Jump to content
ACN Latitudes Forums

Search the Community

Showing results for tags 'pans'.

  • Search By Tags

    Type tags separated by commas.
  • Search By Author

Content Type


Forums

  • Welcome to our Forums
  • ACN Services
  • Advanced, Complementary, and Alternative Approaches
    • Attention Deficit Disorders
    • Autism Spectrum Disorders
    • Obsessive Compulsive Disorder
    • PANS / PANDAS (Lyme included)
    • Tourette Syndrome and Tics
  • Prevention and Integrative Therapies
    • Cognitive Behavior Therapy (New)
    • Diet and Gastrointestinal Issues (New)
    • Environmental Factors (New)
    • Nutrition and Supplements (New)
  • School and Home Related
    • Academic Challenges
    • Behavioral Issues and Behavior Charts (New)
    • Educational Plans (New)
  • General

Blogs

  • ACN Latitudes Blog
  • sarama37's Blog
  • kptrsn's Blog
  • lulu648's Blog

Product Groups

  • Advertisements
  • Test Category

Calendars

There are no results to display.


Find results in...

Find results that contain...


Date Created

  • Start

    End


Last Updated

  • Start

    End


Filter by number of...

Joined

  • Start

    End


Group


AIM


MSN


Website URL


ICQ


Yahoo


Jabber


Skype


Location


Interests

  1. Hello, I was wondering if anyone has found any doctors who treat PANDAS into adulthood. I am a 18 y/o f so I am unable to go to pediatric specialists. All help is appreciated. I live in Southern PA, but I am open to all doctors across the US.
  2. Hi all, I have approval from Dr T to try minocycline, but was then told by his staff I'd have to visit him in person before they'd call the rx in. So, in the meantime I'm wondering if anyone knows anything about ordering minocycline online? I found many sites, and from the one below it seems to be the same rx, but for animals. The price is good - but I'm wondering if anyone has done this before? Am I crazy for considering this? Here's the site I'm looking at: http://www.allivet.com Also, here's a patent that was submitted for treating anxiety/ocd with minocycline - interesting! Has anyon
  3. Hello everyone, I was originally diagnosed with PANDAS in 2004 at the age of 5. I experienced severe tics, OCD/anxiety, behavioral issues, and sleep problems. At this time, many doctors had no knowledge of this disorder, so i was prescribed both penicillin and clonidine. At the age of 12, my symptoms had almost completely disappeared. I still had all of the symptoms when first diagnosed, but not nearly as severe. I'd say my PANDAS has been in remission for a while, but recently it has come back and it is extremely severe. However, since I am no longer considered a pediatric patient, I do not
  4. We are new to PANS/PANDAS. After weeks of research I'm certain my 7 yr old son is in PANS/PANDAS flare. 18 months ago he started having frequent urination (day/night) that would come and go for no reason. He also had bet wetting. Our GP did all possible tests and discovered nothing. He's always had poor gut health and gluten/diary intolerance. Late Oct 2016 he had a strep throat (clinical diagnoses). Throat swab was never taken. Mid Nov we noticed him making facial grimaces, licking his mouth (red ring around mouth was there), super irritable, pupils dilated on and off. He also became very hyp
  5. My 5 year old is seeing a specialist in a few weeks, but her pediatrician ordered blood work on that doctor's recommendation. I'm trying to understand what the results might mean. Mycoplasma came back in normal range. ASO was 350 (lab's high was 150). Anti DNase B was 511 (lab's high was 375). She had a positive strep culture about 2 months prior (and a few more times during the past 1 1/2 years). She was on day 9 of Augmentin for a sinus infection when she had the blood work. A side note, behavior drastically improved after 24 hrs on the antibiotics. Thanks!
  6. Hi everyone, I have not posted in this forum in quite some time, mostly because my kids have been doing pretty well over the last couple of years. However, in the beginning, this forum was a lifesaver and also my link to finding other Canadian parents at that time. I hope it is permitted that I post this here and if not no hurt feelings if it is taken down.... I just wanted everyone to know that the organization PANDAS/PANS Ontario that I co-founded a few years ago is working on a petition to the Canadian Paediatric Society asking them to create a position statement and practice p
  7. My daughter had sudden onset OCD, age 7, in September. I remember it down to the minute! Before I start, here is her infection history from 2016, all ear infections. I am waiting for her medical records. I know some of the infections she was treated with abx but for sure she was not treated with abx. on 9/15/16. It was considered viral. She also has a history of enlarged tonsils...still to this day. Also, just chronic colds, sinus infections, allergies her whole life. Just prior to onset of symptoms, I was told by our primary to send her to ENT but then all this happened! Ear Infection Hi
  8. Hi all, So we have used Dr. Rao in the past as a DAN doctor and had good success. This past year my 14 year old son with PDD started digressing, OCD behaviors, you all know all the symptoms. Anyway we saw Dr. Rao in November, he drew labs but before he drew the labs he suspected PANDAs. The labs show VERY high titers for almost every virus tested. HHV6, EBV, Cocksaxie, and mycoplamsma pneumonie. We started the turmeric, N-acetyl-cysteine and vitamin C and did not see any change. The next week we were to start ibuprofen, benedryl and something else (i don't remember) but it didn't
  9. My son is 5 yrs old and 50 lbs and we've been unable to find any prescription that effectively allows him to fall asleep and/or sleep through the night. His anxiety seems to spike as bedtime approaches. We've tried ambien, doxepin, melatonin, clonazepam, clonidine, etc, but we've been wildly unsuccessful in finding the answer. We've also driven him around in the car for up to 2 hrs in an effort to get him down but nothing is working at this point. And when we do finally get him to sleep, he usually wakes up 4-5 hours later and then is up & down through morning. It seems as if he simply ca
  10. I apologize in advance because I know there are several similar posts. I know this because I’ve been reading the forums for a while now but I am desperately seeking guidance at this point. Prior to Labor Day of this year, our four year-old son was an extremely verbal, high-functioning 4-year-old boy with normal physical, psychological, and academic development. Then, seemingly out of nowhere, he started having terrible nightmares that eventually evolved into daytime hallucinations. He also experienced a significant regression in speech. We noticed a severe deterioration in his sleep patt
  11. I've been conversing with a few other families off-line over the last couple of months as we prepared our DS for the transition from high school to college, and I thought I'd drop a note here in the event some others are staring down the barrel of college decision-making. I also wanted to make sure and thank a few of you who tread this ground before us -- most especially Emmalily -- and gave us some great advice! Thanks! So, for quick background, DS was likely "a PANDA" by the age of 3, but we didn't know, nor did we get any help with medical interventions, until he was 12 -- almost 13 -
  12. I don’t post very much because when my twins are home from pre-school the minute I open the iPads they both grab one & jump on ABC Mouse. Background: my son is 3.5 years old he has had PDD-NOS since he was 18months maybe longer. He has a twin brother & they were initially both verbal at 16 months then one progressed verbally & social and the other had terrible diarrhea & stomach problems for many months & he then did not progress, he actually regressed for a year. I see a DAN that was in California but is now in Florida & my son is on Methyl B-12 injections, DMG, Dig
  13. Hi everyone, My 9 year old DS has been treated for the past 2+ years at Stanford Children's Hospital for CVID and PANS, and by another local MD for congenital tick-borne infections (ehrlichia, babesia, and borrelia - aka Lyme). After monthly rounds of IVIG 'maintenance' doses for the past 2+ years to treat CVID and 5+ years of antibiotics to treat the tick infections, he's improved overall but had new symptoms appear that led me to ask Dr Theinemman at Stanford to consider plasmapheresis for my son during our appointment today. Those symptoms include: - self injurious behavior and aggress
  14. Hi, I am new here. We think my 8 year old son has had PANDAS/PANS for 5 years. I found out about PANDAS/PANS a year ago but was talked out of it by providers until earlier this summer when he flared again. He is finally being treated at MGH. So my question is what to expect now. So far this summer, he has been on amoxicillin (1.5 weeks, no effect and came down with bronchitis), ceftin (1 week no effect), ceflex (15 days no effect), and augmentin for the past 4-5 weeks (some improvement at first especially with appetite, but not sure). Because we wanted to do everything we could to improve thi
  15. My daughter was diagnosed with pandas three years ago after a sudden onset of crippling OCD intrusive thoughts. She had previously had episodic stretches of eye blinking tic, urinary frequency, generalized anxiety, and some OCD tendencies but the thoughts knocked everything out of the ballpark. They came on fast and took over. AFter 5 or 6 months of we found a pans doc who put found that she'd had mono and probable Lyme (equivocal ELISA test but negative WB) and put her on ABX for many months. The thoughts disappeared and we had our daughter back - quicky but totally free of horrible obsesive
  16. Hi. I'm new to this forum. My daughter, age 10, had the flumist in the fall of 2015. It was the first time she received the vaccine via mist instead of shot. She developed severe school anxiety shortly thereafter. She developed OCD in Jan 2016. We were convinced she has PANDAS, but had a doctor who sees quite a few PANDAS patients each year rule it out (and bloodwork also confirmed no strep or history of such). The OCD, Anxiety and rage continue to get worse. She is being treated with CBT / ERP by a psychologist for the OCD and anxiety, and we are seeing a psychiatrist this week for m
  17. I'm new to this forum, though I've been reading avidly, trying to absorb people's experiences -- and get validation. Last week my DS16 got a new symptom that creeps him out and puzzles me. He is newly dx with PANS, and more complex symptoms than DS21, who used to get PANDAS exacerbations w/ sinusitis, (responsive to Abx (+ steroids)). Recently DS16 has got severe anxiety, panic of dark (at 16!), intense anger / emotionality, sensory intolerance (glass, ceramic, rubbery textures ..), deteriorated handwriting, and some choreiform movements. Gifted (well 2E) but w/ inexplicable terror ab
  18. Hi. New and overwhelmed. My 4.5 YO had a sudden onset of motor and vocal tics, adhd, clumsiness, OCD, sensory stuff, sleep disturbances, tantrums after falling sick with a cough/fever Dec 2015. Pediatrician suspected PANDAS and started him on Cefdinir however ASO/DNASE negative. Symptoms improved 50% in a month however new symptoms kept emerging. We saw Dr B who ran more tests and diagnosed PANS with borderline Lyme. See Igenex and Galaxy results below. Started on Azith, Cefdinir and Malarone last week. We are seeing an increase in some symptoms (herx?) while others are in check. In hinds
  19. This was just published 2/12/16 about a 14 yo girl who came down with OCD and showed high myco p titers. I don't have access to read beyond the first page, where I believe they were going to start discussing treatment. Very interesting to see publications that address PANS and attribute its cause beyond that of strep to include viruses such as Mycoplasma pneumonia. Does anyone have access to this full article? Would love to read it in its entirety. http://online.liebertpub.com/doi/abs/10.1089/cap.2015.0080?journalCode=cap
  20. Hello. I am new here. But I really need someone's advice. My daughter is 10 years old. 3 years ago my daughter started having OCD symptoms, she was washing hands a lot, and was worrying about a lot of things, she was tested positive for strep, after antibiotics she got better. Pediatrician thought she probably has Pandas. Now, about 5-6 weeks my daughter started to have anxieties at evening before she would fall asleep. She was saying that she worrying about something and she doesn't know why. Later she started having sexual thoughts about everyone she knows. (She doesn't know what se
  21. Hello, There is an article in the Fall 2015 issue of the trade magazine "Biosupply Trends" that summarizes PANDAS/PANS/CANS and provides highlights of some small studies that looked at efficacy of tonsil/adenoid removal versus antibiotic treatment. Interesting. Jump to page 48. http://www.bstquarterly.com/emagazine/currentissue/
  22. Does anyone know of a medical center that has all of the specialists needed to treat PANDAS / PANS under one roof? Thanks
  23. Hello, all! My son is on a very strict diet (SCD) to deal with his symptoms, tics, ocd, etc. He has come a long way but he feels isolated. Do any of you have teens who would like to communicate with him and talk about how bad sugar is, how everyone gets sicker with it, etc etc. He would love it if that person were in the NYC area. Thanks and good luck to everyone! Michael
  24. Hi all, I have very high titers of coxsackie a/b, mycoplasma p, EBV, HHV-6, and was rx'd Valtrex by Dr T. I started it last week for a few days (took half dose for 2 days, then full dose for 1 or 2 days?) and then stopped due to what I thought might be side effects. In general I was noticing an increase in anxiety and emotional lability. It's certainly possible this was coincidental and not related to Valtrex - I don't know. I really want to give it a try though and see if it helps me - Dr T wants me to too (we're hoping by reducing titers my anxiety/OCD sx will improve). Anyone out there
×
×
  • Create New...