Psych meds for OCD

[dcmom]

My kids had pandas exacerbations in Dec. They have improved, yet still have pretty severe OCD. We are exploring Lyme treatment, so unfortunately feel we have to hold off on steroids- the magic bullet for us in the past.

 

I am not seeing a light at the end of this tunnel, and the OCD is really causing the girls lots of misery. They are starting ERP therapy next week- which will hopefully help.

 

The psychologist, my SIL (pharmacist), and DH are all asking why not try psych meds for the OCD. We have never needed them before- as pandas treatment has usually offered relief. I know most on this forum have not had great results- so I have been resistant, plus have not wanted to muddy the waters.

 

What I am looking for are studies, or technical medical info on why these meds don't work for our kids.

 

I am also interested in if anyone has had their childs OCD helped by meds.

 

Thanks!

[JAG10]

What we experienced is called behavioral activation. I think it is Dr. Murphy who writes a lot about this with SSRIs and PANDAS.

 

For my girl, the meds never worked the way they were supposed to work. If an SSRI was supposed to take several weeks to build up in her system, we would see a change, usually positive, right away-like the next day or the day after. Then, sometimes a week later, sometimes longer, we would see an uptick in behavioral regression, silly, goofy behavior (NOT yeast: it always coincided with the meds) and then the positive benefit of the SSRI would disappear before it was supposed to have even begun.

 

I have heard some psychs say if you go really, really slow and low with the dose you can avoid this, but that was not our experience.

 

Just one other thing I'll throw in this....once you have psych meds in the picture, it is really hard to know what is going on with your child. With every change, you're left wondering...are they sick? is it the meds? did the meds "poop-out?" If behavioral symptoms are your only signal for strep, it gets very muddy.

 

I wouldn't say they NEVER helped AT ALL, just they never helped consistently or without causing other problems that were just as bad as the ones you give the meds for in the first place.

[Kiera]

My ds 8 was already on an SSRI for anxiety disorder prior to The PANDAS exacerbation and subsequent diagnosis. At the time, not knowing the new onset OCD was PANDAS, we initially went up on the medication (OCD is a symptom of anxiety) to no avail. Then we tapered it off, thinking it lost it's effectiveness and started a new SSRI and gradually increased it, no immediate results, gradually his symptoms subsided but I think this was just the natural progression of the PANDAS as the antibodies died off, and NOT a result of the SSRI, as 4 months later, another strep infection and back to OCD worse than ever, this time we didn't even bother playing with the SSRI dose (still on it for general anxiety, low dose) figured out it was PANDAS, started steroid and antibiotics and we're at 100% right now. All in all, I think the SSRI was totally ineffective to treat the OCD in my ds's case. Treating the root cause is the way to go.

[trggirl]

It seems like there was a study that SSRI's activated Camkinase II. If your daughter happens to have an elevated CamK already, I wouldn't think SSRI's would be a good thing. Maybe someone can post a link if they have that study.

[smartyjones]

I have heard some psychs say if you go really, really slow and low with the dose you can avoid this, but that was not our experience.

 

Just one other thing I'll throw in this....once you have psych meds in the picture, it is really hard to know what is going on with your child. With every change, you're left wondering...are they sick? is it the meds? did the meds "poop-out?" If behavioral symptoms are your only signal for strep, it gets very muddy.

 

 

dcmom -- i know you are looking for real studies but i am going to offer only my opinion. we never did try psych meds for ds. first, he was under age 6 and nothing is approved. the pscyh we were seeing at the time does lectures etc for drug companies and does not recommend them for under 6. however, as he was approaching 6, she suggested it. she goes VERY low and slow with the dosing. she is a pandas-knowledgeable psych and believes IF AND WHEN the infections is being properly addressed, then to treat the OCD etc as you would in a psych manner. unfortunately, i think that's the big kicker unknown -- how to be sure that 'if and when' are properly exhausted. she believed it was b/c he was testing neg on throat cultures. i still can't understand how we know when the strep is really eradicated and wonder what role other infections that aren't even well discussed play.

 

i chose not to do this for the very reason JAG suggests. i just felt it was adding something else into a mix that we didn't fully understand.

 

our current integrative MD believes low serotonin may very well play into the behaviors. however, he believes the infections and unbalance in the body are to blame for the low serotonin so focuses on addressing those issues and usually sees the serotonin correct itself. both my kids have tested through a type of ART testing as low serotonin.

 

so, if we had put ds6 on ssri, would we have seen positive results? possibly. i don't think we would have been properly addressing what's out of balance with his system.

 

could it be a short term solution to get over a hump while addressing the 'real' issues just like any other accomodations? possibly. is there an easy way to know when to modify that as an accomodation?

 

i think these decisions are so difficult and there is not hard and fast rules to guide us. hopefully, ocdmom will chime in b/c i think she's very well versed on studies and results in her child.

 

i was so impressed with Dr. Leckman at the OCD conference. does he have opinions on this?

 

good luck! i think you have such good instinct about your girls -- trust what you think.

Edited February 11, 2011 by smartyjones

[thereishope]

I'd say try the ERP first. When my son saw a psychiatrist for his residual OCD, we were told to give therapy a certain amount of time first then we'd discuss Zoloft if he made no progress. My son was 5. At the time, I didn't know the issues PANDAS kids could have with psych meds. Luckily, my son did well enough with therapy that we never needed to discuss possible Zoloft again.

Edited February 11, 2011 by Vickie

[dcmom]

I agree with all of the above- thanks.

 

I do have Tanya Murphy's study about activation with SSRI s. I am pretty certain the docs who "get" pandas are not in favor of these meds.

 

I would just like something to point to, or say, rather than just anecdotal stories of why they haven't worked. I do not/ have not wanted to do them just to mask a portion of the problem and muddy the waters- so we don't know what is helping.

 

Yet- my kids are still suffering, and some thoughtful concerned people have suggested exploring the idea. While my gut is saying NO WAY, I do want to be sure to give it careful consideration, and would like to speak to the issue clearly.

 

Would there be options other than SSRI's.

[peglem]

I think the psych meds muddy the water too much. PANDAS makes the kids so unstable its always hard to tell what the med is doing vs what the PANDAS and/or immune treatment is doing. And its hard to effectively stabelize PANDAS kids when their condition has so many variables.

 

That being said, I think levels of desperation and misery have a lot to do with this decision. And sometimes its a matter of getting some relief before you hit the breaking point.

[smartyjones]

Would there be options other than SSRI's.

 

 

have you explored 5-HTP? i don't know that much about it but think people turn to it as a sub for ssri?

[MomWithOCDSon]

While I can appreciate a hesitancy to move toward psych drugs, we've had a different experience, and that's mostly what I have to go on.

 

When DS was diagnosed with OCD at age 6 (docs then waved off my PANDAS inquiries), therapy alone kept him functional and even happy for the first year or so. At his next exacerbation about 14 months later, though, therapy alone didn't help him stay functional; the OCD was too ferocious. I asked about PANDAS again and was waved off, particularly as DS was entirely asymptomatic. So we allowed him to begin a low-dose SSRI. JAG may be right; the SSRI may have "masked" his issues rather than addressed them, but he was solid . . . functional, happy, subclinical . . . for another 6.5 years.

 

It wasn't until The Great Exacerbation to End All Exacerbations in 5/09 that none of the original supports . . . therapy or SSRI's . . . seemed to give him one iota of relief. That's when I learned that kids could be asymptomatic and still have PANDAS; we tested him, and when his titers showed up off the charts, we convinced his ped to prescribe abx. Except for brief intervals in which we tried to stop the abx, he's been on some dose of abx ever since. They made a dramatic difference initially, and I still hold that he continues to make gains behaviorally due to our continued use of them.

 

That being said, he still struggled/struggles with anxiety and OCD behaviors. So after attending the IOCDF conference last summer and spending some time talking with and listening to a lot of docs, including Eric Storch who works with Dr. Murphy, we decided to try low-dose SSRI's again in addition to the abx. And, just like we chart and journal how DS has been doing with the abx, various supplements, etc., we've been charting him with the SSRI, and it is helping him. And I feel confident at this point that we know what we're dealing with to the extent that it's not masking, but actually helping at this point in time. I will say that, earlier on, the psych's natural inclination was to increase DS's SSRI dose when a lower one didn't seem to have the desired impact, and the higher doses did, indeed, activate DS. But now I'm wiser, and I don't let the dose get pushed up anymore.

 

Psych drugs are not for every person, or every situation. And if I knew then what I know now and had it to do over again, I would've been giving DS abx at age 7 rather than Lexapro. But now, at the ripe old age of 14, with the OCD fairly firmly nestled into his psyche, I choose to approach this business holistically . . . I am going to treat him with everything at my disposal that helps. I can't let him hand over any more of his life to the debilitating levels of PANDAS and OCD he went through a year and a half ago or so now, so if SSRI's are part of that protocol, so be it. Nothing is off the table as far as I'm concerned. We wasted years with both mental health professionals and physical health professionals refusing to believe that the two systems could be truly linked in this way, and we still struggle with the specialists wanting to "corral" their territory of illness and ignor/eliminate holistic responses because they cross those territorial lines. I feel it would be unwise for me to buy into a similar "territorial" response and rule out a viable line of support in exclusive favor of another.

 

Perhaps with younger kids, and with PANDAS that is caught more quickly and treated appropriately, psych drugs never even have to enter the picture. And even with our older kid, all the psych drugs in the world wouldn't have worked without the addition of abx, I'm certain.

 

Also, just as there are a lot of things we're still learning about supplements and herbs and even abx in terms of their "accidental" properties (such as immune-modulation, anti-inflammatory, glutamate-modulation, etc.), SSRI's are now being discovered to have some "unintended" characteristics; I think it was EAMom who, not too long ago, posted a link to a study regarding the anti-inflammatory qualities of SSRI's. When I took it to our psych, he said yes, that there's been a lot of interest in that recently.

[JAG10]

Nancy makes some great points. You have a lot more information to work with than we did when dd11 was then 7 and we started trying all these meds. All I had to go on was the information the psychiatrist provided. So, when I reported to her what we are calling behavioral activation symptoms, she told me it was because my dd had an underlying mood disorder. There came the mood stabilizer, then the SSRI, then the stimulant. I was led to believe we just hadn't found the magic combination of brands at the magic dose of these 3 variables that were going to make my dd functional.

 

I told myself I was not going to let the scary names these drugs were called like atypical antipsychotics or antidepressants or stimulants stop/shame/frighten me if they were going to help her. AND if they had helped her, she would still be taking them and I would have never known she had PANDAS (because she was asymptomatic.)

 

That is a significant consideration....you know way too much to let a psychiatrist that knows nothing about PANDAS convince you of what I was convinced of for over 3 years. You probably wouldn't consider seeing a psychiatrist that wasn't fully versed in PANDAS. I did contact her about 6 months ago and tell her that my dd has PANDAS and is currently off all psych meds. She was "shocked", but happy we now knew why nothing had truly worked for her.

 

I also agree the 5-HTP would be along the same lines as Very Slow and Very Low. When my girl was 6, we tried St. John's Wart and had success with it for 9 months before what we now know was the piling on of myco-p that sent her over the edge.

[Luna2]

Hi - We have tried it all. We have been successful with low dose zoloft. Originally our dd!! was rx'ed at about 25 mg. I cut these in half and kept her at that level for a year +. This help alot for anorexia. The anorexia was the most scary manifestation of OCD because she felt like she would choke or didn't want anything in her month. DD is now 13 and on 50 mg of zoloft because of increased separation anxiety that was keeping her out of school. I let my docs know when I go up or down with the dose but I titrate. If they don't like what I am doing then I don't tell them. Recently we add 0.1 clonidin patch to the mix. This has helped with the anxiety and rages (it decrease flight or fight response). She is also on augmenton ES and we have found that dd reacts differently to chewable vs pill vs liquid. Ours does better on liquid. We also found cognative behavior therapy useful and ERP not so much. DD had a terrible time with risperidal. Tenex did nothing noticable. I also add melitonin for sleep; cell salts for occas immedicate relief; and clonipin for severe anxiety episodes. So, psych meds have been helpful and not all bad. I think the doseage is important to titrate to tolerable levels. So if 25 mg is causing bad reactions then try 12 mg. etc. I don't think this is a one size fits all illness.

[sf_mom]

DCMom: I have no experience with SSRI's and I haven't been able to read through the entire thread...

 

BUT, if your girls potentially have multiple co-infections, often they also have high histamine levels from infections and bringing the levels down often helps with symptoms. I am not sure if you are giving them anything like benadryl nightly but you might want to do that first to see if it helps.

 

So, one dose benadryl nightly, 1 hour before bed. It takes up to two weeks for it to take full effect.

Edited February 11, 2011 by SF Mom

[MomWithOCDSon]

DCMom: I have no experience with SSRI's and I haven't been able to read through the entire thread...

 

BUT, if your girls potentially have multiple co-infections, often they also have high histamine levels from infections and bringing the levels down often helps with symptoms. I am not sure if you are giving them anything like benadryl nightly but you might want to do that first to see if it helps.

 

So, one dose benadryl nightly, 1 hour before bed. It takes up to two weeks for it to take full effect.

Interesting . . . I've not heard this before. Can you give us a link to a paper along these lines?

 

If excessive histamine levels are an issue, you might try quercitin, also; and it doesn't induce sleepiness, so it could be given in the daytime, as well.

[sf_mom]

I've read about it in several Lyme related books... one is 'Insights to Lyme Treatment' where it is recommended by several LLMDs. I have since spoken with our LLMD who prescribed Ketotinfen 'histamine reducer' for my older son. With the twin's we are just using children's Benadryl. However, it is front end kind of treatment.... as they get better you'll want to reduce to again judge progress.

 

Quercitin is also recommended for the same reason.

 

http://books.google.com/books?id=ZFMRKZ2uoW4C&pg=PA99&lpg=PA99&dq=histamines+and+Lyme&source=bl&ots=jnEcrl0y2m&sig=ViQIBu7BGIue_QU0im3IlQvMHfg&hl=en&ei=R8NVTaiRLIzEgAeX5pjeDA&sa=X&oi=book_result&ct=result&resnum=3&ved=0CBsQ6AEwAg#v=onepage&q&f=false

 

Research shows that this kind of histamine release takes place in other immune disorders like Lyme disease, lupus or even diabetes.

 

http://www.immuneclinicresearch.com/6/HISTRELIEF-1.html

Edited February 11, 2011 by SF Mom