ssri's any effect?

[Ls_Mum]

Hi,

Sorry I am new to this My L has been diagnosed with Pandas and has been on prophylactic antibiotics for 8 months. Today they want to put her on ssri's. Has anyone had success with these? To me that is treating a symptom (ocd type behaviours) that are not always present....only after a strep exposure...and not the cause of the problem. I have been trying unsuccessfully to get ivig treatment but doesn't seem to be an option where we live. I am worried about the side effects of these drugs and the effects on her if her ocd is not "typical" ocd? thx

[michele]

I seem to be the minority here but I will say they have helped us. My son has symptoms that are chronic though and not just with exposure to strep. His OCD and anxiety are always present and seldom is he symptom free. Also he has anger and social issues where he thinks people are mean to him. His attention is also short and he has tics. We have found a combo of risperdal for the anger and explosive behaviors, tenex for the tics and attention and prozac for the anxiety and compulsions has helped him lately. Finding the right medicines is not easy and just because the first few don't work or make them worse doesn't mean that there is not others out there that can help. PANDAS and spectrum kids are sensitive to meds and do not respond typically. We have worked for a couple years to find ones that work. Abilify helped in the beginning and then stopped over time. That is also not unusual according to psychiatrist we see. Sometimes you can revisit ones that have stopped working later and they may work again. Their bodies develop resistance to the medications. We have been on antibiotics for years and they don't improve his behaviors enough to allow him to be successful in daily life or for us to tolerate his behaviors. Seven years into PANDAS here and I can not say I have ever found a cure. Some newer posters think they have but over time with reexposure to illness we have found symptoms wax and wane and are saw toothed in exacerbation. We have not done IVIG or PEX though.

 

 

 

Hi,

Sorry I am new to this My L has been diagnosed with Pandas and has been on prophylactic antibiotics for 8 months. Today they want to put her on ssri's. Has anyone had success with these? To me that is treating a symptom (ocd type behaviours) that are not always present....only after a strep exposure...and not the cause of the problem. I have been trying unsuccessfully to get ivig treatment but doesn't seem to be an option where we live. I am worried about the side effects of these drugs and the effects on her if her ocd is not "typical" ocd? thx

[momaine]

We did not know our dd had pandas for 3 years and for about 2 of those years she was on zoloft with some success. It really seemed to help at times. After things hit the fan this summer/fall it was clear the zoloft was not helping anymore or near enough. We switched to Celexa noticed a change after about 10 days at 20mg....slightly less anxiety. Upped it to 40mg and didn't notice any other change. Did not go off it when figuring out it was pandas and beginning antibiotics in Nov. and now am sort of afraid to stop while things are slowly but steadily improving right now.

 

Angela

 

 

I seem to be the minority here but I will say they have helped us. My son has symptoms that are chronic though and not just with exposure to strep. His OCD and anxiety are always present and seldom is he symptom free. Also he has anger and social issues where he thinks people are mean to him. His attention is also short and he has tics. We have found a combo of risperdal for the anger and explosive behaviors, tenex for the tics and attention and prozac for the anxiety and compulsions has helped him lately. Finding the right medicines is not easy and just because the first few don't work or make them worse doesn't mean that there is not others out there that can help. PANDAS and spectrum kids are sensitive to meds and do not respond typically. We have worked for a couple years to find ones that work. Abilify helped in the beginning and then stopped over time. That is also not unusual according to psychiatrist we see. Sometimes you can revisit ones that have stopped working later and they may work again. Their bodies develop resistance to the medications. We have been on antibiotics for years and they don't improve his behaviors enough to allow him to be successful in daily life or for us to tolerate his behaviors. Seven years into PANDAS here and I can not say I have ever found a cure. Some newer posters think they have but over time with reexposure to illness we have found symptoms wax and wane and are saw toothed in exacerbation. We have not done IVIG or PEX though.

 

 

 

Hi,

Sorry I am new to this My L has been diagnosed with Pandas and has been on prophylactic antibiotics for 8 months. Today they want to put her on ssri's. Has anyone had success with these? To me that is treating a symptom (ocd type behaviours) that are not always present....only after a strep exposure...and not the cause of the problem. I have been trying unsuccessfully to get ivig treatment but doesn't seem to be an option where we live. I am worried about the side effects of these drugs and the effects on her if her ocd is not "typical" ocd? thx

[Allison]

Hi.

Quick answer:

1. Lexapro helped my older girl on very low doses (5 mg) back when we thought it was "Amplified Pain Syndrome" with anxiety and depression. Helped manage the aches and pains. When symptoms got more severe, including suddon onset of OCD, we upped it slowly to 15 mg, didn't do much for her, weaned it down to 5 mg, then took her off because it didn't seem to be doing much at all.

2. My younger dd11 had a severe reaction at even 5 mg when used to treat her anxiety. I won't ever give it to her again. Ever.

 

Helps?

 

A

[thereishope]

Do take caution when putting a PANDAS child on SSRI's. Sometimes they have adverse reactions to them. Often they have to be dose differently too.

 

If you look on the PANDAS Fact Sheet, the study is cited under treatments.

http://www.latitudes.org/forums/index.php?showtopic=6265

 

Cognitive Behavioral Therapy (CBT) has been shown to be effective in some children with PANDAS and to provide families with coping strategies during a PANDAS flare [storch2006]. Caution is recommended for using SSRI's with PANDAS/OCD as there are reports of higher activation rates in such cases [Murphy2006]. In addition, there is a lack of controlled studies showing safety and efficacy of anti-tic or anti-OCD medications (e.g., SSRI and anti-psychotics) for children in the PANDAS subgroup.

 

Does you child have OCD all the time now after PANDAS surfaced? Have you tried things like CBT and ERP therapies? Often they do not work during an exacerbation, but ERP has helped with residual OCD with my son's third exacerbation.

[Ls_Mum]

Thanks Everyone for your advice.

We have asked about cbt but the best answer we get is that they will put her into a program for kids who worry....possibly if they get space in April or May.....she does not have anxiety except around separation during an exacerbation though. She shows the ocd behaviour during these times as well and it tapers off quite a lot during other times so I am hesiatant to put her on the ssri for the residual behaviours.

S

 

 

 

 

 

Do take caution when putting a PANDAS child on SSRI's. Sometimes they have adverse reactions to them. Often they have to be dose differently too.

 

If you look on the PANDAS Fact Sheet, the study is cited under treatments.

http://www.latitudes.org/forums/index.php?showtopic=6265

 

Cognitive Behavioral Therapy (CBT) has been shown to be effective in some children with PANDAS and to provide families with coping strategies during a PANDAS flare [storch2006]. Caution is recommended for using SSRI's with PANDAS/OCD as there are reports of higher activation rates in such cases [Murphy2006]. In addition, there is a lack of controlled studies showing safety and efficacy of anti-tic or anti-OCD medications (e.g., SSRI and anti-psychotics) for children in the PANDAS subgroup.

 

Does you child have OCD all the time now after PANDAS surfaced? Have you tried things like CBT and ERP therapies? Often they do not work during an exacerbation, but ERP has helped with residual OCD with my son's third exacerbation.

[MomWithOCDSon]

We were treating OCD before we knew about PANDAS. Our son took 20 mg. to 40 mg. of Lexapro daily, and he was predominantly OCD free for nearly 4 years. When he was exposed to strep last spring and "fell off the deep end" with his OCD behaviors, that's when we circled around to PANDAS. The Lexapro didn't even touch the raging OCD behaviors at that point, so the doctors switched him first to Prozac, which also didn't help, and then eventually to Luvox. About 1 month ago, we also added Intuniv, which is a non-stimulant ADHD-type drug intended to help him with attention.

 

We've been doing CBT since he was 6 (he's now 12); this year, with the uncontrollable OCD behaviors kicking in harder than ever before, we moved to some intense ERP, and he has been very well supported by that while we give the abx time to really get hold.

 

I can't say definitively if the Luvox has helped, but I can say it hasn't hurt. He's been on high-dose abx for 2 months now, and he's steadily improving. I think it's the abx, and the psychiatrist thinks its the Luvox. Go figure.

 

We, too, have tried "hammer drugs" during the really horrible periods, like risperadol, Seroquel, Abilify, clonansepam and Zyprexa. Only the clonansepam seemed to have any real, positive impact on the anxiety without killer side effects (such as sonambulence, ravenous hunger, etc.).

[michele]

Funny that the author of the article Dr. Murphy is the one who suggested my son go on tenex and prozac for the symptoms of ADHD and anxiety and tics and emotional liability. NIH and other PANDAs studies recommend SSRI's also for PANDAS treatment. I think the key is low doses and close observation by the Dr's. We see the psychiatrist once a month now. There is no way in the world cognitive therapy or ERP alone would have worked for my son during a severe exacerbation. This summer and fall when I had him to the psychologist every week and we did reinforcement charts and CBT there was no change in his behaviors even on meds and we had behaviorist come to the home too. It wasn't until his symptoms calmed down (wax and wane cycle)and we found the right meds that we saw improvements. Maybe if a kid was in a mild exacerbation CBT would work, but during a full flown exacerbation with moods and anger and tantrums there is no talking them down or reasoning. (we were fixing holes and dents in the walls he made with his feet and toys) We weren't dealing with OCD alone but comorbid symptoms that were irrational and explosive behaviors. We were desperate to get him help and were at the end of our ropes. I think people need to take into consideration that there are different degrees of behaviors in these PANDAS spectrum kids. I agree caution should always be used with meds and children. Most meds are not approved for the use in children.

 

http://www.cidpusa.org/PANDAS.htm

http://intramural.nimh.nih.gov/pdn/web.htm

 

Do take caution when putting a PANDAS child on SSRI's. Sometimes they have adverse reactions to them. Often they have to be dose differently too.

 

If you look on the PANDAS Fact Sheet, the study is cited under treatments.

http://www.latitudes.org/forums/index.php?showtopic=6265

 

Cognitive Behavioral Therapy (CBT) has been shown to be effective in some children with PANDAS and to provide families with coping strategies during a PANDAS flare [storch2006]. Caution is recommended for using SSRI's with PANDAS/OCD as there are reports of higher activation rates in such cases [Murphy2006]. In addition, there is a lack of controlled studies showing safety and efficacy of anti-tic or anti-OCD medications (e.g., SSRI and anti-psychotics) for children in the PANDAS subgroup.

 

Does you child have OCD all the time now after PANDAS surfaced? Have you tried things like CBT and ERP therapies? Often they do not work during an exacerbation, but ERP has helped with residual OCD with my son's third exacerbation.

[T_Mom]

L's Mum--Welcome. I wonder first how much antibiotics your child is on? Is it full strength--as if he/she were to have a sinus infection? In Saving Sammy, Beth Maloney found high dose Augmentin to work, but it was a relatively high dose for a length of time. I can say that our daughter has been on full strength Amoxicillan, full-strength as in 500 mg twice a day, for over a year now and is completely symptom free.

 

The Dr Murphy observation/article re: the effect of SSRIs on Pandas kids (that SSRI's can be counter productive) is just that--an observation of Pandas children.

 

If it was me, I'd be the first to try a month of full-strength antibiotics before SSRI's -- and even try switching antibiotics along the way.

All the best--

[EAMom]

edit

[EAMom]

Our PANDAS dd was placed on Lexapro (5mg/day along with antibiotics, augmentin intially, then amoxicillin) when we first learned of PANDAS. At the time she was in a severe PANDAS episode (March 08). Among other things, she had full-blown anorexia nervosa (required 6 days of hosp. for malnutrition). When we tried to wean her off of the lexapro 2mo. later (at that point she was on 10mg/day) she had major withdrawal (flu-like symptoms) and her anorexia returned in full-force. Hence, instead of weaning her off of ssri's we transitioned her to prozac (10mg/day). This was all before we "discovered" Azith/advil (actually this is HOW we ""discovered advil but it took a couple of weeks for us to be able to give the advil consistently).

 

My take on the Lexapro:

It definitely wasn't the "right" ssri for for dd. She had serotonin syndrome (akathesia, also other issues, didn't want to go to school) on this drug. I think it did help her mood a bit and also her eating. At higher doses (10mg, hoping that would help her OCD b/c it wasn't adequately controlled on 5mg) she had increased defiance/aggression which we thought were pandas symptoms, but turned out to be from the ssri.

 

My take on the Prozac:

I'm not sure it's doing anything at this point. But, we've been reluctant to "mess with what is working" and also wonder if it is helping a pre-existing social anxiety. We did try to wean her off Nov. 09. We went down to 5mg/day for 2 weeks and and then 0mg for another 10 days. What we noticed as we weaned her off she became very "barky" and irritible...rather difficult to live with. When we placed her back on she improved. We're not sure if the irritibility was that the prozac is actually helping the pandas (irritibility was one of our first pandas symptoms) or if it was an effect of prozac withdrawal (ie if we would have been okay if we weaned off much slower.) Dd also had a dental cleaning and a mild viral infectin (no school missed) during this time frame. So, I don't know if that influenced things.

 

I also wonder about prozac having anti-inflammatory effects and whether that is helpful for pandas kids. If you look on wikipedia (yeah, I know) there is a section about ssri's having anti-inflammatory/immune-modulating properties. http://en.wikipedia.org/wiki/Selective_ser...ptake_inhibitor So, it is possible (as long as the doses aren't high enough to cause bad side effects) that ssri's offer some immune modulating/anti-inflammatory benefits (like azith, advil, pred). Something to think about anyway. I do agree that if ssri's are used, they should be used with extreme caution and at lower doses since pandas kids do seem sensitive to adverse side effects (which can then be confused with pandas symptoms).

 

Anti-inflammatory and immunomodulation

Recent studies show pro-inflammatory cytokine processes take place during depression, mania and bipolar disorder, in addition to somatic disease (such as autoimmune hypersensitivity) and it is possible that symptoms manifest in these psychiatric illnesses are being attenuated by pharmacological effect of antidepressants on the immune system.[16][17][18][19][20]

 

SSRIs have been shown to be immunomodulatory and anti-inflammatory against pro-inflammatory cytokine processes, specifically on the regulation of Interferon-gamma (IFN-gamma) and Interleukin-10 (IL-10), as well as TNF-alpha and Interleukin-6 (IL-6). Antidepressants have also been shown to suppress TH1 upregulation.[21][22][23][24]

 

Future serotonergic antidepressants may be made to specifically target the immune system by either blocking the actions of pro-inflammatory cytokines or increasing the production of anti-inflammatory cytokines.[25]

[MomWithOCDSon]

The whole SSRI thing is curious to me.

 

Our family history has some anxiety issues . . . OCD, general anxiety, social anxiety, etc. . . . and when my husband was first prescribed an SSRI himself many years ago (in advance of our son having been prescribed), it was Celexa. We were wary of even an adult taking a psych med, so we got several doctors' opinions about the efficacy, the side effects, how it would/should work, etc. We were told by more than one doctor that, if it should turn out that a lack of active serotonin in his brain was NOT, perchance, the issue for my husband, then the SSRI would essentially not do anything for him. That it would be like someone taking a Tylenol without having any aches, pains or fever. Well, it did appear to be a legitimate chemical issue for him because he definitely felt calmer and less anxious, fewer instances of OCD, while taking it. Over time, when his job circumstances changed for the better, etc., he decided he was ready to try Life Without Chemistry. Weaning off the Celexa, however, turned out to be a nightmare for him . . . literally. Which his doctors had not warned him about; in fact, they had indicated that there were few if any issues weaning off Celexa as compared to, say, Paxil. He had nightmares night after night, moments when he would wake up gasping. He was a crab.

 

When the doctor first prescribed the Lexapro . . . a different formulation of the same components in Celexa . . . for our son's OCD, we were very wary. Did not want to go there, even though at that point, my husband had not yet gone through his Celexa weaning experience. We just didn't want to give a 7-year-old a psych med. But at that point PANDAS was not in the picture, and he was struggling horribly, especially in school. His quality of life stunk, so how could we not give the Lexapro a try?

 

Truth is, it worked beautifully for quite a while. The OCD almost disappeared, and what remained he was able to cope with with only nominal therapy intervention. So our experience with that particular SSRI was excellent.

 

On the other hand, Prozac was the opposite; at lower doses, it didn't seem to help him at all. At a higher dose, he experienced akathesia -- twitching, ticcing, "spazing out," -- all behaviors we'd never, ever seen in him previous to the Prozac.

 

The Luvox, as I mentioned before, seems to be as subtle as the Lexapro was initially, if not even more so. Again, because we've discovered PANDAS and our son has definitely responded well to high dose abx (2,000 mg. Augmentin XR daily), I am uncertain whether or not the Luvox brings anything to the table. But he hasn't had any of the negative responses to it that he had with Prozac so, for the time being, we're leaving things status quo.

 

So, response to these meds really does seem to be a very individual thing, despite the fact that they're all supposed to do essentially the same thing: leave more serotonin available in the brain for the receptors to pick up on a consistent basis.

 

I read somewhere that carbohydrates tend to increase serotonin production, which led me to the half-joke assumption that carb loaders may have more serotonin coursing through their brains, plus carb loaders can tend to pack on extra pounds (i should know!), so maybe that's why "fat" is frequently associated with one having a "jolly" disposition?! I'm not quite jolly at this point, but a few more chips, and I'll definitely be approaching "cheerful."

[melanie]

Hi,

Sorry I am new to this My L has been diagnosed with Pandas and has been on prophylactic antibiotics for 8 months. Today they want to put her on ssri's. Has anyone had success with these? To me that is treating a symptom (ocd type behaviours) that are not always present....only after a strep exposure...and not the cause of the problem. I have been trying unsuccessfully to get ivig treatment but doesn't seem to be an option where we live. I am worried about the side effects of these drugs and the effects on her if her ocd is not "typical" ocd? thx

 

 

I really wanted to chime in on this one.Danny has tried every SSRI and SSNRI and every letter in between.What I have found is in the very beginning of the medication 1st week I may see something but always a disaster after that. I am not against medication at all as amatter of fact I ama fan of medications and hae seen success in many people.But not for danny.Unfortuatly nothing has helped his ocd except ivig.He is on .25 mg risperadal 2x a day along with his antibiotic and steroid meds.Believe me if i could find one, and we have pages and pages we would use one.

 

1 peice of advise !!! Get a log book and keep track of the ones yoy have tried!!How they work etc!!!

 

melanie

[thereishope]

How old is your daughter? CBT wouldn't work with my son because he didn't realize the OCD was a problem. So the "talking back' part, charting anxiety, etc would not have worked for him. But ERP did work Again, I want to add that during an exacerbation, it worked a little, but it definitely worked with residual OCD.

 

I'd be nervous putting him in a group setting too. Have you called around to differnt psychologists?

 

How long has it been since the onset of this last exacebation?

 

 

Thanks Everyone for your advice.

We have asked about cbt but the best answer we get is that they will put her into a program for kids who worry....possibly if they get space in April or May.....she does not have anxiety except around separation during an exacerbation though. She shows the ocd behaviour during these times as well and it tapers off quite a lot during other times so I am hesiatant to put her on the ssri for the residual behaviours.

S

 

 

 

 

 

Do take caution when putting a PANDAS child on SSRI's. Sometimes they have adverse reactions to them. Often they have to be dose differently too.

 

If you look on the PANDAS Fact Sheet, the study is cited under treatments.

http://www.latitudes.org/forums/index.php?showtopic=6265

 

Cognitive Behavioral Therapy (CBT) has been shown to be effective in some children with PANDAS and to provide families with coping strategies during a PANDAS flare [storch2006]. Caution is recommended for using SSRI's with PANDAS/OCD as there are reports of higher activation rates in such cases [Murphy2006]. In addition, there is a lack of controlled studies showing safety and efficacy of anti-tic or anti-OCD medications (e.g., SSRI and anti-psychotics) for children in the PANDAS subgroup.

 

Does you child have OCD all the time now after PANDAS surfaced? Have you tried things like CBT and ERP therapies? Often they do not work during an exacerbation, but ERP has helped with residual OCD with my son's third exacerbation.

[reneegavin]

I am also considering putting my dd on a low dose of Zoloft. Everyone in the area is saying it couldn't be PANDAS, and I don't have the funds to fly her to a doc who does! Truly, I wish I did, but a psychiatrist who treats kids w/PANDAS is saying she just doesn't fit the mold. She needs some relief from her symptoms, so I'm not sure what else to do.