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Risperdal for PANDAS/PANS?


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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

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My daughter was originally put on risperdal and zoloft. I also did not agree w/the risperadal addition and the psychiatrist kept wanting to increase that and not the zoloft. I did ultimately switch psychiatrist who agreed to decrease the risperadal and increase zoloft. My daugther ended up getting a breast lump (side effect of risperadal) after only 6-8 weeks on it and we stopped it. This was 1 year prior to her PANDAS diagnosis. I would say trust your gut.

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I decided to reply, as my dd has been on risperadone/risperadal.

We are the backwards story here, having first treated bio-medically, then PANS, then Lyme all for years, then after all that, getting a dx for autism and trying some of these drugs recently.

 

From your post, and your history, it sounds to me like too much is going on at one time- is your child still on antibiotics?

IMO, risperadone or any SSRI'S should be introduced slowly, and 1 at a time spaced weeks apart, with you taking copious notes for any type of reaction.

If you overlap them so close to one another, you cannot tell what is what. And, if you are treating Lyme or infections at the same time, having die off,

it can be a mess, and very hard on the liver.

 

Every child is different, and some of us bring in co-morbid issues. For us, risperadone did work at stopping some violent rages (it is also used to treat autism, not just bi-polar)

We did try and add an SSRI'S, Zoloft, for the very first time this last month.

It was a No Go- as soon as this med started kicking in, day 10-11, it increased my dd's OCD to levels I hadn't seen in 2 years, including her fears from that time about dogs coming through her bedroom window, etc.

I pulled it 100% immediately, and will never try an SSRI for her again. As soon as that drug left her system, these fears are gone again.

But because we had no other new factor's at the time of this trial, it was plain to see it was this drug.

 

Lastly, depending on which Dr. you are seeing, that particular Dr. is going to give you their information based on their expertise.

Best wishes-----

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S and S --

 

I know that this has been discussed before, but have you had your DD tested for methylation anomalies? I ask because

my DS had terrible fears that reduced dramatically when we started giving him methylfolate. He has the C677T++ variation of the MTHFR gene.

 

I decided to reply, as my dd has been on risperadone/risperadal.

We are the backwards story here, having first treated bio-medically, then PANS, then Lyme all for years, then after all that, getting a dx for autism and trying some of these drugs recently.

 

From your post, and your history, it sounds to me like too much is going on at one time- is your child still on antibiotics?

IMO, risperadone or any SSRI'S should be introduced slowly, and 1 at a time spaced weeks apart, with you taking copious notes for any type of reaction.

If you overlap them so close to one another, you cannot tell what is what. And, if you are treating Lyme or infections at the same time, having die off,

it can be a mess, and very hard on the liver.

 

Every child is different, and some of us bring in co-morbid issues. For us, risperadone did work at stopping some violent rages (it is also used to treat autism, not just bi-polar)

We did try and add an SSRI'S, Zoloft, for the very first time this last month.

It was a No Go- as soon as this med started kicking in, day 10-11, it increased my dd's OCD to levels I hadn't seen in 2 years, including her fears from that time about dogs coming through her bedroom window, etc.

I pulled it 100% immediately, and will never try an SSRI for her again. As soon as that drug left her system, these fears are gone again.

But because we had no other new factor's at the time of this trial, it was plain to see it was this drug.

 

Lastly, depending on which Dr. you are seeing, that particular Dr. is going to give you their information based on their expertise.

Best wishes-----

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Hi Ifran,

Yes, we did in the beginning when she was with a top DAN! Dr.

She is double A1298C.

DAN! at the time thought because of this mutation, not an issue.

I have given her a YASKO RNA supplement for A1298C, and worked on detoxing ammonia for her-

no difference.

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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

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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,

Edited by S & S
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  • 1 month later...

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

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Oh this brings back big sad memories when all these drugs were thrown at my son. I hate to sound prescriptive but these drugs are going to make things worse if your child has Pandas/ lyme.

Seriously I would run from the DR's prescribing all that to my child from what I know now.

You know that Risperidol is a anti psychoic - and your child has celiac & lyme ?? Have you read the side effects of this

medication, please do the side effects can come on and you don't know what tics are from the medicine or the other health problems.

Really all these medications, you need to highlight all the side effects, to make sure they aren't having a side effect.

Amoxillicin won't hardly touch the lyme disease. How do you know if your child does not have C- diff from taking it so long? Have you been using high powered Probiotics? Yeast??

 

Did you mean hyper thyroidism or hypo thyroid?

And then the Celiac ? Are you doing the diet to a "T" ?? That can make a huge difference for your child's over all well being, as well as the thyroid issues. The Diet needs to be followed like you

would someone who is a diabetic, its serious!! And it can have an over all improvement on the child's well being, out look on life. But it takes up to a year to get the gluten out of all the organs.

The thyroid regulates hormones and so many systems in the body, it has to be supported.

If its hyper thyroidism, I so hope your with a good Endocrine DR, this is serious!! So is hypothyroidism which can turn into Hashimoto's - the autoimmune thryoid disorder, so relates to lyme disease.

 

My son 2 yrs ago, laned in the ER with hyper thyroidism, with so high of antibodies they could not read the results, off the charts, and was on a heart montior for 4 months! I had to take his blood pressure

for 2 months, every 4 hrs so I could dose the anti thyroid meds. He was almost motionless for 30 days. The DR's did not think he would make it.

 

PM me if you want more advice, I feel like I could write all night to you about all this. You need to see top specialist for all these things you mentioned. Celiac alone is super serious, as is the thyroid issue, and lyme.

they all affect the brain and how well you act and think. Seriously I feel awful for you and your child.

 

Allie

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DS, was put on Risperdal and Prozac at 6 years old. What the heck.... It sent him off the deep end. I thought he was going to seriously hurt himself. He acted like he was possessed. I didn't know what he had, but I knew the meds had to go. We stopped both of them and later came back with a very low dose of Prozac. Prozac at a very, very low dose can have an anti-inflammatory effect.

 

Now that I have seen how much antibiotics and IVIg have helped our situation, I am just stunned at the way the medical system looks at a whole generation of children. Dispensing pills is easy, practicing medicine is much harder.

 

Cobbie

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We have not tried Risperadol, however, at one point my son who has never in 4 years been violent, angry, mean,was put on zyprexa and brought up to 20 mg in a week. The drug made him angry, mean...took him off and 3 weeks later he was fine. I think these drugs affect every person differently and I would be really careful with anti psychotics. My ds 23 is on 10 mg prozac now and we are switching to luvox at end of month but...only 25 mg. Dr. wants to go really low which we are happy about.

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My son was on Risperdal & developed tardive dyskinesia, you thought normal tics were fun. Thus was mind blowing horrible to get rid of, we just had to wait. Made him psycho, all of those kinds of meds made him psycho. Abilify made him suicidal. I wouldn't do it, ever again. Dr M prescribed all of this, why I will never know. Antibiotics my son, has always responded to. Now Ivig. My daughter was on Wellbutrin and anxiety meds, same issues, weaned her off once we figured out she was Pandas. Now on antibiotics, much better.

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My DD12 improved when put on abx and zoloft; severe rages stopped. I knew it would be hard to know which was helping because she was put on them around the same time. She has been on the same dose abx for several months now. Her zoloft began at 12.5 mg and over many months we have slowly upped it to 75 mg. Fears and ocd are somewhat better. Weekly therapy is helping, although psychologist suggested adding .25 risperadal. Psychiatrist said no risperadal. Dr. L. wants to do IVIG to see if we can get DD to 100%. I also like that our psychiatrist doesn't want to leave my daughter on the zoloft indefinitely. She wants to try it 6-10 months, then wean her off. I understand not wanting to do psych meds; I was afraid to go there too. But for some kids I think they can help some. And I so appreciated our doc agreeing to go low and go slow. Also, it seems we are dealing with PANDAS only. Thankfully no lyme or mycoplasma. We are still trying to find what will work for good.

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My son was on Risperdal & developed tardive dyskinesia, you thought normal tics were fun. Thus was mind blowing horrible to get rid of, we just had to wait. Made him psycho, all of those kinds of meds made him psycho. Abilify made him suicidal. I wouldn't do it, ever again. Dr M prescribed all of this, why I will never know. Antibiotics my son, has always responded to. Now Ivig. My daughter was on Wellbutrin and anxiety meds, same issues, weaned her off once we figured out she was Pandas. Now on antibiotics, much better.

 

Risperdal scares the bejeezers out of me b/c of the issue with tardive dsykinesia. My understanding is that sometimes it can be permanent.

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