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Re: PANS ssri question

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Hi I too have a 7 yr old with OCD and she has anger outbursts as well. Does

anyone know why there is an anger piece to this? That is worse than the actual

OCD

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> Hi, my 6 yr old has OCD which is terribly worsened by PANS!

> He is on antibiotics long term also clonidine and

> Melatonin to sleep and ibuprofren seems to help

> During the day with his anger outbursts. I can't

> Stand watching him suffer with constant obsessive

> Thoughts and I wanted to know if anyone else

> Has there child with PANS or PANDAS on an ssri.

> I always just expected he would need Prozac

> ( like my husband and myself) to control the OCD but

> Now it's complicated by the PANS. I've read that

> Ssris can make PANS worse. Please help, any advice

> Or experiences with this would be greatly appreciated.

> Thanks, debbie

>

>

>

>

>

>

>

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Is the anger only in relation to when she can't perform her compulsions or avoid

what she might have anxiety about, or is she raging for indiscriminate reasons?

Temper with regard to OCD should only occur if the person feels tremendous

anxiety and wants you not to get in the way of her/him doing what they feels is

needed to relieve this. On the other hand, just because someone with OCD has a

tantrum, doesn't mean you should allow it. There should be consequences for bad

behavior or else you are going to wind up with two problems: how to help the

OCD and how to unlearn the concept that raging gets what is wanted. Thus, the

best thing is to get help from an OCD professional and have your child

understand what OCD is and why it's best not to give into it. Most kids seem to

do well with naming their OCD something like " bully " or 'Crazy guy " or

something. They then work with the professional to make a list of which fears

and resulting rituals/compulsions will be worked on. If your child is working

on this, then it may be preferred to allow the rituals higher on the hierarchy

while he/she is working her way up. Also, with many with OCD, medication may be

necessary if the fears seem so real that the exposures and response prevention

doesn't work because she can't go along with it. For me and my kids, it has

always been medication that allowed for this.

Re: PANS ssri question

Hi I too have a 7 yr old with OCD and she has anger outbursts as well. Does

anyone know why there is an anger piece to this? That is worse than the actual

OCD

Sent from my iPhone

> Hi, my 6 yr old has OCD which is terribly worsened by PANS!

> He is on antibiotics long term also clonidine and

> Melatonin to sleep and ibuprofren seems to help

> During the day with his anger outbursts. I can't

> Stand watching him suffer with constant obsessive

> Thoughts and I wanted to know if anyone else

> Has there child with PANS or PANDAS on an ssri.

> I always just expected he would need Prozac

> ( like my husband and myself) to control the OCD but

> Now it's complicated by the PANS. I've read that

> Ssris can make PANS worse. Please help, any advice

> Or experiences with this would be greatly appreciated.

> Thanks, debbie

>

>

>

>

>

>

>

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Hi Debbie,

I have no experience with this, but just wanted to offer what I've read from

others. From what I understand, an ssri can be added at some point, but after

the antibiotics have had a chance to do their job. Think certain time line, so

you can see full effect of antibiotics, perhaps.

Then ssri is added if needed, to do ERP, for remaining O/C. I seem to recall

one parent saying they added an ssri because the anxiety was so high, low dose,

while still in the initial stages of antibiotics. Probably one of those things

you just have to try and see.

I can tell you that I think our son may have a PANDAS?PANS component, overnight

severe onset, was a strep carrier, other stuff... He was really med sensitive

at the outset too. He was ok on the lowest dose of ssri, and still is. Got

into big problems on higher doses.

So, talk with your doctor, maybe trying a very low dose might be something to

try for some relief, since the antibiotics can take quite a while for some.

Hopefully others " in the know " will jump in soon.

Warmly,

Barb

>

> Hi, my 6 yr old has OCD which is terribly worsened by PANS!

> He is on antibiotics long term also clonidine and

> Melatonin to sleep and ibuprofren seems to help

> During the day with his anger outbursts. I can't

> Stand watching him suffer with constant obsessive

> Thoughts and I wanted to know if anyone else

> Has there child with PANS or PANDAS on an ssri.

> I always just expected he would need Prozac

> ( like my husband and myself) to control the OCD but

> Now it's complicated by the PANS. I've read that

> Ssris can make PANS worse. Please help, any advice

> Or experiences with this would be greatly appreciated.

> Thanks, debbie

>

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Children with PANS/PANDAS can be on an SSRI. As with any SSRI, you take the

lowest dose that is effective. Generally we read that low doses work best with

PANS/PANDAS. But as with any person with OCD, you're going to trial the doses

and find the most effective (go too high, get unwanted effect, than lower dose

back...). I think with PANS/PANDAS, its more " behavioral " with too high a dose

of SSRI for them, so something you'd be sure to notice. But even non-PANS

children can have effects like that. Sooo...guessing you'd just trial the low

dose for a while, not work up on the dosage at the pace a non-PANS child would.

If you've just begun an antibiotic/meds with him, you probably want to wait

(hard I know) to give those time to work, see how much relief he gets. Adding

another med too soon, you won't know which is working (are the first starting to

take effect, or is it the 2nd helping...). If he's been on his current combo a

while, then, sure, ask about an OCD med. There are PANS/PANDAS kids who do take

SSRIs and benefit from them.

Therapy - copied from the OCDF website info:

For many PANS children, the suddenness of onset and the migratory nature of the

obsessions/compulsions can make Exposure and Response Prevention therapy or ERP

challenging; however, a combination of a medical intervention and traditional

ERP might be the best course of action at this point in time. For some children

an initial treatment with antibiotics or IVIG results in significant relief of

symptoms. For those with slow or partial remission of symptoms, ensuring that

ERP is included seems to be critical. Children develop habits and fears quickly

and they may use ERP treatment to teach their brain to ignore the irrational

fear signals they have been receiving. ERP teaches a child concrete tools to

overcome OCD thoughts on a daily basis. Many clinicians find that learning ERP

allows the entire family to function more calmly during future exacerbations,

while seeking medical help. Some recent but preliminary work by a group at

University of South Florida found strong effects for this approach in children

with PANDAS (Drs. Storch & ).

Hang in there, things will get better! It's hard waiting though!

>

> Hi, my 6 yr old has OCD which is terribly worsened by PANS!

> He is on antibiotics long term also clonidine and

> Melatonin to sleep and ibuprofren seems to help

> During the day with his anger outbursts. I can't

> Stand watching him suffer with constant obsessive

> Thoughts and I wanted to know if anyone else

> Has there child with PANS or PANDAS on an ssri.

> I always just expected he would need Prozac

> ( like my husband and myself) to control the OCD but

> Now it's complicated by the PANS. I've read that

> Ssris can make PANS worse. Please help, any advice

> Or experiences with this would be greatly appreciated.

> Thanks, debbie

>

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