Jump to content
ACN Latitudes Forums

Search the Community

Showing results for tags 'PANDAS'.



More search options

  • 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

Found 206 results

  1. Hi there. I'm a 24 year old undergraduate student. I've struggled with OCD and ADHD since childhood, but ~two years ago new symptoms appeared and the severity spiked, all very suddenly, and I've been basically non-functional since. Looking for other students to talk to for support. It's been difficult for me to find anyone who can relate to what I'm going through, especially near my age. I am currently in my 7th (yes, 7th) year of undergrad. I received one degree, but I am going for something completely different now. However, I'm struggling, and I don't know if I should keep trying, take a break, give up, or what. I used to be an exceptional student. I had not gotten anything less than a 4.0 in a class after my freshman year. I struggled with OCD an ADHD then too, but not like this. I was able to manage my classes, social life, etc. Until ~2 years ago. Everything suddenly went down hill. I cannot organize my life let alone my classes. I spend more time alone in my room pulling out my hair, blinking my eyes, trying to figure out what's wrong with me (all of these I had never had problems with before), than I do studying, socializing, or enjoying myself. In the past year, I've failed two classes and gotten a 2.0 or 2.5 in the rest. I had never even come close to failing a class before all this happened... I don't go to class. I don't read the book. I try to learn all the material the day before the exam. And then I get mad at myself for failing. I've wasted so much money and time and seriously fucked up my GPA. But I love what I'm studying. And I know that I could succeed if I could put in the time. I want nothing more than to make this happen. So each semester I tell myself that I will be better this time. I won't procrastinate. I won't give into my OCD. I will follow the studying schedules I make. I will wake up to my alarm and I will go to class. I will wake up from this nightmare. I will be "me" again. I can picture myself doing these things. I know the "me" two years ago would be able to do it. But I continue to fail. I continue to sleep through class. I continue to pull out my hair, squeeze my face, blink my eyes, hold my breath. I had every intention of doing it right this time. But I keep finding myself trying to learn the entire unit the night before the exam, yet again. I ask myself, where did that time go? What did I do instead? And honestly, I don't know the answer to that. I have been doing nothing else. Just sleeping, pulling, checking, etc. Nothing worthwhile. So I ask myself if I should keep trying. I'm signed up for fall classes. And I'm again able to picture myself doing it right this time. It seems like it will be so easy to wake up tomorrow and return to the old me. But I can't afford to waste another semester of student loans. So my mind is telling to drop out. I can't continue while I am ill. But what happens when I drop out? Probably nothing. I'll probably continue my terrible new lifestyle of nothingness, except now I won't be adding to my pile of debt, or moving in any direction whatsoever. If I drop out, I will have nothing motivating me. I'll just be stuck in this funk of nothingness. I want my life back. This is not me, it never was. How can my memory of myself be so vivid and real, so within my reach, yet so impossible to grasp? I do continue to have hope, and I refuse to give up. I changed so dramatically and suddenly once before, so maybe I am capable of changing again, to who I used to be. Oh, yeah, I forgot to mention that I have somehow managed to hide nearly all of this from my friends and the rest of the world. Nobody has a clue that I've changed or that I'm struggling. I couldn't expect anyone to understand. I would much rather tell someone who might at least remotely get it. I do have doctors I see, and supportive family and friends I could turn to. So I am ok and I am safe. But I do hope that I can find someone who I can relate to.
  2. Very recently I received an 'antibiotic challenge' reccomendation as a diagnostic measure for PANDAS, Augmentin 875mg (14 days) was recommended from a private consult. Henceforth, I went forward to my G.P with an honest account of suspicion for PANDAS as well as the possibility of active infection(s)- relating to sinus and chest. With some skepticism I managed a kind referral but only a 7 day course of amoxicillin 500mg - 3rd day in. My question is : Is this likely to be effective or sufficient in relieving or indicating my condition? I've have noticed some minor side effects including stomach cramps and tiredness, Will these abate? Also, how long until the therapeutic effect becomes noticeable? Of course, I'm hoping for a positive response to the drugs. I've have experienced many disabling neuro-cognitive effects during flair up periods, but have read much about the anti inflammatory properties of antibiotics which was also explained to me during consult. Should standard amoxicillin be enough? Thanks for taking the time read. If you read my other posts you may get the overall picture. My most troubling symptoms are related to cognitive dysfunction - I'd do anything to reverse them . Any experience or advise is much appreciated.
  3. Hello Everyone, My 7 year old over the span of 2 days started exhibiting multiple tics. We went online and found info about pandas. She was put onto a 5 day dose of Zithromax and after 4 days was almost tic and symptom free. After the course the tics returned. We returned to a pediatrician yesterday and she is still testing positive for strep. We are now on clavulin (amoxicillin and clavulanate) and after first dose tics seem worst. Does it usually take some time to see results? Does anyone on here have any anecdotal advice for us? worried parents,
  4. Hi All, I have a quick question regarding anorexia presenting as a possible symptom of Pans/Pandas. My anorexia appears to be non-specific, i.e not fuelled by any underlying psychological motive. Is this presentation typical of Pandas/pans? I've heard of the classic type associated with body image distortion - nervosa. There is also a type characterised by a "fear of choking" which I'm sure is relevant in the context of OCD. But for me there seems to be no underlying reason, it's as plain as simply going off my food. It sounds non-sensical; if anything I have a fear of looking too thin. although, there is no appetite during a symptomatic phase. Any input would be great. Thanks.
  5. Hi- this is my first post on this forum though I've been reading and following to try to figure out the puzzle of my my son's behaviors. He's 9 and was diagnosed with ADHD and anxiety, and sensory processing disorder with a neuopsych when he was 6 though behaviors had been around for many years starting around age 2. He was also diagnosed with Periodic Limb Movement Disorder at age 6 after a sleep study. Recently he has shown new "tic" behaviors like repeating swear words words over and over (under his breath) and making repetitive sounds. We are seeing a new doctor and he ordered a test for PANDAS. His strep titters came back as 382. He took a five day course of amoxicillin -the tics do seem lower but his frequent rage issues continue to increase by the day, as well as extreme irritability and defiance, temper tantrum and emotional reactions. On top of this is a craving for and or /refusal to eat many foods and chronic constipation. We tried a two week trial of gluten free followed by 2 weeks of dairy free. Dairy free seemed better but very difficult because milk is what he craves. He has poor weight gain and has fallen off the growth chart. His sensory behavior has increased and he can only have very soft materials touching his skin (takes off clothes and wraps himself in a blanket whenever he is at home.) He is taking foculin xr, Kapvay and Prozac. We are stopping Prozac in 10 days to see if that helps. He also takes Zyrtec for seasonal allergies and miralax. We just restarted iron supplements for PLMD as his serum ferritin levels are at 30 (way below the 70 his doctor would like to see.) I'm wondering about the connection between ADHD, PLMD, anxiety, SPD, PANDAS and digestive/growth issues. Does anyone have a child with a similar profile? Thank you for your help!
  6. I'm looking into getting on a better probiotic (the one I'm currently on is not very strong) but I have a couple of questions: I want to get a pandas/pans friendly probiotic and I have read that it is important to avoid strains of streptococcus... does this include all strains? One of the probiotics I was looking into only contains one streptococcus strain and it is streptococcus thermophilus... not sure if this is okay? Is there anything else I should know about probiotics and choosing the right one? I have been sensitive to previous probiotics in the past but I seem to be much less sensitive and fragile to supplements and meds now so I'm hoping I won't have any trouble! Thanks in advance.
  7. Obviously going to speak to our daughter's doctors, but our next appointment to go over lab results isn't for a month. Wondering if anyone has any knowledge of IGG2 or Pneumocococcus IgG antibody serotype labs?? Her IGG2 is low and 11 of the 23 serotypes are low. She is 6 years old. She recently received a PANDAS diagnosis and is on antibiotic treatment and naproxen. She had high DNASE B and Anti-Streptolysin O in January. Both have since returned to normal range. She has had multiple positive strep cultures, and many recurrent infections over the years. Thanks!
  8. Anybody else's kid start with a dx of PANDAS at a young age and now meets criteria for TS? My son was dx with PANDAS at 2-3, after a months-long strep infection that refused to die until we had done 3 different oral abx, abx shots, and a tonsillectomy. Classic sudden-onset tics, OCD, anorexia, crazy behavior. We thought he was growing out of it (less frequent episodes, with less extreme behavior.) But now he's 8, and his (mild) tics have been present on and off for about a year, and in hindsight I've realized that what is likely AD/HD started creeping in last fall (yet to get an official dx). So far, I have yet to find a peds neuro who 1. accepts PANDAS as a legitimate diagnosis; 2. knows anything about PANDAS; and 3. is interested in figuring out the underlying cause of my son's non-stop tics rather than throwing him onto the neuropsych medication carnival ride. I just set up an appt with his ENT to culture his sinuses, since he has had recurrent sinusitis for years and I want to rule out an occult strep infection. It infuriates me that the PANDAS people are working independently of the TS people, when there's clearly similarities in presentation (albeit the etiology might be slightly different), and a growing body of research that shows that comorbid conditions are typical and not atypical of this population (OCD, AD/HD, anxiety, etc.). I've been told that TS kids' tics "wax and wane" (yes, I know that! but WHY????), that PANDAS and TS is treated the same way (NO, THEY'RE NOT!), and that there is no "cure" for TS (maybe not, but MY SON HAS PANDAS!). Grrrr... my mommy instincts tell me these MDs are full of sh** and my son's PANDAS is at the root of all this. OK, rant over. Anybody have similar experience and/or can offer any guidance?
  9. I could really use some input (brand new here). DS (7) was diagnosed by a neuropsychiatrist with PANS this past summer. With a letter from the M.D. I was able to secure a 504 (OHI). 1st semester went well, dsl was notably inattentive but received all A's. Second semester he had flu and attentiveness started declining. In 504 it is written to allow for breaks,extended test times,etc. He still managed to get A's/B's but attentiveness was still an issue. School now wants to do an evaluation for possible iep. I am seriously wandering whether or not to move forward with an evaluation. School district is large and only one other student has been diagnosed with this condition. This makes me nervous from the standpoint of inexperience and objectivity (had many interesting looks during the 504 meeting). Also the understanding that our kids with this dx need various testing methods to get any kind of useful 'data'. So I guess I am asking if I should let them evaluate my son, or flat out deny and let them continue with a 504? Teacher said he may qualify for GIEP, but the paperwork they sent home lists standard evaluation and nothing about 'gifted' testing. Any insight/advice would be appreciated.....my own anxiety level is off the charts with this situation. 😱 Thank you in advance.....
  10. This blog is wonderful! Great PANDAS/PANS article to read and share. https://walkinginquicksand.com/2017/04/19/what-you-should-know-if-youve-ever-wondered-if-your-child-had-pandas-or-pans-even-if-your-doctor-ruled-it-out/
  11. Hello everyone, my 21-year-old brother was diagnosed with PANDAS shortly before his 18th birthday, and he also has a past history of Lyme disease. He has been in and out of the hospital and psych wards over the past several years and often unable to care for himself and in a psychotic state. I know that there is toxic mold in the home where he has lived his entire life and recently he went to stay with his older sister for a week and saw some small improvements (was able to eat, carry on some conversation, etc.) but when he returned to his home with my parents and two other brothers he grew intensely worse and ended up hospitalized again. My family has not seen any connection between mold and his condition and just attribute it all to the inflammation they are told is in his brain. The only thing he has received in the past that has given any help were the IVIG infusions but they never lasted and this past time, there has yet to be much improvement seen from them. I am putting out a call for help to any parents out there who may have some helpful advice, experience, and especially scientific evidence on the connection between mold and PANDAS, especially because I am 99.9% confident that my brother is one of the 25% who is unable to detox the mycotoxins from mold. I had to leave that house because of my own chronic illness and the mold keeping me from stabilizing or improving. Thank you so much for any help you can offer. Grateful!
  12. 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.
  13. 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 anyone tried it for their OCD/PANS? Treatment of anxiety disorders with minocycline: http://www.google.com/patents/WO2008104734A1?cl=en
  14. 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 know where to start or how to receive treatment. I need help and any advice would be appreciated. My parents are very conservative with money, so I do not have many options as I still live with them. Thank you for your help.
  15. 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 hyperactive especially in the evening and it became so hard to make him go to bed. He started refusing to play his piano saying it is too hard. His focus seem to deteriorate except when playing video games. Mid Jan he started vomiting, had stomach pain and headache and was very weak (no fever, no diarrhea). Both me and my husband had the same virus and similar symptoms but only for 2-3 days. The same week he started taking showers. Nothing could stop him! His symptoms were much worse in the afternoon and evening. Few days later, same symptoms came back much harder. In the ER they discovered high blood pressure and he eventually had PRES (brain seizure). We spent 11 days at he hospital and doctors discovered nothing. Unfortunately, they never tested his ASOt. His autoimmune panel was negative. At the hospital, he continued to take showers, had major fight/flight responses, felt like hot flushes. He has redness on his face on and off that looked like Lupus butterfly. He became very irritable and constipation was very bad. We went home with no answers after his blood pressure self-regulated. In the first days we noticed he started talking and singing gibberish language. I also noticed he had short term memory issue. Facial grimaces became very noticeable (eyes rolling, face twitching, tongue sticking etc.) Few days later it was like someone turned on a switch on his behavior. He started talking about suicide, not caring, he behaved like he was possessed. We were walking on eggs around him. He started having rages (run for a knife to kill me, throw chairs around the house). His strength was unbelievable during these rages that it took my 6" husband to restrain him. His voice would change and became very autocratic during these flares. He still continues to take his showers in the evening; always has to eat after that shower. He could not stand clothing on him (has to sleep naked); his always been too sensitive to clothing tags, smells etc. His pupils were very dilated during these flares. Every morning he would wake up mad. He craved sugar. He would go from depressed to full of rage. One night he was hitting a pillow for over an hour to the point his knuckles were almost bleeding. Moment he would come out of his flare, he would come to me and say "Sorry Mum I don't know why I'm doing this." The other morning I noticed he was playing piano with his fingers while sleeping. Symptoms come and go like crazy. In the meanwhile, strep was found on opening on his penis and in his stool among with 2 other aggressive food poisoning bacteria (which makes us think that was the Jan trigger while he was already in PANS flare). Stool test showed that probiotic is not even cultivating in his gut due to bacterial overgrowth. We had whole family tested and staph was found in his Dad's and Brother's sinuses. They are being treated with abx. After reading about hand writing and math skills, we checked his school agenda. (note that he always had the most beautiful handwriting a kid can have). Before he crushed mid Jan his hand writing became illegible (his teacher sent note home wondering what happened!). At the age of 5 he did grade 2-3 math (he was coded as gifted student 2 years ago). He is struggling now with basic math. He could not remember our home phone number and refuses to do any homework or reading. Is is possible this is not PANS/PANDAS??? During his acute flare, he used tons of inappropriate words and body movements making us shocked (he still occasionally does it). We changed his diet and started with everything natural to help (curcumin, 2 other probiotics, olive leaf extract, digestive enzymes, tons of chia/flex seeds etc). We also started him on antibiotics (Augmentin). He seems to be getting out of this flare now. We use melatonin in the evening which seem to calm him down and help him fall asleep. After researching and stumbling upon PANDAS (after one of nephrologist made a comment that strep might have gotten into his kidneys and caused high blood pressure and seizure), we are almost certain that he was in PANDAS flare when another 1-2 infections hit his little body and pushed him into another severe flare. His ASOt is just slightly elevated (200 upper limit, his is ~270). We are waiting for his Cunningham Panel test to come back and see what else we do now. Our GP and naturopaths are very supportive while our pediatrician (who is suppose to get us back into the system) is beyond dismissive and cold. His suggestion is to place us back in line for neuropsych (months waiting time). I have read everything I can find on PANS/PANDAS, watched videos, read stories, talked to the parents. I could not find anything else that fits all these symptoms. One things that does not fit is the high blood pressure and brain seizure. Is it possible that could happen when child is already in a flare? Is it possible that my son fits more into PANS then PANDAS? He has no food restrictions and is not clingy to me either. However some days he refuses to go to school. We cannot make him go. He cannot explain why is he taking his showers, Said he simply has to take them. Anyone out there with a similar situation? Is it possible that strep was hiding all this time in his bladder and caused on/off frequent urination, bed wetting? And when he got another strep infection in Oct, it pushed him in milder flare; Then another infection in Jan pushed him into severe flare? We live in Canada where PANS/PANDAS is not even a recognized diagnoses. When I brought it up with the ER doctor he said my son does not have it as he is not washing his hands all the time! His ped said he saw two cases in his career but also never heard about Dr. Sweedo or Cunningham panel test. He told us in the nicest possible way to suck it up and go back to routine life. We are mad, confused, scared, worried in 24/7 crises. Both me and my husband are on the edge of loosing our jobs. Any advice, personal story will help. We are fearing his next flare will be worse so IVIG is an option (we received a contact via another family who did it). Thanks all!
  16. Guest

    Blood Tests

    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!
  17. 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 point for PANDAS/PANS and to make it available to their members immediately. We are really struggling still for quality care in our country and especially in Ontario. We're hoping that this will be a start to making some positive change. Please check out the link to the petition and please consider commenting about your story at the bottom and sharing it with as many people as you can. https://www.change.org/p/canadian-paediatric-society-educate-your-members-about-pandas-pans-and-help-our-children?source_location=minibar Thanks for listening! And Ontario parents...if you haven't connected with us and are looking for local support and other families from your area to discuss practitioner options and be involved in our events check us out here.... https://www.facebook.com/ppontario.org/ https://www.facebook.com/groups/pandaspansontario/ Much love...Kerry
  18. 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 History 2016: 2/26/16 3/10/16 5/18/16 9/15/16 (onset of symptoms 3 days after this) Vaccines: Heb B in April 2016, July 2016. We did switch a school and she had excessive hand washing at age 5 for about 3 weeks (again, still waiting for all her medical records, I do not know if she had an infection prior to handwashing or if this is pertinent/coincidental). Not an "OCD" type symptom since then. Very social, smart kid. Loves friends. Very smart. No school problems. No defiance problems. No other diagnosis of ANY kind. An easy and fun kid! Sept 18th: (3 days after ear infection diagnosis) Hoarding (things like her bloody tissues from a bloody nose! Bringing home her milk carton from lunch and making us save it!), making parents take pictures of everything she did (including things like using the restroom, even her urine and poop!), emotional, EXTREME separation anxiety. Per her teacher, crying 8 times a day in class and saying “I miss my mommy.” Sept 22nd: First visit to a therapist who diagnosed her with "Generalized Anxiety." Sept 25th: Severe compulsions. Bordering everything, fear of contamination, isolating herself, depressed, complaining of headaches, stomach aches, hyperactive at times (like she could not sit still on a couch or had to get up and down several times when doing homework). In addition, she cannot be in a room unless her mother is present. Literally followed mother into every room. Started walking backward and doing “starting from the beginning” type rituals. She also has to do everything symmetrically. If she touched something with the right arm it had to be touched with the left arm. Still could get to school but we would be late and drop off was a nightmare. Separating from mother was very hard. Sept 26th: Took her back to the therapist (we were freaking out!) Diagnosed OCD. Sept 29th: Stayed up until 2am doing wiping, tapping, bordering rituals (this was about 6 hours worth of rituals.) If her father came close to her to try to help her, she would scream as though she was being tortured. Having fits of rage. Hyperactivity. Oct 7: . Hoarding spit in her mouth. Will not eat at school or gymnastics practice. Clenched fists ALL DAY. Sensitive to touch, sounds. If we played the radio in the car she would freak out. PLUS still all the above mentioned symptoms. Also, often times, in a "trance-like" state. Also by now she is hitting, kicking, and spitting. Also very immature behaviors. A little bit of baby talk, playing with her private parts (kinda like toddler does), sitting in childish type poses (hard to explain that unless you see...but trust me). Oct 15th: Mother now on a leave of absence from work. She would not be without me. Still could get her to school. Urinating and defecating all over the house. Extreme bathroom fears and rituals. Nov 3rd: First email to an intensive treatment program for OCD. Symptoms getting so severe. Nov 28th: First day of intensive treatment. By this point, never wear clothes unless mother dresses her, severe contamination issues. Wont bathe in a bathroom (only in the sink in the kitchen with Dawn dish soap), complex walking patterns, rituals, throat clearing tic, wont walk on carpet, has urinated on her floor in her room at least 15 times, door rituals, still has extreme rage and emotional labile, will not step on a crack....plus more. Ok, so when all this started, I looked into PANDAS. But to me, it didn't make sense. I said to myself "No history of Strep, we changed schools and she had a hand washing history for a few weeks." Fast forward to now. I will say she has made improvements for sure since we have started ERP. She eats and has conquered some of her rituals. She is now on Lexapro. But for sure OCD symptoms still remain. She wont use a restroom. She has to go outside or in a toddler potty. I spoke to the director of our program about PANDAS when we arrived, and she said "Its over diagnosed and the treatment is the same." For whatever reason last week though, I googled it. My mouth dropped. Now that I have a better timeline in place, to me this is it! It has to be! Especially ear infection 3 days prior to onset of symptoms. Her decline was so fast (which believe me, we took notice of when it was all happening but the "experts" in our lives said that it was pure OCD and nothing else.) We also did not sit around and watch this happen. She was in weekly therapy (sometimes 2 times a week). I know people who have OCD (Not the PANDAS type) can get really bad. But just 6 weeks after onset of symptoms I am looking into an intensive treatment program for my 7 year old! That's fast! We went to a doctor yesterday. Very nice and allowed me to dictate what I wanted ordered. He also says he has treated some PANDAS. But after I showed him video footage of her defiance, emotional ups and downs, crying rages, he pulled me into his office without my daughter and asked if I thought she had been abused. Actually, we did look into that when this all started and we are confident that is not the case. He suggested Art Therapy for her. Art Therapy!? He also took notice of her immaturity, impulsivity and just kinda "wacky attitude." My brother visited last week and also noticed that. She has tantrums like a 2 year old when she does not get her way. All I keep telling these people is...."THIS IS NOT MY KID!" I have an appointment with another doctor (Integrative Medicine Doctor in Irvine, Dr. K) and I have seen actually two reviews about her treatment of PANDAS and PANS and people have been happy. I don't get to see her for a couple weeks though and at least I have some labs done now (waiting for results). Here are my questions: 1. Am I on the right track? For parents with kids with diagnosed PANDAS/PANS, have you experienced a similar timeline, symptoms etc? 2. Any recommendations for doctors who know how to diagnose and treat in Southern California. But I will go anywhere. 3. Is it coincidental we changed schools and this started? (My daughter was nervous about changing schools but it was not extreme at all. In fact, she was well liked and she even knew 2 kids in her class. Teacher was very sweet) 4. Just generalized thoughts on my post. Even a personal experience or 2! Thank you for your time! I know this was a little long!
  19. I've read on this forum that candida overgrowth can cause behavioral and psychiatric flare symptoms that can be mistaken for a typical PANDAS. And now, after several of these flares I'm starting to think what I thought of as PANDAS has really been Candida all along, or at least on several occasions. Questions-- 1) what are the behavioral/psychiatric symptoms associated with candida overgrowth? are they different than a strep induced PANDAS flare? 2) from my description, do you think she has candida, if not, what else could it be? 3) any treatment recommendations for candida overgrowth? DD6 was diagnosed with strep throat and PANDAS two years ago and had a remarkable turnaround after antibiotics and oral steroids, but no return to 100% baseline. She was then diagnosed with Lyme a year ago and we are taking the slow and steady approach to treating lyme with our LLMD. We are also treating PANDAS flares with oral steroids and now more recently with IV steroids (solumedrol), with the hope that she will not need repeated steroids in the future as the lyme dies off. Over the years she has on several occasions experienced acute episodes of: a red rectum, red vagina, agitation, anger, fears, separation anxiety, and sensory sensitivities - but coupled with normal perianal culture and normal urinalysis. All of this (perianal redness and aggitation, normal test results, etc.) came back with a vengeance following her recent IV steroid infusion. Im thinking its Candida. Any thoughts on it being something other than candida? Her Current Treatments Are-- GAPS Diet daily prophylactic amoxicillin Beyond Balance MC-BAR-1, MC-BB-1, MC-BAB-2, Mycoregen, MC-BFM-P, IMN-V-II DesBio Upper Respiratory Staph and Strep Klaire Labs Ther Biotic Complete, and Klaire Labs BioSpora Prescript Assist Probiotic Glutathione Tri Fortify orange Takesumi Supreme Thank You for any time spent reading and responding to this post, as I am second guessing my entire treatment plan for her right now.
  20. 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 do anything either. So we are going back up (didn't have money and it really STINKS that he doesn't take BC/BS) but I wonder if since its viral he'll start him on anti-virals? Before we had the labs he said the next step (in PANDAS, not PANS) was going to be steroids, then IVIG and plasmapheresis. Please PM with any help at all. I'm in nursing school right now and I'm so overwhelmed with helping our son. He was doing so well until he stepped on a nail and I made the life changing call of giving him a tetanus shot. I didn't want to, but feared for his life. Also, if we do end up having to do IVIG or plasmapheresis are these procedures dangerous? Like I said I'm usually not overwhelmed but THRIVE on research but right now I'm trying to finish school so my husband can have some financial relief. Thank so much! Jana Bryan, TX **
  21. 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 cannot turn his mind off at night. Does anyone have any suggestions for something that has worked well in helping young children with extremely high anxiety sleep? Thank you in advance.
  22. Hello, I'm looking for advice about my 5 year old daughter. We are trying to determine if she is having behavioral issues or if she could have PANDAS. As a little background, she has had recurrent throat infections (many times strep, sometimes not conclusive) for the past couple years. Her tonsils have been very enlarged for about a year, and she is having them removed next month. She has also been diagnosed with autoimmune hives that have covered her body (they do respond to antihistamines) for about a year. She also has a history of having behavioral reactions to artificial food dye, and previously had a milk protein (FPIES) allergy that she has since outgrown. A little over a year ago she had strep and her behavior was very "off". Very defiant, seemed hyper, etc. But, it improved. Shortly after that she had a sudden raging unexplainable tantrum, was afraid to be without me, physically fought me and her babysitter from trying to get her into her car seat. It was so aggressive and abnormal that I drove her immediately to the pediatrician's office. It turned out she still had a tonsil infection. It took a couple weeks but her behavior returned to normal, she wasn't having separation anxiety, etc. Since then, every time she is sick, she has crazy tantrums or very defiant behavior beforehand and sometimes after. For most of the spring, she was throwing daily tantrums in the evening, became very constipated (which we initially thought was the cause of the behavior, but now think it was partly a behavioral thing because she would refuse to try to go), and she ended up having a double ear infection and was congested for the whole time. Again, off and on the symptoms would come and go. The tantrums would last for two hours sometimes, lots of mean talk, crazy laughter, spitting, hitting, throwing things, hiding in a closet, trying to get away from me and my husband, but then wanting me at the same time. They typically end because she is physically exhausted or sometimes she will cry uncontrollably until she's exhausted. She will often not remember the tantrum, and can never explain what she is upset about. The end of the summer improved (she wasn't sick), and it all came back when she got sick again in the fall. It's been off and on - she can go weeks with "normal" behavior. Every time she is sick (sometimes a sinus infection, sometimes strep) her behavior changes drastically. She is very well behaved at school (with the exception of two infections ago, she was not herself at school but the nurse couldn't find anything obviously physically wrong with her...she barely spoke, looked in a daze, etc...had a high fever and strep the next day). and for other caregivers. She typically has tantrums at night (they have occurred at other times but not often), has a lot of trouble with bedtime and now usually needs someone in her room to fall asleep (this was never the case before). We can often sense when it's going to be a bad night because she starts acting "off" or overly silly, or can't seem to settle her body down and stay still to read a book. She also had a two week period recently where she was incredibly defiant about everything all day long, improved after a few days on antibiotics for strep. She often complains of lower leg and feet pain which is new. She often does baby talk and talks about wanting to pretend to be a baby again. She has also become very self-conscious and doesn't want me to say anything positive or negative about her to anyone, or relay a story about her. The pediatrician thinks it's behavioral and she can't cope with her constant sickness. It seems very much out of her control though. My husband is a social worker and also thinks it's beyond behavioral. He has said if she didn't have weeks of being "normal", he would think it was ODD or something else. She doesn't seem to have any OCD though. The only thing I have noticed is that often when she finally calms down, she will count on her right hand. Anyway, I recently saw a local mom post about PANDAS and it sounded very similar in many ways to what we are dealing with. However, we've had a lot of change (new school, new house) in the past year and she has had a lot of sickness, so I'm questioning if we should try to seek an evaluation for PANDAS or seek out a behavioral specialist. Does anyone's child seem significantly better in between infections? Behave "normally" during the day and typically behave fine for other caregivers? Thank you!!!!
  23. 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 patterns and additional changes in his behaviors and personality. He developed an ever-changing pattern of nervous tics and his regression got to the point where our son was (is) almost entirely non-verbal and is consumed by anxiety that has significantly impeded his well-being. We have to drive him around in the car at night, often for hours at a time, in an effort to calm him enough to go to sleep. I should’ve mentioned that he had strep throat in mid-August, which was treated with 10 days of amoxicillin. Although we live in northern New Jersey, we brought him to CHOP in October because of their infallible reputation for pediatric neurology. Our son has since been hospitalized at CHOP for three different stays, during which he has given more than forty different blood panels, sat through three EEGs, two MRIs, a lumbar puncture, one abdominal ultrasound, and one throat Doppler. Unfortunately, none of these tests and procedures resulted in a diagnosis for what is suddenly ailing our boy. Each attempt to determine if there is an organic, metabolic, or genetic issue has failed to produce conclusive results. In reading all of the symptoms of PANDAS/PANS, it certainly seems like this is what is plaguing our son. However, none of the extensive blood work that was done at CHOP has resulted in markers that typically indicate PANDAS/PANS. I know that this doesn’t eliminate the possibility and from what I’ve read on here, it sounds like CHOP doesn’t exactly embrace the PANDAS diagnosis. My wife is in her third trimester with our fourth child and we are at wit’s end in trying to determine what our next step should be to help treat our son. We met with Dr. Elias at Dupont in mid-December but were kind of left in limbo there. We are scheduled to go back in early February (her first available) but, as many of you know, six weeks is an eternity at this point. We feel like we are on an island and have no clue where to turn to help get him better. I’ve researched several doctors in the NY/NY/CT area (Dr T, Dr B, etc) but it seems as if every positive review is followed by a scathing one. I’m sorry for writing a novel but we are desperately in need of help. We want to help get our child the proper diagnosis, which we believe to be PANS, and get him treated aggressively and quickly. Thanks for listening.
  24. Hello, I'm writing on behalf of my friend whose son 11yo has severe tourette's and ADHD. He's been on all kinds of medication, vitamins and supplements, but none of them has worked on him. The devastated mom recently heard about PANDAS, and her son's pediatrician is skeptical about it(=doesn't know much about it), so she is in a search for a doctor who can test and treat PANDAS in Wilmington NC or somewhere near around. Does anybody have a recommendation? Thank you!!!
×
×
  • Create New...