Jump to content
ACN Latitudes Forums
  • Announcements

    • Administrator

      Forum Community Guidelines

      Forum Community Guidelines

      Our forums provide support for people dealing with neurological and related issues. Everyone joining this community should find it a safe haven where they are treated with respect, civility, and understanding.

      Your agreement as a user: You agree that you will not use this forum to post or send messages that are knowingly false, inaccurate, abusive, vulgar, obscene, profane, or sexually oriented. Text should not be defamatory, harsh, accusatory, intimidating, slanderous, an invasive of a person's privacy, or violate any law. Doing so may lead to you being banned (and your service provider may be informed). The IP address of all posts is recorded to aid in enforcing these conditions. You agree that the webmaster, administrator, and moderators of this forum have the right to remove, edit, move, or close any topic at any time should they see fit. You agree not to post any copyrighted material unless the copyright is owned by you or by this forum/website. Advertisements, solicitations for services or business, most research requests, as well as any type of research on the content of these forums by third-parties, are prohibited. Unauthorized use or reproduction of posts on these forums is not allowed. Any user who feels that a posted message is objectionable is encouraged to contact an administrator.

      Announcements, media requests, and research requests

      These need administrative approval. Please send to an administrator before posting.

      Inappropriate content

      Members are here for support and education. Check the list below for types of posts that are not allowed: Advertisements Flames or messages meant to intimidate, criticize, or harass others Threatening or obscene messages Messages discussing a private message (PM) from others Copyrighted materials that you do not own the rights to, except educational or research articles Messages containing or condoning illegal acts; also messages of suicidal intent Direct discussion of politics (please avoid) Specific or strong religious views Requests for donations for other organizations unless approved by administrator Solicitation of members for research, media projects or other projects, without prior administrative approval About links for other websites:

      You may have links in your profile as long as they do not violate our guidelines (above). Links within a post to online resources and articles are generally OK. Do not post links to other forum communities with the aim of soliciting other members to that community, thereby taking them away from this community.

      When a guideline is violated

      If you violate a guideline, you will be contacted by PM or email. We will try to resolve things amicably. We don’t like to ban members and rarely do, but this is an option.

      Updated March 19, 2010
    • Administrator

      Disclaimer and Privacy Policy

      Disclaimer

      The ACN Online Discussion Boards are intended to provide helpful information and allow sharing of ideas. Postings should not be considered as medical advice. All users should consult with their healthcare professional for questions or medical decisions.

      Users must accept full responsibility for using the information on this site and agree that ACN, Latitudes.org, advisory staff or others associated with the site are not responsible or liable for any claim, loss, or damage resulting from its use. Please remember that we do not actively monitor all posted messages and cannot be responsible for the content within. We can also not guarantee that access to the site will be error-free or virus-free.

      Reproducing any document in whole or in part is prohibited unless prior written consent is obtained. Web pages may be shared when passed on with the URL.

      Information posted on the Forum is done so voluntarily and will be accessible to the public. The material posted may be used by ACN (without the identity of the user) for publications or educational purposes. No compensation will be provided for the use of this material.

      Note: ACN is providing this service with the expectation that users will abide by the guidelines provided. We reserve the right to monitor postings and remove or refuse inappropriate and questionable material, as well as remove dated postings at our discretion, for any reason.

      Privacy Policy

      When you register with the Forum, you need only give your email address, which is available only to the Adminstrators and will not be shared on the Forum site or with others in any format. Forum users will see only the user name you choose to provide.

      Our web server collects and saves default information logged by World Wide Web server software. Our logs contain the date and time, originating IP address and domain name (the unique address assigned to your internet service provider's computer that connects to the internet), object requested, and completion status of the request. We use these logs to help improve our service by evaluating the "traffic" to our site in terms of number of unique visitors, level of demand, most popular page requests, and types of errors.

      You have the option of enabling to save your username and password data when you are accessing interactive parts of our websites, to allow your web browser to "remember" who you are and assist you by "logging on" without you having to type your username and password repeatedly. This is known as a cookie and it can be enabled or disabled in your control panel. Cookies are small files stored on your computer's hard drive that are used to track personal information.

      Except for authorized legal investigations, we will not share any information we receive with any outside parties.

      Updated March 19, 2010

All Activity

This stream auto-updates     

  1. Today
  2. Shake and vac

    Has anybody noticed major increase in tics with exposure to shake and vac ? i don't know if I'm going mad as my boy has tics all over today . Is shake an vac a culprit? i appreciate any comments. im on a process of elimination as only just 2 days a go purchased Shiela Rogers family guide thank you for your time xx
  3. Yesterday
  4. Magilu, my child has presented very, very similarly to the original poster. Please let me know how I can help: Strep triggered autoimmune encephalitis is the umbrella diagnosis - informally PANDAS. Sub diagnoses include Sydenham's chorea, catatonia, OCD, etc. My daughter had a most severe case including TWO years of catatonia - sometimes even waxy catatonia. Her treatments included IVIG monthly, 6 mos rituximab (failed), 9 mos cytoxan (failed), finally after five years sucess and almost full remission with tociluzimab. Her catatonia also involved anorexia, bed wetting, and even raging at times. I know that each of our kids presents differently, but I do have a lot of experience with catatonic symptoms. For two years she was either in bed or slumped over in a chair. I had to bathe her and at times even get her to the bathroom. It was devastating, but the good news is that she came back from a vitually vegetative state and starting college in January. Meds (at different times) to address the catatonia was primarily Ativan (lorazepam) and risperidone. She improved slowly on these meds but it was the tociluzimab that brought her back to near normal after five years of all the symptoms your child had (and more) including high DNase titers, etc. If my child improved, you have every reason to belive your child will too! See my recent update post for more details on her recovery. You are more than welcome to PM me.
  5. Last week
  6. Does this look like a tic?

    I think it looks like a tic . My son has that sort of movement sometimes . Ive counted 10 different movements that my boy does all of which are slightly different . I hope I'm wrong xxx just watched your video again and notice your little boy raising his leg too. My son also raises one leg and almost slides forward at same time
  7. Does this look like a tic?

    I think it looks like a tic . My son has that sort of movement sometimes . Ive counted 10 different movements that my boy does all of which are slightly different . I hope I'm wrong xxx
  8. I am checking as the mom much farther down the road to be a help, if I can. My daughter was diagnosed in November 2012. This is our five year anniversary with this disease and there is HOPE for all of your kids. This is long but please read: With one of the most profound and difficult to treat cases to ever treat - my daughter is staring community college in the spring! You name the symptom and she has exhibited it - to name a few... complex tics, anorexia, bed wetting, mutism, depression, OCD, sleep disorders, a host of psychiatric symptoms (including schizoprhenic type symptoms including violence), and catatonia. She has also had every treatment - countless antibiotics, IVIVGs, rituximab, cell cept, prophylactic antibiotix, cytoxan, tociluzimab. We lost four years of life - she lost high school, and I shut down ever yaspect of life to take care of her. It has been lonely, frustrating, difficult, depressing...and yet hopeful, strengthening, funny, and finally TRIUMPHANT. I am repositing something a wrote in 2015 to give you all some encouragement and some general advice - especially to parents of children who are most severely affected. After I wrote this my daughter's trajectory slowed, but we found tociluzumab was the treatment that finally rounded out her recovery and though she still has some memory loss and is still making her way back academically. We know that she is going to have a NORMAL LIFE. Just a year ago, I thought she would always be with us, never have a job, never have friends...and now she is learning to drive and starting college classes (with a little support from special services) in a few weeks. Now she is running, swimming, laughing, talkative, and back to her old self - volunteering at a local library and worried about her hair and makeup (you have no idea what a big deal that is). Remember that every child presents differently and the part of the autoimmune system that is affected - and therefore the treatment that works - is different for each child. That said, PM me or ask me here and I will try to start checking in now that I too have my own life back. Hang in there....it will get better... Here is the 2015 post. My daughter has one of the most severe and drug-resistant cases of what falls under the big umbrella of a strep-induced autoimmune disorder that left her with severe neurological and significant joint involvement. For those who don't remember us, my daughter was an exceptional student and athlete, and world's happiest and easy child to raise - until the bottom fell out two years ago. In a matter of a days she suddenly and frighteningly developed Sydenham's chorea, tics, mutism, mood swings, joint pain and swelling. aversions, delusions, rage and host of other heart-breaking symptoms. It has been a tremendously challenging road and so as an unwilling seasoned veteran here is the advice I am giving to anyone who thinks their child has PANDAS, PANS, LYME or any other unusual/frustrating unnamed condition. 1. Do NOT waste time. The first time you see symptoms that do not clear up permanently after a round of antibiotics, get real help. Any of the symptoms I have described indicate your child has neurological inflammation. For the majority of kids, this could mean your child has cross-reacting antibodies, that are attacking your child's healthy tissues. For many kids this could involve brain, heart or joint problems so you absolutely need to rule out any potential damage, especially heart involvement (this was the one potential result our daughter had). The longer you go, the more damage that can result and the harder it will be to treat. This means: 2. Your child has a PHYSICAL disease with psychiatric symptoms resulting from inflammation so you need the right specialists. If your child has recurrent or ongoing flares after antibiotic treatment, and you are only seeing a psychiatrist or PANDAS doctor who has not done a full spectrum of physical diagnostics (MRI, heart ultrasound, tests for Lyme, allergies, inflammatory markers, titers, etc.) then ask your pediatrician for a pediatric neurologist referral. Remember this is PHYSICAL. I can't emphasize this enough: If you can, go see a neurologist and an immunologist. 3. It's not in a name, so don't get stuck with a label. I know we all want that relief/satisfaction of saying my child has "PANDAS" or some other condition, but that can predispose physicians to start treating before a real diagnosis and plan is put forth. For example, we ran off immediately to USF for PANDAS evaluation, at which they gave us some surveys, talked to us and then tossed us some antibiotics with a diagnosis of PANDAS. Not one physical diagnostic test was done and we were foolish to go along with that. In time, they would have ramped up to IVIG, etc....but I would never have known that my daughter could have had heart damage. For those wanting a name., honestly, ( For the math-minded I think we are talking about a spectrum of autoimmune diseases that could be plotted on a coordinate plane of X and symptoms on Y, to find that our kids are scattered all over the place) I think there are as many names for these diseases as there are kids. Just call it, "Insert your child's name here" disease. I am kidding - but also not. The many presentations of these diseases explain why they sound akin to others (like Lupus) and yet different when we talk to each other here. Also, never mention diagnosis to insurance providers. Many are looking for reasons to reject claims so let your doctors and insurance companies play the coding game. 4. Take meticulous notes regarding symptoms.Take pictures and video even at bad times. Trust me, you will forget. Look for subtle things like handwriting and appetite changes, sleeping changes, expression of unusual ideas, reduced speech. When first met our neurologist, I came in not with a disease name but a table of symptoms, date of onset, severity and frequency. I wanted them to diagnose without predisposition. 5. Don't worry about the bandaids - yet. I know a lot of us sweat everything from glutens, to certain amino acids to micronutrients. Until you rule out allergies, known genetic deficiencies....don't lie awake at night and wonder whether or not you are missing some esoteric piece of the puzzle. Feed your child well, make sure they are getting plenty of vitamin D (low is usually indicative of a chronic inflammatory process), and as many nutrients as they can from real food. You are a good parent, and while the little things will help along with a healthy lifestyle, there is no magic pill. Proper diagnostics will eliminate a lot of concern about allergies and root causes so you don't waste a fortune in time and money trying this and that. We are desperate and vulnerable so read everything with a critical eye. 6. Trust your gut and assert yourself. I went to FOUR doctors and had three ER visits with my daughter, shaking my head and respectfully telling them we were moving on when they told me she was probably just depressed. WRONG. (Tangents: I think our world, present and past is full of kids who are under-diagnosed for physical problems, and there is NO difference between mental health and health. It's just health). 7. Your child is not your child. There is no way that sweet baby of yours would ever do the things he/she is doing if he/she was healthy. Easier said than done - but do not take it personally. That said, reasonable consequences apply. If your child is having severe outbursts, you have to remind yourself: THIS IS THE DISEASE. Say it like a mantra if you have to. 8. Get healthy and fit. I have had to care for my daughter for two years 24/7. Most of you will not be like that. It's going to try your body, mind and spirit. It's going to be hard so you need to be battle prepared. At times, you are going to be scared, angry, tired, frustrated and lonely so you are going to need to be at your best like no other time in your life. Get sleep and don't worry if there are fingerprints on the appliances and the car needs vacuuming. My family has learned that no matter what, I am taking an hour a day to run or surf. 9. Get brave and tough.. People closest to you are going to hurt your feelings, and give you unwanted advice. Head them off at the pass and tell them that you are on top of all the research and protocols (you need to be), that this is going to be stressful, that you are so grateful for their support, but that the things you can't have them do include _______. For me, it was advice on how to parent...like when my daughter would be defiant, or when I chose to keep her out of the public eye when her tics and chorea were severe. Doing that up front will save all of you a lot of misunderstandings down the road. The "Loving but Uninformed" in your life will give you some bizarre advice at times; take it in the spirit in which they meant it. At the same time, get soft. For me, this meant learning to accept help from other people. I have always prided myself in being able to be self-reliant, being able to do it all, but with this spectrum of disease - forget it. I have learned that letting people help is not a sign of weakness, but an acceptance of kindness that can really make a difference. The people around you who really care want to help. Let them. 10. Slow down the clock. You aren't going to get it all done. At times you are going to be late to school. Sometimes you won't get to a place at all. You might even miss a major life event like a close friend's wedding, or as it is in my case...your chid might even miss a year of school. It will work out. 11. Read it all, get informed, stay on top of it...and then walk away at times. You cannot live and breathe this everyday without becoming obsessed in an unhealthy way. My daughter loathes it that I pick up on every tic, and my husband got tired of my talking through the study results in the third standard deviation for the sample size of 12 for the methylation of a certain gene expression (whoa, sexy AND romantic) when we crawled into bed at night. (The main reason I come and go from this website .) 12. Go out at a minimum of twice a month for the evening. The only rule: Thou shall not talk about thy child or thy child's disease. Also keep something out there a month or two away to look forward to...beach, trip to parents, buying a new sofa, camping trip. Finally, don't forget the healthy siblings and your SO. As much of a nut as I am about healthy eating, sometimes a little love and acknowledgement is as easy as a box of walnut brownies that can be mixed and tossed in the oven in two minutes...with a PostIt note alongside. After two years of IVIG, Cellcept, Rixtuximab and Cytoxan, we are finally knocking down the world's most persistent immune system and our daughter is slowly getting better. Chorea is gone, tics gone, OCD gone, moods better, tremors gone, ataxia gone, mutism gone, catatonia gone, sleep patterns good, aversions gone, eating well, engaging with the family, smiling, laughing and has some quality of life. Long story short: Treat physically and if a child like ours (who is probably one of a handful of the most profound expressions ever on this disease spectrum) can get fully back on the happy and healthy track - yours will too.
  9. Hi pepper1, My son is now 17 and he still rarely leaves the house. He made some improvement for a while and went out a couple times to his friends house but that was about the extent of it. He will go to the occasional doctor appointment, but other than that he doesn't leave. He hasn't been to a store, School, or other facility in four years. He is just going to have to get his GED through the local College because the school district has washed their hands of him. Over the past few months he was having nosebleeds quite a lot.... meaning a couple times a week at least. At first I didn't think much of it but then he started complaining that his anxiety was getting worse and he wanted to go on anxiety medicine. This coming from him and actually communicating to me was a really big deal so I listened. I consulted his pediatrician who put him on a very low dose of Zoloft...25 mg. It has been two weeks that he has been on the Zoloft and it hasn't helped much. Yesterday he came out of his room and told me that he wants to go on the PANDAS medicine. I asked him if he meant the antibiotics and ibuprofen and he nodded yes. I finally realized that the nosebleeds could be related to a possible strep infection in his sinuses and that a flare-up is starting. It is also possible that because my husband and I have been sick with something viral he may be reacting to it. At any rate I am calling his pediatrician in the morning to see if we can do some kind of strep swab and then get him back on antibiotics. I have noticed that the antibiotics with ibuprofen usually seem to help with his flare-ups but it doesn't completely eradicate all his symptoms. If only IVIG were affordable for us we would be doing that in a heartbeat.
  10. My DS20 is scheduled for two weeks of appointments at Rothman at USF in January. This will be his third visit there. can someone recommend an Airbnb rental that is within a short walking distance to the clinic?
  11. Daptomycin, mentioned in that second link, is an IV abx. Dapsone is the oral version. My understanding is that Horowitz has been treating lyme patients with oral Dapsone for a couple of years, in combination with high dose folic acid (the study says folic acid was used for the purpose of mitigating the small risk of potentially very dangerous side effects of Dapsone, but on his FB page he says it was, indeed, methylfolate, i.e. natural folate rather than synthetic folic acid). He has a paper on it. https://www.omicsonline.org/open-access/the-use-of-dapsone-as-a-novel-persister-drug-in-the-treatment-of-chroniclyme-diseasepost-treatment-lyme-disease-syndrome-2155-9554-1000345.php?aid=7159 From the anecdotes I've read, like anything else, it helps some and not others. Personally, I'm very interested in the anti-inflammatory and immune modulatory effects of Dapsone in addition to its antibiotic qualities. For a lyme angle, there is an interesting discussion here http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/136190
  12. I have finally gotten around to reading the 2nd link above. It seems to be a very exciting development for lyme treatment, but then it says "Direct extrapolation of these in vitro findings to human treatment would be unwise and premature." Has anyone had experience doing the 3 abx in combination anyway?
  13. Was the IVIG done for PANDAS/PANS? Who was the ordering doctor, if you don't mind me asking.
  14. We all want a definitive biomarker for PANDAS/PANS, but it is not to be had. The Cunningham Panel was never touted as a true biomarker, only as indicative - but even that is now in significant question (see below). Given that, a better choice for your money would be to book one of the top PANDAS/PANS experts that have had extensive case loads. Those experienced experts will know that strep blood work coming back low (when symptoms have been present for a very long time) does not necessarily mean no to PANS or PANDAS.
  15. This is my first time to post, so please bear with me. My son is 5 and has had questionable PANDAS behavior since he was 18 months old. He had multiple ears infections from infancy until he received tubes at 16 months of age. There also a time period around this age where my husband, son and I had strep throat continuously for 2 months back and forth - we were back and forth to the docs and seemed to be reinfecting ourselves. But we got over it! Or did we... From that point on our son started showing a lot of tantrums and aggression. He would hit himself when he would get frustrated. He was so OCD with his toys, food, etc. and change was not good for him. He developed sensory processing disorder and showed so much fear about everything! After consulting with his pediatrician about PANDAS, I was basically laughed at and told it was all developmental and welcome to the terrible two's. We have had him tested for autism (negative), consulted with a psychologist, enrolled him in OT, ST, and play therapy and nothing seems to help. He is developmentally delayed and his fine motor skills are no where close to where they should be. Something is holding him back and my gut tells me it's bacterial/viral in nature. Although his aggression is better, we still so so much inflexibility, lots of OCD... he also also a chronic smell that comes from his nose/mouth area. We have had the hardest time finding a doc that will test for PANDAS. We finally found a guy in San Antonio close to where we live, and he performed a large amount of blood work. When results came back he said "no PANDAS", but he only did the the Antistreptolysin O Ab (38.1 IU/mL) and Anti-DNase B Strep Antibodies (<78 U/mL). I've been reading where strep tests can be negative but a child can still have PANDAS. Not that I'm convinced that my child has PANDAS, should I request certain testing to rule it out? I've read about the Cunningham Panel by Moleculara, but I know it's pricey. At this point, I don't care. We just want him better! Any ideas or suggestions on testing would be greatly appreciated!
  16. My daughter is currently 5 years old. At the age of 3 she was making faces with her eyes when she was watching tv. I asked her to stop and it stopped few days after. Since last year she started doing the same face again. I took her to get her eyes checked just in case. Then her tics started changing to eye blinking, some nights she was pulling her face and upset about how she could not control it. Current tics are: finger and/ or toes stretching and rocking her legs outside while she moves her arms to her chest or head. The finger and toe stretching does not appear to bother her as they are least visible, however she is now getting upset about her leg rocking/rolling outside as she noticed that others are giving her looks when she does it. I don't understand how it only happens outdoors. She had a long list of allergies as an infant and now she is only allergic to cashew, pistachio, avocado (new one that she developed after biting the pit of a lychee) and rye grass. She has also developed some irrational fears and is refusing to go to the toilet alone, and asked for some of her booked to be removed from her room as she doesn't like the pictures. I don't know where to start and who to see for help. So far I have: - got a referral for a general paediatrician - got some herbs from a Chinese medicine Doctor the other day - giving her heaps of water as I feel her tics get worse when she is dehydrated - started Avamys nasal spray again to control rye grass allergy - stopped any processed food, dairy, sweet/artificial food - commenced fish oil and multi vitamins. I am based in Melbourne and I would like some guidance or recommendations of health professionals in VIC or Australia if possible. Thank you
  17. See all updates by gladiator16 gladiator16 I'm a newbie ! Ive just purchased Natural Treatments for Tics and Tourette's as my 9 year old boy has got horrendous tics again . We are off to see neurologist next month and I'm hoping he will do some allergy or blood tests on my son. can anyone tell me if they will refuse as the last time I saw him he wanted to offer my son drugs . I refused . This time the tics are 10 times worse and I'm guessing that will be his suggestion drugs. To,give background on my boy born prem 1 pound in weight so very fortunate to be blessed that I still have him. neck tics mouth grimacing head rolling sudden standing up,sitting down emotional at moment anxious some grunting but more like throats clearing . I have him on a 10ml of magnesium liquid form supplement at present and I'm not sure if it's making any difference yet. I bought magnesium oil to in spray form but he hates it and I think it's too stressful for him to insist he has it. Id welcome any help or ideas you may have as to,be honest I'm desperate to get my little boy back . thank you Suzanne xxxxx 12 hours ago Edit Options Report Chemar Hi and welcome. You may want to copy your post from your profile page to the TS/Tics forum as others are more likely to see it there. https://latitudes.org/forums/forum/1-tourette-syndrome-and-tics/ 11 hours ago 0 Options Report Your content will need to be approved by a moderator Reply to this status...
  18. I totally agree with your assessment - it is most likely instance of labeling a set of behaviors without looking at the cause. Many diagnosed with PDA syndrome share similar characteristics of those diagnosed with PANDAS - high anxiety, school refusal, PDD-NOS. Is PDA syndrome really describing a manifestation of auto immune disorder? I would say very possibly. Truthfully, to me, the value is not in the label of PDA syndrome but rather in the strategies that have been identified to help those with the presentation similar to PANDAS - namely the high anxiety and school refusal. Because not only do we battle in treating the auto immune disorder, we battle with its presentation. And to me, the latter is actually the harder of the two battles. It is already tough to deal with the high anxiety/school refusal, but it is even worse when the prescribed strategies don't seem to work AT ALL. But what they have determined with PDA syndrome is that normal strategies DO NOT WORK FOR THIS KIDS. To me, this is huge! This so correlates with our experience! So now we might have some better ways to deal with the presentations! Some insight on to what is really going on and HOW TO DEAL WITH IT! In the UK, where the PDA syndrome diagnosis is widely accepted, there are actually schools to deal solely with children with PDA. (But on the flip side, these kids may never get the real help for the root cause of their issues). I am currently reading Understanding Pathological Demand Avoidance Syndrome in Children by Phil Christie, et al. Anyway, I just thought I would share . . sorry about the weird spaces and punctuations but I am doing this without my glasses on, which really isn't the best idea.
  19. Personally, it sounds to me potentially like another instance of labeling a set of behaviors, rather than digging down into the genesis of the behavior. School refusal and flat out avoidance of stressful (or to be more precise, potentially stressful) activities have been, in our experience, a classic presentation of high anxiety. And if that high anxiety is the result of an autoimmune disorder, then you can slap any label you want on it, but that doesn't change what it is at its root. If UK professionals are treating this "syndrome" to address the behaviors but aren't extending beyond that surface to address the underlying cause, the response is likely to be incomplete and without staying power, IMHO.
  20. Group B trigger?

    Thank you - I did not have much luck researching either. I will email the dr. tomorrow and ask. My own doc certainly doesn't appreciate the risk factor I'm dealing with here. He said it only needs to be treated if you're pregnant.
  21. Our daughter was recently pulled from school for school refusal... we are just now getting her a PANDAS diagnosis after three years... the refusal was manageable up until last spring (after she got strep again.) I think it is mainly because the inflammation plus the anxiety makes it hard to concentrate (ADHD-like symptoms), plus she has recently developed auditory sensitivity that she did not have early on. She had just started middle school/fifth grade and I think the bigger school, the banging lockers, the crowds and the accompanying noise just got too overwhelming for her. She kept screaming, "You don't understand!" over and over again when I tried to drag her in. In other words, it never felt like a control thing to me, but more like her 10-year-old way of letting us know she was in over her head and needed relief.
  22. Researching school refusal and came across PDA syndrome. People with PDA will avoid demands made by others, due to their high anxiety levels when they feel that they are not in control. Anyone else heard of this syndrome? It has more widespread acceptance in the UK. Just so much of it sounds like Pandas son . . . think there is definitely some overlap. Worth looking into . . .
  23. I'm a newbie !

    Ive just purchased Natural Treatments for Tics and Tourette's as my 9 year old boy has got horrendous tics again .

    We are off to see neurologist next month and I'm hoping he will do some allergy or blood tests on my son.

    can anyone tell me if they will refuse as the last time I saw him he wanted to offer my son drugs . I refused .

    This time the tics are 10 times worse and I'm guessing that will be his suggestion drugs. 

    To,give background on my boy

    born prem 1 pound in weight so very fortunate to be blessed that I still have him.

    neck tics

    mouth grimacing 

    head rolling

    sudden standing up,sitting down

    emotional at moment

    anxious 

    some grunting but more like throats clearing .

    I have him on a 10ml of magnesium liquid form supplement at present and I'm not sure if it's making any difference yet.

    I bought magnesium oil to in spray form but he hates it and I think it's too stressful for him to insist he has it.

    Id welcome any help or ideas you may have as to,be honest I'm desperate to get my little boy back .

    thank you 

    Suzanne 

     

    1. Chemar

      Chemar

      Hi and welcome.

      You may want to copy your post from your profile page to the TS/Tics forum as others are more likely to see it there. https://latitudes.org/forums/forum/1-tourette-syndrome-and-tics/

  24. There is a not-so-low false negative rate with swabs and cultures. If you do, say, 3 swabs in a row (on the same patient at about the same time) and 2 are negative and one positive, you should call it a positive, because the false negative rate is much higher than the false positive rate. (From this study: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2095077/ one can calculate the false negative rate as 28.1%, and the false positive rate as 5.7% - but that is just for that particular kit and the way it was used - results for other kits and techniques can vary).
  25. Group B trigger?

    Yes, I have heard so - would take a bit to find out where I heard/read it. All I can find right now is a comment " In some of the US groups there have been discussion about other kinds of strep." (other than A).
  26. This is TMI, I know, but I (myself) had been feeling itchy down below and in light of DD's recent flares, I took a look with a mirror (she was positive for perianal strep last year.) I saw the red ring that looked just like she did, so I went for a culture... it came back + for Group B strep but my PCP says no need to treat and that it's not the cause of the itching... can Group B strep cause a reaction in PANDAS kids?
  27. How were her strep titers? Anti DNAseB measures the antibody.
  28. Hi there, Thanks for answering about TBB and OPC. Anti inflammatories are what is needed for us, I do believe, but something as powerful as prednisone. So I’m not sure where I’m headed in that department. I asked my NP about Serrapeptase, but don’t know yet. LDI is low dose immunotherapy and it supposedly uses extremely low does allergen/antigen mixtures in combination with an enzyme, beta gluccoronidase, which acts as a chemical messenger and retrains the immune system to respond appropriately. It is supposed to reboot the immune system. Sounds good to me, but when I asked my doctor, he said to try it, but don’t spend $100’s on it unless I can find something covered by insurance. He tends to think along the lines of scam, and just doesn’t want me spending a lot of money. I don’t know yet. i do have a new doctor’s appointment for my son with someone who is supposed to treat pandas with LDI in Towson, Dr. Richard Layton. I’m so confused as to what to do, though. It won’t be covered by insurance, and it is $300/hour. Perhaps 60% may be covered, but needs to go through insurance submission before I know. Definitely worth it if it works. Done sublingually, and requires every like 7 weeks of “core” treatment to retrain T cells or something. Boosters are also given along the way, which I hear isn’t overly costly, maybe $30-40 each. I just wish this was better known and understood! If you like, watch YouTube Dr. Karima Hirani. By the way, she Skypes and sees patients from all over. That one is a $400 appointment. Have you ever watched Dr. Elisa Song? (Thriving Child) That is where I heard about SPM, along with low dose naltrexone for keeping flares down, once it is tamed. All the best to you, I will try to keep you posted. Please let me know how your daughter is doing, too. I sincerely hope she is doing better day by day!
  1. Load more activity


×