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Hello,

 

my 7 year old son was misdiagnosed with ASD at 5years old and ADHD at 3 and half. We have taken him off the ADHD med because it's one you can stop immediatly and saw a positive response. Next came the weaning of 1mg of risperidal 3x a day that was a complete nightmare. Aggression/attacking us ( he bite my arms so bad I couldn't wear short sleeve shirts for a month). Crying/screaming, violent, insomnia, constipation, vomiting, anxiety, concentration problems, confusion, crying spells, delusions, depersonalization, dizziness, headaches, irritability and the list goes on and on. Basically do NOT ever put your child on risperidal. So now he has been off completely for a month and a few days. Just wondering if anyone knows when it will be completely out of his system. He is still showing many signs of it being in his system. Any help and idea is VERY welcome.

 

Thanks!

Amie

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Amie --

 

In our experience, it's less the drug (risperadol) still being in the system, than the brain's natural chemistry attempting to return to balance once the impacts the drug is designed to have (reducing certain neurotransmitters or preventing receptors from functioning normally, etc.). Our DS was on risperadol for only a short period, but weaning off it still caused some "brain zaps" and other similar unpleasant things. He was quite a bit older than your DS at the time, however (12), so I'm guessing his resulting behavior may have been more moderated because he had a few more coping and/or verbal skills available at his disposal.

 

I had another family member who took a psych drug (not risperadal, but an antidepressant which every piece of literature and the doctor said "few if any withdrawal side effects"), and weaning off of it was brutal, even when the weaning schedule was taken at a much slower pace than the doctor had originally prescribed. Horrible nightmares, brain zaps, irritability, insomnia, vertigo . . . you name it, he had it. But he was an adult, so he did his best to contend with it in a mature way.

 

Bottom line: I think very, very, VERY few doctors with prescribing privileges for these substances have any real clue as to how a person's brain responds to these substances, and particularly to removing them once they've become accustomed to them. We found that the most truthful, reliable information in this regard was usually anecdotal accounts on chatboards and blogs on the internet. Just another example for your doctor(s) to warn you against "believing everything you read on the internet." <_<

 

All the best to you. Hopefully, your DS is nearing the point at which all the confusing withdrawal symptoms and thoughts/feelings he can't fully articulate will begin to abate.

Edited by MomWithOCDSon
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Regrettably, my son was on Risperdal in summer 2014 for 10 weeks (against my better judgment and before anyone had suggested PANDAS to me). At the 10 week mark he developed dystonia, which at first I mistook for tardive dyskinesia and literally about had a breakdown. Weaning him off didn't result in the behaviors you describe (bless your heart, and his) but it took about another 10 weeks for the myoclonic activity (the dystonia) to subside. I think Nancy is right in that it takes time for things to get back in balance.

 

Also, if he is taking anything else, please make sure you are positive they could not also continue the behaviors and symptoms you are seeing. We added gabapentin before the Risperdal. I was under the impression that the gabapentin would just ease his anxiety, which it did, but over time it also caused aggressive and destructive behavior. I kept him on the gabapentin after weaning the Risperdal and the aggressiveness I had attributed to the Risperdal was actually being caused by the gabapentin. It also contributed to the dystonia but I had to dig deep to find that to be the case as the dystonia is apparently a rare side effect (the local doc said, "dystonia just doesn't happen. But here it is, happening). Once he was off both things got better, but it still took much longer than I wanted. I wish I had a more optimistic story to tell, but I think it may take time.

 

And I agree with you - based on our experience Risperdal is evil and should be avoided at all cost.

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  • 3 weeks later...

Thank you both for your response it actually makes me feel like I am not going crazy. It's been 8 weeks off risperidal and he is still doing terrible the doctor said it could take up to 9 months for the brain to return to it's natural balance after being on the medication. The saddest part is the doctor says as soon as it's back to normal our son will be normally functioning developmental child. Risperidal is not even FDA approved for children the more I learn and talk to people it really should only be prescribed for adults with schizophrenia. They are giving it out like ADHD medications. The fact is risperidal is not a long term medication it is only suppose top be used in emergency scituations not long term so that means all these children have to withdraw at some point or another. It is the worst drug ever. After our son is completely done with the risperidal effects he will come off a really small dose of clonadine then he will be psych med FREE forever. For PANDAS psych meds are the worst thing to give PANDAS kids but problem is most PANDAS docs are psychiatrists and they still believe in controlling the behaviors with psych meds. We are lucky our PANDAS doc is only doc that's a pedi that specializes in it so is an expert in antibiotics and works with the TOP rumatologist in the country and they are 100% against psych medications. PANDAS is a medical condition NOT a mental health condition. You treat mental health with psych drugs and medical with medical drugs. it's just unfortunate that most of these docs are psychiatrist and don't know how to treat with antibiotics only psych medications which is not the right course for PANDAS. I wish you luck on your journey. It's definitly been a tough one for us and we have learned there are a lot of uneducated doctors out there:-(

Amie

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Nancy what are these brain zaps you refer to?

 

We did Risperdal for 2 months or so. It seemed to provide relief from aggressive and violent rages, which are extremely difficult to manage. Interestingly enough, they did better off Risperdal than on it when we went to withdraw.

 

I hope you can manage the next 7 months, that sounds miserable. Hang in there.

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Dasu --

 

As it wasn't me going through the withdrawal, I can only share what my relative shared with me, which was that, while trying to wean off an antidepressant according to the weaning schedule provided him by his doctor, he experienced a number of unpleasant side effects, such as these "brain zaps." He said they were literally like "zaps" -- like a very fast, brief shot of electricity hitting his brain; said it almost felt like the world's shortest migrane, with a lightning-fast "blip" in vision, inability to think, pin-pointed pain, usually in one specific spot, etc.

 

I can only imagine how disturbing and/or disorienting such a reaction would be to a younger person whose experience and coping skills were less mature, as well as their ability to articulate what was happening to them. Yikes!

 

I have a different perspective than MarcyJ, given our experience. While I definitely believe in medical treatment for PANDAs/PANs, I cannot entirely discount (throw the baby out with the bathwater) the benefits of also employing some psych med interventions during the PANDAS/PANS healing trajectory, or maybe even beyond, depending upon each individual's situation. But I do agree that too many doctors and/or psychs fail to fully account for or apply appropriate caution in prescribing, and I also think that many of them can reach too fast for the "heavy-hitters" like risperadol without having adequately explored other options.

 

Wishing the best for you!

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Hello in regards to the last post,

 

The only problem with Psych meds helping with the symptoms/behaviors of PANDAS/PANS kids while they heal is that psychiatric medications are the worst medications (proven studies) to give to PANDAS/PANS kids. Actually if your child responds to these psychiatric medications while being treated for PANDAS/PANS there may be a questions as to whether or not the child actually have PANDAS/PANS. See children with this disorder don't respond to psychiatric medications it is a known fact that they make the PANDAS worse. It may look like they are doing their job but it's the PANDAS getting better and the psych meds just being a band aid or doing nothing at all just making it worse and harder in the long run when your child has to wean off the medication.

 

It's a catch 22. Most PANDAS doctors are psychiatrists but think about it if you got strep throat would you go see a psychiatrist? No you would go see your pedi or general family doctor? Why because psychiatrist have NO idea how to treat with antibiotics they only know psychiatrist medications that's what they are trained in. That's why all these poor PANDAS kids are still being treated with psych meds mostly because the parents can't handle the behaviors so they try and mask them.

 

Since we know the TOP docs/advocates and psychiatric nurses that are now PANDAS nurses in this field that any psychiatric medication is bad for your child with PANDAS we decided to wean (slowly) off all. Unfortunately what comes along with that is horrible detoxing but we decided as parents to go through the detox with our son and make him as comfortable as possible deal with the nightmare because if we used psych meds to help us along he would eventually have to come off them anyways. We have TONS of support in place, ABA therapy, PCA and respite services.

 

But keep in mind if you and your doctor think your child has PANDAS/PANS and responds to psychiatric medications most likely they don't have the disorder. My son never responded to the meds.(number 1 indicator he had PANDAS all along plus and a very high ASO strep blood titer) His old psychiatrist would put him on all kinds of SSRI's, blood pressure meds and risperidal and he responded horribly to all of them. He was taken immediately off them because of his bad immediate symptoms on them but with risperidal they would just increase and increase and then one day my in-home therapist was at my house and I was like OMG I forgot to give my DS his risperidal (15 minutes late) so I gave it to him and 20 minutes later my therapist goes you do know he is 100% worse since you gave him the risperidal right? He saw it immediately. It's weird sometimes you need another set of eyes and ears to open your own eyes. So please remember and again I don't want to offend giving their kids psych meds if they need them then they need them I am not against psych medications. I know a lot from the biggest and top experts out there regarding PANDAS/PANS that really know the disorder you can't get to these people (fortunately I have since my sons case was so bad) they are 100% against psychiatric medications for PANDAS/PANS kids. My son is still on small dose of clonadine that my doctor doesn't want to take him off until he is done detoxing from the risperidal but I can't wait for the day my son is completely psych med free. Here is something to keep in mind my doctor is sort of a secret he will only take true PANDAS/PANS patients so you need a referral and a two- 2 hour screenings before he will even see your child and he has a 100% success cure rate works with TOP rumatologist in our area and THE most public/best publicly listed PANDAS doctor in our area is a psychiatrist and he calls my doctor (not a psych doctor) weekly for advise on his patients and this specific psych doctor doesn't take patients unless it's through his private practice and it's out of pocket first visit is $5,000. So remember if your child is responding well to psychiatric medications he/she may not have PANDAS it's sad but true. But I wish all those parents out there on their journey the best of luck. We know ours has been a tough one but we are seeing a light at the end of the tunnel and my son is actually much better off the risperidal then he ever was on it. I have learned a lot the hard way and feel as though I should share my story to help others out there. Good Luck!!!

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MarcyJ --

 

I have great respect for your experiences and opinions, and it sounds as though you have an excellent team and supports in place for your child. Heartfelt congratulations, truly! This forum is for the purposes of support, so I don't intend to feed an argument. But while I'm not offended by anything you've shared or expressed, I do have concerns that it may be somewhat misleading and/or unhelpful to some others or potential newbies who may happen across this discussion. Having been through the PANDAS/PANs during some 12 years and now (knock on wood) having successfully made it through to the other, healthy-living shore, I feel compelled to share OUR experience and the benefits of our care team, research, etc.

 

1) All "psych" drugs are not equal, so categorically drawing the line at all of them is not particularly helpful, IMHO. I think we're better off sharing our experiences on a one-by-one basis, particularly as every person's chemistry (PANDAS/PANS or non-PANDAS/PANS)is entirely singular, painting this item with such a broad brush may do some people a disservice.

 

2) You state that all of the "top" docs in the field (PANDAS/PANS) are "100% against" any psych meds; this is not our experience. It IS our experience, however, that knowledgeable PANDAS/PANs docs believe in aggressive medical interventions for PANDAS/PANS and do not embrace any psych drugs as a primary line of treatment. Having visited, attended conferences at which they've spoken, and/or corresponded with many of the top practitioners in the PANDAS/PANs field, I know that a number of them support and even recommend -- albeit cautiously and judiciously -- some psychiatric med supports, for those individual situations for which they appear to be warranted, in addition to the medical interventions, therapy, etc.

 

3) Sorry, but it is just not true that if your child responds positively to psych drugs, then he/she does not have PANDAS/PANS. On this forum alone, I can identify over a dozen families for whom BOTH PANDAs/PANs and some successful psych drug interventions have done wonders for our kids; we're one of those families, but there are many, many more.

 

In the end, it may be that, for your DS and his physical and neurotransmitter make-up, most if not all, psych meds are ill-advised. And your point that simultaneous use of psych drugs and medical interventions for PANDAS/PANs "muddies the water" in terms of discerning improvements and/or the actor bringing about those improvements, is well-taken. Particularly in young kids with dramatic PANDAS behavioral presentations, I'm certain every specialist would prefer a "clean slate" for medical treatment, without the added complication of psych med impacts. And certainly, for younger children, I think all parents are well-served to pursue and at least rule out PANDAS/PANs and all available medical interventions before going the psych med route, partially for the diagnostic advantages and partially because, even if psych meds are eventually found to be beneficial in your individual situation, most of us would prefer to implement them as late in childhood, and as sparingly, as possible.

 

We all benefit from sharing, particularly as our experiences extend time-wise and we see our kids go through all the growth, maturation, healing, etc. through this challenging PANDAS/PANs thing. Hopefully, we all learn some new things from one another and can therefore make the best possible decisions for our own loved ones.

 

I know this forum has been unbelievably beneficial and inspirational to my family and has helped us see our DS from the brink of madness at age 12 to healthy college sophomore at age 19. Here's wishing you and yours, and everyone who stops by here, the best, smoothest, most expedient path to a healthy, happy, life!

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  • 1 month later...

Hi,

 

Thank you so much for your feedback. But I have to disagree on my end PANDAS as of 2016 there is way more information out there and working with the nationwide advocate (who has and is working on 50k cases ) and I spoke personally to Dr. Cunningham ( came up with the Cunningham Panel ) most famous PANDAS doctor and her clinical nurse who was a psychiatric nurse for 40 plus years before she started working with Dr. Cunningham and she told me word for word NO child with PANDAS should be treated with psychiatric medications. If they are and they respond well it can be very, very likely they do not have PANDAS. My advocate and doctor (who no one can even get in to see and "the" TOP PANDAS doc (psychiatrist who only takes patients through his private practice now and you have to pay $2500 first visit out of pocket) in Boston who is well known as the one to go to in Boston calls my son's doctor every week on advice on how to treat because psych doctors don't know how to treat with antibiotics they know how to treat with psych meds which again I have been told by THE top experts in the country are not to be used on PANDAS. I have been to conferences work with the only respite care provider in MA/Boston that specializes in PANDAS and he says the same thing. Back in the day they used psych meds. It is now being questioned by the FDA and it's under a huge amount of scrutiny. it's been all over the news. My husband is high end PR and just got a TV spot for a well know PANDAS doctor talking about the wrong use of psych meds on PANDAS kids. I don't want to disagree with what you are saying but it's 2016 a lot has changed with PANDAS over the years and doctors/advocates/parents are getting more educated and as they do it is widely known do NOT go to a doctor who uses psych meds on your child if they have PANDAS. But unfortunately most PANDAS doctors are psychiatrists. My son is still detoxing terribly off risperidal (psych med) and if he was never put on it he would now be a typically functioning 8 year old child. The psych meds have slowed down his treatment and is making him go through a horrible detox similar described by Dr. Cunningham's clinical nurse is like a heroin addict does after they stop using. Same would be if he was on an SSRI or anti anxiety medication. Many are hospitalized because the detox is so bad. So remember if your child has PANDAS and you are going to use psych meds to treat and help along with the behavior remember they will eventually need to come off them and that is worse then even given children non FDA approved meds for children. It's all over the news a child died on same med as my son as a side effect. It was on dateline. It is a well known fact psych doctors are prescribing too many of these medications to children some need it so if they do then that's the parents decision. We had to make that decision before our son was diagnosed with PANDAS but as soon as he was and I was educated by the TOP in the field and the best I would never ever give my child another psych medication. I would rather deal with the horrible detoxing instead of putting him on more psych meds that he will eventually have to come off of.

 

 

Here is a blurb on psych meds and PANDAS- see they are starting to realize they are unusually sensitive to psych meds (because they are not good for PANDAS kids) this was written a few years ago.

 

Children with PANDAS appear to be unusually sensitive to the side-effects of SSRIs and other medications, so it is important to “START LOW AND GO SLOW!!” when using these medications. In other words, clinicians should prescribe a very small starting dose of the medication and increase it slowly enough that the child experiences as few side-effects as possible. If symptoms worsen, the dosage should be decreased promptly. However, SSRIs and other medications should not be stopped abruptly, as that could also cause difficulties.

For the latest research on the treatment of PANDAS, please visit Information on PANDAS.

 

So sorry I completely disagree with you and would listen to the experts in the field and to all those parents out there try and find a PANDAS doctor that is not a psychiatrist or at least one that doesn't approve of psychiatric medications for treating the symptoms as the antibiotics are suppose to be doing their job it slows down the recovery and they will eventually have to wean off anyways so why put your child through that, It does't make sense. You need to educate yourself with the top experts on this medical disorder not mental disorder there is 100 times more information out there then there was 10-12 years ago. That was a long time ago and treatments were longer now doctors can treat with the correct antibiotics and kids can get well faster. Our son because of the psych meds will take maybe more than a year. Just please think long and hard I would NEVER want to see a family go through what we have all because of wrong diagnosis and treatment with psych medications. Wouldn't you rather treat the PANDAS with no psych meds then with psych meds even if it helps the symptoms in the meantime they will eventually have to go off these meds they are not meant to be long term and will have to wean eventually, I wish I knew then what I know now and I am just trying to help families out there, I have done my research work with number one advocate in country for this and only respite care provider and ONLY pediatrician in MA that treats PANDAS I have covered my basis on the PANDAS vs. Psych medications. It's worth putting up with the behaviors/aggressions while your child heals then to put them through basically ###### weaning/detoxing them off very powerful medications. I sat with the director of nurses at an IEP meeting for all the schools in a huge city (largest in MA) and she turned to me and said I am so sorry that your son was put on this medication and t's completely disgusting that your son was ever put on such a medication and even I know PANDAS kids don't respond to these medications.

 

Again I am not disputing what you did for your son and all the other families you are referring to and I am glad it worked and has worked for many other children but now in 2016 they are not treating PANDAS as a mental health issue it's a medical issue so psych meds are not the route to go. There are 1,000's of reports/evidence out there supporting this. Our advocate said when her son was treated 12 years ago they tried to use some psych meds to help with the symptoms but it made him worse. You have to do the research from now on.. Not back a few years ago a lot has changed and will continue to change there are investigations on dateline and other huge media shows now that PANDAS is coming out into the light. So to all you parents out there struggling with this horrible medical disorder (not mental) my PCP said he treats autoimmune encephalitis all day long long and it's the same thing except PANDAS in pediatric and is caused by strep. He treats with Antibiotics NOT psych medications. He said you don't treat autoimmune encihalitis with psych medication it's an infection in the blood stream that affects the frontal globe of your brain you treat with antibiotics to get rid of the infection. It's common knowledge if you think about it. My doctor was horrified my son was treated with psych meds and his grandson was autistic and they found out he had PANDAS and all his symptoms went away in 3 months because he was NEVER on psych medications.

 

Please do your research and it's not OK for people on forums to say it's OK to use psych medications on children for PANDAS when they don't need them. Having your child go on a psych medication is a HUGE decision for a family and if there is research and proven information that their children do not need psych meds then they should know that as of 2016 psych meds and PANDAS is hugely disputed. Now if they were autistic and had severe behavioral or oppositional defiance disorders or anxiety and or depression then yes psych medications are OK to use. And some of these symptoms show up with PANDAS but it prolongs the treatment we are 100 steps backwards because of the medications that should never have been prescribed and were only prescribed because he was misdiagnosed. Maybe psych meds worked on your child but why use them if they are saying NOW they are not needed and PANDAS kids don't even respond positively to them??

 

 

It's not OK to say it's OK to use psych meds when it's each individual families choice and right now the information out there is saying it's the wrong choice. Just do a lot of research before you let the doctor prescribe anything to treat the symptoms.

 

 

Just do your research - deciding to put your child on a psychiatric medication is a hard enough decision but it is nothing compared to weaning them off.

 

Hope this helps and has you dig a little deeper and investigate psych meds with PANDAS, If you had strep would you go see your psychiatrist or your PCP? think of it that way. Imagine having strep and it is making you have some strange behaviors and your PCP prescribing your a psych med along with an antibiotic wouldn't you question that? If it's an infection then why would you need a psych medication. Also read brain on fire. Very helpful books. I am staying positive on this forum and just trying to educate as I have been educated. Now I have to be throughly educated on the horrible detoxing of risperidal because it has basically destroyed my son and my family and I truly would never want another family to go through what we have.

 

Good luck!

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Hmm. After 6 years since a PANDAS diagnosis,

and being well read up on it, treating it,

I still find it hard to believe at times.

It does look like mental illness, autism, ADHD, et al.

I think it is 'normal' for a parent to say

you know what, maybe a psych pill that costs me $10

can help. These insurance docs seem to think so- let's give it a go.

Not to mention perhaps the child is violent or so ill a hospital ward is considered.

My dd11 is on Risperadone.

.50 in am, .50 afternoon. It is the lowest dose and w/ her weight very low,

but it's there.

Other psy meds only lasted 1 or 2 days with immediate negative results.

So pick your poison

Long term antibiotics, IVIG's of pooled donor blood,

there is no right or wrong.

My daughter had the best year of growth and happiness this last year,

and it continues. I tried to remove an antibiotic,

and loss of control came back. So she's back on it, and back at baseline.

It is a LOT of work, special diet, special PANS Dr., supplements, pills.

But when she is baseline/ stable, her mind and spirit grow. She banks learning, positive experience, self esteem, peace in her family.

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