Re: New OCD diagnosis-need info/ideas

[Guest guest]

Hi,

I'm so sorry to hear what you are going through. But I can relate to the panic

you must be feeling. There are only a few doctors in the country that are truly

experts in the PANDAS/PITAND/PANS (Ps) arena and one happens to be in the

Chicago area. My advice to you would be to contact him a.s.a.p. to get his

opinion. His name is Dr. Kavokavich (sp?) and his website is

www.webpediatrics.com. Even if you are unsure if you want to see him, just make

the appointment today anyway. There will most likely be a wait and you can

always cancel if you decide not to.

The sudden onset is classic of the Ps. I would also seriously question the

professionals you are working with if they have not heard of PANDAS. While it is

a relatively newly recognized disorder (within the last fifteen years), and

there are few that are truly on top of it, it has a good deal of press in the

literature within the past year or two, so most people that treat OCD in some

way, shape or form should be aware of its existence and at least think of it

when the onset is so sudden.

If I were you, I would start to keep a journal, perhaps even a chart, where you

track her symptoms each day (maybe ranking on a scale of 1 -5 or 10 indicating

severity. I can send you some sample charts it you'd like (just email me through

this site with your email address). That way you can see if she's responding to

any medication you do give her. One thing I do want to caution you about is the

reaction some P kids have to SSRIs. While they do help some (at a low dose), for

many, they make things worse. I don't want to scare you, just make you aware.

Hopefully they will help your daughter.

When we were at the beginning of our journey and were deciding whether or not to

medicate, we decided we only wanted to pursue one type of medication at a time,

so we would know what was working. So if you decide to go the P route and treat

with antibiotics, you may want to consider stopping the SSRI. That's just my

opinion...and I'm not a doctor...so take it for what it's worth. Perhaps discuss

the thought with whomever you entrust with your child's care for treating.

Briefly, my dd was diagnosed two years ago at the age of seven with OCD. Her

therapist recommended testing for strep. The pediatrician did a throat culture

that came back negative. They both dismissed PANDAS at that point. We pursued

therapy alone initially, but our dd continued to decline. Three months later,

just as we were about to start an SSRI, we learned of a child in her classroom

with sudden onset of tics and other PANDAS symptoms, who tested positive for

strep. We decided to push for a trial of abx and strep blood tests. We also

participated in the Cunningham study (which unfortunately is now closed). She

improved slightly on the abx (but they were stopped after two weeks and she

declined again), her blood tests were positive (but no physical symptoms of

strep) and the Cunningham results were in the high PANDAS range. After that she

went back on abx and improved very rapidly. She did great for about six months,

then declined again. We eventually discovered she also had Bartonella and

Ehrlichiosos (two tick born illnesses, like Lyme). Since we started treating for

those (with a combination of antibiotics) at the end of March, she has improved

slowly, with some ups and downs. But I'm happy to say she is now at about 95%!

If you want any help navigating the murky waters of PANDAS/PITAND/PANS, please

let me know. I'll do the best I can to help.

Kara

>

> My 13 year old daughter was just diagnosed with OCD. She started school 8th

grade and 3 days into the year, imploded. Over this last 3 weeks many OCD

symptoms and rituals have surfaced along with complete inablilty to handle

school, makeup work at all. Right now its a big deal if she can get dressed. She

has become a shadow of her former self. This has been heartbreaking to see her

deteriate and regress and her fear/panic episodes are frightening. My sister

found this group for me along and the Pandas info and I cant imagine any other

explanation for her immediate downward spiral. We saw a phychiatrist who said

its sever (mentioned hospitalization, Yikes!) and my daughter is now taking

antidepressents for last 5 days. Been to phychologist once so far. Neither

person seemed to even consider the Pandas idea when I brought it up. Just

wondering if I should persue the medical aspect of this to rule this out on my

own. Im in the Chicago area so Im not sure what medical Dr. I should see. I

know my currant pediatrician won't have clue about this and wont know what to

look for.

> I also want to know if the child has extreme anxiety, is it best to let the

medication take effect before begining therapy or should therapy begin

immediately? I would appreciate any help or suggestions as this is all new to

us.

>

[Guest guest]

I'm not too sure about PANDA'S - its worth pursuing.

My experience is that therapy will not work until the meds take at least some of

the edge off things for her. She just doesn't have the ability to fight it when

she is in the middle of the storm.

Make sure the therapist knows Cognitivbe Behavior Therapy - the ONLY proven

treatment.

Best of luck - there is light at the end of the tunnel!

>

> My 13 year old daughter was just diagnosed with OCD. She started school 8th

grade and 3 days into the year, imploded. Over this last 3 weeks many OCD

symptoms and rituals have surfaced along with complete inablilty to handle

school, makeup work at all. Right now its a big deal if she can get dressed. She

has become a shadow of her former self. This has been heartbreaking to see her

deteriate and regress and her fear/panic episodes are frightening. My sister

found this group for me along and the Pandas info and I cant imagine any other

explanation for her immediate downward spiral. We saw a phychiatrist who said

its sever (mentioned hospitalization, Yikes!) and my daughter is now taking

antidepressents for last 5 days. Been to phychologist once so far. Neither

person seemed to even consider the Pandas idea when I brought it up. Just

wondering if I should persue the medical aspect of this to rule this out on my

own. Im in the Chicago area so Im not sure what medical Dr. I should see. I

know my currant pediatrician won't have clue about this and wont know what to

look for.

> I also want to know if the child has extreme anxiety, is it best to let the

medication take effect before begining therapy or should therapy begin

immediately? I would appreciate any help or suggestions as this is all new to

us.

>

[Guest guest]

Hi, welcome!

I see Kara gave you a PANDAS doctor name that is actually in your area (yay!) so

I'd also go ahead and make that appt, could help you rule it in or out.

The main difference, my thoughts, is that if it is PANDAS (or PANS is apparently

the newer acronymn) then your daughter will most likely be treated with

antibiotics. Some children that fall under PANS do seem to have some OCD

linger/stay, however some luckily have the symptoms go away when treated; on the

downside, may return at times too due to illness (e.g., strep virus going around

school).

The therapy will work the same way and is needed no matter the reason the OCD

was triggered. Many do need the meds to begin to help before therapy can begin,

depends on the severity and just how well the child can participate now.

Probably won't know that until she sees a therapist a time or two. You and she

can still be learning just how to fight OCD, how therapy helps, the tools used,

etc. Basically you will have a list of her behaviors, ranking in a hierarchy

from least (1) anxiety causing to most (10) and then she (and therapist) would

choose 1, 2, 3 things lower to start working on bossing back.

We couldn't find anyone experienced with OCD where we live, so did the same on

our own, chose 1 or 2 things to work on, ignored the rest.

For school, you should pursue getting either an IEP or a 504 Plan for her due to

her OCD. Either plan will set up accommodations and/or modifications for her to

use due to whatever OCD is interfering with. I will say that for us, I had to

write 's homework for him. He could dictate to me, but OCD really

affected his writing. Reading too, I had to read it all to him. We had in his

504 Plan that I could write for him, would read to him, he could bring home all

unfinished work from school, could turn things in late....

Hang in there, there's a lot to do right now what with setting up appts and

school, etc., but you'll get past all this initial stuff and things WILL be

better down the road!!

Glad you found our group,

single mom, 3 sons

, now 22, with OCD, dysgraphia, Aspergers

(his OCD started in 6th grade)

>

> My 13 year old daughter was just diagnosed with OCD. She started school 8th

grade and 3 days into the year, imploded. Over this last 3 weeks many OCD

symptoms and rituals have surfaced along with complete inablilty to handle

school, makeup work at all. Right now its a big deal if she can get dressed. She

has become a shadow of her former self. This has been heartbreaking to see her

deteriate and regress and her fear/panic episodes are frightening.

[Guest guest]

Thank you for responding and your helpful suggestions.  The Dr. has offices

close by and the website has much info pertaining to Pandas /Pitand.  I will

call to make an appointment. (I just noticed in the website info that if the

first clinical epsiode is detected after age of 10 it is unlikely a true

initial episode but a recurent one.)  I wonder if this is why the

phychiatrist/phychologist did not support/suggest pandas to me initially?   At

this point I think its best to look at all aspects expecially since this came up

so suddenly.

 

Im so glad to hear about your familys journey with OCD and to hear how well your

daughter is doing at this point.   I dont know of any child with this issue

so it helps tremendously to provide a ray of hope to us at this time. 

 

I also am not a fan of meds but felt it was necessary due to the cripling effect

of all the fear and panic my daughter was experienceing.  I like the idea of

one at at time. It makes sense.  I began a journal but was trying to write

everything down and its difficult to keep it up with all the extra activites and

emotional upheaval thats going on.  I have been asking her throughout the day

how she feels on a scale from 1-10.  I will add a symptom element to it as

well.

 

I am very greatful for all information and suggestions!!  Thank you!

 

 

 

________________________________

To:

Sent: Friday, September 30, 2011 7:27 AM

Subject: Re: New OCD diagnosis-need info/ideas

 

Hi,

I'm so sorry to hear what you are going through. But I can relate to the panic

you must be feeling. There are only a few doctors in the country that are truly

experts in the PANDAS/PITAND/PANS (Ps) arena and one happens to be in the

Chicago area. My advice to you would be to contact him a.s.a.p. to get his

opinion. His name is Dr. Kavokavich (sp?) and his website is

www.webpediatrics.com. Even if you are unsure if you want to see him, just make

the appointment today anyway. There will most likely be a wait and you can

always cancel if you decide not to.

The sudden onset is classic of the Ps. I would also seriously question the

professionals you are working with if they have not heard of PANDAS. While it is

a relatively newly recognized disorder (within the last fifteen years), and

there are few that are truly on top of it, it has a good deal of press in the

literature within the past year or two, so most people that treat OCD in some

way, shape or form should be aware of its existence and at least think of it

when the onset is so sudden.

If I were you, I would start to keep a journal, perhaps even a chart, where you

track her symptoms each day (maybe ranking on a scale of 1 -5 or 10 indicating

severity. I can send you some sample charts it you'd like (just email me through

this site with your email address). That way you can see if she's responding to

any medication you do give her. One thing I do want to caution you about is the

reaction some P kids have to SSRIs. While they do help some (at a low dose), for

many, they make things worse. I don't want to scare you, just make you aware.

Hopefully they will help your daughter.

When we were at the beginning of our journey and were deciding whether or not to

medicate, we decided we only wanted to pursue one type of medication at a time,

so we would know what was working. So if you decide to go the P route and treat

with antibiotics, you may want to consider stopping the SSRI. That's just my

opinion...and I'm not a doctor...so take it for what it's worth. Perhaps discuss

the thought with whomever you entrust with your child's care for treating.

Briefly, my dd was diagnosed two years ago at the age of seven with OCD. Her

therapist recommended testing for strep. The pediatrician did a throat culture

that came back negative. They both dismissed PANDAS at that point. We pursued

therapy alone initially, but our dd continued to decline. Three months later,

just as we were about to start an SSRI, we learned of a child in her classroom

with sudden onset of tics and other PANDAS symptoms, who tested positive for

strep. We decided to push for a trial of abx and strep blood tests. We also

participated in the Cunningham study (which unfortunately is now closed). She

improved slightly on the abx (but they were stopped after two weeks and she

declined again), her blood tests were positive (but no physical symptoms of

strep) and the Cunningham results were in the high PANDAS range. After that she

went back on abx and improved very rapidly. She did great for about six months,

then declined again. We eventually

discovered she also had Bartonella and Ehrlichiosos (two tick born illnesses,

like Lyme). Since we started treating for those (with a combination of

antibiotics) at the end of March, she has improved slowly, with some ups and

downs. But I'm happy to say she is now at about 95%!

If you want any help navigating the murky waters of PANDAS/PITAND/PANS, please

let me know. I'll do the best I can to help.

Kara

>

> My 13 year old daughter was just diagnosed with OCD. She started school 8th

grade and 3 days into the year, imploded. Over this last 3 weeks many OCD

symptoms and rituals have surfaced along with complete inablilty to handle

school, makeup work at all. Right now its a big deal if she can get dressed. She

has become a shadow of her former self. This has been heartbreaking to see her

deteriate and regress and her fear/panic episodes are frightening. My sister

found this group for me along and the Pandas info and I cant imagine any other

explanation for her immediate downward spiral. We saw a phychiatrist who said

its sever (mentioned hospitalization, Yikes!) and my daughter is now taking

antidepressents for last 5 days. Been to phychologist once so far. Neither

person seemed to even consider the Pandas idea when I brought it up. Just

wondering if I should persue the medical aspect of this to rule this out on my

own. Im in the Chicago area so Im not sure

what medical Dr. I should see. I know my currant pediatrician won't have clue

about this and wont know what to look for.

> I also want to know if the child has extreme anxiety, is it best to let the

medication take effect before begining therapy or should therapy begin

immediately? I would appreciate any help or suggestions as this is all new to

us.

>