Re: Not Pandas but infecttion/illness effecting OCD

[Guest guest]

Yes, I have also heard that illness can make a child's OCD worse, even if they

do not have PANDAS. A doctor we had once explained it to me but I don't

remember his explanation. It had something to do with brain chemicals and all

that. He also said that just being exposed to someone else's illness could

cause a flare up, even if the child didn't get sick. Nice. I know that my

youngest daughter feels very out of control when she is sick or hurt. She

worries when bad things happen to her and she can't do anything to prevent them.

Being sick is out of her control, as is an injury. It hurts or feels bad and

she can't do anything but ride it out. The OCD thoughts start in about whether

or not she'll get better or sick or hurt again and BOOM! pretty soon her OCD is

off the charts. Kelley in NV

Not Pandas but infecttion/illness effecting OCD

People have mentioned before that sickness cold/flu seems to increase OCD in

their kids.

My son doesn't have Pandas-he only had strep once, was tested (because of what I

read here) and his OCD was not sudden out of blue onset.

But when he gets sick, he is worse. He has an infected toe of all things and

yesterday was just diffiult for both of us.

He is on Luvox which works wonders and has done CBT/ERB sucessfully. Of course,

we have our ups and downs-just life withOCD. \

I was wondering if anyone else has noticed this and if anyone in the medical

world is exploring this

Thanks

[Guest guest]

When we were exploring PANDAS, this was a big question for us too. And many

professionals told me about this pattern for traditional OCD - I think it is

true. I wish they would study this in a scientific manner - is it just a

reaction to illness - such as we all feel cranky when ill? Or is there

something biological going on?

For us, the difference was in degree. If OCD were rated on a scale of 1-100,

our dd would go from a 5 to a 75 in a matter of days. It was an explosion of

symptoms that would completely rock our world. We finally watched a lecture by

Swedo, and saw a pattern of traditional OCD waxing and waning - and then a

PANDAS pattern of waxing & waning - measured by the Y-Boc scale. That really

helped us to understand that there was a difference in what we were

experiencing. We started to keep track of her OCD on a daily basis, so that we

could see if there were patterns over time. We were very very hesitant to treat

her with antibiotics, without a high strep titer test. It was finally the

dramatic pattern of her OCD, the overnight onset, the response to steroids, and

the identification of very mild chorea in her fingers by a Neurologist that

finally convinced us to try antibiotics for her.

We are huge supporters of ERP, and our daughter is very motivated, due to her

successes. Our struggle was always the question of why, when she worked so very

hard, would the OCD dial up by 10-fold levels? Now that we have combined ERP

with medical treatment, the ease that she can handle things is significantly

better, and we are hopeful that we can better manage any future onsets.

>

> People have mentioned before that sickness cold/flu seems to increase OCD in

their kids.

> My son doesn't have Pandas-he only had strep once, was tested (because of what

I read here) and his OCD was not sudden out of blue onset.

> But when he gets sick, he is worse. He has an infected toe of all things and

yesterday was just diffiult for both of us.

> He is on Luvox which works wonders and has done CBT/ERB sucessfully. Of

course, we have our ups and downs-just life withOCD. \

> I was wondering if anyone else has noticed this and if anyone in the medical

world is exploring this

> Thanks

>

[Guest guest]

Yes, we see this with our daughter, age 9. She is usually not worse when she's

really sick; her compulsions and anxiety go up as she begins to recover. She is

currently getting over a nasty virus (possibly H1N1) and her dad just came home

from a trip. No meltdowns thus far, but the anxiety is way up. I suspect it is

similar to the reason I get sick many years at Christmas. I am stressed, short

on sleep, trying to get everything done and then wonder why am I getting sick

again. When the kids are stressed by illness, pain, changes in routine (staying

home sick), their symptoms go up.

>

> Subject: Not Pandas but infecttion/illness effecting OCD

> To:

> Date: Tuesday, November 10, 2009, 7:46 AM

> People  have mentioned before

> that sickness cold/flu seems to increase OCD in their kids.

> My son doesn't have Pandas-he only had strep once, was

> tested (because of what I read here) and his OCD was not

> sudden out of blue onset.

> But when he gets sick, he is worse. He has an infected toe

> of all things and yesterday was just diffiult for both of

> us.

> He is on Luvox which works wonders and has done CBT/ERB

> sucessfully. Of course, we have our ups and downs-just life

> withOCD. \

> I was wondering if anyone else has noticed this and if

> anyone in the medical world is  exploring this

> Thanks

>

>

>

>

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[Guest guest]

Same with us. Also my daughter is very avoidant and after

being out of school for awhile she has a very hard time

going back. She has lots of fears. I asked our pschiatrist

if we could have a plan for a gradual return to school

after illness but she wanted to take a wait and see position. I wish she

wouldn't have done that. It is better to have a gradual

exposure planned in.

I agree with what you said about the stress of being sick

the trigger of anxiety.

Pam

>

> >

> > Subject: Not Pandas but infecttion/illness effecting OCD

> > To:

> > Date: Tuesday, November 10, 2009, 7:46 AM

> > People  have mentioned before

> > that sickness cold/flu seems to increase OCD in their kids.

> > My son doesn't have Pandas-he only had strep once, was

> > tested (because of what I read here) and his OCD was not

> > sudden out of blue onset.

> > But when he gets sick, he is worse. He has an infected toe

> > of all things and yesterday was just diffiult for both of

> > us.

> > He is on Luvox which works wonders and has done CBT/ERB

> > sucessfully. Of course, we have our ups and downs-just life

> > withOCD. \

> > I was wondering if anyone else has noticed this and if

> > anyone in the medical world is  exploring this

> > Thanks

> >

> >

> >

> >

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

> >

> > Our list archives feature may be accessed at: 

http://health.groups.yahoo.com/group//

> > by scrolling down to the archives calendar .  Our links

> > may be accessed at

http://health.groups.yahoo.com/group//links

> > .  Our files may be accessed at

> > http://health.groups.yahoo.com/group//files

> > .

> > Our list advisors are Gail B. , Ed.D.(http://www.ocdawareness.com ),

Tamar Chansky, Ph.D.( http://www.worrywisekids.org ), and Dan Geller, M.D.

> > (http://www2.massgeneral.org/pediatricpsych/staff/geller.html

> > ). You may ask a question of any of these mental health

> > professionals by inserting the words " Ask Dr.(insert name) "

> > in the subject line of a post to the list.  Our list

> > moderators are Castle, Judy Chabot, BJ Closner, and

> > Barb Nesrallah.   Subscription issues or

> > suggestions may be addressed to Louis Harkins, list

> > administrator, at louisharkins@...

> > .   Our group and related groups are listed

> > at http://health.groups.yahoo.com/group/ocdsupportgroups/links

> > .  OCF treatment providers list may be viewed at

http://www.ocfoundation.info/treatment-providers-list.php

> > .

> > NLM-NIH Drug Information Portal may be viewed at

> >

http://druginfo.nlm.nih.gov/drugportal/drugportal.jsp?APPLICATION_NAME=drugporta\

l

> > .  OCF recommended reading list may be viewed at

http://www.ocfoundation.org/ocd-oc-spectrum-disorders-book-list.html

> > .

> >

[Guest guest]

With (now age 20) I noted his OCD would spike more with a fever. Not

with illnesses without a fever, or so it seemed. And the one time, that we

knew, he had strep it really got worse, took weeks to settle back down.

Sometimes took a month after the other fevers too.

However, over the years reading posts, some parents have commented that when

their child is sick (and I mean feeling lousy), the OCD doesn't seem to be

around so much, the behaviors/rituals aren't being done (I imagine because they

feel so sick?).

I did have tested by bloodwork for strep after his OCD got much worse

once...I think it was when his OCD had returned after stopping Celexa months

before and he was sick a couple months later and OCD was getting even worse....

But titers were said to be within normal range or showed that he didn't have

strep. I even had his thyroid tested too at that time.

>

> People have mentioned before that sickness cold/flu seems to increase OCD in

their kids.

> My son doesn't have Pandas-he only had strep once, was tested (because of what

I read here) and his OCD was not sudden out of blue onset.

> But when he gets sick, he is worse. He has an infected toe of all things and

yesterday was just diffiult for both of us.

> He is on Luvox which works wonders and has done CBT/ERB sucessfully. Of

course, we have our ups and downs-just life withOCD. \

> I was wondering if anyone else has noticed this and if anyone in the medical

world is exploring this

> Thanks

>

[Guest guest]

My daughter (age 10) absolutely gets worse when exposed to viruses. I don't

think it's the anxiety of " will I get sick " because a lot of times - actually

the majority of times - I have noticed the burst of OCD and then a few days

later found out that someone was sick in her class at school - usually with

strep. She didn't realize why the person was out so that would kill the theory

(for my particular daughter) that she was anxious about getting sick. (I have

her teacher inform me anytime someone has been out with possible strep). My

daughter was told that she had non-PANDAS OCD, but the correlation of OCD bursts

and the viruses kept nagging at me. I finally had her blood sent off to

Madeleline Cunningham at Univ. of OK for the research study and her CaM Kinase

II numbers came in at the upper levels for PANDAS. She has only been diagnosed

with strep once and that was well into her OCD, but when she was diagnosed with

strep she was having absolutely no strep symptoms - no sore throat, no fever.

So who knows how many times she could have had strep prior to that and we never

caught it! From what I understand the titers only tell you if you have had a

recent strep infection.

> >

> > People have mentioned before that sickness cold/flu seems to increase OCD in

their kids.

> > My son doesn't have Pandas-he only had strep once, was tested (because of

what I read here) and his OCD was not sudden out of blue onset.

> > But when he gets sick, he is worse. He has an infected toe of all things and

yesterday was just diffiult for both of us.

> > He is on Luvox which works wonders and has done CBT/ERB sucessfully. Of

course, we have our ups and downs-just life withOCD. \

> > I was wondering if anyone else has noticed this and if anyone in the medical

world is exploring this

> > Thanks

> >

>

>

>

>

>

[Guest guest]

Dina,

Just today, I prepared a packet for her pediatrician with the results from the

Cunningham study as well as a list of doctors (including Dr. Latimer and Dr. K

out of Chicago) that he could consult with as to treatment options. Thankfully,

her pediatrician is PANDAS sympathetic, but he is also very cautious and would

not prescribe antibiotic treatment without a positive strep test. When she was

positive a few months ago, he did prescribe a 30 day course of Amoxicillian,

which took her OCD from unbearable to mild. However, tics surfaced at that

time. I have read that you have to play around with different antibiotics to

see which one is potent enough to work as well as possibly do a steriod burst to

relieve inflammation. I understand that Dr. Cunningham is only running this

research test for a month or so more, possibly, so I recommend if you even think

your child may be PANDAS to contact them for a kit.

> >

> >

> > My daughter (age 10) absolutely gets worse when exposed to viruses. I

> > don't think it's the anxiety of " will I get sick " because a lot of

> > times - actually the majority of times - I have noticed the burst of

> > OCD and then a few days later found out that someone was sick in her

> > class at school - usually with strep. She didn't realize why the

> > person was out so that would kill the theory (for my particular

> > daughter) that she was anxious about getting sick. (I have her teacher

> > inform me anytime someone has been out with possible strep). My

> > daughter was told that she had non-PANDAS OCD, but the correlation of

> > OCD bursts and the viruses kept nagging at me. I finally had her blood

> > sent off to Madeleline Cunningham at Univ. of OK for the research

> > study and her CaM Kinase II numbers came in at the upper levels for

> > PANDAS. She has only been diagnosed with strep once and that was well

> > into her OCD, but when she was diagnosed with strep she was having

> > absolutely no strep symptoms - no sore throat, no fever. So who knows

> > how many times she could have had strep prior to that and we never

> > caught it! >From what I understand the titers only tell you if you

> > have had a recent strep infection.

> >

> Kim, so what did you do with that information? Are you treating her as

> a PANDAS case? Is she responding to that? I ask because I know my DD's

> strep titers were really high when she first developed OCD at age 7 but

> I never pursued it. Her OCD is terrible right now and we are

> surrounding by sick people.

>

> Dina

>

[Guest guest]

Ohhhhhhhhh yes!

Josh is always worse (especially when younger) when sick. Seems anything that

upsets the flow of things had/has the potential to set things off. The good

news is, once the illness has passed, his OCD improves too.

BJ

>

> People have mentioned before that sickness cold/flu seems to increase OCD in

their kids.

> My son doesn't have Pandas-he only had strep once, was tested (because of what

I read here) and his OCD was not sudden out of blue onset.

> But when he gets sick, he is worse. He has an infected toe of all things and

yesterday was just diffiult for both of us.

> He is on Luvox which works wonders and has done CBT/ERB sucessfully. Of

course, we have our ups and downs-just life withOCD. \

> I was wondering if anyone else has noticed this and if anyone in the medical

world is exploring this

> Thanks

>