PANDAS profile was positive. I was excited when I found out it was because atleast then I had an explanation for his change in behaviors and rapid decline. Now it's 15 months and about $20K later just for PANDAS and we're still not back to where he was 15 months ago.

I hope you find an answer. I hope it's something simple

Kerrie

Visit my list of PARENT TO PARENT toy and game suggestions for the holidays! Don't forget to email your suggestions so I can add them.PARENT TO PARENT TOY SUGGESTIONS FOR KIDS WITH AUTISM

In a message dated 11/6/2008 10:16:31 A.M. Eastern Standard Time, stacieandrewrunion writes:

We have a follow-up call w/Compain in December and I definitely will bring this up. Is it strange that a part of me hopes it is PANDAS so that we can treat it? Or do I just not know enough about this all? The seperation anxiety stuff is KILLING me. He has a total meltdown now anytime he *thinks* about me taking a shower. He was happily playing in the playroom and all of the sudden burst into tears, came racing into the kitchen screaming "All done mommy shower!!!!". Every morning when he wakes up we hear 20 minutes of "Stay at Wills house today. Stay Mommy Will at Wills house today". He's not happy until my husband leaves for work assuring him that I'm not leaving.

AOL Search: Your one stop for directions, recipes and all other Holiday needs. Search Now.

[Guest guest]

What is PANDAS??? I keep seeing it in posts and have no idea what it is. Thanks!Subject: Re: PANDAS questionsTo: mb12 valtrex Date: Thursday, November 6, 2008, 7:14 AM

We have a follow-up call w/Compain in December and I definitely will

bring this up. Is it strange that a part of me hopes it is PANDAS so

that we can treat it? Or do I just not know enough about this all?

The seperation anxiety stuff is KILLING me. He has a total meltdown

now anytime he *thinks* about me taking a shower. He was happily

playing in the playroom and all of the sudden burst into tears, came

racing into the kitchen screaming "All done mommy shower!!!!". Every

morning when he wakes up we hear 20 minutes of "Stay at Wills house

today. Stay Mommy Will at Wills house today". He's not happy until my

husband leaves for work assuring him that I'm not leaving.

Sorry...whining over now...

Stacie

Mom to Will, 3 1/2, fighting hard to recover from ASD...and winning!

>

> HI there. You should bring this to Dr Bock's attention-he is an

expert on PANDAS and is treating my son as well.

> The symptoms you describe, however- in my opinion- are not abnormal

for kids on the Spectrum. They are common in typical kids as well. My

10 yr old needs a fan on to sleep for the noise, yet he is very typical.

> Bock can do specific testing for PANDAS. Let him know what you are

thinking.

>

>

[Guest guest]

http://www.adhd.com.au/PANDAS.htm

a great link to read up. there are tons if you google it. use all caps.

Re: PANDAS questionsTo: mb12 valtrex Date: Thursday, November 6, 2008, 7:14 AM

We have a follow-up call w/Compain in December and I definitely will bring this up. Is it strange that a part of me hopes it is PANDAS so that we can treat it? Or do I just not know enough about this all? The seperation anxiety stuff is KILLING me. He has a total meltdown now anytime he *thinks* about me taking a shower. He was happily playing in the playroom and all of the sudden burst into tears, came racing into the kitchen screaming "All done mommy shower!!!!". Every morning when he wakes up we hear 20 minutes of "Stay at Wills house today. Stay Mommy Will at Wills house today". He's not happy until my husband leaves for work assuring him that I'm not leaving.Sorry...whining over now...StacieMom to Will, 3 1/2, fighting hard to recover from ASD...and winning!>> HI there. You should bring this to Dr Bock's attention-he is an expert on PANDAS and is treating my son as well.> The symptoms you describe, however- in my opinion- are not abnormal for kids on the Spectrum. They are common in typical kids as well. My 10 yr old needs a fan on to sleep for the noise, yet he is very typical.> Bock can do specific testing for PANDAS. Let him know what you are thinking.> >

[Guest guest]

oh I hear that, I felt that way as well, it gave you something TO conquire and direction to look to do that

Recovering from Autism is a marathonNOT a sprint, but FULLY possible!Read more about it on my BLOGs athttp://www.myspace.com/christelkinghttp://foggyrock.com/MyPage/recoveringwisheshttp://www.facebook.com/profile.php?id=677063169

Re: PANDAS questions

We have a follow-up call w/Compain in December and I definitely will bring this up. Is it strange that a part of me hopes it is PANDAS so that we can treat it? Or do I just not know enough about this all? The seperation anxiety stuff is KILLING me. He has a total meltdown now anytime he *thinks* about me taking a shower. He was happily playing in the playroom and all of the sudden burst into tears, came racing into the kitchen screaming "All done mommy shower!!!!". Every morning when he wakes up we hear 20 minutes of "Stay at Wills house today. Stay Mommy Will at Wills house today". He's not happy until my husband leaves for work assuring him that I'm not leaving.Sorry...whining over now...StacieMom to Will, 3 1/2, fighting hard to recover from ASD...and winning!>> HI there. You should bring this to Dr Bock's attention-he is an expert on PANDAS and is treating my son as well.> The symptoms you describe, however- in my opinion- are not abnormal for kids on the Spectrum. They are common in typical kids as well. My 10 yr old needs a fan on to sleep for the noise, yet he is very typical.> Bock can do specific testing for PANDAS. Let him know what you are thinking.> >

No virus found in this incoming message.Checked by AVG - http://www.avg.com Version: 8.0.175 / Virus Database: 270.9.0/1771 - Release Date: 11/6/2008 7:58 AM

[Guest guest]

PANDAS, is an abbreviation for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. The term is used to describe a subset of children who have Obsessive Compulsive Disorder (OCD) and/or tic disorders such as Tourette's Syndrome, and in whom symptoms worsen following strep. infections such as "Strep throat" and Scarlet Fever. The children usually have dramatic, "overnight" onset of symptoms, including motor or vocal tics, obsessions, and/or compulsions. In addition to these symptoms, children may also become moody, irritable or show concerns about separating from parents or loved ones. This abrupt onset is generally preceeded by a Strep. throat infection.

PANDAS is similar to that of Rheumatic Fever, an autoimmune disorder triggered by strep. throat infections. In every bacterial infection, the body produces antibodies against the invading bacteria, and the antibodies help eliminate the bacteria from the body. However in Rheumatic Fever, the antibodies mistakenly recognize and "attack" the heart valves, joints, and/or certain parts of the brain. This phenomenon is called "molecular mimicry", which means that proteins on the cell wall of the strep. bacteria are similar in some way to the proteins of the heart valve, joints, or brain

One part of the brain that is affected in PANDAS is the Basal Ganglia, which is believed to be responsible for movement and behavior. Thus, the antibodies interact with the brain to cause tics and/or OCD

clinicians use 5 diagnostic criteria for the diagnosis of PANDAS (see below). At the present time the clinical features of the illness are the only means of determining whether or not a child might have PANDAS. Q. What are the diagnostic criteria for PANDAS? A. They are:

Presence of Obsessive-compulsive disorder and/or a tic disorder Pediatric onset of symptoms (age 3 years to puberty) Episodic course of symptom severity Association with group A Beta-hemolytic streptococcal infection (a positive throat culture for strep. or history of Scarlet Fever.) Association with neurological abnormalities (motoric hyperactivity, or adventitious movements, such as choreiform movements)

Q. What is an episodic course of symptoms? A. Children with PANDAS seem to have dramatic ups and downs in their OCD and/or tic severity. Tics or OCD which are almost always present at a relatively consistent level do not represent an episodic course. Many kids with OCD or tics have good days and bad days, or even good weeks and bad weeks. However, patients with PANDAS have a very sudden onset or worsening of their symptoms, followed by a slow, gradual improvement. If they get another strep. infection, their symptoms suddenly worsen again. The increased symptom severity usually persists for at least several weeks, but may last for several months or longer. The tics or OCD then seem to gradually fade away, and the children often enjoy a few weeks or several months without problems. When they have another strep. throat infection the tics or OCD return just as suddenly and dramatically as they did previously. Q. Are there any other symptoms associated with PANDAS episodes? A. Yes. Children with PANDAS often experience one or more of the following symptoms in conjunction with their OCD and/or tics:

ADHD symptoms (hyperactivity, inattention, fidgety) Separation anxiety (Child is "clingy" and has difficulty separating from his/her caregivers. For example, the child may not want to be in a different room in the house from his/her parents.) Mood changes (irritability, sadness, emotional lability) Sleep disturbance Night- time bed wetting and/or day- time urinary frequency Fine/gross motor changes (e.g. changes in handwriting) Joint pains

here is another list from another site

Red flagsThe biggest difference between regular OCD and PANDAS OCD is the sudden onset. OCD usually develops slowly over weeks, months or even years; however, PANDAS OCD seems to come out of the blue with parents saying one day their child woke up a different kid. There are also other symptoms that help differentiate the 2 types of OCD. PANDAS OCD is also characterized by:

Choreiform movements: involuntary or irregular writhing movements of the legs, arm or face

Presence of tics and/or hyperactivity

Irritability, temper tantrums, or mood lability

Nighttime difficulties

Severe nightmares and new bedtime rituals or fears

Separation anxiety

Age regression: going back to younger developmental stage

New handwriting problems, loss of math skills, sensory sensitivities

Q. My child has had strep. throat before, and he has tics and/or OCD. Does that mean he has PANDAS? A. No. Many children have OCD and/or tics, and almost all school aged children get strep. throat at some point in their lives. In fact, the average grade-school student will have 2 – 3 strep. throat infections each year. PANDAS is considered when there is a very close relationship between the abrupt onset or worsening or OCD and/or tics, and a preceding strep. infection. If strep. is found in conjunction with two or three episodes of OCD/tics, then it may be that the child has PANDAS

What to do if you suspect your child has PANDAS

Contact your pediatrician. Advocate for your child by being clear about what you want your doctor to do. In some cases, you may have to find a sympathetic doctor who is willing to learn about PANDAS. The PANDAS Clinic at NIMH may be willing to consult with doctors.

Have your pediatrician do a throat culture of group A B-hemolytic strep. Ask that the specimen be cultured, not just the rapid test.

Your doctor may also do a blood test to assess elevated streptococcal antibodies (Anti-DNAse B and Antistreptolysin titers (ASO)).

You and/or your doctor can get information and treatment guidelines from the National Institute of Mental Health (www.nih.gov); type in PANDAS to access the appropriate link.

Contact the OC Foundation to help locate an expert in OCD in your area.

Have your child retested if there is a resurgence in OCD symptoms.

yes my son and best friend both have PANDAS< my son had scarlet fever and strep throat and deteriorated what felt like over night almost 2 years ago, which we have then seen a pattern with 3 other episodes, which gives him the dx of PANDAS, he gets very OCD over letter and turns extreamly hyperlexic, his hand writting goes, he has melt downs over nothings, lots of tantrums, gets mean and will hurt his sisters for no reason ect. my aspie friend well get really depressed, and emotional, have melt downs, becomes unfunctionable, her immune system crashes and she will over night new allergies to the place she can bearly eat. (she is an adult and it looks a bit different) she was previously dxed with tourettes which I pushed her to get tested as I saw it come and go like my son with his PANDAS flares and sure enough she tested possitive, so now with treatment OLE (olive leaf extract) she is tic free as well. she has the history of tons of strep infection as a child and being on spectrum as well but wasn't caught till this last year. so her peices are coming together now.

I hope this helps you some with examples of both a child and an adult, If I can help you futher please don't hesitate to contact me agian

christel king

Recovering from Autism is a marathonNOT a sprint, but FULLY possible!Read more about it on my BLOGs athttp://www.myspace.com/christelkinghttp://foggyrock.com/MyPage/recoveringwisheshttp://www.facebook.com/profile.php?id=677063169

Re: PANDAS questionsTo: mb12 valtrex Date: Thursday, November 6, 2008, 7:14 AM

We have a follow-up call w/Compain in December and I definitely will bring this up. Is it strange that a part of me hopes it is PANDAS so that we can treat it? Or do I just not know enough about this all? The seperation anxiety stuff is KILLING me. He has a total meltdown now anytime he *thinks* about me taking a shower. He was happily playing in the playroom and all of the sudden burst into tears, came racing into the kitchen screaming "All done mommy shower!!!!". Every morning when he wakes up we hear 20 minutes of "Stay at Wills house today. Stay Mommy Will at Wills house today". He's not happy until my husband leaves for work assuring him that I'm not leaving.Sorry...whining over now...StacieMom to Will, 3 1/2, fighting hard to recover from ASD...and winning!>> HI there. You should bring this to Dr Bock's attention-he is an expert on PANDAS and is treating my son as well.> The symptoms you describe, however- in my opinion- are not abnormal for kids on the Spectrum. They are common in typical kids as well. My 10 yr old needs a fan on to sleep for the noise, yet he is very typical.> Bock can do specific testing for PANDAS. Let him know what you are thinking.> >

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[Guest guest]

where is Dr. Gennaro in VA?

Subject: Re: Re: PANDAS questionsTo: mb12 valtrex Date: Thursday, November 6, 2008, 10:26 AM

Stacie - We work with a homeopathic doctor in VA named Dr. Gennaro. She muscle tested Tommy and found him to be having a major problem with strep bacteria. Thus explaining the flare up of his OCD. When she muscle tested him for the pleo sans strep, he tested strongly for it. We are also giving him Pleo Not. He will need to go thru 6 bottles (correlates to his age I think), 5 drops of each, 2 x per day. He is 6 yrs. old, about 50-55 pounds. This is only his third day on it and so far I have not noted any improvements but I will keep you posted.

With the recent flare up he is having, the symptoms are so much more obvious than before. Such as, cups have to be in the fridge, lights have to be off, doors closed, etc etc etc to the point where it is very disruptive and he will tantrum over things that aren't perfectly the way he wants them. Prior to this new flare up, he had symptoms that I did not recognize (stupidly) such as only using one toilet in the entire world, and (since he's been 2 years old), breaking down into a rage/tantrum/ crying/hitting etc. whenever he would make a mistake during ABA work (fear of mistakes big sign of ocd... I never knew.) I think if you're not familiar with all the symptoms of OCD it's easy to chalk them up to autistic behaviors or frustration or just quirkiness.. .like I was doing for the last four years. Luckily for you, someone knowledgeable pointed this out to you so you can now tackle it.

Others here have posted success in treating OCD with antibiotics such as zithromax and ceftin. Also, many use olive leaf extract, but it's very bitter tasting and I can't get my son to take it regularly.

PANDAS questions> > > Another biomed mom (who is also my son's behavior consultant)has > pointed out to me recently my son has some OCD issues. I always > chalked it up to typical autism related rigidity, but she assures me > that of all the spectrum kids she has and does work with, that his > insistance of

sameness is out of "normal" for kids on the spectrum. > She mentioned PANDAS which I have read about but always dismissed > thinking that my son didn't have problems with OCD. So, in reviewing > his behaviors and symptoms here's what I've come up with: > > My son doesn't have "tics" but has had them in the past during a staph > aureus infection in his ear.> > My son has OCD symptoms: the fan in his bedroom MUST be on, he has been > wearing the same hat 24 hours a day since June, he MUST wear the same > red coat outside regardless of temperature, yada yada yada yada.> > As for the other 7 "symptoms" he has:> ADHD symptoms - hyperactivity, inattention, fidgety - unless he is > watching a favorite show, or working at the table during ABA, he DOES > NOT stop moving...ever. ..> Separation anxiety - He has the most

INCREADIBLE separation anxiety > from me specifically. He is not happy with just Dad...has to be me. > Can't remember the last time I could use the bathroom by myself or take > a shower when he was awake.> Mood changes (irritability, sadness, emotional lability) - He has had > periods of intense moodiness. This seems to have died down recently, > but he does have ocassional bouts of crying for no reason.> Sleep disturbance - He has no problems with this...excellent sleeper!> Night- time bed wetting and/or day- time urinary frequency - Still in > pull-ups at night which are always wet when I get him up in the > morning. He drinks TONS throughout the day and pees in accordance with > the intake of fluids.> Fine/gross motor changes (e.g. changes in handwriting) - He has some > days where the gross motor goes out the window and he

is a total > clutz. Fine motor is harder to judge b/c he's so little and it's still > developing.> Joint pains - doesn't seem to be any evidence of this.> > So, what do you think? We just started working with Dr. Bock. He > switched us to Custom Probiotics D-Lactate-free blend. I don't believe > there are strep strains in it. Oh, and I forgot to mention that I had > strep about 13 times in 2 years in middle school and could very well be > a carrier...> > Here are my questions:> 1. What is the liklihood that my son is a PANDAS kid?> 2. Is it important to do testing for it?> 3. What is the most common protocol for treating PANDAS? (My son has a > TERRIBLE gut and is on SCD having just completed a round of > vanco/amphoB)> > Thanks in advance for reading this novel,> Stacie> Mom to Will, 3 1/2,

fighting hard to recover from ASD...and winning!>

[Guest guest]

IVIG costs us $2280 a month out of pocket, cost us a few grand to go out to CA to see Dr. Gupta and have 2 phone consults with him. Adds up quick. We also had to pay for Bicillin out of pocket because our deductible hadn't been met when it was prescribed and our copay for Zithromax isn't cheap!!! Throw in a few PANDAS profiles and some assorted supplements the DAN recommended just for the PANDAS and the total just crept on up there. The insurance reimburses some but not much and we're lucky to get what we do with his diagnosis.

Kerrie

Kerrie - What have you treated him with that cost so much money?

AOL Search: Your one stop for directions, recipes and all other Holiday needs. Search Now.

[Guest guest]

andria

PANDAS questions> > > Another biomed mom (who is also my son's behavior consultant)has > pointed out to me recently my son has some OCD issues. I always > chalked it up to typical autism related rigidity, but she assures me > that of all the spectrum kids she has and does work with, that his > insistance of sameness is out of "normal" for kids on the spectrum. > She mentioned PANDAS which I have read about but always dismissed > thinking that my son didn't have problems with OCD. So, in reviewing > his behaviors and symptoms here's what I've come up with: > > My son doesn't have "tics" but has had them in the past during a staph > aureus infection in his ear.> > My son has OCD symptoms: the fan in his bedroom MUST be on, he has been > wearing the same hat 24 hours a day since June, he MUST wear the same > red coat outside regardless of temperature, yada yada yada yada.> > As for the other 7 "symptoms" he has:> ADHD symptoms - hyperactivity, inattention, fidgety - unless he is > watching a favorite show, or working at the table during ABA, he DOES > NOT stop moving...ever. ..> Separation anxiety - He has the most INCREADIBLE separation anxiety > from me specifically. He is not happy with just Dad...has to be me. > Can't remember the last time I could use the bathroom by myself or take > a shower when he was awake.> Mood changes (irritability, sadness, emotional lability) - He has had > periods of intense moodiness. This seems to have died down recently, > but he does have ocassional bouts of crying for no reason.> Sleep disturbance - He has no problems with this...excellent sleeper!> Night- time bed wetting and/or day- time urinary frequency - Still in > pull-ups at night which are always wet when I get him up in the > morning. He drinks TONS throughout the day and pees in accordance with > the intake of fluids.> Fine/gross motor changes (e.g. changes in handwriting) - He has some > days where the gross motor goes out the window and he is a total > clutz. Fine motor is harder to judge b/c he's so little and it's still > developing.> Joint pains - doesn't seem to be any evidence of this.> > So, what do you think? We just started working with Dr. Bock. He > switched us to Custom Probiotics D-Lactate-free blend. I don't believe > there are strep strains in it. Oh, and I forgot to mention that I had > strep about 13 times in 2 years in middle school and could very well be > a carrier...> > Here are my questions:> 1. What is the liklihood that my son is a PANDAS kid?> 2. Is it important to do testing for it?> 3. What is the most common protocol for treating PANDAS? (My son has a > TERRIBLE gut and is on SCD having just completed a round of > vanco/amphoB)> > Thanks in advance for reading this novel,> Stacie> Mom to Will, 3 1/2, fighting hard to recover from ASD...and winning!>

[Guest guest]

He's made gains in some areas but some things are still a nightmare.

The worst is the vocal tics and leg movements he has. His focus hasn't come back and his behaviors leave a lot to be desired. On the other hand his hand writing is really improving, he's kicking butt in hooked on phonics and he's very physically affectionate again, which he lost for over a year.

The problem is the areas that are not improving are the areas that are keeping him from integrating at school and make it difficult to deal with him in public, which was never an issue before. It's hard to explain but while his vocabulary and use of pronouns has improved, his ability to answer a yes or no question or answer when given a choice is gone. He just repeats back what you say when you ask him a question. But if he wants something he can speak to you in a nice sentence. Doesn't make sense. Here's a kid that today says "mommy, I can have juice please and watch the christmas show please?" But if you say "do you want an apple or a pear?" he says "apple or pear." or sometimes he'll just say "yes." He used to be able to answer these questions.

Kerrie

Yikes. All of this and no results? I'm so sorry! That's got to be frustrating beyond belief.

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[Guest guest]

Penumbra,

The worst part was, he was always a very physically affectionate child. Loved to be held, cuddled, touched and I know that's not always the case with kids on the spectrum. We felt lucky to have that. Over night it was gone. But what made it even worse was he had the severe separation anxieties. So he'd flip out if we weren't in the same room as him, but don't touch him.

Kerrie

We lost eye contact, and language, but never physical affection. That must be brutal. Glad it's back! --penumbra > very physically affectionate again, which he lost for over a year. AOL Search: Your one stop for directions, recipes and all other Holiday needs. Search Now.

[Guest guest]

We lost eye contact, and language, but never physical affection.

That must be brutal. Glad it's back!

--penumbra

> very physically affectionate again, which he lost for over a year.