Question about Risperdal

[filinha1]

Hi All,

 

My 10 yr old dd was put on risperdal a month ago. Prior to starting treatment for PANDAS/PANS she was treated for OCD with 30 mgs of celexa and she became highly aggressive and psychotic. Her p-doc determined that this 'activation' indicates she has bipolar disorder. I don't know if he is right but my gut tells me he's wrong and that it is the result of high doses of ssri's used on a PANDAS child. I know this may not be wise but I have weaned her down from 1 mg daily to 0.75 mgs. I have done this without telling p-doc because he was very helpful during a crisis and I'm afraid he will wash his hands of us if I disagree with his diagnosis of BP and OCD. (He doesn't completely refute PANDAS/PANS, but is a Hopkins trained doc who doesn't buy into it either.) She is also taking a half of a 25 mg dose of zoloft.

 

Anyone here have any experience with risperdal in treating mood lability and aggression in PANDAS/PANS kids? How long was it used, how long to spend decreasing dosage and how to do that while concurrently increasing zoloft?

 

Thanks in advance for your thoughts,

 

Heather

 

PS - dd has confirmed Lyme w/ no co-infections and high strep antibodies.

[momcap]

 

Anyone here have any experience with risperdal in treating mood lability and aggression in PANDAS/PANS kids? How long was it used, how long to spend decreasing dosage and how to do that while concurrently increasing zoloft?

 

 

We used risperdal for mood lability and aggression for DS9 without any success. We continued for several months before weaning off. As I recall we weaned gradually, dropping the dosage 1 week at a time until off. He was on a low dose, so I think we had 2 weeks to get off, but it was a while ago, so I'm not 100% sure. This was all before we found out about PANDAS and lyme, so he was not receiving any antibiotics at the time, and was not taking zoloft or anything else to complicate matters. One thing our doc has always told us - only change 1 variable at a time so you can establish cause and effect. If you drop 1 med while increasing another you won't know if symptoms or side effects are from the drop, or the increase. Better to do 1 thing slowly, and when finished do the next thing.

 

It sounds like we have a very similar situation - DS9 has confirmed lyme, negative on coinfections (but not entirely convinced), high strep antibodies, and PANDAS. He also went manic on SSRIs. Based on our personal experience I am concerned. If an SSRI caused mania in the past, then upping zoloft without the stabilizing effect of risperdal might cause mania again. I totally understand not wanting to tell the pdoc, but would be very concerned playing around with psych med dosages without a professional opinion. We have had some VERY extreme negative reactions to med and dosage changes with our kiddo. Why are you stopping risperdal? Not working? Negative side effects? ...??? Is the zoloft helping? We tried zoloft for 4 days which resulted in a MAJOR manic episode. I would be very cautious. Of course, everyone responds differently, so just because our experience with these 2 meds was negative, doesn't mean your dd's will be. Just my 2 cents, for what they are worth.

[tpotter]

We are using naltrexone. Our LLMD had suggested it several years ago, and I'm not sure why we didn't use it then, but DS17 is now using it, and has been for about 1/2 a year. Normal dose is about 4.5 mg (above that will give a lot of side effects.) We started at 2.5 mg, and slowly built up. Helps the immune system, too. Seems to really be helping.

[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.

 

Thanks, Heather