Psych. drugs/

[Wilma Jenks]

Is it common that psych. drugs do not work with PANDAS kids?

[thereishope]

Well, I think it's important to remember that some kids will act worse on them, some may need lower dosages (as oppose to upping it as many psychs do), and that some kids have shown signs of improvement after going off of them.

 

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

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.

 

I believe even the IOCDF Fact Sheet has posted the "warning" of psych drugs and PANDAS kids as well.

[Guest pandas16]

Is it common that psych. drugs do not work with PANDAS kids?

 

 

It was explained to me that PANDAS is an autoimmune disease- meaning the underlying problem is an abnormal immune response. Consequently, the immune system is what needs to be fixed/ suppressed in order to see the disease improve in many cases. A lot of the SSRI's that are on the market target a chemical imbalance in the brain which is NOT PANDAS. PANDAS is an inflammatory disease which temporarily affects neuronal signaling until the infection is gone or the immune system is calmed. Even if an SSRI were to work- it would only be a band-aid and not get at the root cause of the disease. I personally have PANDAS and reacted very badly to SSRI's. I will never go on them again. I know that Dr. K warns against them on his website as well. The only new drug that I may be tempted to try in a severe exacerbation would be Riluzole- that is the current drug that Susan Swedo (PANDAS expert) is looking at in order to help kids with PANDAS.

Edited January 27, 2011 by pandas16

[peglem]

I think using psych meds, 1st of all, muddies the waters by adding another variable. Is your child improving because they are recovering or because of the meds, and vice versa if they get worse.

Before we knew what we were dealing with and before we knew appropriate treatment, we tried many different medications-SSRIs and anti-psychotics and we made changes when my daughter would worsen (she was only going from bad to worse in those days). Honestly, nothing really helped until we started using abx. It was very apparent at that point that she would improve ALOT on abx, w/ no changes in psych meds.

Its not that she never responded favorably to psych meds- it was just so inconsistent. We still do use valium to help with desperate times or to get her through stressful situations. But, last Dec. we had some new physical symptoms that were not PANDAS related and it turned out she was having side effects to some meds we were using to help with PANDAS symptoms. So, I guess its hard to tell, when healing starts, when its time to withdraw psych meds as well. Withdrawing meds produces symptoms as well, then its hard to tell if those are withdrawal symptoms or PANDAS symptoms.....

 

All that being said- sometimes things are bad enough that you just have to have some symptom relief and deal with the consequences of that later.

[Ozimum]

Our doc explained that a very low dose of an SSRI would only help if there's enough serotonin to work on. If there isn't you gotta wonder what the SSRI might do, especially with a high dose!

Edited January 26, 2011 by Ozimum

[peglem]

Our doc explained that a very low dose of an SSRI would only help if there's enough serotonin to work on. If there isn't you gotta wonder what the SSRI might do, especially with a high dose!

Well, SSRIs did absolutely nothing for my daughter- not worse, not better, and we tried @ 5 different ones before we moved on to risperdal. Maybe she didn't have enough serotonin?

[Ozimum]

Quote: "Maybe she didn't have enough serotonin?"

 

Hi Peglem... It's possible... My reading of this on this forum is that high doses of SSRIs are problematic for PANDAS kids and our doctor's explanation as to why makes some sense to me. If some healing comes of a low dose then that's great, but our kids still have PANDAS... PANDAS16 is right on the money.

[Wilma Jenks]

my child screams and gets more violent on EVERY medication she takes. including azith. nystatin and probiotics. she gets worse on EVERYTHING. what could be wrong???? i don't know what else to do. are there doctors or specialists that treat hard to diagnos cases. it's just too much. i don't know how much this child and we can take.

[Stephanie2]

my child screams and gets more violent on EVERY medication she takes. including azith. nystatin and probiotics. she gets worse on EVERYTHING. what could be wrong???? i don't know what else to do. are there doctors or specialists that treat hard to diagnos cases. it's just too much. i don't know how much this child and we can take.

 

I know that you were told by two pandas docs to disregard that lyme testing you did, but I still think you should get a lyme specialist to interpret the report, tell you which follow-up tests to do and possibly treat and see what happens. Could be way off base here, but personally I would not be able to get past that report if it were mine. Just a thought. Came to me when you said that everything makes here worse (die off or herx due to underlying lyme)? Azith treats lyme and could provoke a die off reaction.

[Wilma Jenks]

do you know of a lyme specialist that i could contact. thanks so much

[GraceUnderPressure]

My ds18 has low serotonin. Initially his neuro wanted him to take a low dose of zoloft to see if it helped, but I rejected it as a solution because I was so sure that my ds's problem was not low serotonin, but whatever is causing it to be low. (And I was right - so nice to be able to say that for a change)

 

However, Dr. R talked me into trying low dose zoloft (initially 50mg, recently upped to 75mg with his latest exacerbation). He said it is only for symptomatic relief while we work on finding & treating the underlying cause. It has helped a little. My ds is so messed up now that even a little is a lot if you KWIM. He needed the ray of hope.

 

There have been studies that showed that zoloft seems to positively affect one part of the immune system - maybe you can search it or someone hear can help with that - so there is more to it than just its effect on serotonin uptake.

 

It's definitely a proceed with caution kind of decision, but several moms here told me that it helped their kids back when I was trying to decide whether or not to use it.

[Bill]

My son has been diagnosed with PANDAS and Lyme, bartonella, suspected babesia.

 

When behavior became scary five years ago, we relented. 12.5mg of Zoloft provided relief within hours. Son was 8 at the time. After ~4 months we rose to 25mg. Zoloft work for almost 3 years at that dose. Then OCD slammed into his life accompanied by extreme raging. Going up to 100mg had no effect. It took several months to get to prozac. I forget the original dose. The response was not as dramatic as we saw with Zoloft but within a week. He was on as high as 60mg. We now have him down to 20mg. At 20mg I would say he's edgy but I prefer that he be that than unnaturally good natured (if that makes sense to anyone struggling with these behaviors).

 

We still work with Dr. Perlmutter (past 1 1/2 years). She has never found a combination that touches his OCD or does better for his anger issues. She continues to monitor while we treat everything else.

 

We don't like it. I don't advocate for them. It works for him - right now.

 

We are ~3 months into treatment for Lyme..........There is no way to know if Lyme (and friends) or strep was first. When we started Zoloft, it would be 3 more years before we ever heard the term PANDAS and more than 4 years before we discovered Lyme and friends.

Edited January 27, 2011 by Bill

[MomWithOCDSon]

My ds18 has low serotonin. Initially his neuro wanted him to take a low dose of zoloft to see if it helped, but I rejected it as a solution because I was so sure that my ds's problem was not low serotonin, but whatever is causing it to be low. (And I was right - so nice to be able to say that for a change)

 

However, Dr. R talked me into trying low dose zoloft (initially 50mg, recently upped to 75mg with his latest exacerbation). He said it is only for symptomatic relief while we work on finding & treating the underlying cause. It has helped a little. My ds is so messed up now that even a little is a lot if you KWIM. He needed the ray of hope.

 

There have been studies that showed that zoloft seems to positively affect one part of the immune system - maybe you can search it or someone hear can help with that - so there is more to it than just its effect on serotonin uptake.

 

It's definitely a proceed with caution kind of decision, but several moms here told me that it helped their kids back when I was trying to decide whether or not to use it.

 

We're in a similar boat. When this last, big exacerbation hit in October 2009, SSRI's did nothing for our DS, though we tried nearly every one, and in varying dosages. After several months on antibiotics, however, we decided to try a low dose of Zoloft. Now it seems that a physically healthier DS (thanks to the abx) is further assisted by the Zoloft, and he's doing better these days than he's done in almost two years. Someone here had posted an abstract a while back about the anti-inflammatory properties of SSRI's, and I took it to our psych; he was already aware of it, saying that now doctors are prescribing low-dose SSRI's for prevention of heart disease, etc. So, as Grace has said, potentially there are some benefits here for some kids, depending upon their chemistry, though proceeding with caution and at very modest initial doses and increases would be our experience.

[MomWithOCDSon]

My son has been diagnosed with PANDAS and Lyme, bartonella, suspected babesia.

 

When behavior became scary five years ago, we relented. 12.5mg of Zoloft provided relief within hours. Son was 8 at the time. After ~4 months we rose to 25mg. Zoloft work for almost 3 years at that dose. Then OCD slammed into his life accompanied by extreme raging. Going up to 100mg had no effect. It took several months to get to prozac. I forget the original dose. The response was not as dramatic as we saw with Zoloft but within a week. He was on as high as 60mg. We now have him down to 20mg. At 20mg I would say he's edgy but I prefer that he be that than unnaturally good natured (if that makes sense to anyone struggling with these behaviors).

 

We still work with Dr. Perlmutter (past 1 1/2 years). She has never found a combination that touches his OCD or does better for his anger issues. She continues to monitor while we treat everything else.

 

We don't like it. I don't advocate for them. It works for him - right now.

 

We are ~3 months into treatment for Lyme..........There is no way to know if Lyme (and friends) or strep was first. When we started Zoloft, it would be 3 more years before we ever heard the term PANDAS and more than 4 years before we discovered Lyme and friends.

 

Hi Bill -- Boy, does your story sound familiar! Our DS was first diagnosed with "regular OCD" at age 6, and at age 7, when his second "flair/exacerbation" hit, he was prescribed a low dose of Lexapro. (Both at the first onset and this first subsequent exacerbation, I inquired about the possibility of PANDAS but was waved off.) Whether purely health-related coincidence or some contributory (anti-inflammatory?) effect, DS did very well over the next 4.5 years with periodic CBT and the low-dose Lexapro. Then, beginning in Spring 2009 and sort of "hitting the wall" in October 2009, he hit an exacerbation that threw him into a downward spiral and, at that point, not only did the Lexapro not work, but neither did Prozac, Zoloft or Luvox. It wasn't until after several months of antibiotics and we began to try low doses of SSRI's (first we reduced his Luvox dramatically, then switched to low-dose Zoloft) that we saw any positive impact by the SSRI again. And like you, it definitely isn't as dramatically positive at this stage as it seemed to be 5 years ago, but we do see some positive gains with it.

 

I don't know about you, but I've been left wondering just how all the pieces fit together. Was he healing on his own successfully at an earlier age (re, without the added help of abx) and that's why the Lexapro seemed to help him for so long? Or was the Lexapro entirely ineffective and it was just a coincidence? Or did the Lexapro somehow help protect him for that period after all? Or did the Lexapro help mask some of his behaviors for a period until his auto-immune reaction became so severe that it burst through the SSRI?

 

On our end, we haven't seen any distinct personality changes with the SSRI's. In other words, he hasn't become "unnaturally good natured," just less stressed out and better able to manage the remaining OCD tendencies. Now, with some of the other psych drugs we were given during the depths of his illness, before abx -- like Seroquel, Risperadal, Zyprexa -- THOSE made huge differences in his personality (deficits, actually, I would say), and we're determined never to go back to those!

 

All the best to you and your DS!

[Bill]

My son has been diagnosed with PANDAS and Lyme, bartonella, suspected babesia.

 

When behavior became scary five years ago, we relented. 12.5mg of Zoloft provided relief within hours. Son was 8 at the time. After ~4 months we rose to 25mg. Zoloft work for almost 3 years at that dose. Then OCD slammed into his life accompanied by extreme raging. Going up to 100mg had no effect. It took several months to get to prozac. I forget the original dose. The response was not as dramatic as we saw with Zoloft but within a week. He was on as high as 60mg. We now have him down to 20mg. At 20mg I would say he's edgy but I prefer that he be that than unnaturally good natured (if that makes sense to anyone struggling with these behaviors).

 

We still work with Dr. Perlmutter (past 1 1/2 years). She has never found a combination that touches his OCD or does better for his anger issues. She continues to monitor while we treat everything else.

 

We don't like it. I don't advocate for them. It works for him - right now.

 

We are ~3 months into treatment for Lyme..........There is no way to know if Lyme (and friends) or strep was first. When we started Zoloft, it would be 3 more years before we ever heard the term PANDAS and more than 4 years before we discovered Lyme and friends.

 

Hi Bill -- Boy, does your story sound familiar! Our DS was first diagnosed with "regular OCD" at age 6, and at age 7, when his second "flair/exacerbation" hit, he was prescribed a low dose of Lexapro. (Both at the first onset and this first subsequent exacerbation, I inquired about the possibility of PANDAS but was waved off.) Whether purely health-related coincidence or some contributory (anti-inflammatory?) effect, DS did very well over the next 4.5 years with periodic CBT and the low-dose Lexapro. Then, beginning in Spring 2009 and sort of "hitting the wall" in October 2009, he hit an exacerbation that threw him into a downward spiral and, at that point, not only did the Lexapro not work, but neither did Prozac, Zoloft or Luvox. It wasn't until after several months of antibiotics and we began to try low doses of SSRI's (first we reduced his Luvox dramatically, then switched to low-dose Zoloft) that we saw any positive impact by the SSRI again. And like you, it definitely isn't as dramatically positive at this stage as it seemed to be 5 years ago, but we do see some positive gains with it.

 

I don't know about you, but I've been left wondering just how all the pieces fit together. Was he healing on his own successfully at an earlier age (re, without the added help of abx) and that's why the Lexapro seemed to help him for so long? Or was the Lexapro entirely ineffective and it was just a coincidence? Or did the Lexapro somehow help protect him for that period after all? Or did the Lexapro help mask some of his behaviors for a period until his auto-immune reaction became so severe that it burst through the SSRI?

 

On our end, we haven't seen any distinct personality changes with the SSRI's. In other words, he hasn't become "unnaturally good natured," just less stressed out and better able to manage the remaining OCD tendencies. Now, with some of the other psych drugs we were given during the depths of his illness, before abx -- like Seroquel, Risperadal, Zyprexa -- THOSE made huge differences in his personality (deficits, actually, I would say), and we're determined never to go back to those!

 

All the best to you and your DS!

 

Thanks much Nancy. I should also clarify my statement (new to posting on the boards, still learning be careful with how I phrase things) When I stated "unnaturally good natured," I was really referring to the fact that he had no reason to be as upbeat as he was. For example, he might be in the throes of an OCD ritual, I'm yelling at him to push through it, and he remains calm and smile the whole way through. (Please tell me others lose their patience....) So like your DS, no personality changes.

 

It's an interesting question regarding SSRI vs. healing vs ? In our case, I periodically would try to lower the dose with Zoloft by just 1/2 tablet. In all cases, we would be forced to go back up within two days. For him, SSRIs have made a world of difference. BUT - and this is the value of this forum - he might

have started an antibiotic at the same time he started the Prozac. It was all around the same time that we got in to see a PANDAS knowledgeable psych who also prescribed augmentin - I think, yep, wife just confirmed. Prozac and augmentin started same time. Hmmmm