Cautions Against SSRIs with PANDAS?

[MomWithOCDSon]

I'm new here, and I'm still trying to find my way through the maze that is PANDAS.

 

My son is now 12 but was diagnosed with OCD at 6. Through some web research at that time, I'd found PANDAS and asked the doctors to consider the strep link, but all they'd agree to was a strep culture, which came back negative. They were the experts and I got the same answer (not PANDAS) from all three of them, so I accepted the diagnosis and we proceeded with treatment.

 

Began with CBT and ERP initially, and it succeeded in helping him through his daily life for over a year. Then after about 18 months, his behaviors stepped up dramatically; he couldn't function in school, was just a mess. We decided we needed to consider meds, and he was put on Lexapro with great results. He essentially lived OCD-free for the next 5 years.

 

Then last May, he went bezerk. The Lexapro stopped working. Even a more intense therapy schedule had no impact. The psychiatrist wanted to try all sorts of "calming" drugs, but after agreeing to one that just zombied him out and put him to sleep, I said "no more." We tried Prozac, and it didn't seem to have any impact at all, and then he was transitioned to Luvox, which he's still on at 200 mg.

 

After "Saving Sammy," I decided to try the strep link again and was able to get an ASO titer test that confirmed elevated titer levels. I'm being told in multiple threads here now that this test isn't THE definitive tell-tale confirmation of PANDAS, but at least it was enough to get our pediatrician on board with a prescription for antibiotics. So, now he's on Luvox and Augmentin. Plus the probiotics to help his gut through the abx onslaught.

 

He continues to improve, with some bad days mixed in with the good, but more good than bad. He's back in school for a 2/3 day now after having been out entirely for about 6 weeks, and he's frequently the chatty, funny, wisenheimer kid we've known and loved for all of his 12 years, without the OCD being front and center.

 

Finally, about 2 weeks ago, the psychiatrist decided his OCD was well enough under control (by the way, he still pooh-poohs my adherence to the abx regimen but knows it is ongoing) to start addressing some of my son's ADHD symptoms and prescribes Intuniv, a non-stimulant ADHD med in the same ilk as Straterra. Because I know Sammy was put on Straterra and perhaps continues to take it still, I was not alarmed and looked forward to some positive results.

 

I realize there are a lot of members here who advocate the strictly "natural" or "one med" at a time route for addressing PANDAS, and I fully respect that. It's just that we'd already been on this train for 6 years before the PANDAS seemed like anything real for us, plus Sammy was clearly taking psych meds along with antibiotics and none of that seemed to be a hindrance to his recovery.

 

So why do I keep seeing warnings against the combining of SSRIs with PANDAS? Is there a basis for it beyond a personal choice to stay away from psych drugs with kids? Again, I completely honor that, and had we not experienced very good results with those drugs for years with our son, I would be more cautious than I currently am. But I'm wondering of there's some research or anecdotal experience that illustrates a conflict between the two?

 

Please enlighten me! Thanks!

[thereishope]

This is taken from Buster's suggested NIMH update page (http://www.latitudes.org/forums/index.php?showtopic=6142&hl=) ....

 

I have heard from other parents who had bad experiences with PANDAS and SSRI's.

 

"Treatment:

 

Streptococcal infections are treated with antibiotics.

 

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.

 

Several reports have shown effectiveness of immunomodulating therapy (IVIG and PEX) in combination with longer term prophylactic antibiotics[Perlmutter1999]. In addition, several studies have shown efficacy of longer term prophylactic antibiotics alone [snider2005]. These treatments are still considered experimental and have several risks. Some physicians will use a prednisone steroid burst for a short period of time to assist in diagnosis of an auto-immune disorder. Immunomodulating therapies are not effective for Tourettes Syndrome or other non-PANDAS OCD cases, again separating the child with PANDAS [Nicolson2000]"

[Joan Pandas Mom]

Hi, I am new here too but my son has suffered severe OCD and PANDAS for the past 6 years. He is now 15. He has been on a few different SSRI's over the last 6 years--none worked. I am wondering if they did make him or his PANDAS worse. He has been off since Thursday. I will let you know how it goes. He has been saying over the past couple of years that they didn't help.

 

I'm new here, and I'm still trying to find my way through the maze that is PANDAS.

 

My son is now 12 but was diagnosed with OCD at 6. Through some web research at that time, I'd found PANDAS and asked the doctors to consider the strep link, but all they'd agree to was a strep culture, which came back negative. They were the experts and I got the same answer (not PANDAS) from all three of them, so I accepted the diagnosis and we proceeded with treatment.

 

Began with CBT and ERP initially, and it succeeded in helping him through his daily life for over a year. Then after about 18 months, his behaviors stepped up dramatically; he couldn't function in school, was just a mess. We decided we needed to consider meds, and he was put on Lexapro with great results. He essentially lived OCD-free for the next 5 years.

 

Then last May, he went bezerk. The Lexapro stopped working. Even a more intense therapy schedule had no impact. The psychiatrist wanted to try all sorts of "calming" drugs, but after agreeing to one that just zombied him out and put him to sleep, I said "no more." We tried Prozac, and it didn't seem to have any impact at all, and then he was transitioned to Luvox, which he's still on at 200 mg.

 

After "Saving Sammy," I decided to try the strep link again and was able to get an ASO titer test that confirmed elevated titer levels. I'm being told in multiple threads here now that this test isn't THE definitive tell-tale confirmation of PANDAS, but at least it was enough to get our pediatrician on board with a prescription for antibiotics. So, now he's on Luvox and Augmentin. Plus the probiotics to help his gut through the abx onslaught.

 

He continues to improve, with some bad days mixed in with the good, but more good than bad. He's back in school for a 2/3 day now after having been out entirely for about 6 weeks, and he's frequently the chatty, funny, wisenheimer kid we've known and loved for all of his 12 years, without the OCD being front and center.

 

Finally, about 2 weeks ago, the psychiatrist decided his OCD was well enough under control (by the way, he still pooh-poohs my adherence to the abx regimen but knows it is ongoing) to start addressing some of my son's ADHD symptoms and prescribes Intuniv, a non-stimulant ADHD med in the same ilk as Straterra. Because I know Sammy was put on Straterra and perhaps continues to take it still, I was not alarmed and looked forward to some positive results.

 

I realize there are a lot of members here who advocate the strictly "natural" or "one med" at a time route for addressing PANDAS, and I fully respect that. It's just that we'd already been on this train for 6 years before the PANDAS seemed like anything real for us, plus Sammy was clearly taking psych meds along with antibiotics and none of that seemed to be a hindrance to his recovery.

 

So why do I keep seeing warnings against the combining of SSRIs with PANDAS? Is there a basis for it beyond a personal choice to stay away from psych drugs with kids? Again, I completely honor that, and had we not experienced very good results with those drugs for years with our son, I would be more cautious than I currently am. But I'm wondering of there's some research or anecdotal experience that illustrates a conflict between the two?

 

Please enlighten me! Thanks!

[peglem]

I've been dealing with this for at least 10 years now....and before we knew it was PANDAS, or even knew it was strep related- tried lots and lots of different psych meds. When my daughter was very young- 3-5yo, I swore I'd never try any of "those dangerous psych meds." But, around age 6 (before strep/PANDAS recognition still) things got so bad, that we were seriously looking at out of home placement for her (still chokes me up to think about it), so I decided to try. We burned through the SSRI's pretty quickly- they just didn't change a thing. Then risperdal, which seemed to help at 1st, but she got worse anyway, and increasing dosage made no difference. When we weaned that one, discovered she was BETTER off of it. Right now we still take lamictal, which was originally used for probable seizures, but seemed to help with mood as well. When we discovered the strep (she's a chronic carrier) and later the PANDAS, even though there was overlap between antibiotics and psych meds, I discovered that the antibiotics did more for mood/behavior than any psych med ever did. I did not see any worsening of symptoms, except with risperdal and lithium, but not the SSRIs. I have a theory- just my thinking:

 

PANDAS is caused by antibodies triggering neurotransmitters to be released willy nilly in the basal ganglia. Psych meds are supposed to balance, or stabilize those neurotransmitters. But, what I think is that the antibodies are constantly disrupting stability- so they don't work during exacerbation, then when you come out of exacerbation, the drugs, themselves may cause problems because the "chaos" they are suppose to treat no longer exists. Like I said, just my theory. I'm not aware of any studies that have been done regarding PANDAS kids and psych meds.

[EAMom]

We're not totally against SSRI's on this forum. We just strongly urge members to use them with extreme caution. Buster is my dh. Our dd ended up having big issues with Lexapro (serotonin syndrome, akathesia) at not-so-high doses. Unfortunately, the symptoms of serotonin syndrome (aggression, rages, defiance) are easily confused with PANDAS symptoms. So, if you're not careful with the SSRI's (and other psych. drugs) you can really blur the lines between what is PANDAS and what is side-effects from psych. drugs.

 

We did transition our dd (now 9.5 years) onto a low dose of Prozac, after the Lexapro, which she perhaps didn't really need to be on once we "discovered" azithromycin (and later had IVIG). She was on this low dose Prozac (10mg/day) for about 1.5 years....just because we were afraid to "mess with things", and now are in the process of taking her off. She may have some underlying social anxiety, so maybe the low dose prozac is okay for her, but after all we've been through, we feel it is time to see how our dd is without them.

[Worried_Dad]

Like you, we were desperate for anything that could help relieve our son's nightmare. We tried quite a few psych meds: for our son, they had no effect at best and exacerbated things at worst.

 

Zoloft made his OCD worse. Zyprexa also, and increasing the dose triggered a dystonic reaction.

 

Benzos (anti-anxiety meds - ativan, klonopin) were the worst. For our son, ativan was like pouring nitro on a bonfire.

 

I hope you have better luck. Some kids on here do seem to benefit (at least short-term) from some psych meds. Based on our son's experience, though, I'd just recommend extreme caution in terms of starting dosage and rate of increase.

 

And - per the Dr. Tanya Murphy study Buster cites - normal doses of SSRI's were found to cause big problems for PANDAS children. That study indicated that PANDAS kids need to be on extremely low doses (4-6 mg, as I recall) to avoid serious complications.

[momto2pandas]

I'm new here, and I'm still trying to find my way through the maze that is PANDAS.

 

My son is now 12 but was diagnosed with OCD at 6. Through some web research at that time, I'd found PANDAS and asked the doctors to consider the strep link, but all they'd agree to was a strep culture, which came back negative. They were the experts and I got the same answer (not PANDAS) from all three of them, so I accepted the diagnosis and we proceeded with treatment.

 

Began with CBT and ERP initially, and it succeeded in helping him through his daily life for over a year. Then after about 18 months, his behaviors stepped up dramatically; he couldn't function in school, was just a mess. We decided we needed to consider meds, and he was put on Lexapro with great results. He essentially lived OCD-free for the next 5 years.

 

Then last May, he went bezerk. The Lexapro stopped working. Even a more intense therapy schedule had no impact. The psychiatrist wanted to try all sorts of "calming" drugs, but after agreeing to one that just zombied him out and put him to sleep, I said "no more." We tried Prozac, and it didn't seem to have any impact at all, and then he was transitioned to Luvox, which he's still on at 200 mg.

 

After "Saving Sammy," I decided to try the strep link again and was able to get an ASO titer test that confirmed elevated titer levels. I'm being told in multiple threads here now that this test isn't THE definitive tell-tale confirmation of PANDAS, but at least it was enough to get our pediatrician on board with a prescription for antibiotics. So, now he's on Luvox and Augmentin. Plus the probiotics to help his gut through the abx onslaught.

 

He continues to improve, with some bad days mixed in with the good, but more good than bad. He's back in school for a 2/3 day now after having been out entirely for about 6 weeks, and he's frequently the chatty, funny, wisenheimer kid we've known and loved for all of his 12 years, without the OCD being front and center.

 

Finally, about 2 weeks ago, the psychiatrist decided his OCD was well enough under control (by the way, he still pooh-poohs my adherence to the abx regimen but knows it is ongoing) to start addressing some of my son's ADHD symptoms and prescribes Intuniv, a non-stimulant ADHD med in the same ilk as Straterra. Because I know Sammy was put on Straterra and perhaps continues to take it still, I was not alarmed and looked forward to some positive results.

 

I realize there are a lot of members here who advocate the strictly "natural" or "one med" at a time route for addressing PANDAS, and I fully respect that. It's just that we'd already been on this train for 6 years before the PANDAS seemed like anything real for us, plus Sammy was clearly taking psych meds along with antibiotics and none of that seemed to be a hindrance to his recovery.

 

So why do I keep seeing warnings against the combining of SSRIs with PANDAS? Is there a basis for it beyond a personal choice to stay away from psych drugs with kids? Again, I completely honor that, and had we not experienced very good results with those drugs for years with our son, I would be more cautious than I currently am. But I'm wondering of there's some research or anecdotal experience that illustrates a conflict between the two?

 

Please enlighten me! Thanks!

[momto2pandas]

My experience with the SSRIs as a PANDAS youth was tricky. Prozac made me extremely manic within a day at 5 mg. Zoloft was better (at small doses), but still eventually made me start to "rapid-cycle". In kids, mania tends to manifest as mixed states, which includes rages, irritability, etc. as well as "activation." Before we figured out that antibiotics were what I needed, I took very low doses of SSRIs with an antiepileptic mood stabilizer (Tegretol was what they had at that time, none of these newer ones), and that seemed to work quite well, but we always tried to wean off of the SSRI asap to avoid cycling. Usually it just took a few days of SSRIs to "reset" things and kick me back into a good place in any case.

 

Other people I have known with the same syndrome had good luck with Wellbutrin in controlling OCD etc. sx and it is much less activating.

 

 

 

 

 

I'm new here, and I'm still trying to find my way through the maze that is PANDAS.

 

My son is now 12 but was diagnosed with OCD at 6. Through some web research at that time, I'd found PANDAS and asked the doctors to consider the strep link, but all they'd agree to was a strep culture, which came back negative. They were the experts and I got the same answer (not PANDAS) from all three of them, so I accepted the diagnosis and we proceeded with treatment.

 

Began with CBT and ERP initially, and it succeeded in helping him through his daily life for over a year. Then after about 18 months, his behaviors stepped up dramatically; he couldn't function in school, was just a mess. We decided we needed to consider meds, and he was put on Lexapro with great results. He essentially lived OCD-free for the next 5 years.

 

Then last May, he went bezerk. The Lexapro stopped working. Even a more intense therapy schedule had no impact. The psychiatrist wanted to try all sorts of "calming" drugs, but after agreeing to one that just zombied him out and put him to sleep, I said "no more." We tried Prozac, and it didn't seem to have any impact at all, and then he was transitioned to Luvox, which he's still on at 200 mg.

 

After "Saving Sammy," I decided to try the strep link again and was able to get an ASO titer test that confirmed elevated titer levels. I'm being told in multiple threads here now that this test isn't THE definitive tell-tale confirmation of PANDAS, but at least it was enough to get our pediatrician on board with a prescription for antibiotics. So, now he's on Luvox and Augmentin. Plus the probiotics to help his gut through the abx onslaught.

 

He continues to improve, with some bad days mixed in with the good, but more good than bad. He's back in school for a 2/3 day now after having been out entirely for about 6 weeks, and he's frequently the chatty, funny, wisenheimer kid we've known and loved for all of his 12 years, without the OCD being front and center.

 

Finally, about 2 weeks ago, the psychiatrist decided his OCD was well enough under control (by the way, he still pooh-poohs my adherence to the abx regimen but knows it is ongoing) to start addressing some of my son's ADHD symptoms and prescribes Intuniv, a non-stimulant ADHD med in the same ilk as Straterra. Because I know Sammy was put on Straterra and perhaps continues to take it still, I was not alarmed and looked forward to some positive results.

 

I realize there are a lot of members here who advocate the strictly "natural" or "one med" at a time route for addressing PANDAS, and I fully respect that. It's just that we'd already been on this train for 6 years before the PANDAS seemed like anything real for us, plus Sammy was clearly taking psych meds along with antibiotics and none of that seemed to be a hindrance to his recovery.

 

So why do I keep seeing warnings against the combining of SSRIs with PANDAS? Is there a basis for it beyond a personal choice to stay away from psych drugs with kids? Again, I completely honor that, and had we not experienced very good results with those drugs for years with our son, I would be more cautious than I currently am. But I'm wondering of there's some research or anecdotal experience that illustrates a conflict between the two?

 

Please enlighten me! Thanks!

[MomWithOCDSon]

Okay, so . . . .

 

Is that to say, at least possibly, that because our son DID respond so well, for so long, to Lexapro, that he DOESN'T, in fact, have PANDAS but rather has some other genesis of OCD?!

 

It seems most of you have repeated failings with psych drugs, while we had a very positive response initially. Our failures in that regard have been more recent.

 

There's a part of me that was hoping, not unlike the misunderstanding regarding ulcers that prevailed for decades (that they were caused by stress, rather than by infection, as was finally determined), that ALL OCD may have its genesis in infection that can be treated via abx, thereby eliminating the need for the psych drugs.

 

Also, I will say that while the Prozac did not seem to help and the jury is still out on the Luvox, neither of them appeared to exacerbate my son's symptoms, nor has he ever displayed signs of serotonin syndrome.

 

So, maybe it's not PANDAS???

[nevergiveup]

What makes a PANDAS kid different from a normal (OCD ) Kid? I think thats what you asked. First a PANDAS kid has an autoimmune condition. It is not the strep that is causing the problems rather the antibodies against it. It is also a BBB problem, where many many many kids produce strep antibodies but they do not get in the brain to cause basal ganglia inflammation (OCD). So what does SSRI's do for an autoimmune condition and a weak blood brain barrier. SSRI's success rate is pitiful with OCD and I personally think if your son was in remission 5 years it is because he has an autoimmune condition which is typically relapsing remitting and he was exposed to the infectious agent again that caused the original attack. Lexapro does not put PANDAS into remission. (If it did we would already know about it cuz it is always prescribed and many kids get worse on it) If you continue to go this route of brain drugs, and not immune meds I would look into the glutamate drug studies being conducted right now by the NIH. I heard they are having better success with OCD than SSRI. However if you want to better his immune system, high dose abx will help prevent a relapse by preventing a bacterial infection and high dose abx have some immune modulating effects. You have been dealing with this for a long time. Look at our past posts on this forum about immun docs and immune testing. Cunningham tests. IVIG and PEX. All these kids need high dose abx, try augmentin, zithro or cefdinir. Look into immune tests to better figure out what is going on in his immune system. And get the cunninham tests for further confirmation. I wish your son a speedy recovery.

[MomWithOCDSon]

What makes a PANDAS kid different from a normal (OCD ) Kid? I think thats what you asked. First a PANDAS kid has an autoimmune condition. It is not the strep that is causing the problems rather the antibodies against it. It is also a BBB problem, where many many many kids produce strep antibodies but they do not get in the brain to cause basal ganglia inflammation (OCD). So what does SSRI's do for an autoimmune condition and a weak blood brain barrier. SSRI's success rate is pitiful with OCD and I personally think if your son was in remission 5 years it is because he has an autoimmune condition which is typically relapsing remitting and he was exposed to the infectious agent again that caused the original attack. Lexapro does not put PANDAS into remission. (If it did we would already know about it cuz it is always prescribed and many kids get worse on it) If you continue to go this route of brain drugs, and not immune meds I would look into the glutamate drug studies being conducted right now by the NIH. I heard they are having better success with OCD than SSRI. However if you want to better his immune system, high dose abx will help prevent a relapse by preventing a bacterial infection and high dose abx have some immune modulating effects. You have been dealing with this for a long time. Look at our past posts on this forum about immun docs and immune testing. Cunningham tests. IVIG and PEX. All these kids need high dose abx, try augmentin, zithro or cefdinir. Look into immune tests to better figure out what is going on in his immune system. And get the cunninham tests for further confirmation. I wish your son a speedy recovery.

 

I get that a PANDAS kid has an autoimmune disorder; I'm just trying to figure out if that is truly MY kid's problem, or if his OCD comes via some other agency. Especially when he does well for nearly five years on an SSRI when other PANDAS families report nearly only failures with such meds. Honestly, I'd like to believe it IS PANDAS, because then there could actually be a CURE, rather than just "managing" the condition for the remainder of his life! I've heard of the glutamate drug studies (one at the University of Michigan, I believe) and am encouraged by that, but we're trying every path we can. We DO have him on high-dose antibiotics right now: Augmentin XR at 2,000 mgs per day.

 

I'm just putting it out there for a reality check against all the experience on this forum. It seems a little too coincidental that his near 5-year "remission" was because he got over the infectious agent but then was re-exposed. He attended public school, was exposed to strep repeatedly (I know because we'd get a note sent home, and he'd never develop any signs of it, but I would inevitably come down with strep throat a few days later), I can't remember a single instance of his being put on antibiotics during that time because, beyond the OCD, he's a really healthy kid. And, he was on the Lexapro that entire time.

 

Don't get me wrong: I KNOW PANDAS is real, and I am very cheered and encouraged by all the information and experiences posted here. And I'm not ruling it out for my own son; I'd love to cure him! Just trying to separate the wheat from the chaff. From what I've experienced thus far, medical practitioners who are either dubious or downright anti-PANDAS automatically diagnose my son with OCD, and those that acknowledge and even practice in the PANDAS field immediately diagnose him as PANDAS. But our experience could point us down either road, and everybody has a dog in the fight, know what I mean?

[T_Mom]

When our d was in her initial severe exacerbation of OCD and ticcing --we stumbled upon Dr. K's website and in a phone consult with him decided to try his suggestion of a steroid burst, in essence to see if this OCD was a result of inflammation.

 

Nothing is fool-proof of course, but in our case the steroid burst was a great help in making the path-ahead a little clearer--

 

ps-- some SSRIs may have anti-inflammatory properties, you may want to check into that as well. Our d is on a very low dose prozac (we have not wanted to change a thing this year), though the changes we have seen in her have been obviously tied to the antibiotics and steroid bursts.

[nevergiveup]

Kids go into remission for years with PANDAS. Other infectious agents cause antibodies to attack the brain. Mycoplasma pneum is one that has severe PANDAs symptoms. Some studies have implicated staph infections. Not all strep strains produce the same antibodies either. Childhood sudden onset OCD IS an autoimmune illness. The key is SUDDEN ONSET with relapses and remission. So you feel the Lexapro stopped working? Rather than your son had a relapse? My guess since he was in remission for 5 years it is infection triggered OCD or PANDAS. Sorry but SSRI's are not known for curing OCD, they are proven to reduce symptoms though but not put in complete remission. I firmly believe sudden onset OCD in children that is infection triggered is autoimmune. Hey, ask your docs what caused your sons OCD and relapse. Lack of seratonin??? I know thats not proven. I would love to hear his explanation. I would keep him on the abx, and try another SSRI, if he doesn't get worse then thats good you know the SSRI is not hurting him. If he gets worse then I guess he then has PANDAS and you can go to the PANDA experts. Whats wrong with both abx and SSRI for a long time??

 

 

 

 

What makes a PANDAS kid different from a normal (OCD ) Kid? I think thats what you asked. First a PANDAS kid has an autoimmune condition. It is not the strep that is causing the problems rather the antibodies against it. It is also a BBB problem, where many many many kids produce strep antibodies but they do not get in the brain to cause basal ganglia inflammation (OCD). So what does SSRI's do for an autoimmune condition and a weak blood brain barrier. SSRI's success rate is pitiful with OCD and I personally think if your son was in remission 5 years it is because he has an autoimmune condition which is typically relapsing remitting and he was exposed to the infectious agent again that caused the original attack. Lexapro does not put PANDAS into remission. (If it did we would already know about it cuz it is always prescribed and many kids get worse on it) If you continue to go this route of brain drugs, and not immune meds I would look into the glutamate drug studies being conducted right now by the NIH. I heard they are having better success with OCD than SSRI. However if you want to better his immune system, high dose abx will help prevent a relapse by preventing a bacterial infection and high dose abx have some immune modulating effects. You have been dealing with this for a long time. Look at our past posts on this forum about immun docs and immune testing. Cunningham tests. IVIG and PEX. All these kids need high dose abx, try augmentin, zithro or cefdinir. Look into immune tests to better figure out what is going on in his immune system. And get the cunninham tests for further confirmation. I wish your son a speedy recovery.

 

I get that a PANDAS kid has an autoimmune disorder; I'm just trying to figure out if that is truly MY kid's problem, or if his OCD comes via some other agency. Especially when he does well for nearly five years on an SSRI when other PANDAS families report nearly only failures with such meds. Honestly, I'd like to believe it IS PANDAS, because then there could actually be a CURE, rather than just "managing" the condition for the remainder of his life! I've heard of the glutamate drug studies (one at the University of Michigan, I believe) and am encouraged by that, but we're trying every path we can. We DO have him on high-dose antibiotics right now: Augmentin XR at 2,000 mgs per day.

 

I'm just putting it out there for a reality check against all the experience on this forum. It seems a little too coincidental that his near 5-year "remission" was because he got over the infectious agent but then was re-exposed. He attended public school, was exposed to strep repeatedly (I know because we'd get a note sent home, and he'd never develop any signs of it, but I would inevitably come down with strep throat a few days later), I can't remember a single instance of his being put on antibiotics during that time because, beyond the OCD, he's a really healthy kid. And, he was on the Lexapro that entire time.

 

Don't get me wrong: I KNOW PANDAS is real, and I am very cheered and encouraged by all the information and experiences posted here. And I'm not ruling it out for my own son; I'd love to cure him! Just trying to separate the wheat from the chaff. From what I've experienced thus far, medical practitioners who are either dubious or downright anti-PANDAS automatically diagnose my son with OCD, and those that acknowledge and even practice in the PANDAS field immediately diagnose him as PANDAS. But our experience could point us down either road, and everybody has a dog in the fight, know what I mean?

[thereishope]

I'm going to try to tackle the is it OCD because SSRI's worked for him.

 

What I'm saying is not from personal experience, but from what I've gathered from some other parents. Some have said that the meds worked initially but then caused problems like inhibition. They pulled their child off the psych meds and the child improved. So they learned that the psych meds "changed" from being beneficial to being dangerous for them.

 

One thing might be that the child by sheer coincidence was naturally improving at the same time the SSRI was introduced. The parent and the psychiatrist would then attribute the imprpvement to the SSRI when the recovery was the body just getting better on its own.

 

Also, some kids may have more than one diagnosis. There is a chance a child can have OCD AND PANDAS. This is when the OCD is always there but dramatically worsens as a result of strep. Perhaps for that child a SRRI is actually needed. I don't know. But then you need to work on which one and dosing.

 

What you have to decide is how to determine what is going on with him. One possibility is to lower the SSRI's and see what happens. Another is to wean him off completely. But the problem with that one is if you truly believe he is carrying co-morbid diagnosises, going off the SSRI completely can be bad and it would take weeks to get it in his system again.

 

One question I would have for you is why did you finally decide to go on the SSRI's? At that time did you all of a sudden see a huge increase in his OCD or was it that you weren't seeing improvement and you decided it was time to try meds. You need to search and remember as much as possible about what was going on at the time.

 

With my son, after his 3rd excerbation, the OCD did not go away. I was sitting there thinking he had OCD and finally the OCD won. Even though the 2 previous times it completely went away. I went to the psychiatrist who said maybe Zoloft. I went to the psychologist to try CBT (which didn't work because he was 5 and did not see the OCD as an issue). I saw it as my son now had OCD. So, when I saw it that I now had to live with a child with PANDAS and OCD, I shifted gears and thought I was entering the tackling of OCD in a child that would always have it. I started my own form of ERP at home and he shed all the remaining OCD. The psychologist was floored on how fast he did it too. The shedding process did include extinction anxiety like with regular OCD but he seemd to overcome each OCD faster than one would expect. But then, he wasn't living with it as long as your son. For my son, it was determined it was just residual OCD

 

We can't tell you what to do with the meds, but we can tell you what others have experienced and help guide you in trial and error. Yes, it's bad that treating our kids includes so much trial and error, but it does. There's diferent antbitics that work for differnt kids. Some have the most success on Zithromax. Some of Augmentin. Some on Keflex. Some get better on amoxicillan (although this is rare). Each trial on an antibiotic needs to get a month or so devoted to it. Some have to try steroids,. Some go onto IVIG or PEX. But the end result is you may give your child a life that for awhile you thought wasn't a posssibility anymore and you are empowered with information to tackle the next time, if God forbid it should occur.

 

Do try the Ibuprofen and tell us if that eases any symptoms at all. Also, if you are not doing so, give him Omega 3's which help with OCD. Make sure strep is out of your house. Make sure all family members have had strep tests and they are all cultured if they come back negative. Change tooth brushes of infected people

 

 

Also, remember some instinct brought you to this forum and the idea of PANDAS. Don't ignore your gut. Many families have just followed their gut despite what doctors have told us. Parental instinct is irreplaceable.

[momaine]

I'll tell you what happened with my dd.

 

OCD began with frequent urination and comulsive need to wipe repeatedly..always feeling wet along with reassurance question. With ERP we go the wiping under control but no help for the intrusive thoughts. Tried Zoloft. Within the month, things improved dramatically. Stayed good for 6 months or so. Things went downhill. UPped dose. Things evened out for another year and a half. Things tanked again....upped dose again...twice....no remittance from extreme OCD.

 

Changed to Celexa and by day ten things were improving again, slowly. upped dose...not sure if there was anymore improvement, really. Found new psychologist who steered us in the pandas direction. Began reading more and more and realized she had ALL the symptoms of PANDAS. Started antibiotic but dr. did not want to make more than one change at a time so she is still on Celexa.

 

I do beleive the zoloft helped for a time but when she had a really bad exacerbation this fall it did not help. The Celexa also seemed to help but that one I cannot be sure of. It's possible it correlated with her also just getting better.

 

Also started Advil a few days before antibiotics and noticed a HUGE difference in symptoms from that. Really obvious.

 

Because of her symptoms, I really beleive she has PANDAS though I have no official diagnosis. OUr doctor is accepting the possibility and prescribing antibiotcs but knows nothing about it. I hope to see Dr. Trifiletti soon.

 

Hope that helps.

 

Angela