How do you know when to reduce psych meds?

[peglem]

I haven't seen this discussed here, and Allie is not close to recovery (just close to more aggressive treatment), but I'd like to get this figured out anyway. The only med she is on is Lamictal (originally for possible seizures, kept on for mood stabilization). It helps just a little. (we think it does anyway). But, I'm thinking the problem it was prescribed for is a PANDAS symptom (emotional lability), so how would one know, when recovering from PANDAS, what effect that med is now having or when its time to ween. If treatment removes the symptom-how do you know whether some behavior your seeing is a side effect of the medication in response to a more normalized system?

I feel like I'm not asking this right...Okay. if you gave the med to a typical kid, you'd expect it to mess things up, not straighten them out, so if a child already on the med begins to become more typical, is the med a problem then?

[Megs_Mom]

I haven't seen this discussed here, and Allie is not close to recovery (just close to more aggressive treatment), but I'd like to get this figured out anyway. The only med she is on is Lamictal (originally for possible seizures, kept on for mood stabilization). It helps just a little. (we think it does anyway). But, I'm thinking the problem it was prescribed for is a PANDAS symptom (emotional lability), so how would one know, when recovering from PANDAS, what effect that med is now having or when its time to ween. If treatment removes the symptom-how do you know whether some behavior your seeing is a side effect of the medication in response to a more normalized system?

I feel like I'm not asking this right...Okay. if you gave the med to a typical kid, you'd expect it to mess things up, not straighten them out, so if a child already on the med begins to become more typical, is the med a problem then?

 

This is such a great question - something we think about a lot. We did not use SSRI's because of this question. If the typical PANDAS episode is 6-12 weeks, and it takes 4-8 weeks for the SSRI to work, then you could just be seeing the PANDAS waning from an exacerbation vs the SSRI actually working. And then if you keep giving it, even though the underlying issue is there, then what will the SSRI cause? I have been looking for research studies on the effect of SSRI's on kids who do not have anxiety disorders, so that I could better understand what you could expect to see. This is beyond the question of activation, of course. Look forward to seeing what answers you get on this.

[melanie]

I haven't seen this discussed here, and Allie is not close to recovery (just close to more aggressive treatment), but I'd like to get this figured out anyway. The only med she is on is Lamictal (originally for possible seizures, kept on for mood stabilization). It helps just a little. (we think it does anyway). But, I'm thinking the problem it was prescribed for is a PANDAS symptom (emotional lability), so how would one know, when recovering from PANDAS, what effect that med is now having or when its time to ween. If treatment removes the symptom-how do you know whether some behavior your seeing is a side effect of the medication in response to a more normalized system?

I feel like I'm not asking this right...Okay. if you gave the med to a typical kid, you'd expect it to mess things up, not straighten them out, so if a child already on the med begins to become more typical, is the med a problem then?

 

This is such a great question - something we think about a lot. We did not use SSRI's because of this question. If the typical PANDAS episode is 6-12 weeks, and it takes 4-8 weeks for the SSRI to work, then you could just be seeing the PANDAS waning from an exacerbation vs the SSRI actually working. And then if you keep giving it, even though the underlying issue is there, then what will the SSRI cause? I have been looking for research studies on the effect of SSRI's on kids who do not have anxiety disorders, so that I could better understand what you could expect to see. This is beyond the question of activation, of course. Look forward to seeing what answers you get on this.

 

Hi Peg

 

Were always dealing with the med stuff ,I will just give a little less just a little for a few days and just see ..Then if all is well just a little less.Sometimes it works and sometimes not so much.I think hes doing great and bam something else shows up.We tried lamictial hes the one in a million whos allergic

thats the one I really wanted to use with him.The risperadol and after his 1st IV we did decrease to .25 2x a day from .50 2x a day.I havent seen a difference so hey ok then..Sometimes especially with our kids less is more.

 

You can always go back up if you see thing getting worse.

 

Melanie

[melanie]

I haven't seen this discussed here, and Allie is not close to recovery (just close to more aggressive treatment), but I'd like to get this figured out anyway. The only med she is on is Lamictal (originally for possible seizures, kept on for mood stabilization). It helps just a little. (we think it does anyway). But, I'm thinking the problem it was prescribed for is a PANDAS symptom (emotional lability), so how would one know, when recovering from PANDAS, what effect that med is now having or when its time to ween. If treatment removes the symptom-how do you know whether some behavior your seeing is a side effect of the medication in response to a more normalized system?

I feel like I'm not asking this right...Okay. if you gave the med to a typical kid, you'd expect it to mess things up, not straighten them out, so if a child already on the med begins to become more typical, is the med a problem then?

 

This is such a great question - something we think about a lot. We did not use SSRI's because of this question. If the typical PANDAS episode is 6-12 weeks, and it takes 4-8 weeks for the SSRI to work, then you could just be seeing the PANDAS waning from an exacerbation vs the SSRI actually working. And then if you keep giving it, even though the underlying issue is there, then what will the SSRI cause? I have been looking for research studies on the effect of SSRI's on kids who do not have anxiety disorders, so that I could better understand what you could expect to see. This is beyond the question of activation, of course. Look forward to seeing what answers you get on this.

 

Hi Peg

 

Were always dealing with the med stuff ,I will just give a little less just a little for a few days and just see ..Then if all is well just a little less.Sometimes it works and sometimes not so much.I think hes doing great and bam something else shows up.We tried lamictial hes the one in a million whos allergic

thats the one I really wanted to use with him.The risperadol and after his 1st IV we did decrease to .25 2x a day from .50 2x a day.I havent seen a difference so hey ok then..Sometimes especially with our kids less is more.

 

You can always go back up if you see thing getting worse.

 

Melanie

 

 

BUT WAIT!!!

 

If shes on a specific ammount for seizures dont mess with it!!!!!Can make her have a seizure

[peglem]

Well, we're not sure about the seizures- did an 8 day video EEG (that was a lot of fun ) and though there was abnormal activity, no clear seizure patterns were discovered. However, the things we thought might be seizures (gaping mouth, with "uh, uh,uh" and fluttering eyelids) did go away on lamictal. But this happened during the post T&A PANDAS exacerbation...so don't know if that would still be happening outside of exacerbation, nor do we really know if the improvements we have seen with any med is the med or improvement in the PANDAS.

I guess what I'm getting at is when you are in recovery...say from IVIG, how will you be able to tell if some of those residual (or even new) things are caused by a med that is no longer needed or still left over from PANDAS? Or, what is the possibility that the neurotransmitter modulator (psych med) could be interfering with recovery?

I'll have to talk to her psychiatrist about this, I guess...she probably doesn't have an answer, but may have some ideas of what we can try.

[MomWithOCDSon]

Well, we're not sure about the seizures- did an 8 day video EEG (that was a lot of fun ) and though there was abnormal activity, no clear seizure patterns were discovered. However, the things we thought might be seizures (gaping mouth, with "uh, uh,uh" and fluttering eyelids) did go away on lamictal. But this happened during the post T&A PANDAS exacerbation...so don't know if that would still be happening outside of exacerbation, nor do we really know if the improvements we have seen with any med is the med or improvement in the PANDAS.

I guess what I'm getting at is when you are in recovery...say from IVIG, how will you be able to tell if some of those residual (or even new) things are caused by a med that is no longer needed or still left over from PANDAS? Or, what is the possibility that the neurotransmitter modulator (psych med) could be interfering with recovery?

I'll have to talk to her psychiatrist about this, I guess...she probably doesn't have an answer, but may have some ideas of what we can try.

 

What a great question! I wish I had a great answer in return, but I, too, have been wrestling with this.

 

Our son was on an SSRI (Luvox) prior to our discovering PANDAS and treating with abx, so in the interest of not changing up too much at one time and risk throwing him into a worse or even continued quandry, we've kept the SSRI level while adding the abx. I have not seen the SSRI making any issues worse; he has only been improving while on the abx.

 

In his previous life as an "OCD kid," our psychiatrist was always interested in weaning him off his pscyh meds when he would achieve and maintain a "level," waning period, so I know that he is on board with getting my DS off of these meds in the event it is clear he's no longer in need of them. So, despite his skepticism regarding PANDAS and the efficacy of the abx, I will not have a problem acquiring his help weaning off the SSRI once DS reaches equilibrium again.

 

That's my plan for now, anyway . . . .