filinha1

Hi there, I have been where you are and I feel for you from the bottom of my heart. It is frightening, sad and leaves one feeling desperate. Hang on tight. From my experience, I would say don't treat the ocd with medications until the PANDAS/PANS is under control. Ssri's can make the situation much worse (hard to believe I know!), If you do decide to treat with ssri's consider giving your psychiatrist or other treating provider the ample information about medicating these kids; the smallest dose possible must be used and increased very slowly. Our dd became psychotic on 30 mgs of celexa, a dose normal in treating pediatric ocd. Our dd is currently taking 0.75 of risperdal. I wish we didn't have to use this, but it is the only thing that keeps her somewhat calm and functioning. You're right when you question how you will gage the efficacy of treating PANS if you have a psych med on board. We are in that position ourselves....not sure what is working because we chose to use risperdal to keep her from destructive rages. It's a hard call to make. While we were in the worst of it, I allowed dd to watch tv all day for about 3 months. Previously I was a parent who allowed tv on weekends only. I was already homeschooling when she got sick so attending school was not an issue for us, but during that time she was unable to do work of any kind. It is frightening to veer so far away from 'normal', but nothing about these situations is normal. Do what you have to do to get by until treatment is underway and then reclaim your child and your life slowly. This has been my experience and you'll get other, perhaps better, advice from members here. Whatever you do, take heart and believe that things will improve. I wish you and your family the best.

For those of us without an iphone, ipad, or any other i thing, will it download and work on a computer? The only i thing I have is an older ipod. I will do some research also. Thanks The app is only available to download for iPhone and iPad, I believe.

We've been using an iPhone app called Live OCD Free: http://www.liveocdfree.com It is a great adjunct to ERP therapy (it was made by an ERP therapist) and can be downloaded in an adult or kid version. My dd is 11 and uses the kid version. We have a few minor quibbles with the app (can't download your own music to the "Secret Weapons' tool and dd thought the explanation of kids defeating the "Worry Wizard" seemed too easy for something she finds so hard), but I find it to be a valuable tool. You can email progress reports from the app to a therapist and it is an unobtrusive way to practice ERP when anxieties hit away from home. Best of luck!

Any parents out there carriers for strep? I have my tonsils and have a bout of strep every year. My daughter has PANDAS/PANS. Any thoughts? tx, Heather

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

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

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

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.

My 10dd w/ PANS including PANDAS has celiac and high anti-thyroid antibodies.

Hi, I live in Pasadena MD. I'd love to join this support group or help get it off the ground! Thanks, Heather

Ok - thanks for the advice! I'd never even considered a Lyme rider, but I'll look into it.

Hello, Does anyone have experience using Coventry to pay for PANDAS and PANS treatments in Maryland? Our LLMD prescribed zithromax and Coventry is requiring pre-auth for more than 4 pills. My questions are the following: 1. If I ask my LLMD to call in for the pre-auth, am I putting her at risk to be hassled or worse, by Coventry? 2. Are there laws in Maryland to allow treatment for chronic Lyme and co-infections? Thanks for any input! Heather

Hello, Does anyone have experience using Coventry to pay for PANDAS and PANS treatments in Maryland? Our LLMD prescribed zithromax and Coventry is requiring pre-auth for more than 4 pills. My questions are the following: 1. If I ask my LLMD to call in for the pre-auth, am I putting her at risk to be hassled or worse, by Coventry? 2. Are there laws in Maryland to allow treatment for chronic Lyme and co-infections? Thanks for any input! Heather

Thank you.Can anyone recommend LLMD's in Maryland/DC? I haven't been able to locate any. Thanks again for the advice and the help.

Thanks for your response. Do you mind if I ask if your child was treated by her for Lyme? I'm wondering what her protocol is.

Does anyone have experience with Dr. Latimer treating PITAND triggered by Lyme? If so, did your child have a spinal tap to rule out neurologic Lyme? What has your experience been like? Thanks!

Does anyone had recommendations for Lyme Literate pediatricians in Maryland? We have just gotten a diagnosis of PANS from a pediatric neurologist and I'd like to find a local pediatrician to be part of my daughter's healthcare team. Thanks!