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  1. To give little history, I've been diagnosed with schizoaffective disorder, which is simply explained as bipolar and schizophrenia together. I've also had tics all my life, mostly blinking, and some OCD. Whenever I take immune boosting supplements my general feel of psychosis and irritability increases, and so does my tics. Any idea as to why? And I'm open to any recommendations on how fixing it. That's it for my question. Below are some indications for those that have the ability to do detective works. Olive leaf extract: gives me energy and temporarily cures tics. Often cause mania, anxiety, some delusional thoughts and dissociative feelings. Coconut oil and MCT oil: irritates my throat. If taken too much I get full blown symptoms of flu, even worse. Temporarily boosts energy and cause mania, but also heightens my anxiety. Cured warts on my feet. Oregano oil: made my tics worse and my head gets locked into thought loops and even with meditation my mind cannot stay clear headed for more than few seconds. This made me look at salicylate sensitivity as well as oxalates. I got a bottle of No-Nenol on the way so let's see. I have once cut out all high sal foods and cosmetics but it didn't seem to help much. But recently I've been consuming a lot of phenolic supplements and since I've cut them out my thoughts seem bit clearer. Some general main symptoms include Constant thought loops that are obsessive and unproductive, even though I frequently meditate (up to two hours daily) Tics and muscle tightening (semi involuntary) Brain fog Delusional feeling and thoughts Ultra ultra rapid cycling mood. Cocaine high - numb and no pleasure - suicidal depressed (recently okay ) Extreme sensitivity to sugar, leading to severe depression and anxiety Mild OCD Anxiety Digestion seems fine since changing my diet. Let me know your thoughts on this!
  2. Hey, folks. First of all, I want to excuse my english. I'm a german fellow Maybe I will ramble a little bit but I hope that you will get the gist. I'm a 25 years old male from Germany who has suffered from OCD since I was approximately 3-4 years old. Basically my first memories evolve OCD. Sounds not untypical doesn't it? The reason I'm worried and want your opinion on my case is the very early onset of the OCD. I have read that OCD CAN start very early. But looking back, I wonder if OCD alone can really be that aggressive and start that early on. Furthermore, I'm aware that I had a pretty severe sore throat and a cold a few times when I was around year 1,5- 2,5. I asked my mother about that. Don't know if it was step though. As i already said, my OCD started very early with symptoms "not-right feelings", touching, compulsions to get it right (staring left right left right and so on), extreme fear of losing my parents, praying, confessing and a lot more. Can't really tell if this can be still regarded as a "normal" OCD case but what surprises me is that it was pretty intense even early on. And of course it only got worse. I somehow managed to get through kindergarten but looking back now I was always a worrywart and even at that time couldn't just be "a kid anymore". In school my BDD started. It is an OCD spectrum disorder but I really haven't seen PANDAS cases with kids that developed BDD pretty early on as well. By the time of 7 or so I was already totally consumed by OCD and BDD. Was hyperaware of my looks, thought my eyes looked weird and ugly, tried to be in control of my looks, had all sort of weird obsession ( why am i attracted to woman/ why are bodyparts attractive/ do i really love my mother/ do i really like this and that/hypermorality/hyperresponsibility and 1000 more. And i am NOT exaggerating. I really had any f*** obsession you could ever have. It's crazy. I wanted to make a really long text but I realized now that it could be summarized as. Having extremely severe OCD since early childhood/ BDD since ahe 6 or 7/ derealization since age 8 or so. The derealization isn't always there but most of the time it is there, even if it is in the background. Having symptoms of executive dysfunction: I get stuck on concepts / thoughts and have a freakishly hard time to "update" my brain. I'm on Luvox 250 mg since 2 years and since I take it regularly and don't drink alcohol my OCD/BDD/derealization have really gotten much much better. 60-70 % improvement. It is really the first time in my life where I actually can enjoy some things and am not always totaly obsessed/fixated/surpressed by worries. Sorry, lots of ramble but I just had to get it out somehow. What is your take on the situation Love from Germany Sascha <3
  3. Hello all. My daughter is 17 and has been on every pysch med imaginable, CBT/ERP, you name it...I've discovered over the past few years her OCD is caused from infection in her brain and right now I am searching for a pyschiatrists or MD.. any DR really, who will be willing to consider using ceftriaxone to help treat her. She is miserable right now and OCD is preventing her from getting her physical conditions treated properly. Studies on OCD and ceftriaxone are remarkable and every time she has had some she has had significant symptom relief, only issue is finding a doctor who will listen. Any response appreciated. You can personal message me on here or email as I've heard you can't post names of doctors in forums.
  4. Hello, all. I posted in this form about eight or so months ago searching for answers on how to treat my daughter's pandas. Since then, after a very long and hard journey, we have found out she has Neurolyme and multiple coinfections. It seems she regressing neurologically on a daily basis and the oral antibiotics aren't doing anything for her. She responded excellently to ceftriaxone in the past, so I am in desperate search for an LLMD willing to give it to her again. We have been seeing an LLMD for a few months now, but I found him to be dismissive and not willing to hear anything out. My daughter is about to turn 18 and half of her time is spent doing compulsions, the other half she is spacing out, sometimes so bad she can't remember her own name. She is not going to be able to tolerate oral abx until her head is cleared up a little and pyschotropic medicines have an extremely negative effect on her. I am willing to travel overseas if it means getting her the proper Lyme treatment, I just need some recommendations please. I'm aware forms don't allow LLMDs information to be posted, so if anyone could email or personal message me some it would mean a great deal. Please. I am desperate
  5. Has anyone ever seen a sibling of their PANDAS/PANS child seem like they were starting to exhibit symptoms and then they resolved themselves? My daughter every now and then I swear I see something, and then a few days it's gone. I mean it disappears without any intervention. Her clothes will bother her (slight sensory issues since birth) or she will just sort of be off. Like she's npt 100% there and then a couple days later she's just back to her normal self. We are day 10 of chicken pox and she is off (as I have posted elsewhere). We took her for a strep test. Negative. My pediatrician who has always been great with my PANDAS son likened it to possible kickback of the virus. His analogy was it was like she's been underwater and her body has to catch its breath. Or like damage is being repaired and to try and see if it resolves itself. She is annoyed that her bed isn't made correctly, but that's something that isn't new to us. She has always liked a neat bed (as I remake mine every night because I also have a thing about sheets). But she's not angry it's not made yet. I told her I would help her when I was done doing a few things and she said ok. In your opinion could this be some quirk of hers that could be just a little exacerbated due to inflammation? I told my husband that if I see it not going away or increasing that I will call and get abx. I mean I know my kid best, but I also really love and trust my pediatrician. He has been great with my 9 year old who exhibited overnight TICS, anxiety, and OCD in 2008. He is doing great. Only has a mild tic from time to time. Thanks for your time.
  6. Hi everyone, My four and a half year old had a very bad virus about 5 weeks ago. Started with frequent vomiting, lethargy for 5 days, followed by diarrhea for a few days. She was in the ER to get IV fluids and IV Zofran. In the last few weeks, what started out as odd behavior/tics with tiny episodes of aggression have very quickly turned into severe fits of rage and other serious symptoms. Below is a sampling. As I wait for a return call from a PANs/PANDAs dr, thought I would ask this group your thoughts. Thank you in advance for any of your insights. Peculiar behavior Needing to get into the car on the same side Licking the walls Focus on shapes (drawn xmas tree has to be perfect triangle, could only step on the large square black tiles in airport) Had several days of eating enormous amounts of food after virus; eating appears normal again Needed to put large amounts of honey all over toast, covering the entirety of the edges and bread Complained of itches all over her body; was trying to scratch everywhere, but there didn’t appear to be anything on her. She couldn’t pinpoint where it was, but she was crying and scratching hysterically. Wouldn’t go into school because there were “too many cars” in the parking lot Overall irritability/frustration has increased Frustrated with self/others over very small things that she used to be able to handle without a problem Easily set off, then it lasts a long time to recover Quicker to yell at/push brother, less patient (if he takes a toy, for example) Transitions from one activity to another or leaving the house and hopping in car have been ongoing difficult, but are even more so now Needs to be carried more frequently, even when not especially tired Had to be carried out of school several times after not wanting to leave Has missed some school due to all of these issues, even after back to physically “healthy” after virus Personality Fewer moments of “lightness”/joy Not smiling as much during the course of a day After long sustained episode, can “switch” back to sweet/loving/calm/happy Seems to struggle especially with lots of stimulation (sounds/music/movement) Episodes scare her 19-month old brother; when we tell her, that doesn’t calm her down Sometimes says husband, brother, or I bother or hurt her when we aren’t near her More clingy than usual with husband and I Not as nice/empathetic Takes a longer time to apologize, apologies don’t seem as sincere Unpredictable as to what might upset her at a given point Doesn’t talk and use her words as much as she did before virus; nods her head more to answer a question and seems to talk like a baby from time to time This doesn’t seem like the same girl of 5 weeks ago Her “normal” personality is: fun loving, funny, sweet, great big sister, interested in various activities, loves school, happy, content. Need to constantly repeat requests/asks of her, this was an issue before virus but even more so prevalent now. 10-20 times. Sleep issues Frequent night terrors since the virus (10-12+ – takes 1 hour+ to calm her down) Thrashing, screaming, fear, not identifying husband or me initially Regularly wakes up throughout the night, even if no night terror Sometimes calls out “no!” during sleep Harder to put to sleep, wants husband or I to sleep through night with her Overall much less nightly sleep than before the virus Generally seems exhausted Have tried: earlier bedtimes, reading more books, spending more quality 1:1 time at night with her, lavender scents in room for relaxation, gently body massage after baths, setting calm atmosphere before bedtime Tics Eye blinking (present before virus; but ongoing) Throat clearing (present before virus; but ongoing) Excessive sniffling (seems new; but ongoing) Aggression/physical lashing out (all new to our daughter) Biting husband and I (I have a large bruise from a hard bite through sweater) Biting her own hands, clothing Biting furniture Hitting/kicking husband and I, walls Banging headboard of bed, on floors, on walls Head butting us Thrashing body on carpet Sustained screaming at top of lungs (upwards of 40 min) – she looks afraid Pupils seems to be enlarged during fits, but it is hard to tell with her dark eye color Throwing shoes, pillows off couch, overturning cushions Ripping tape off of boxes Slamming doors Quickly running/darting into mudroom while screaming Doesn’t seem to comprehend when there’s been a big aggressive event Our primary concern is keeping her physically safe during fits of rage, but coming closer to her seems to enrage her more
  7. My son (11 w/sever autism) has been treated for PANs for two years with antibiotics by an immunologist at MGH. Recently his symptoms worsened with increased anxiety, ocd, aggression, and a new tic disorder. Can anyone recommend doctors in New England who could treat a child like my son? We're feeling quite desperate. Thanks!
  8. Anyone with a PANDAS teen with Severe OCD? My son has been suffering with PANDAS for 5 years, he's 18 (suddenly sick at 13 with a strep infection) and now living in a residential school. I thought we were finally on the right track..he started speaking a little more, and finally is taking his antibiotics but recently he started to decline more (he's already very disabled). Now he won't leave his room, has stopped eating and can't sleep. Stands all day. I feel that he needs to be physically moved from the room..just to help him get past this point but staff are hesitant. Not sure what other options we have but can't give up on him. He's had many IVIGs with no real lasting improvement. SSRI's did nothing but make him aggressive. Recently, we changed the antibiotic from Keflex to Zithromax, hoping for a faster improvement, and everything fell apart. He's back on Keflex and motrin for over a week and still no improvement. Very worried
  9. Hello everyone, my name is Arindam i have been suffering from OCD for last 8 years and always tried to find out what exactly causes the disorder and up untill now never really looked into the topic of PANDAS and how it could trigger the onset of OCD . But from what i have read i understand that PANDAS usually happens if children (ages upto 14) gets infected with group 'a' strep bacteria causing strep throats or scarlet fever which confuses their own autoimmune system to mistakenly treat a part of their brain (basal gangila) as foreign body and attacking it instead of the infection or along with the infection. Does anyone know or has any idea whether a child could develop PANDAS and then OCD from group 'b' strep as well ?
  10. IVIG for untreated PANDAS

    Hi, new to the forum but have been observing for a few months. I'm in desperate need of any answers possible. My DD first started having severe OCD symptoms at the age of 7 (she's 17 now). I had no idea what caused it or what PANDAS was. Through the years she has been on every SSRI imaginable (which had very little - if any - effect on her OCD symptoms and gave her suicidal thoughts) , been through ERP and CBT, hospitalized, you name it... In late 2015, an immunologist ran several tests and diagnosed her with PANDAS. Along with the OCD and being prone to strep, she also has insomnia and sinus/breathing problems. The only advice the immunologist gave was for us to get her tonsils and adenoids removed, which we did, and DD got strep 4 times within six months of the surgery. For the past two years, I've been going through doctors trying to convince one of them that DD needs long term antibiotics (we live in a very strictly textbook, narrow-minded location). We have an appointment with a new one this week with a reputation of being progressive and his secretary told me he is familiar with PANDAS. I also recently contacted Dr. K in Chicago who told me DD would most likely benefit from IVIG. Do any of you have experience with IVIG or any words of advice? Did it provide any relief of OCD symptoms? I've read mixed reviews but am willing to try anything at this point. I'm also going to see if this new doctor can test her for Lyme. Another concern I have is that God forbid her PANDAS may have gone too long untreated and she's suffering from irreversible brain damage Sorry for such a big post I am just at loss at what to do here.
  11. Hello. I recently took my 11-year-old son to the pediatrician for OCD symptoms. The doctor put him on 25mg of Zoloft and three days later he is experiencing severe abdominal tics. Has anyone else experienced this? Wondering if it is caused by the Zoloft or is secondary to the OCD. I tried calling the Dr 3 times yesterday and my calls were never returned. I will be changing pediatricians after this experience, but I have no idea whether to leave him on the meds or not. We've never dealt with tics before....
  12. Dear All, I'm desperate for some guidance on my situation. I feel utterly lost and feel that I'm beginning to dwindle away as a solitary eccentric. However, I may finally have an answer nearly 4000 miles away. To give you some background: I am, or was, a 24 year old mathematics student from the UK, with a working diagnosis of ASD, OCD and ADHD. I have a very much up and down history of academic attainment ranging from A's to U's during troubling periods. Anyhow, this cycle has been most pronounced for the last 6-7 years but may originate in childhood. It all began in November of 09' at age 16, I was studying for A-Levels when all of a sudden and overnight I began experiencing extreme anxiety and unrelenting sexual intrusive thoughts (Pure-O), so severe it was impossible to channel my attention in any productive way. At about the same time I become housebound, started showing signs of behavioural regression and went off my food - I lost a lot of weight. At the time I was reluctant to talk about the thoughts, as I didn't believe they would be seen in the right context. Anyhow, fast forward a few years and with every "relapse" I become isolated, show marked personality changes and as result attract a lot of ridicule/bullying and ostracisation. I've never been able to find a relationship because of unrelenting untrue rumours and gossip surrounding my sexuality - unfortunately, I've been dumped a couple of times because of it. But more to the point I've never been able to explain the extreme shifts in my behaviour until perhaps now. The symptoms range from mood swings, regression, brain fog, short term memory loss, insomnia and all I can conclude is severe cognitive dysfunction - whether this is connected to ensuing depression, I don't know. Anyway, out of desperation and with my current diagnoses, I searched for answer to tie all the pieces together. I had a consultation with Dr Kovacevic, who said that he believes my case to be certain for pans/pandas. Hence, he's provided me with diagnostic and treatment recommendations. Here's the thing, can pans/pandas explain such severe cognitive impairment? - because guys with everything I've been thorough I feel like I've lost my mind. And number 2 is there anyway around getting the blood tests done and receiving treatment here on the NHS, and at the grand old age of 24 is there any hope of recovery? I'm sorry, I must sound personality disordered by now but I've gone a long way in the face of ignorance. I can hardly recognise the person I once was. I just want my brain back, I feel like an invalid. If anyone has some guidance, consolation or can enlighten me on the ins and outs of PANS, I'd be much obliged. What a life :/ Thanks for reading.
  13. I'm 20 years old and I've had OCD accompanied by tics since I was a little kid. The OCD symptoms have subsided over the years and now almost entirely consist of tics. The main two tics are jaw popping and blinking. The jaw popping can be really bad to the point where I either clench my teeth, bite my cheeks, or simply don't open my mouth for fear of popping my jaws. The blinking is almost constant and is mainly in one eye, but either ways it makes it hard to drive and I've recently noticed my vision becoming blurry which I can only imagine is from the constant blinking. The two tics alternate back and fourth, so when I'm not doing one I do the other. When I'm on the correct dose of meds, the tics subside but still persist and I'm looking for some methods outside of OCD meds for treating my tics. I'm going to the doctor in a few days to increase my meds dosage which will help but I'm interested in hearing some other methods as well. I recall reading something about magnesium and calcium? I already take calcium and am willing to try almost anything to bring these tics down to a manageable level. Right now, they are worse than they have ever been. Any help would be appreciated. Thank you.
  14. My daughter just turned 3 earlier this week, and last night some behaviors that we'd noticed that we thought she would just grow out of got a lot more concerning and worse. She's always been particular about being clean and her hands being clean, though I didn't think too much of it. Lately when she gets upset, particularly when she wakes up at night, she has started to spit on her hands, which gets her even more upset, but she keeps doing it. Used to be we'd hand her a washcloth, she'd towel her hands and would be fine, but last night a washcloth was not enough and we had to take her to the sink to wash her hands. This worked twice, but then when she woke for the third time (ugh) last night, she was so worked up that taking her to the sink didn't calm her down and she started forcing her fingers down her throat and would gag and even threw up once. I'm at a loss as to what to do, especially since as she just turned three she can't communicate abstract thoughts yet, and I've been scouring the internet and can't find anything about a toddler spitting on themselves when it upset them so much. Other things, my husband is on the OCD scale and sees a lot of him in her. He's not at the point where it interferes with his daily life but he has obsessions and compulsions and has had a few panic attacks that has resulted from them. Her older brother (6) and myself are both autistic, however, she does not have any autism warning signs and does some rather pro-social behaviors that I don't think that's what it is. Other behaviors that are concerning: -She keeps her room immaculate to the point where she doesn't even let toys into her room. When I put in her big girl bed I decided to add some toys and stuffed animals and she threw a fit until I took them out. And I've tried to let her take a toy in her room for quiet time but she refuses to have one with her. She will throw anything that does not belong in her room into the hallway and cleans it twice a day, at nap/quiet time and at bedtime and has done this since she was 18 months. -She's very particular about how the covers are on her bed. The covers have to be just so and there can't be any lumps and she sometimes gets upset that we can't make her feet lumps go away. -She changes her clothes between 2-3 times per day. If she so much as splashes a drop of water on her shirt while washing her hands she gets upset and wants a new shirt. -She is starting to ask to wash her hands a lot and find reasons to do it. Like when I take her to pick her brother from school or go to the store she will ask to go potty, then she'll sit on the potty without going or even giving it long enough to have a good try at going, and immediately ask to wash her hands. -She has elaborate getting into the car seat and good night routines, where there's an ordered sequence of how everything goes, we have to give her a high five a certain number of times (though the amount of times changes) and then we have to say "good bye" to her in a particular way with a specific tone of voice and a certain number of times. I had thought it was just typical toddler until last night, but now I'm starting to worry that it might be the beginnings of OCD. The spitting almost seems like she does it to have a reason to wash her hands but then she gets so upset that her hands are dirty she spits again and works herself up even more and it causes a viscous feedback cycle and I don't know how to stop it. I actually work with children and have taught child development, and I've spent the morning contacting professionals I know and ruling out sensory processing disorder and other common childhood things, though everyone agrees that this is not normal and the only thing we can't rule out is OCD, however, I have not heard of it manifesting this early (3 years and 3 days) and there is so little on the internet about it that I'm wondering if I'm overreacting or if it will just blow over. The only other thing we can think of is that she's acting out to get attention because her brother is autistic, yet she spends the day home alone with me while he is at school (which is an intensive therapy program for autistic kids so he's getting all the help in one place and I'm not shuttling him from place to place, it would just be like having a typical sibling in a typical school for her) and he's high functioning enough that he plays well with her, he's outgrown his tantrums and typically either entertains himself when he's home or plays with her, though I don't know how she sees it from her POV. Does anyone have any insight or resources? Her well child visit is Friday and I plan to bring it up but I also think that the doctor will tell me I am crazy if I bring up OCD.
  15. 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.
  16. My son is 14 and we have not had much success with any protocol, keeping in mind he has been reluctant to participate in almost everything. I have been in touch with Dr Mary of Marys Herbs concerning her OCD protocol that pertains to thinning myelin sheath. I am looking for parents that have used her protocols to share their stores and effects the treatment has had. Thank you!
  17. Does anyone know any psychiatrists in New Jersey who is specialized in ASD with OCD/anxiety? You can send me the information to my personal email account: louisalaw@gmail.com. My son is 18 years old with ASD. His current challenge is severe OCD. Thanks so much. Louisa
  18. I found Mary Reed from Safe Harbor website. I filled in the questionnaire she provided regarding my son’s condition, mainly about his OCD. It then came out with some supplements suggestion, and one the them is Evening Primrose Oil. Does anyone know or have experience on its effects on OCD or anxiety? Thanks Louisa
  19. Hi, My son used to have mild OCD. But last summer, his OCD increased significantly. Dr. T found he had PANDAS and prescribed him with various kinds of antibiotics, which, unfortunately, made his OCD worse. Later, the Cunningham test showed he had autoimmune disorder and was prescribed with Prendisone, which even made his OCD much worse. So we stopped all these medicine. And later, with increased probiotics, his OCD was relieved. Although it was still significant, it was within a tolerable level. Last week without a clue again (or maybe due to increased social anxiety in school), his OCD increased back to the high level like that in summer. So his school psychiatrist wanted to increase his medicine for OCD because he has been very late for school due to OCD during morning routine. His current medicine for OCD is zoloft 200mg. He is also taking zyprexa for his paranoia. Personally, we do not want to add any medicine. He has been seeing Dr. Greenblatt, an integrative psychiatrist, who give him several supplements. His paranoia has been reduced to minimal and zyprexa reduced from 30mg to 10mg in two years since he started taking the supplements. A recent Kryptopyrrole test indicated he had elevated pyroluria and Dr. Greenblatt has just prescribed him with Zinc and Vit B6, hopefully to reduce his anxiety. We would like to see how the new supplements work before changing his medicine. Anyway, his school psychiatrist proposed three options for us to consider for treating his OCD 1. to increase zyprexa from 10mg to 15mg in order to boost up the effect of zoloft. 2. to add another SSRI, such as Prozac, on top of 200mg zoloft 3. to add another tricyclic , such as Anafranil, on top of 200mg zoloft. Any feedback for the medicine options and any suggestion relating to what happened to my son's OCD are greatly appreciated Thanks for your time Louisa
  20. Hi My son was taking inositol for his OCD as recommended by his integrative psychiatrist this April, but his OCD became a little worse. He is also taking a lot of other supplements,including lithium orotate. I have just learnt from different website that Inositol cannot be taken together with Lithium, as it seems to block its action. Has anyone ever heard of that? Please share your experience in using inositol for OCD. Thanks Louisa
  21. Hi Please help my son. I am desperate! My son used to have mild to moderate OCD and controlled with Zoloft 200mg. His OCD basically did not affect his daily function. April of Last year, he had to take antibiotics for other purpose, but his OCD increased a lot. After the treatment course, his OCD relieved a little bit. In this year April, his OCD increased significantly without a clue. Blood tests showed high level of Strep A antibodies. Then we visited Dr. T for checking for PANDAS/PANS. He first gave him Augmentin and Ibuprofen, but OCD increased instead. At the same time, he ordered a comprehensive blood test which showed he mainly have high level of Strep A antibodies, no Lyme infection. Then he prescribed Clindamycin and Rifampin, his OCD got worse again. Lastly, Dr. T ordered Cunningham panel of tests, which indicated my son has autoimmune disorder. Dr. T. then gave him prednisone 50mg for 10 days and expected a speedy recovery after 2 to 3 days. Unfortunately, his OCD continued to get worse and even worse than before his treatment with antibiotics. Before the treatment, he could still make it to school. After the treatment, he cannot make it at all. Now He has to take more than 3 hours for morning routine due to OCD. All this blood test results seemed to suggest PANS but the conventional treatment does not help at all and even make his OCD worse. Please help me make sense of it. I am desperate. Thanks Louisa
  22. Hi All, I'm new here and I'm wondering if anyone else has come across these types of tics, and could it be related to PANDAS/PANS? I guess I'll give the rundown of our situation for background. My daughter started having tics at age 12. They started after she was really sick (sore throat, headache etc)for a week, but she was negative for strep. Our other daughter was sick in hospital(hindsight possible pandas/pain processing disorder) and I didn't do a good job of paying attention to other daughter. She spent a lot of time in her room and we noticed her doing things but we thought it was for attention(with sister sick we knew she needed more but didn't have the energy to give it). Within 7 months she had every single tic possible (complex vocal, gross motor, copropraxia, coprolalia, and a few more and they happened all day and much of the night), she had severe anxiety, sensory sensitivities, depression, ocd, panic attacks where she blindly runs away, and she had self-injurious tics. She has auditory and visual hallucinations and she also developed purging behaviour, and self-harm. Her schoolwork has stagnated and has worsened in math/science but I don't know if that's because of the interruptions to her thinking from ticcing so much or another cause. The daughter who I thought was totally normal, with acknowledged very mild tendencies to ocd, was now struggling so much. She is now 15 and is still struggling. Her psychiatrist is excellent and he believes that there's more going on than TS(he's a top person in his field). The only pediatrician in our area who possibly deals with Pandas spent 15 minutes with her, insulted her, and refused to treat her. She's been on fluoxetine, respiridal, and citalopram with no changes seen. The tic that is most problematic is what we call a seizure tic. It's not a seizure (the neurologist actually saw one) but it looks similar. Out of the blue she falls down and her muscles all tense up, she arches her back or flexes into gymnastic positions(she dances and is very flexible and strong). All of her muscles are tense and then she often bangs the back of her head, twists around slowly, and then the muscles contract inward rapidly like she's a ball, and then flex outwards again. This goes on from anywhere between 10 min and 90 min. She has absolutely no control but she can hear. She can't see or control breathing(like holding her breath). As a result of this tic she has had 3 concussions, has almost drowned, has crashed her bike, and been generally bruised and embarrassed. Her psychiatrist who is treating her agrees with me when we say can't find a trigger. It happens when she's asleep, when she's quietly reading on the couch, when she's baking, out for a family bike ride, or when she's at the mall. This has made things really hard for my daughter over and above the other things that she deals with. We're still trying to see if we can get her diagnosed with Pans/pandas, as her symptoms seem to veer away from TS. Her psychiatrist says there's no sign of psychosis from schizophrenia (which I think is why she was on respiridal). On the other hand I don't want to chase down a diagnosis that is inaccurate. I just want my daughter to get some relief and some hope that there is something we can do to help her feel better. Sorry for such a long post but it's complicated...If anyone has experienced tics like my daughter, I'd love to hear about it and thanks for reading.
  23. I just wanted to share what we've discovered with our 8yr old son. My son has had these type symptom during allergy season but not as intense as this year. WELL this year we started giving him Allergy Immunotherapy drops and his symptoms increased majorly. I've referred to it as OCD but honestly its a mixed bag of OCD, vocal tics, stimming/sensory stimulation. I connected the dots and had his histamine tested. Mind you, he had barely any noticeable symptoms. Occasional sneezing or cough. His histamine levels were 4x the high normal. Histamine is actually a neurotransmitter and can cause neurological symptoms. Do some research on Histadelia kids. Describes my son to a T. Work with a Functional MD or ND who understands the methylation cycle and other contributing SNPs. I would suggest getting a Blood Histamine test. We just had one for our son by Dunwoody labs. It included histamine, DAO and Zonulin (zonulin was optimal so not a Leaky Gut problem). We ran genes through 23andme a couple years ago which is helpful information (still requires research, trial and error). Dr. Amy Yasko (google her name) has an online forum and free online books which are very helpful regarding gene errors and the methylation cycle. If our histamines are too high there are some reasons behind that which can be supported by understanding your methylation cycle. You can read up on Histamines and how they effect us. Some people have issues because of low histamines and others because too high. Here are two good links. http://www.joanmathewslarson.com/HRC_2006/Depression_06/D_roller_coaster.htm http://www.drkaslow.com/html/histadelia.html
  24. 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
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