Risperdal for PANDAS/PANS?

[EAMom]

Thanks for the input.

 

To clarify, the chain of events for us was, last fall - dd stopped eating completely, cried for hours, couldn't separate from me and/or husband, fears of being poisoned, no bathing, brushing teeth - went to Dr. L. who diagnosed probable PANS (strep and Lyme) and referred us to an infectious disease guy at Georgetown, who flat out told us he didn't believe in PANDAS/PANS, but would do a spinal tap for Lyme if we wanted, based on his professional relationship with Dr. L - we tried repeatedly to get a phone call w/ Dr. L to discuss but were told to make an appt. to come in and discuss - husband and I felt we did not want a relationship w/ a doc who wouldn't talk to us on phone at all and started looking for a different provider- dd improving enough to eat from 30 course of amoxicillin prescribed by Dr. L to get us by from first appt. until we had more info - first visit w/ p-doc who does not ridicule PANS but doesn't treat according to that diagnosis either - he prescribes increasing doses of celexa to treat OCD until we get to 30 mg - dd becomes aggressive and psychotic - celexa stopped within a week and risperdal started, increasing to 1mg over 10 days and p-doc says dd is bi-polar, based on 'activation' from celexa - dd calm enough on risperdal to remain at home in our care - first visit w/ Lyme literate nurse practitioner - abx to treat Lyme and strep started - blood-work results also show celiac and high thyroid antibodies in addition to positive Lyme tier and strep antibodies - dd improving slowly over the course of a month (less irritability, fewer OCD behaviors, can do some schoolwork, increased self-care) - I decide to try decreasing risperdal and decrease to 0.75/day - zoloft at 1/2 25mg dose started by p-doc to treat ocd.

 

This is the point where I reached out to the group for advice. Responders are correct - we don't know at this point what is effecting the positive changes. Risperdal? Low-dose zoloft? Abx? New gluten-free diet? Waxing and waning?

We do have too much going on at once. Ugh!

 

I'm worried about the risperdal because of all the potential effects of that med. It did work for us however and is perhaps what is keeping dd functioning. So. Advice heard not to discontinue risperdal and/or increase zoloft on my own without professional advice. I just wish there was a p-doc in my area who was on board with and knew how to treat a PANDAS/PANS kid effectively.

 

Finally, on the methylation topic - how do I research this? Any ideas on the best place to start?

 

Thanks, Heather

 

 

What is a P-doc?

 

So you saw Dr. Latimer, improved on the antibiotics she rx'd, but then didn't see her beyond the first visit...and now you are working with a hopkins trained doc (this is actually a bad thing in the world of PANDAS since the biggest naysayer, Harvey Singer is at hopkins)?

 

It sounds like this Hopkins doc isn't actually treating PANDAS, just trying to treat symptoms with psych meds. THe actually underlying issues (Lyme, strep, other infections, autoimmunity) need to be addressed.

 

Not sure why you got referred to an ID doc? b/c of possible Lyme?

 

Suggestion one, see a LLMD, don't rely on mainstream ID doc for lyme diagnosis/treatment. (Oops edit--sorry I see you are working with a LL NP.)

 

Personally, I would make a followup with Dr. L, and or make and appt with Dr. B (although I hear there is a long wait list).

Edited March 19, 2013 by EAMom

[pr40]

there are many doctors that "believe" in PANDAS. you need a doctor willing to TREAT it and knowing how to do it.

Bipolar is a description of symptoms, not the cause. if you dd has celiac, that means that she has a serious auto-immune issue which makes it likely that bipolar behavior might too be caused by auto-immune issues.

with our ds5, it was not only celiac but also dairy sensitivity and sometimes even high-fructose. So, I would ALSO do food elimination diet.

I don't know about giving psychotropic drugs to a child. There may be a shorter waiting list for Drs. K and T.

Edited March 19, 2013 by pr40

[SSS]

For those of us that have tried risperadone, trust me, the decision was not made lightly.

There are side effects for every treatment on this board, none of them mild.

We are all trying to do what is best for our children and families.

[EAMom]

there are many doctors that "believe" in PANDAS. you need a doctor willing to TREAT it and knowing how to do it.

Bipolar is a description of symptoms, not the cause. if you dd has celiac, that means that she has a serious auto-immune issue which makes it likely that bipolar behavior might too be caused by auto-immune issues.

with our ds5, it was not only celiac but also dairy sensitivity and sometimes even high-fructose. So, I would ALSO do food elimination diet.

I don't know about giving psychotropic drugs to a child. There may be a shorter waiting list for Drs. K and T.

 

agreed!

 

re Dr. T--I think he is pretty swamped right now, although he is worthy of consideration. I hear that some have trouble with follow up b/c he is so busy. (Although the bottom line is that all the top pandas docs are overextended).

re Dr. K-not sure he is a good fit with a child who has celiac, lyme, other issues...I haven't heard of him doing a great job of looking into those types of things

 

Assuming your dd is getting abs (and it was the LLNP that discovered the celiac?) for the Lyme...why not stick with treating that route. You need to address the Lyme (and strep and other infections, and celiac) first and foremost. With Lyme, that may take time. Why muddy the waters with multiple psych drugs (which may mask symptoms, but also cause their own set of problems)? NOTE: I'm not totally opposed to psych drugs in PANDAS kids. My own dd was on a low dose of prozac for years. Where we got into trouble (early on) was when multiple psych drugs were used. You also need to be very careful of the dosing in these kids. From personal experience, it is easy to make things worse with psych drugs and their side effects can look like pandas symtpoms.

 

Are there siblings? I would also throat culture family members to make sure there isn't strep in the household.

Edited March 19, 2013 by EAMom

[filinha1]

Thanks to everyone for continuing to weigh in on this topic. I will say that without the risperdal, our dd would have been hospitalized - she was that out of control. She has stabilized at .75 of the risperdal and 12.5 of zoloft. I tried recently to lower the risperdal to .5 and she got immediately worse again. I have confidence in our nurse practitioner, who is mentored by Dr. Jones. I'll pursue the risperdal issue further with her and see where we go.

 

As many of you know, deciding to use psych meds is not an easy choice; there is a reason we're all on this forum, which is often in conflict with mainstream medical treatment and that includes mainstream psychiatric treatment. I'm grateful for all the input, pro and con.

 

tx,

 

Heather

[filinha1]

Thanks for the input.

 

To clarify, the chain of events for us was, last fall - dd stopped eating completely, cried for hours, couldn't separate from me and/or husband, fears of being poisoned, no bathing, brushing teeth - went to Dr. L. who diagnosed probable PANS (strep and Lyme) and referred us to an infectious disease guy at Georgetown, who flat out told us he didn't believe in PANDAS/PANS, but would do a spinal tap for Lyme if we wanted, based on his professional relationship with Dr. L - we tried repeatedly to get a phone call w/ Dr. L to discuss but were told to make an appt. to come in and discuss - husband and I felt we did not want a relationship w/ a doc who wouldn't talk to us on phone at all and started looking for a different provider- dd improving enough to eat from 30 course of amoxicillin prescribed by Dr. L to get us by from first appt. until we had more info - first visit w/ p-doc who does not ridicule PANS but doesn't treat according to that diagnosis either - he prescribes increasing doses of celexa to treat OCD until we get to 30 mg - dd becomes aggressive and psychotic - celexa stopped within a week and risperdal started, increasing to 1mg over 10 days and p-doc says dd is bi-polar, based on 'activation' from celexa - dd calm enough on risperdal to remain at home in our care - first visit w/ Lyme literate nurse practitioner - abx to treat Lyme and strep started - blood-work results also show celiac and high thyroid antibodies in addition to positive Lyme tier and strep antibodies - dd improving slowly over the course of a month (less irritability, fewer OCD behaviors, can do some schoolwork, increased self-care) - I decide to try decreasing risperdal and decrease to 0.75/day - zoloft at 1/2 25mg dose started by p-doc to treat ocd.

 

This is the point where I reached out to the group for advice. Responders are correct - we don't know at this point what is effecting the positive changes. Risperdal? Low-dose zoloft? Abx? New gluten-free diet? Waxing and waning?

We do have too much going on at once. Ugh!

 

I'm worried about the risperdal because of all the potential effects of that med. It did work for us however and is perhaps what is keeping dd functioning. So. Advice heard not to discontinue risperdal and/or increase zoloft on my own without professional advice. I just wish there was a p-doc in my area who was on board with and knew how to treat a PANDAS/PANS kid effectively.

 

Finally, on the methylation topic - how do I research this? Any ideas on the best place to start?

 

Thanks, Heather

 

 

What is a P-doc?

 

So you saw Dr. Latimer, improved on the antibiotics she rx'd, but then didn't see her beyond the first visit...and now you are working with a hopkins trained doc (this is actually a bad thing in the world of PANDAS since the biggest naysayer, Harvey Singer is at hopkins)?

 

It sounds like this Hopkins doc isn't actually treating PANDAS, just trying to treat symptoms with psych meds. THe actually underlying issues (Lyme, strep, other infections, autoimmunity) need to be addressed.

 

Not sure why you got referred to an ID doc? b/c of possible Lyme?

 

Suggestion one, see a LLMD, don't rely on mainstream ID doc for lyme diagnosis/treatment. (Oops edit--sorry I see you are working with a LL NP.)

 

Personally, I would make a followup with Dr. L, and or make and appt with Dr. B (although I hear there is a long wait list).

[filinha1]

Thanks for the input.

 

To clarify, the chain of events for us was, last fall - dd stopped eating completely, cried for hours, couldn't separate from me and/or husband, fears of being poisoned, no bathing, brushing teeth - went to Dr. L. who diagnosed probable PANS (strep and Lyme) and referred us to an infectious disease guy at Georgetown, who flat out told us he didn't believe in PANDAS/PANS, but would do a spinal tap for Lyme if we wanted, based on his professional relationship with Dr. L - we tried repeatedly to get a phone call w/ Dr. L to discuss but were told to make an appt. to come in and discuss - husband and I felt we did not want a relationship w/ a doc who wouldn't talk to us on phone at all and started looking for a different provider- dd improving enough to eat from 30 course of amoxicillin prescribed by Dr. L to get us by from first appt. until we had more info - first visit w/ p-doc who does not ridicule PANS but doesn't treat according to that diagnosis either - he prescribes increasing doses of celexa to treat OCD until we get to 30 mg - dd becomes aggressive and psychotic - celexa stopped within a week and risperdal started, increasing to 1mg over 10 days and p-doc says dd is bi-polar, based on 'activation' from celexa - dd calm enough on risperdal to remain at home in our care - first visit w/ Lyme literate nurse practitioner - abx to treat Lyme and strep started - blood-work results also show celiac and high thyroid antibodies in addition to positive Lyme tier and strep antibodies - dd improving slowly over the course of a month (less irritability, fewer OCD behaviors, can do some schoolwork, increased self-care) - I decide to try decreasing risperdal and decrease to 0.75/day - zoloft at 1/2 25mg dose started by p-doc to treat ocd.

 

This is the point where I reached out to the group for advice. Responders are correct - we don't know at this point what is effecting the positive changes. Risperdal? Low-dose zoloft? Abx? New gluten-free diet? Waxing and waning?

We do have too much going on at once. Ugh!

 

I'm worried about the risperdal because of all the potential effects of that med. It did work for us however and is perhaps what is keeping dd functioning. So. Advice heard not to discontinue risperdal and/or increase zoloft on my own without professional advice. I just wish there was a p-doc in my area who was on board with and knew how to treat a PANDAS/PANS kid effectively.

 

Finally, on the methylation topic - how do I research this? Any ideas on the best place to start?

 

Thanks, Heather

 

 

What is a P-doc?

 

So you saw Dr. Latimer, improved on the antibiotics she rx'd, but then didn't see her beyond the first visit...and now you are working with a hopkins trained doc (this is actually a bad thing in the world of PANDAS since the biggest naysayer, Harvey Singer is at hopkins)?

 

It sounds like this Hopkins doc isn't actually treating PANDAS, just trying to treat symptoms with psych meds. THe actually underlying issues (Lyme, strep, other infections, autoimmunity) need to be addressed.

 

Not sure why you got referred to an ID doc? b/c of possible Lyme?

 

Suggestion one, see a LLMD, don't rely on mainstream ID doc for lyme diagnosis/treatment. (Oops edit--sorry I see you are working with a LL NP.)

 

Personally, I would make a followup with Dr. L, and or make and appt with Dr. B (although I hear there is a long wait list).

 

I thought a p-doc was a psychiatric doctor, but I may have my acronyms wrong...sorry!

 

We went to see Latimer and because of dd's positive Lyme titer, she sent us to see the ID guy at Georgetown. Why? We don't know - she did not explain. We were caught up in this previously unknown (to us), diagnosis, and we were just going along and trying to manage day to day. Seeing the ID specialist added to our confusion. As I mentioned, he disagreed with Lyme causing psychiatric symptoms, so we didn't understand what the purpose of that visit was. Was Dr. L following a protocol of some kind and crossing the T's before recommending IVIG? Did she want the Lyme treated first and was a spinal tap the way to ascertain ongoing infection?

 

I felt I wanted to clear this first with Dr. L, but as I wrote earlier, she would not do this by phone. We were told by her office staff to make an appointment to see her. My husband and I both felt left in the dark with our only option yet another very expensive visit to answer a few questions. We thought we were entitled to these answers 1. Should we do the spinal tap on a child who is now frightened of everything? and 2. Why should we consider a tap in the first place?

 

I have since talked to a number of parents who say that PANDAS/PANS docs are terribly overworked and cannot get to all the patients out there. I accept this as a reality but at the time, we were uncomfortable with having that kind of a relationship with a doctor. The NP we currently see specializes in Lyme. I can make a phone appointment with her as needed and that is a better fit for us.

 

Hope this clarifies my earlier post a bit.

 

Tx,

 

Heather

[ChrissyD]

Heather, I would love to know the NP you now see. If you wouldn't mind, please DM her name? Thanks.

[EAMom]

Thanks for the input.

 

To clarify, the chain of events for us was, last fall - dd stopped eating completely, cried for hours, couldn't separate from me and/or husband, fears of being poisoned, no bathing, brushing teeth - went to Dr. L. who diagnosed probable PANS (strep and Lyme) and referred us to an infectious disease guy at Georgetown, who flat out told us he didn't believe in PANDAS/PANS, but would do a spinal tap for Lyme if we wanted, based on his professional relationship with Dr. L - we tried repeatedly to get a phone call w/ Dr. L to discuss but were told to make an appt. to come in and discuss - husband and I felt we did not want a relationship w/ a doc who wouldn't talk to us on phone at all and started looking for a different provider- dd improving enough to eat from 30 course of amoxicillin prescribed by Dr. L to get us by from first appt. until we had more info - first visit w/ p-doc who does not ridicule PANS but doesn't treat according to that diagnosis either - he prescribes increasing doses of celexa to treat OCD until we get to 30 mg - dd becomes aggressive and psychotic - celexa stopped within a week and risperdal started, increasing to 1mg over 10 days and p-doc says dd is bi-polar, based on 'activation' from celexa - dd calm enough on risperdal to remain at home in our care - first visit w/ Lyme literate nurse practitioner - abx to treat Lyme and strep started - blood-work results also show celiac and high thyroid antibodies in addition to positive Lyme tier and strep antibodies - dd improving slowly over the course of a month (less irritability, fewer OCD behaviors, can do some schoolwork, increased self-care) - I decide to try decreasing risperdal and decrease to 0.75/day - zoloft at 1/2 25mg dose started by p-doc to treat ocd.

 

This is the point where I reached out to the group for advice. Responders are correct - we don't know at this point what is effecting the positive changes. Risperdal? Low-dose zoloft? Abx? New gluten-free diet? Waxing and waning?

We do have too much going on at once. Ugh!

 

I'm worried about the risperdal because of all the potential effects of that med. It did work for us however and is perhaps what is keeping dd functioning. So. Advice heard not to discontinue risperdal and/or increase zoloft on my own without professional advice. I just wish there was a p-doc in my area who was on board with and knew how to treat a PANDAS/PANS kid effectively.

 

Finally, on the methylation topic - how do I research this? Any ideas on the best place to start?

 

Thanks, Heather

 

 

What is a P-doc?

 

So you saw Dr. Latimer, improved on the antibiotics she rx'd, but then didn't see her beyond the first visit...and now you are working with a hopkins trained doc (this is actually a bad thing in the world of PANDAS since the biggest naysayer, Harvey Singer is at hopkins)?

 

It sounds like this Hopkins doc isn't actually treating PANDAS, just trying to treat symptoms with psych meds. THe actually underlying issues (Lyme, strep, other infections, autoimmunity) need to be addressed.

 

Not sure why you got referred to an ID doc? b/c of possible Lyme?

 

Suggestion one, see a LLMD, don't rely on mainstream ID doc for lyme diagnosis/treatment. (Oops edit--sorry I see you are working with a LL NP.)

 

Personally, I would make a followup with Dr. L, and or make and appt with Dr. B (although I hear there is a long wait list).

 

I thought a p-doc was a psychiatric doctor, but I may have my acronyms wrong...sorry!

 

We went to see Latimer and because of dd's positive Lyme titer, she sent us to see the ID guy at Georgetown. Why? We don't know - she did not explain. We were caught up in this previously unknown (to us), diagnosis, and we were just going along and trying to manage day to day. Seeing the ID specialist added to our confusion. As I mentioned, he disagreed with Lyme causing psychiatric symptoms, so we didn't understand what the purpose of that visit was. Was Dr. L following a protocol of some kind and crossing the T's before recommending IVIG? Did she want the Lyme treated first and was a spinal tap the way to ascertain ongoing infection?

 

I felt I wanted to clear this first with Dr. L, but as I wrote earlier, she would not do this by phone. We were told by her office staff to make an appointment to see her. My husband and I both felt left in the dark with our only option yet another very expensive visit to answer a few questions. We thought we were entitled to these answers 1. Should we do the spinal tap on a child who is now frightened of everything? and 2. Why should we consider a tap in the first place?

 

I have since talked to a number of parents who say that PANDAS/PANS docs are terribly overworked and cannot get to all the patients out there. I accept this as a reality but at the time, we were uncomfortable with having that kind of a relationship with a doctor. The NP we currently see specializes in Lyme. I can make a phone appointment with her as needed and that is a better fit for us.

 

Hope this clarifies my earlier post a bit.

 

Tx,

 

Heather

 

Hi Heather,

 

Oh! I thought p-doc was Pandas Doc!

 

I think the way to go, as it sounds like you are in the hands of a capable ll np, is to treat the Lyme (and celiacs and other issues.) Eventually your child may need IVIG, and at that point you might want to see another pandas doc.

 

Maybe Dr. Latimer is still mainstream enough where she doesn't refer Lyme to llmd's, just infect dz docs???( Does anyone know about this? ). I think Dr. B (and I assume Dr. t) actually refers patients to llmd's .

 

One approach might also to make an appt with Dr B (I hear he has quite a wait list anyway). Not sure, might take 4-5

mo to get in with him. But, in a few mo of might be good to get another perspective anyway. Also, I suspect he will be more Lyme knowledgeable (vs Dr L) as he is in CT.

[PowPow]

Heather,

I understand your concerns about not hearing back from Dr L. I do not know when you last saw her, but her office staff has some new policies in place and messages are much more likely to be answered than a year or so ago.

You can PM me of you want.

[WorriedDADNMOM]

Thought I would chime in. We have not done any SSRI drugs. We got right to a DAN doc. He has treated the infections, then via blood and urine tests treated vitamin and mineral deficiencies. Then doing all natural supplements for inflammation control, antivirals and Pyrrole disorder which from what I understand can be similar to Bi-Polar.

 

We have been very happy with the all natural approach. I think it is more expensive and harder to actually perform daily, but it and all the info regarding the supplements is all very simple. All our kiddos are young and have not seen any hormonal stuff go on------YET.

 

If anyone wants specifics, please PM us.