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Found 19 results

  1. My daughter (Meghan) is 16 years old. She recently, (August of 2018) started experiencing what she called "spells". These are best described as dissociation. She says she's confused, doesn't really know what's going on and in a dreamlike state. These used to last for 10-15 minutes. Now it's become permanent, a 24/7 feeling. As a result she gets extremely scared and anxiety kicks in. We met with a therapist and the first thing that she noticed was that Meghan's eyes were very dilated. She asked us if she's ever been tested for Panda's. We didn't know what it was and said no. We spoke to our pediatrician who coincidentally is one of the few doctors that we've found that treats Panda's and he did some blood tests. The results showed that her markers for Pandas were all high. We started with antibiotics and anti-inflammatories. This has gone on for about 3 months with zero progress. We are now at the point where she doesn't go to school, she is not longer on her high school sports team, she's afraid to do certain things like get in a car, go outside and others. Our therapist has tried to counsel Meghan to push through this. Go to school, "lean into" the panic feeling but don't give in and stay home. That will lead to larger issues long term. My daughter has given a huge effort to do this, but just can't make it through the day. Yesterday she went to school, but sat in a common area trying to calm herself and never made it to one class. Today she really wanted to go, so it's not her avoiding school, but was just too scared to go. We've tried to understand more of what she's scared of, and her response is that she's scared of the feeling, the dissociation. So here are my questions: 1. Has anyone experienced this dissociation feeling? Typically dissociation is a result of a traumatic event and Meghan has not experienced anything like that. We've delved deep into this to be sure. 2. Any advice on how to push through the feeling of dissociation without it creating so much fear and anxiety? 3. I have read of people that say longer term antibiotics are necessary to treat Pandas, 6 months to a year. Our pediatrician has taken the approach of a 10 day regiment or 10 days followed by 5 days. Please comment on your opinion of how long antibiotics are needed. 4. Please add any other advice, comments, links etc. We truly appreciate it and will be sure to share anything that we learn along the way. Thank you.
  2. 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.
  3. Hello Everyone, Brand new to this forum and honestly believe I may finally be going in the right direction. After 2+ years of ER visits, doctors visits, meds, meds, meds my son is in a very severe condition. Past 2.5 years with my son Jonah have been a nightmare and nobody ever mentioned PANDAS/PANS in all that time. For 14 years Jonah was a loving life kid, swimming, playing, beach lover until something took all this from him! (Jonah has been non-verbal since the ages of 3 and is now 17, lives near Palm Desert, CA) I recently purchased the book "Your Child Has Changed" and oh my goodness I have been saying that for years to death medical ears. The significant regression in my son is so crazy obvious and yet I often feel powerless to help him. Looking back I can recognize that Jonah did suddenly develop OCD when he couldn't walk normally anymore completely out of nowhere. He would need to touch posts, walk backwards and forwards frequently and would freeze often at cracks however all the "experts" told me relax it's just another autistic trait. So I did, for a while...and now 2.5 years later Jonah cannot go anywhere without serious self injury, panic attacks and massive anxiety. Last 2 years I have ... Worked with child Psychiatrist with over 20 years experience at one of the largest children hospital in our area prescribe a ton of SSRIs and other brain meds to no avail. Jonah started having seizures 6 months later but only once every 3 weeks on the dot! No seizure medication has ever altered frequency. (In fact most of the time the seizure temporary stopped the OCD behaviors and made his symptoms less severe) 2018 UCLA psych "experts" hospitalized hime for 4 weeks put him on massive amounts of Prozac and sent Jonah back to me much worse than he came in. 2019 Sutter Psychiatry in Sacramento performed ECT as his aggression during transitions was getting too severe for anyone to handle - didn't help his anxiety or OCD at all. I feel very angry at the medical field and (annoyed at myself) because my son is so severe and now incapable of basics tasks he could do years ago and yet a possible diagnosis exists. I have now started working with a MAPS doctor and getting hair samples, labs tests started) but my fear is that Jonah could have had PANS for close to 3 years now. Where do I go from here? There is a place in Irvine, CA says they diagnose PANS https://www.integrativemedicineoc.com however have left them 3 messages and no reply. His current doctor has not even heard of PANS 😞 Jonah really needs some urgent help as his life is wasting away.... any advise would be greatly appreciated.
  4. Good afternoon, I have been working on writing up our PANS story, and I realized that the only thing that ever helped us with my DS's panick attacks was this CBT audio program for anxiety called the Turnaround Program. It was the best $200 I ever spent. My son still asks for it when he's flaring/feeling anxious. It was much more helpful than any of the therapists we've seen. I think he really liked it because he could do it when he wanted and he didn't have to share his own thoughts and feelings, but could take what was helpful from the program. I just wanted to share in the hope that it might be helpful to someone else. I'd be really interested if other people had tools for managing PANS anxiety/panic attacks that aren't listed elswhere on this site. I have read all the past threads I could. This has been our most difficult symptom. Happy holidays!
  5. 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!
  6. 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!
  7. 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.
  8. Hello - I live in Seattle, WA and am in the process of having my 12-year-old son diagnosed - he has all the symptoms of PANDAS including recurrent strep throat (at least 1 or 2 times per year since K and he is now in 7th grade.) We also have a family history of autoimmune issues and rheumatic fever. Strep was diagnosed last in October 2016 which we treated with antibiotics. When erratic behavior began at the end of Nov he had no symptoms of strep, thankfully we tested and surprisingly he tested positive for strep again. I'm specifically looking for: 1. PANDAS friendly physicians in the Seattle area? 2. PANDAS families or a support group in the Seattle area? 3. Insights into getting into the PANDAS/PANS clinic at Stanford or any other place with leading experts? 4. Any tips on schooling & dealing with Seattle Public Schools to get services for children who are medically fragile such as in-home tutoring since he is unable to attend school? 5. Does it seem possible my son may have had PANDAS since age 6 - first grade - and we didnt have the MAJOR outburst of symptoms unitl age 12 - 7th grade? Just curious if others had a similar situation as in each time the child got strep things got worse and worse over the years - but in between things were mostly okay? We will be seeing Dr. Hatha Gbedawo who is an ND and listed as a PANDAS specialist on PANDAS.org. We will also be seeing a neurologist Dr. Ming at CHMC. We already saw an immunologist and psychiatrist at CHMC, but both physicians made it clear they were NOT PANDAS experts. I reallly want to find an MD - neurologist or pediatrician in the Seattle area who is PANDAS knowledgeable so I will have the option to explore both western medicine treatments such as steroids & IVIG as well as looking at the eastern medicine side working with ND Dr. Gbedawo. So far I am not having much luck finding someone who can prescribe and treat with IVIG - (hoping Dr. Ming is a possibility.) The very first time my son showed major separation anxiety and started having difficulties in school was first grade. I thought the problems were solely due to ADHD & dysgraphia/dyslexia. I now realize this may have been PANDAS and/or PANDAS causing an exacerbation of co-morbid ADHD & dysgraphia. My son has had two rounds of antibiotics since December and has had some symptom relief, but he is still having extreme anxiety and is unable to attend school. He has now been out of school with the exception of a few days here and there since Nov. 28, 2016. It is agonizing watching him be in so much distress (mostly anxiety) and not feel like we are directly treating possible inflammation on his brain with continued antibiotics and/or anti-inflammatories. We have started regular vitamins and fish oil to try to help with the inflammation, but that is not cutting it and we need a PANDAS specialist to move on with treatment. Thankfully we are not seeing tics or obvious OCD - (although I fear there may be some hidden OCD issues.) We are seeing: restricted food intake; extreme anxiety; separation anxiety; emotional lability & depression; irritability, aggression and oppositional behaviors; regression; deterioration in school performance; increased sensory & motor skill issues; somatic issues including nighttime fears and inability to sleep in his own bed. He was picking at his thumbs until they bled, but thankfully that has stopped. Not sure where this fits in other than an "escape" from this nightmare, but he has become obsessed with his cell phone and will not be away from it for any length of time. Huge fits and rages if we try to limit it or take it away. Any thoughts you have would be greatly appreciated! Thank you in advance for reading our story and taking the time to share your thoughts.
  9. 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
  10. The Chronic Lyme Disease Summit http://chroniclymediseasesummit.com/ is a free online conference starting today. There are many great speakers and topics lined up, and I encourage anyone still looking for answers, even if you've ruled out Lyme or don't think it's a possibility, to check it out. Much of it will be relevant to PANDAS/PANS, whether or not Lyme is involved. Speakers include Dr. Horowitz, Lee Cowden, Scott Forsgren (Better Health Guy), Kenneth Stoller, and Joseph Mercola, just to name a few. Topics include mitochondrial dysfunction, brain conditions, stress and emotional trauma, treating anxiety and panic with tryptophan and GABA, energy medicine, Chinese medicine, trigeminal neuralgia, IV vitamin C, rife, infrared technology, sugar, mold, nutrition and detox, gut microbiome, biofilms, GAPS diet, ketogenic diet, grains = inflammation, cancer, heavy metals and more. They have several speakers each day and you have 24 hours to watch their talks for free.
  11. Hi, please kindly advise me of what natural supplements I can take to alleviate OCD, anxiety, ADD and depression. I am a 41 year old mother who has two wonderful children. I am always the type of person easy to get worry and depressed. I now have two major anxiety triggers- 1) my son has chronic motor tics for 2 years now but under control for now 2) My older daughter has myopia and wearing overnight ortho-K lenes for 2 years to control progression but latest Nov retinal scan shows her retinas are thinned a bit, but no tear no holes. OD did said to me that she is fine and it is normal to have retinas stretch since she is myopic since young age. But since the appt, I have developed very obsessive thinking of the most worst possible outcome of my kids that my daughter may need eye surgery in the future, maybe retinal detachment and loss of vision etc... I cry a lot and my husband keeps telling me Dr said she is fine for now, but only God knows what will happen in the future... My obsessive thoughts is wearing me out...I feel anxious and keep thinking of the possible worst outcome... I am a Christian, I start keep reciting Bible verses, but seems like my brain doesn't believe what the OD said about my myopic daughter who is fine right now...so I am in anxiety and depression, hardly have energy to teach my kids or eat... I start taking Kirkman multi-vitamin for a month since I am low in Vit D. I also start taking a potent high quality omega 3. And Kirkman L-theanine 200mg at bed time but seems no help.. Thanks, Barbara
  12. I know that mycoP is hard to irradicate, but has anyone seen any improvements in behaviors very soon after starting treatment, or do we have to wait, wait, wait for any relief of these symptoms? She's on Doxy for mycoP and Nystatin for gut stuff. (Also some herbals for viral issues.) Being PANDAS, I'm sure there is more lurking in there, but this is what we're working on now. Just curious if anyone saw some relief from anxiety, intrusive thoughts or OCD quickly after beginning treatment. We need a little hope here!
  13. If anyone can reccomend any books on helping treat OCD I would appreciate hearing from you. My ds will be 14 in a few weeks so not exactly dealing with a child. Here is a brief background. My son presented sudden onset tics with a strep infection several years ago. He had always presented with mild OCD but it was mild and did not interrupt any normal life. Looking back he probably had had a couple of pandas flairs when he was younger with strep infections but I did not recognize it until the tics started. I was fortunate enough to find great doctors who diagnosed pandas and started continuous antibiotic treatment. He greatly improved after that. Now that everything else is almost under control we are left with the anxiety, irrational thoughts, and OCD. He can function as normal during the day but at night before bed the real anxiety sets in. He has to check on the (important) things in his life such as phone, golf clubs, computer, etc.... He has to make sure everything is where it should be before he can sleep. Make sure he has not lost anything, This takes about 20 extra minutes. He also worries that he thinks out loud during the day and people are going to think he is weird. I have to reassure him he does not think out loud. Finally, then he can relax and fall asleep. His doctor has said if I feel this disruppts his life then to call her and she will prescribe a low dose Zoloft. I have not wanted to try this yet as I am afraid it could trigger even worse thoughts. We have also never consulted a therapist as I don't need all the extra expense that would incur. Even with insurance the co-pays and deductables can add up. I would like to try to help him myself before any of this escalates and becomes worse. If there are some books out there any of you can reccomend on how to help him I would appreciate your advice. I have asked him to let me "check" his things for him so he can get some sleep and he has agreed to let me do some of his "checks" for him. I am sure this is probably not the right way to go about helping him get past this but in the short term it helps him get to bed earlier. Before I try giving him meds or expensive therapy I would like some guidance on how to appropriately handle this. Thanks, I am headed to the bookstore this weekend.
  14. Just picked up the April issue of Psychology Today. Pg. 40 "The Psychobiotic Revolution". "It may be possible to relieve anxiety and depression solely by manipulating bacteria in the gut." "Recently, he coined a term for the live organisms in the gut that are psychoactive and of potential benefit to those suffering from a variety of psychiatric illnesses - psychobiotics." (Yeah, they are just probiotics...) Some interesting info: A cocktail of Lactobacillus helveticus and Bifidobacterium longum was found to reduce cortisol levels and curb inflammation. Gut microbes that actively secrete GABA are Lactobacillus and Bifidobacterium. (Lack of GABA in the brain may bring on the negative ruminations long linked with depression.) Bifidobacterium infantis as a probiotic alters levels of serotonin - just like Prozac. Lactobacillus reuteri, delivered in either yogurt or supplement form, improves mood, appearance, and general health by increasing levels of oxytocin. B. infantis, L. reuteri and several other strains work throughout the immune system by attacking inflammation, a hallmark of depression. Lactobacillus rhamnosus reduces anxiety and depression and beefs up production of GABA receptors. B. infantis and L. reuteri work on the immune system, where they suppress proinflammatory cytokines. HERE's what makes me aggravated about this article. Instead of encouraging probiotic use NOW, they talk about these "therapeutic psychobiotics being a long way from reaching the market", but that you can still eat yogurt and fermented foods. They say that most probiotics don't make it past our stomach acid - but this article is from Psychology Today, so I'm sure it's not "Pharmaceutically Correct" to push anything that is already out there on the market. Sorry, but I'm fully aware that most research is paid for by the pharmaceutical companies, and they want to get their money grubbing paws on this. All of the microbes listed are in probiotics I have here in my refrigerator, and some of them are specifically made to get to the gut. That rant being said, I'm just glad that psychiatry is starting to see the light of day! Finally realizing that the brain is actually attached to our bodies, and affected by them! Hoorah! Since I pretty much typed out the whole article, I guess I should give the author credit! Thank you, Jordan Davidson.
  15. Hi there - would love to hear what people are doing regarding school. My DD is in middle school, so she switches classes all day long. She has a very hard time making it through the day. All the teachers and most kids knows she has TS, but she still is embarrassed and holds back louder tics then ends up doing softer, smaller ones more frequently, and then can't concentrate. She has a 504 and a modified plan where she can leave the classroom at any time and even does some half days to take the edge off. But it's still so tough. Thinking about home school/online learning but hate to take her out of the regular school setting. What do you all do? Does anyone home school? Special/private school? Would really love to know your experiences and what works/doesn't. Thank you!
  16. Sorry to post about Riluzole here as well as in the OCD forum, but I noticed more Riluzole results in the Lyme forum, so thought I would try my luck. I've been taking Riluzole for about 4 weeks now: I began at 25mg and raised 25mg every week, and am currently on the standard dose of 50mg twice a day. However, in that time, I've been feeling more anxious, restless, irritable and am having trouble sleeping. I really don't want to give up, but it's been *impossible* finding any negative experiences with the drug, which has me a little perplexed. I've even emailed 4 researchers who oversaw trials in depression/anxiety conditions and none reported seeing the adverse side-effects I'm experiencing. They are, however, listed as uncommon/rare in the PI sheet. My doctor has no experience using the drug, so isn't much help. I plan to give it another week or so, but just wanted to know if anyone has heard of a patient growing more anxious/stimulated and if the effect was possibly transient? Thank you
  17. My 10 y/o has aspergers as well as anxiety, pandas and lyme. Our biomedical dr suggested we try homeopathy for the anxiety and so we have been giving him Anxietin and Synaptol twice a day. The dr said that even though our son doesn't have adhd (Synaptol), the two have been know to work better together in treating anxiety. Since we started using theses products 10 days I have noticed our son is a bit more emotional and irritable. Does anyone have experience with these remedies? Has anyone seen a negative reaction at first? Our dr said that an initial negative reaction may not be a bad thing...it may mean that he is just getting some of the bad energy out. I'm just not sure how long to continue using them if we aren't seeing a positive response. Thanks!
  18. My 10 y/o son had strep Nov 2012 and was diagnosed with Pandas in April 2013 after severe mood swings, depression, irritability and aggression started. He also has anxiety and Aspergers. Waiting for Lyme testing results. We treated with zith and penicillin for the pandas and also did a course of Flagyl for clostridia. Titers were at 1140...trending down but only at 1080 now. All of his symptoms are much better. The only tic he has is a vocal humming he makes when he watches tv or plays on the computer. Is that normal to have a tic only at a certain time? Dr suggested we try Augmentin but not sure I want to give him another antibiotic. Also, dr started him on Diflucan since he's been on so many antibiotics. Can the Diflucan cause diarrhea?
  19. A good friend has recently brought to my attention that our ds presents with ADHD. She's researching it because her son has been diagnosed and they are trying to go the medication route. We are planning to have ds evaluated specifically for ADHD because I've begun to wonder if a) this issue and all its consequences are contributing to his school refusal and it is just becoming more obvious now because his workload and other responsibilities are increasing significantly now that he's nearing the end of 6th grade. I've always been more focused on the underlying cause than symptoms, and we are continuing to work with a LLMD/DAN doc, but the school refusal has us on the brink of pulling him out of regular school, something neither he nor we want. I'm just wondering if others who've dealt with school refusal ever felt there was an ADHD connection - as in they are anxious about being at school because they have trouble doing their work while other kids seem to have no problem and get in trouble for talking, getting up during class, impulsive behavior, etc. I've heard most people talk about OCD as the primary problem that prevented kids from getting to school, but now that we're looking at this closely, I (as well as my friend and two of our teachers) feel that the ADHD issues could be causing some (possibly most?) of the anxiety around going to/being at school. Other things that make me wonder if ADHD is the primary problem contributing to school refusal are 1) his separation anxiety, which was severe at the beginning of PANS isn't much of an issue any more. He stays home alone, goes on overnights, and has no problem saying goodbye to me in most situations. 2) We tried Zoloft last Fall for the anxiety and it had no effect, except to cause intrusive thoughts once we upped it past 6mg. Thoughts/experiences would be much appreciated!
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