Jump to content
ACN Latitudes Forums
  • Announcements

    • Administrator

      Forum Community Guidelines

      Forum Community Guidelines

      Our forums provide support for people dealing with neurological and related issues. Everyone joining this community should find it a safe haven where they are treated with respect, civility, and understanding.

      Your agreement as a user: You agree that you will not use this forum to post or send messages that are knowingly false, inaccurate, abusive, vulgar, obscene, profane, or sexually oriented. Text should not be defamatory, harsh, accusatory, intimidating, slanderous, an invasive of a person's privacy, or violate any law. Doing so may lead to you being banned (and your service provider may be informed). The IP address of all posts is recorded to aid in enforcing these conditions. You agree that the webmaster, administrator, and moderators of this forum have the right to remove, edit, move, or close any topic at any time should they see fit. You agree not to post any copyrighted material unless the copyright is owned by you or by this forum/website. Advertisements, solicitations for services or business, most research requests, as well as any type of research on the content of these forums by third-parties, are prohibited. Unauthorized use or reproduction of posts on these forums is not allowed. Any user who feels that a posted message is objectionable is encouraged to contact an administrator.

      Announcements, media requests, and research requests

      These need administrative approval. Please send to an administrator before posting.

      Inappropriate content

      Members are here for support and education. Check the list below for types of posts that are not allowed: Advertisements Flames or messages meant to intimidate, criticize, or harass others Threatening or obscene messages Messages discussing a private message (PM) from others Copyrighted materials that you do not own the rights to, except educational or research articles Messages containing or condoning illegal acts; also messages of suicidal intent Direct discussion of politics (please avoid) Specific or strong religious views Requests for donations for other organizations unless approved by administrator Solicitation of members for research, media projects or other projects, without prior administrative approval About links for other websites:

      You may have links in your profile as long as they do not violate our guidelines (above). Links within a post to online resources and articles are generally OK. Do not post links to other forum communities with the aim of soliciting other members to that community, thereby taking them away from this community.

      When a guideline is violated

      If you violate a guideline, you will be contacted by PM or email. We will try to resolve things amicably. We don’t like to ban members and rarely do, but this is an option.

      Updated March 19, 2010
    • Administrator

      Disclaimer and Privacy Policy

      Disclaimer

      The ACN Online Discussion Boards are intended to provide helpful information and allow sharing of ideas. Postings should not be considered as medical advice. All users should consult with their healthcare professional for questions or medical decisions.

      Users must accept full responsibility for using the information on this site and agree that ACN, Latitudes.org, advisory staff or others associated with the site are not responsible or liable for any claim, loss, or damage resulting from its use. Please remember that we do not actively monitor all posted messages and cannot be responsible for the content within. We can also not guarantee that access to the site will be error-free or virus-free.

      Reproducing any document in whole or in part is prohibited unless prior written consent is obtained. Web pages may be shared when passed on with the URL.

      Information posted on the Forum is done so voluntarily and will be accessible to the public. The material posted may be used by ACN (without the identity of the user) for publications or educational purposes. No compensation will be provided for the use of this material.

      Note: ACN is providing this service with the expectation that users will abide by the guidelines provided. We reserve the right to monitor postings and remove or refuse inappropriate and questionable material, as well as remove dated postings at our discretion, for any reason.

      Privacy Policy

      When you register with the Forum, you need only give your email address, which is available only to the Adminstrators and will not be shared on the Forum site or with others in any format. Forum users will see only the user name you choose to provide.

      Our web server collects and saves default information logged by World Wide Web server software. Our logs contain the date and time, originating IP address and domain name (the unique address assigned to your internet service provider's computer that connects to the internet), object requested, and completion status of the request. We use these logs to help improve our service by evaluating the "traffic" to our site in terms of number of unique visitors, level of demand, most popular page requests, and types of errors.

      You have the option of enabling to save your username and password data when you are accessing interactive parts of our websites, to allow your web browser to "remember" who you are and assist you by "logging on" without you having to type your username and password repeatedly. This is known as a cookie and it can be enabled or disabled in your control panel. Cookies are small files stored on your computer's hard drive that are used to track personal information.

      Except for authorized legal investigations, we will not share any information we receive with any outside parties.

      Updated March 19, 2010

MarcyJ

Members
  • Content count

    10
  • Joined

  • Last visited

  1. My son has PANS he has strep and chronic sinusitis . Both cause cause PANS. They are both genetic reversible conditions.
  2. Hi. My son is strictly PANDAS . He was misdiagnosed for 6 years all MH DX and many many such meds that made him worse finally got rich DX and antibiotic and Anti-inflammatory meds, and with Behavioral therapy saw huge improvement last 3 months of school last year ( bust still long way to go) school paid for a $30K summer school based summer camp where the kids and staff were sick every single week, my son flared so bad everyday, it set him so far back in his recovery ( poop smearing , aggression which we had 98% decreased, peeing his pants all day long) complete nightmare after so much hard work , therapy in-house 6 days a week, weaned detoxed off all psych meds on antibiotics sine March 2016 and special contract first ever signed with my private providers in a public school setting. So my doctor ( only pedi that is a PANDAS specialists ) currently has my son on a 65 day long steroid taper he started his at the highest medical dose possible 60mg. We currently have about 20plus days left and he is on 12.5 mg and just started back to school part time. Doctor says the higher the dose and the longer the taper the better chances you have of suppressing the immune system, ( NO LYME) and you only have to do it 1 time. It will stop the immune system from creating the anti-bodies that attack the brain when he is around sick children ( flaring) hopefully. He also said the MORE aggressive he is the BETER the taper is working and the longer it will continue to work. Well my son is still VERY VERY aggressive, Shorter burst. He is still flaring too when around sick kids or has a cold right now. So any advice ( we do have meeting with doctor today) our doctor is very smart since he is a pediatrician and is trained on how to use steroids unlike most PANDAS docs that are psych docs and works with top rheumatologist in Boston. BUT this is his first Taper. he has done bursts but never a taper, But he is done the research and works with the top PANDAS experts in the field and he feels confident this is the right way to do it. I am a nervous wreck. My son had horrible head pain AE. 3 Aleve a day. Then when we started it went away. But then 20 days in he was exposed to respite care proved who was very very ill and we believed he flared and the head pain came back. But it's gone again. But it sounds like from other posts it comes back as soon as the taper is over? And it also sounds like he should be not aggressive anymore. But 12.5mg is still a very high dose for a 9 year old? Maybe we won't see the lessening of aggression until 5mg? I know the doc said the more aggression the better but everyone else said their kids got much calmer at 2 weeks in? Anyone suggestions? Advice? Anyone ever do a 60 plus day taper starting at 60mg going all the way to 5mg? thanks so much for any feedback,
  3. Hi. My son is strictly PANDAS . He was misdiagnosed for 6 years all MH DX and many many such meds that made him worse finally got rich DX and antibiotic and Anti-inflammatory meds, and with Behavioral therapy saw huge improvement last 3 months of school last year ( bust still long way to go) school paid for a $30K summer school based summer camp where the kids and staff were sick every single week, my son flared so bad everyday, it set him so far back in his recovery ( poop smearing , aggression which we had 98% decreased, peeing his pants all day long) complete nightmare after so much hard work , therapy in-house 6 days a week, weaned detoxed off all psych meds on antibiotics sine March 2016 and special contract first ever signed with my private providers in a public school setting. So my doctor ( only pedi that is a PANDAS specialists ) currently has my son on a 65 day long steroid taper he started his at the highest medical dose possible 60mg. We currently have about 20plus days left and he is on 12.5 mg and just started back to school part time. Doctor says the higher the dose and the longer the taper the better chances you have of suppressing the immune system, ( NO LYME) and you only have to do it 1 time. It will stop the immune system from creating the anti-bodies that attack the brain when he is around sick children ( flaring) hopefully. He also said the MORE aggressive he is the BETER the taper is working and the longer it will continue to work. Well my son is still VERY VERY aggressive, Shorter burst. He is still flaring too when around sick kids or has a cold right now. So any advice ( we do have meeting with doctor today) our doctor is very smart since he is a pediatrician and is trained on how to use steroids unlike most PANDAS docs that are psych docs and works with top rheumatologist in Boston. BUT this is his first Taper. he has done bursts but never a taper, But he is done the research and works with the top PANDAS experts in the field and he feels confident this is the right way to do it. I am a nervous wreck. My son had horrible head pain AE. 3 Aleve a day. Then when we started it went away. But then 20 days in he was exposed to respite care proved who was very very ill and we believed he flared and the head pain came back. But it's gone again. But it sounds like from other posts it comes back as soon as the taper is over? And it also sounds like he should be not aggressive anymore. But 12.5mg is still a very high dose for a 9 year old? Maybe we won't see the lessening of aggression until 5mg? I know the doc said the more aggression the better but everyone else said their kids got much calmer at 2 weeks in? Anyone suggestions? Advice? Anyone ever do a 60 plus day taper starting at 60mg going all the way to 5mg? thanks so much for any feedback,
  4. Hi.. Our son is on Keflex for 8 months and his doc just recently started him on Augmentium 850 in AM and 850 in PM for 21 days for the reflex alone wasn't reducing strep titers. Anyone else have any luck with these 2 antibiotics used together. And son only on since 6 days and we see more speech. But he is sick again so he is flaring right now. Does Augmentium work fast and well for PANDAS? Also anyone use Gutpro for their PANDAS child I have been reading a lot on how probiotics are bad for PANDAS but there is a probiotic Gutpro specifically designed for PANDAS because it's D-lactade free. And may even help with recovery? Any advice on both these topics is greatly appreciated. Thanks
  5. Hello, My son has been diagnosed with PANDAS we do have a PANDAS doctor who we are NOT looking to leave but need a second opinion from an expert for our son is a tough case with very high titers. We greatly respect our doctor and he has a great care rate but none of his patients are as sick as our son. He went 5 years misdiagnosed and mistreated on several horrible psych medications so his recovery is set back. Anyone seen Dr. Elizabeth Tapas- Newton Wellesley Hospital Immunologist. She has a 4-6 month waiting list I have heard but will wait if she is good and has good results with PANDAS kids. Our son has very high strep titers that are not going down with antibiotics alone in 8 months. Our current doctor willing to work with another doctor to get our son better. We have appointment with Dr. Trifinetti in Jan in NJ we have appointment with Dr. Bock in Dec in NY (yes I know he is in MA but easier to get appointment if you go out of state. Have consulted with Geller - he was great and spoke to me over the phone- only taking private patients not through MGH. It's fine we are willing to pay out of pocket for the right doctor. It is worth it I think to see Geller for he is the best and at least all labs will be covered through insurance even if appointments/consultations are not. Really don't want to go the IVIG route and avoid as much as possible. Any help/suggestions/feedback on experiences appreciated. Thanks so much!
  6. Weaning Off of Risperidal

    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!
  7. Weaning Off of Risperidal

    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!!!
  8. Weaning Off of Risperidal

    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
  9. 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
  10. Every article and doctor/advocate I have spoke to says the two worst medications for PANDAS is ADHD meds and risperidal. Hope this helps.
×