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  1. 3 points
    Priscilla

    Possibly PANDAS?

    Funny I just got a notification from this response. I have not been on this forum in a very long time. I am so happy to report that I have a very healthy happy 16-year-old daughter who is no resemblance to the child that was in such turmoil. I will however say it has contributed to the person she is kind, compassionate and confident. I just went for an IEP meeting today which we did not even try Start one until eighth grade where things got worse before they got better but I have to say once over the hump of entering puberty things really started to balance out. She has not used one accommodation from her bare bones IEP she has good grades healthy social relationships and almost no residual OCD. I hope this gives hope to the parents that are going through this. My main advice and one of the hardest lessons I learned and she actually helped me see it was not turning her into something that needed to be fixed with all the desperation of trying to find her help she did feel like that for a time. Funny once I excepted exactly how she was whether it was going to last forever or not is when she started to get better. Sending love and good vibes to all of you and hope for a better day.
  2. 2 points
    MAMA3

    Tics and use of essential oils?

    Hello, This is my first time on here. Chris is my husband & I wanted to give an update on our son. He is now 9 years old & I'm happy to say his tics are now under control, with only occasional motor tics. We are so thankful for sites like this. Otherwise we would have never known to restrict his diet & try essential oils. I have several friends who have reached out after my recent post on social media & they are also seeing positive results with changing diet & applying essential oils. I spend much more time at the grocery store checking labels on anything that is processed foods. I buy mostly fresh fruits, vegetables & all natural meats. We can always tell if our son eats something that is not within his diet. His tics are almost instantly much more visible & it takes a few days to get him back to normal. We are so thankful everyday to have our happy go lucky son back. We know that he may always have tics, but it’s so reassuring to know that it is controllable with something as simple as diet changes & his daily half tablet of Guanfacine. I have said from the beginning I will always make sure he has a normal, happy life, no matter what. It is possible. My son is a reminder everyday.
  3. 2 points
    bws1565

    Why not start antibiotics anyway

    Jumping in with a different perspective. Was your son vaccinated? Vaccine adjuvants are designed to cross the BBB, specifically aluminium. There was much discussion on this site that Pandas is a version of aluminum toxicity. With vaccines, the aluminum is designed to hold onto the antigen and keep it in the body long term; thereby introducing antigens into the brain as well. It is believed that detoxing from aluminum and mercury helps quiet the immune system. We have tried selenium for mercury, malic acid for aluminum and other stuff as well. She is probably not all clean, but definitely is aluminum sensitive- she cannot tolerate aluminum based deodorant. She is currently using Diatomaceous earth for a slow detox for everything. I think it is helping well. I have learnt about vaccine reactions about seven years ago, and have not vaccinated my kids since. I have 2 totally unvaccinated kids, and several partially vaccinated. It is a CRIME what pharma is doing to our kids without knowing the long term effects. I can honestly say, VACCINES ARE NOT WORTH IT! Which parent would not nurse a child through a bad case of pertussins or measles, and even sweat the time through the a hospitalization for physical problems versus dealing with what we are dealing with here?!!! Just venting my pain. I wish I would have known about this issue many many years ago.
  4. 2 points
    maryangela

    Adult PANDAS doctor in Chicago?

    Donald Raden, MD is an Integrative Psychiatrist in Highwood, IL. His practice is called the Raden Wellness Center. My son (age 13) has been under Dr. Raden’s care for 1 year. He saved my son’s life. He treats many young adults with PANDAS. My son’s case was severe.
  5. 2 points
    kos_mom

    Tonight's Chicago Med episode

    I contacted PANDAS Network right after the episode. This morning I received this response from Diana Pohlman: "We heard from lots of parents and 600 innundated the producers email. We are following up with an email to the producers as well. Happily 20-20 is doing a great story on REAL TREATMENT mid May and that will be on ABC." NBC is the producer for Chicago Med.
  6. 2 points
    MomWithOCDSon

    Help....when to be admitted?

    Oh my, I'm so sorry! Your son's description of how he's feeling reminds me vividly of Susannah Cahalan's description of her own auto-immune illness in "Brain on Fire." She, too, experienced paranoia and some other symptoms that many traditional doctors would all too readily dismiss as solely psychiatric manifestations, dispensing with the underlying physical issues. If your son is a danger to himself or to others, you will need to get him immediate help; if that means the hospital, then it's the hospital. Unfortunately, I think it likely that you should expect to be met with some psychiatric interventions -- tranquilizers, at a minimum -- if he presents as agitated or full-on delusional at admissions. You may have reached a crossroads where the abx are insufficient for meeting his illness adequately. Can you get a PANDAS/PANS specialist on board? I know a number of families here have allowed short-term and periodic use of anti-psychotics or tranquilizers (Valium, Seroquel, etc.), just to get there kids calm enough to travel for help, and/or to give the kid and the whole family a break and some sleep. I'm not advocating that, necessarily, but you have to do what works in order to give your kid their best chance at a route which leads to the best healing. Hang in there. Hopefully, someone else will chime in with more direct experience that may resonate with your situation.
  7. 2 points
    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.
  8. 2 points
    Fiddlegrl -- Welcome to the forum, though I'm sorry for all you've been through and the issues you're still fighting. I will say that I've been with this forum for many years now...first during my DS's illness and healing, and then somewhat less frequently for the last few years, checking in to follow up on old friends and any new research, and to chime in when something resonates with my experience. Pretty much ALL of the symptoms you've described, unfortunately, have been discussed here as part of the PANs/PANDAs continuum. It stinks. I don't have any practical experience with respect to Lyme and its co-infections; my DS's syndrome was clearly strep-related, though seasonal allergies exacerbated inflammation and the immune response for a number of years, once the PANDAs had kicked into high gear. Like you, though, we believe his behavioral issues were tied to atypical strep infections potentially as young as 3 years of age, though certainly by the age of 6 when he was officially given an OCD diagnosis. But he never tested positive (via swab and culture) for strep at the time, and no local doctors would give us the time of day regarding PANDAs then, either, so he went without any real treatment until he hit 12. That's when the PANDAs brought him to an absolutely non-functional state, the research coming out of NIMH, Columbia and Dr. Cunningham had progressed, and we were finally able to talk someone into an antibiotic trial. It was a long road, but the rest, as they say, is now thankfully pretty much history. As a result of our experience, though, I do think it likely that PANDAS/PANs sufferers who are at a more advanced age before receiving immune and/or anti-inflammatory therapies may have a harder road with respect to healing and "bouncing back;" not sure if that's because the brain "wiring" has matured more in the interim, or if the chronic inflammatory and auto-immune responses in the body are somehow more entrenched and therefore harder to reverse. In the end, it took my DS about 5 years in total to return to pretty much full functionality, and that was with auto-immune, therapeutic and psychiatric interventions all thrown into the mix. He continues to contend with some OCD and situational anxiety now and again, and I'm not convinced that this will ever disappear completely. But those issues remain at manageable levels (knock on wood), and he's happy and healthy and constructive and functional. Pretty much all we could ask for, after what he went through. I'm not sure how to advise you on any possible next steps, really, except to suggest that perhaps exploring some additional genetic markers and methylation issues might help you for the long term? You mentioned genetic testing for porphyria, but did you get a full work-up? A search here on the forum for "methylation" and "mutations" will lead you to multiple discussions regarding the methylation cycle and how genetic testing has helped point some families to a regimen of supplements and/or medications that proved to be more effective for them in light of various mutations and genetic predispositions. Perhaps that's worth a try? Finding a well-versed LLMD and/or integrative physician who could be your partner in working through these issues would be a bonus. Your post was very well-written, so I'm picturing an intelligent, capable and fairly "together" young woman, so I sincerely hope you're finding moments of joy and contentment in your everyday life, despite this tremendous burden. All the best to you!
  9. 1 point
    maryangela

    Need to vent

    My heart breaks for you and your family. Since your DD’s onset is recent, there should be so much hope...if only the doctor’s weren’t working against you. What bloodwork did they run? Did they check for Mycoplasma Pneumonia? We spent years trying to find someone to evaluate our DS for PANDAS/PANS. Ultimately we used doctors that don’t accept our coverage or any coverage.
  10. 1 point
    kakrpa

    Need to vent

    I'm so sorry to hear of what your daughter and you all are going through - it sounds tough and incredibly frustrating. I won't say you're doing anything wrong as I think we are all doing the best we can given the circumstances. I truly feel for your daughter as I have dealt with those horrible OCD thoughts myself - I was dx PANS almost 5 yrs ago (young adult onset w severe anxiety that immediately took hold as the pureOCD subtype). It wasn't strep that triggered it for me either (my guess is it was brought on by the pneumonia I battled immediately before this illness). While I would typically second anyone refusing psych medications, I will tell you that I would not have made it to today without their help along w the help of a great psychiatrist. I guess I'm saying please don't shut the door on the potential for her to find some relief in even just one medicine, if it gets to that point. I know there are potential risks and benefits to each approach, just please keep an open mind. Have you heard of TRS by Coseva, before? I just placed an order this morning and would like hear from anyone who has tried this. If you haven't heard of it nor tried it give it a search. It's premise is interesting and I'm curious to see if it will help me. Btw, I am in no way advocating nor endorsing. Wishing you and your daughter the best. Please give her extra hugs as what she needs most right now is love and acceptance, and to know those thoughts are not HER THOUGHTS, but rather manifestations of the illness itself. They do not define her. She's likely very scared inside - it's hard to understand what's going on (even for an adult, let alone a child). (((Hugs)))
  11. 1 point
    maryangela

    Follow up blood work

    After suffering with OCD and intrusive thoughts for over 3 1/2 years, we finally were able to get a rheumatologist to prescribe a high dose of Augmentin for 30 days for our DS in 2016. During the 3 1/2 years we tried unsuccessfully to treat his symptoms with pharmaceutical meds. The doctor let us start the abx before his bloodwork came back, which ultimately showed normal Strep titers. She said we may continue the abx for the 30 days if we chose to. He had no response for the first ten days, but on day 11 or so his symptoms began to rapidly improve. Again, his bloodwork had come back normal. I think if the infection was too far in the past it doesn’t show up on the bloodwork, although the misfired antibodies continue to attack the brain. The Cunningham Panel is what got the PANS diagnosis for my DS. With PANS, there are 3 things to address: the infection, the inflammation and the immune response.
  12. 1 point
    maryangela

    New diagnosis

    My DS’s first major sudden onset of OCD at age 8, happened within 48 hours of dental work. The conventional psychiatrist he first saw said it was possibly triggered by the Nitrous Oxide. Apparently it can deplete vitamin B6 or B12 (can’t remember which). She threw that theory out the window after his labs showed no B Vitamin deficiencies. Years later, another PANDAS mom informed me that dental work is a common trigger for PANS/PANDAS. It can unleash hidden bacteria. Now my DS starts an antibiotic a few days before dental appointment (even cleaning), and continues for 2 weeks after appointment. I’ve been skipping the fluoride treatments for him. The dentist disagrees, but I don’t want to take any chances.
  13. 1 point
    bws1565

    New diagnosis

    We are having good success with homeopathic remedies. I've been to a homeopath 4 months ago. She put DD onto a annual program, with the remedies being changed about monthly. We are currently moving onto month 4, and thankfully seeing good results. This is not a quick fix though.
  14. 1 point
    I think it depends on your age. I have had two episodes of PANDAS in my life. First was when I was 11 years old. Sudden vocal repetitions of phrases when spoken to and lots of hand washing OCD. I was a happy, not anxious, middle schooler and I felt mostly normal - I just had these vocal tics and OCD. I went to school but made accommodations with my teachers not to call on me in class and my parents explained to my friends what was going on. This went away slowly with 6 months of antibiotics and I was in remission for 10 years. I went on to be a recruited division 1 athlete at a top 5 university and was happy, popular, and felt like the luckiest person in the world. I thought I was done with PANDAS. Now I am in my early 20s and battling a much stronger PANDAS/PANS relapse. I have no tics or OCD at all just debilitating social anxiety, depression and obsessive thoughts/worries (which are actually considered a form of OCD) that came out of nowhere three years ago and slowly built up in intensity until I had to leave college. This time around has been more challenging as Lyme and co-infections are involved and I haven't gotten better yet after a year of antibiotics. I think older PANDAS patients experience more amygdala-based inflammation (mood/anxiety issues) whereas kids experience more basal ganglia-based inflammation (tics/OCD). Just my two cents.
  15. 1 point
    h202

    Does PANDAS always have OCD and tics?

    We have a son who likely didn't have any significant tics or OCD relating to PANDAS. His primary symptoms are rages and increased hyperactivity. He had adhd symptoms from birth, but the rage and extreme hyperactivity came out of the blue when he was 6. He was always a quirky kid, but during the 6 months of his initial onset, many doctors and therapists and teachers suggested autism. After two months of abx and some trials of steroids, most of the problems had completely disappeared subject to periodic flares. Our situation is muddled by his pre-existing adhd diagnosis. He was already on adhd medication for his hyperactivity. It has been very hard to untangle four possible sources of behavior: (1) regular evolving behaviors of a 5-7 year old; (2) adhd; (3) pandas; or (4) adhd medication. Several months before he fell off the pandas cliff, he started having some increased problems in school. We increased his adhd medication. In hindsight he had a bunch of minor symptoms crop up between the time of increasing his adhd medication and his "pandas cliff" moment a few months later. Tics: Throat clearing, swallowing, sniffing, but usually only during concentrating on an activity. A significant increase in a complex stereotypy that he'd had since infancy. He developed a significant fear of spiders, bugs, hurricanes and sinkholes. But not serious enough fears that they interfered in daily life. In hindsight, we have no idea if all of this was pandas. Or caused by the adhd medication. It took almost a full year to tease out what symptoms came from what (and honestly, we are still working on it). The rages and increased hyperactivity went away on abx, so we are sure they are pandas. The fears mostly went away when we changed his adhd medication. The tics and stereotypy lingered. And then we stopped his adhd meds altogether over this xmas break, and both tics and stereotypy 90% disappeared. His pandas specialists never though the tic was from pandas - because he only did it when he worked on certain activities. And she never thought his fears were sufficient to count as pandas OCD, because they were pretty minor. She said that anecdotally she has seen a subset of pandas kids who don't exhibit classic pandas (ocd and anxiety) but instead show as more autism/stereotypy/hyper -- and that these kids are often adhd/autism-light kids to begin with. Which describes my son. Not sure if that helps your question.
  16. 1 point
    mdl

    Does PANDAS always have OCD and tics?

    For a long time we thought that our daughter had one of the rare cases of PANS without OCD until we figured out that her OCD just didn't look like the typical manifestations of OCD. Sometimes she would get stuck on something and not be able to let it go or she would be very negative about everything. She was actually having obsessive thoughts that fit an OCD pattern, but there usually were no particular compulsions that went with the obsessive thoughts. Later we also realized that there were obsessive thoughts underlying some of her behaviors and she just never articulated those thoughts. No one knew what was going on in her mind except her. Now that she's a bit older we have lots of conversations about what constitutes a normal worry and what is an obsessive thought and we have a window into her mind that has helped us to help her. I think it's also has been a relief to her. For a long time I read list after list of OCD symptoms in kids and nothing seemed to fit. I don't know if this is common for PANS/PANDAS kids, but her OCD didn't fit anything I read. She's doing much better now, but has some lingering symptoms that come and go, and it's only been more recently that we've seen some more straightforward OCD symptoms.
  17. 1 point
    When I was young, I used to take apart old computers, turn them on, and then watch what happened as I took my ground probe and touched different circuits. I could get all sorts of colorful patterns on the screen, but oddly, never the same pattern twice. I think PANDAS is a little like that. The immune system goes crazy and generally in a predictable way. But it's also different with everyone and even within the same person, it changes. I know my daughter has pandas, but right now, I wouldn't say that she is really OCD. She has been really bad in the past, but right now, it doesn't hamper us too much. To me, most mental issues come down to identity. If something in my daughter's day implies that she is stupid or fat, she gets super distressed, even suicidal, filled with rage, and then depression. This is tricky because kids aren't dumb. If you do too much for them, they think they are stupid and that can trigger a downward spiral. But, if you don't do enough, or imply that they need to do more, it can trigger that they are not loved, and BOOM. I think, because of the increased sensitivity because of the over-active brains stuff, destructive mental loops can be very harsh on these kids. I try to set rules that are "necessary" and be pretty lax on other stuff. My daughter likes to change clothes 10x a day, then complain there isn't anything to wear. Convincing she that wearing something twice, if worn for a short time is OK, has been tough, but laundry is once a week. She has to work within that. She doesn't like it, but she doesn't freak out anymore. I don't lie to my kid, but I think of things to say that can build her self esteem back up. Getting her to realize that she WILL get her feelings hurt and need to continue on has been tough. Just today, some off handed put down from her cyber school teacher had her in a tizzy for 15 minutes. But, it was only 15 minutes and not 6 hours (or even days) like it has been in the past. Suicidal feelings are actually confused survival instincts. When the consciousness feels like it has changed too much from what it was, or has been rejected by those it loves, it wants to hit the reset button, (assuming its self immortal (which is another discussion.)) So, the suicidal expressions can really require some quick reassurances that you still love them and even if this stuff is really crazy, you will always love them. It can seem like you are carrying a lot of their personal responsibility for self preservation, but having gone through this, that is something that you can teach later.
  18. 1 point
    I committed to feed results back as they trickle in, so here is one such result: For MTHFR A1298C (rs1801131), there were 70 sets of data: - 5 were homo for the risk allele (i.e., +/+) - 23 were heterzygous (+/-) - 42 of them did not have the risk allele at all (-/-) For MTHFR C677T (rs1801133), there were 71 sets of data: - 5 were homo for the risk allele (i.e., +/+) - 26 were heterzygous (+/-) - 40 of them did not have the risk allele at all (-/-) The first result above is a lower count of risk allele than the general population, and the 2nd is a little higher - but neither statistically significantly so, according to how we setup this analysis. Particularly together, the two of them are pretty much like the general population in terms of number of the risk alleles. I hope this result is not upsetting for any that feel these MTHFR SNPs are a significant player in PANS. Because it doesn't correlate wtih PANS doesn't mean that it isn't something of significance for your particular child. So far, we have only tabulated results like the above (how individual SNPs for these PANS kids fare against the general population). We are still wanting to look at other patterns of many SNPs together among the participants, which might show something statistically significant even if an individual SNP doesn't. It can also be the case that for a given individual, a certain combination of SNPs, including these MTHFR ones, work in a way together to affect the disorder. It is really hard to do either of those kinds of analysis with our genetic data though, so we'll see how our investigations of that works out.
  19. 1 point
    dave401

    PANS - trying to find similar case (DD17)

    I also got pans when I was 14 and I always got strep infections, what worked great for me was having my tonsils out , I haven’t got strep since then 12 years ago. If she’s constantly catching things I think it would help. Adenoids removed too
  20. 1 point
    We have not gone through similar, so can't comment too directly, only on your statement "...apparently in true PANDAS cases it [OCD] accelerates anxiety and vice-versa?" Well, I would say that OCD, if it starts more slowly in a PANS/PANDAS child, is somewhat calming at first, when it is not otherwise debilitating or noticed by others too much, because there is some satisfaction derived from "repeating it right" when they finally get there. But when it grows much more significant later (or for any person with severe OCD) the sufferer fairly quickly becomes exasperated with how debilitating it is, and sometimes satisfaction is eluded, and so of course that creates plenty of anxiety. So I think your statement is fully true for those with very quick onset of PANS/PANDAS, and eventually true for all. If you can get and afford the ivig, the potential benefits probably outweigh the risks (in my mind).
  21. 1 point
    gpookie

    will Normal return?

    I wish I had words of encouragement. What you described is exactly my husband. For 20 years since I met him, he exhibited odd behavior, zero executive function, cognitive deficits and arrogance and ODD through the roof. After I nearly had a nervous breakdown five years ago, he had some psych testing: extreme ADHD and NPD. However, with his 4 PANDAS kids ( 2 from a previous marriage), I had him tested for Lyme. Lit up like a xmas tree. Also PANDAS. His whole life is one drama to the next, yet he sees it all as something being done to HIM, while anyone he comes into contact with suffers. He is being treated for everything, but unfortunately with treatment for Lyme, Pandas, etc., those symtpoms have gotten better, and he regularly goes to therapy, but the NPD (arrogance, self focus, lack of empathy, etc.) Is increasing in leaps and bounds.
  22. 1 point
    Hitman3161

    IVIG at 25

    Thanks guys for your response. This is an unnerving time for me. Although, after the operation I was able to achieve complete symptomatic remission for 3-4 months and enjoyed a good period of health. I have responded positively to every treatment intervention so far. Positive response to abx, tonsillectomy etc. I understand that it may not work at my age, I have had a lot of social stress to deal with as well which has probably exacerbated the symptoms - I’ve dealt with social isolation for many years. I am going to trust my gut and go ahead with the treatment, I’ll keep you posted and updated for the benefit of others - as I’ll probably be one of the oldest to receive treatment and success would be highly reassuring for the rest of us adults. Thanks so much for your support. fingers crossed 🤞
  23. 1 point
    maryangela

    LD vs HD IVIG

    My DS 13 received 16 weekly LD (1/4 of HD) starting last November. It was extremely frustrating, because he would flare for 3-4 days, then start getting better, but would flare each time he had the treatment. In May of 2018 he had a HD. Huge improvement, which lasted about 6 weeks, then he began to decline. Had another HD two weeks ago. It was like magic. Immediate improvement. He will now receive monthly HD until the end of this year. Apparently, this is AE protocol. Could take 18 months. He is about 80% improved. His symptoms were severe.
  24. 1 point
    My son does not have Lyme, and the Ozone helped somewhat. The Cunningham Panel has become the standard lab used to show there is an autoimmune component to OCD and tic symptoms. Based on the results of the Cunningham Panel, my son’s doctor is treating him for autoimmune encephalitis. Do a Google search on Cunningham Panel or Cunningham Panel PANDAS. You can probably search within this forum also.
  25. 1 point
    I am so sorry you are going through a crisis period. Here’s what I can tell you from my experience...Two years ago, we finally found an MD willing to prescribe abx for my DS (now 13). His case was severe. 10 days into the 30-day high dose of Augmentin, be began to rapidly improve. It was nothing short of a miracle. Unfortunately, there was a 10-day gap between the 30-day high dose and the prophylactic dose, and he regressed, and were never able to recapture the success of the first abx. That summer my DS developed a yeast infection, and his symptoms escalated. He was out of his mind...hallucinations, new tics, aggression. For the past two years we have treated him for yeast. We use Gutpro, Saccharomyces Boulardii, and Candicid Forte. We have also tried rx yeast treatments (Nystatin). Had a scary experience with Diflucan, though. Currently my DS is not on abx. When he takes them, it’s always a matter of time before it impacts his liver function, and has to go off. He’s using an herbal antiviral, and he has had many IVIG treatments the past 15 months.
  26. 1 point
    MomWithOCDSon

    Disrespectful behavior

    I like "The Explosive Child," also, and while it's not specific to PANDAS, necessarily, one of the authors has worked with Dr. Swedo in her research at NIMH, so he's at least familiar with PANDAS presentations. I'm not sure it matters whether the disrespectful behavior is uncontrollable because of PANDAS, or if it's uncontrollable because your kid is so far out of his self-control that he can't stop himself from blurting out rude words or making rude gestures or whatever. I mean, yes, PANDAS can definitely mess with your executive functioning and make it more difficult to display age-appropriate behaviors. But most behavior of that kind comes from a lack of self-control, irrespective of the genesis of the lack of control. Either his brain is physically impacted so he acts out, or his "mind" is emotionally impacted so he acts out, the results are the same. And maybe the same tactics are applicable for the behaviors, as well. "The Explosive Child" has some great strategies you could try, but as I recall, pretty much all of them suggest that you de-escalate any unpleasant exchanges by dis-engaging, taking a few minutes to calm down and dial everything back, and then re-engaging again in a calm, controlled tone of voice and body language to resolve the dispute. Seems to me that could work whether PANDAS or non-PANDAS. I personally think that pretty much ALL non-age-appropriate behaviors (meltdowns, tantrums, etc.) our kids may display during this illness is at least partially -- if not wholly -- attributable to the illness. But then again most "normal" kids will test their limits during the natural course of growing up, too. So, in your shoes, I might ask myself, "Is this behavior I could expect to see out of a 'normal' XX year old?" If the answer is "yes," then maybe you deal with it as you would with any kid behaving that way. But if the answer is "no," I think you still address it, but maybe with a little extra compassion and patience, adding into the discussion something along the lines of, "I know that you're feeling especially out of sorts right now while we get the inflammation in your brain and the other PANDAS stuff under control, but you have to know that speaking/acting that way is still unacceptable. Let's try and brainstorm some things you could try instead of yelling at me/your dad next time you feel this way." My son hated being told he was not acting his age when he'd meltdown over something pretty minor or lose his patience in 0.2 seconds during his PANDAS. But I've got to be honest; I didn't do it to be cruel, but I felt like it was somewhat important that I hold a mirror up for him because I didn't want him to dig a deeper and deeper hole for himself socially. I wanted him to have some outside perspective as to how his meltdowns looked to his peers in the hopes that it would give him some incentive to work with me on some of the "Explosive Child" strategies for dialing things down so that he could "save himself" in some of those outside world situations. It was tough, and we weren't always successful. But I do think it helped him maintain some perspective, especially when he got out of that intense moment and could look at things a little less emotionally. All the best to you!
  27. 1 point
    maryangela

    Disrespectful behavior

    I recommend the book, “The Explosive Child”. It’s not PANDAS specific, but it definitely can apply.
  28. 1 point
    I'm a little late but have to respond because our symptoms change meant that we - who were experienced with PANDAS - completely missed the "after puberty relapse" for 2 years. Our son was diagnosed in 2010 or 11 at age 11. We, the parents found this and worked to show and educate his pediatrician about PANDAS. The symptoms at 11 years old were obvious - vocal and facial tics, tapping and counting, repetitive phrases and eventually only those phrases. But he was a happy ticcer. CBT did nothing as they said he was not anxious or depressed, but he had to do things his brain told him to do. We had this thing "licked" after a year of high dose abx. Flash forward to Spring and summer 2016 - my kid after sophomore year of college - top 5 school, national athlete - suddenly is so anxious he can't interact with high school students at a summer camp. He feels everyone is "putting him down" or "out to get him". Every interaction is stressful and eventually he would not leave the house. His personality changed 100%. He alternated between despair and optimism but often felt completely apathetic. He begged for help, kept saying "something is wrong - this is not normal" but to us the signs were invisible - no tics, no repetitions, nothing you could see. He talked to a counselor (no value). We never, ever thought PANDAS. There was no similarity to his previous diagnosis. However, his mental anguish was horrible and waxed and waned over the next two years until finally last June, after a case of strep that went untreated because he did not have a fever and was refused a swap test, he completely fell apart with intrusive thoughts and irrational behavior. Suddenly his dad said "this is completely irrational - it must be PANDAS" The ASo titers came back at 932, Cunningham Panel (now existed) was 3/5 positive. I'm telling you we had not forgotten about PANDAS but the second time looked so completely different we, who were looking, completely missed it. We're on it now but feel like he has suffered two extra years and we hope we are not too late.
  29. 1 point
    pinkoctober88

    Ketogenic Diet for Tics?

    Ive been researching the connection for the keto diet and tic disorders for a couple years now. I have chronic motor tic syndrome that stemmed from prescribed adderall use in college. Now that ive been keto for a couple years, the relationship is undeniable. I also cut out red40 and most other dyes, sugar, any simple carbs, and some dairy. The results are amazing and my tics are at bay for most of the day. If i have a cheat day,y tics start up immediately and can last for a couple days during my carb hangover.
  30. 1 point
    I have found it profoundly enlightening to read about some of the obsessions and what parents thought were associated to them. I know some of these things are pretty personal, but finding patterns and possible solutions can be very helpful. So, my DD is 10. She was diagnosed with Sensory Processing Disorder when she was about 3. My daughter was adopted at birth from my niece. We believe she was exposed to several drugs during pregnancy, and the father was a heavy user. She is "normal" from all first impressions, but she was obsessive about intense events. Like she might get hit by another child and she would not let it go for months. Then it was things like "a child threw up on the rug" and she would never sit on the rug again. But basically, it was very manageable and I that concerned. We had therapists for her for anything we thought she needed. She did seem to get sick easily. And she got strep, and pneumonia, even the H1N1 (we think all did) she started getting a little worst. She also have a couple of stays in the hospital for UTI's and blockages. She was diagnosed with gastro-paresis was one low doses of amoxicillin for motility from a very young age. Eventually that stopped working. So we went to an antihistamine called cyproheptadine. She is still on it. She has been on antibiotics several times, for ear infections, pneumonia, etc. She had blood work a couple of times and developed a phobia of needles. I had major heart surgery she was about 5 and that might have affected her. With the last time we needed blood work, she had a major panic attack, hyperventilating, etc. Mostly, her major obsession was with getting a fever. She needed me to check her forehead at least 2-4 times an hour, all day, every day. Then it was fear that she would throw up. Every 15 minutes she would say she was going to throw up. She got sick at Applebees about 3 years ago and everyday something reminded her that event. She didn't want to go out to eat because it reminded to her of that. Needless to say, we never went back to Applebees. Going from appointment to another would trigger major anxiety, but once there, she was fine. I started her on a powder probiotic, 5 billion, called Culturelle, about 3 weeks ago. She started having better days, but also somethings got worst. She seemed to get more fearful of others and their germs, but less about her forehead. But, she started playing for friends again. I started her on Renewed Life 30 billion, and her anxiety seemed to almost go away. But her ability to process her frustration also disappeared. One night she physically violent with us, the next day she attacked another student (her niece) in school for not getting out a seat she wanted. My Pro-Kids (Pro- 15) got here the next day and I stopped the Renewed Life and gave her the new Pro-Kids. Everything seemed to just settle and calm. She had a wonderful day. She went to her gymnastic lesson without complaint, she played with her niece, (got annoyed but worked through it) and went to the store with us without complaining. She kept saying how good she felt, her stomach didn't hurt. I began to question about things like, "did she feel spoiled" (a common one), did she feel anxious, (very common), was anything reminding her of Applebees, (very common) and she answered "no" to all it. She checked her forehead once today. Even though I'm pretty excited, I know this stuff is never really over. But, the idea that there is hope is strong with me.
  31. 1 point
    Annieo

    Paleo vs. Ketogenic

    I started eating a paleo diet about five years ago. It is a commitment in that you can't rely on easy, processed foods. Last summer I started eating a ketogenic diet. Both are do-able. The benefit for me is that aches and pains I've had my entire life are gone. The sinus headaches I suffered from almost daily are gone. In other words, the inflammation I experienced for years is gone. I have not tried the diet with my PANDAS child, but because of the way I eat, she eats far more healthfully than most of her peers. Her PANDAS symptoms are currently mild, although I honestly have no idea why. It's probably easier to try a paleo diet at first, and then if you want you can move to ketogenic.
  32. 1 point
    lordchallen

    Extreme behavior

    Maryangela I had my daughter on the "Renewed Life" (I think) and I noticed a couple of interesting things. Like her anxiety seemed to almost disappeared (compared her usual) and I was really excited. I was calling it her "rage" but I could tell it was her inability to cope with frustration. Like I told her "put it away" and she got mad. Then her older sister came and lectured her (I had left) and she got even more mad. All of this followed the school nurse grilling and interrogating her in the hallway. She couldn't process the frustration. She has had a "sensory processing disorder" diagnosis since she was 2. We are constantly trying to help her process things. This might be talking, tossing things, squeezing things, pro-prescriptive exercises, reflexology, etc. She is a good kid. She is very loving, kind, thoughtful, blah, blah, blah. But there times when she gets really mean, but then she feels really bad afterwards. But this last week, I totally see where a stomach imbalance can cause inappropriate behavior. MomWithOCDSon, Thank you so much for all of your insight. I have tried a couple of different probiotics. I am using the Pro-Kids (Pro-15) and she seems like a million bucks. They seemed to work almost instantly. She said she loves her probiotics, she hasn't had stomachache in 2 days. She is good. She is a little moody, but after everything that has happened I find it very acceptable. But not crazy. If she gets upsets with a friends, she just walks away and does something else. I am very excited, I just hope things continue in this trend. Thanks for everything and I will be around for more insight.
  33. 1 point
    bobh

    Can you help me solve this problem?

    I don't see a link to the page, but highly doubt that there is a valid conclusion that treatment for a year provides assurance of no relapse. Relapses are very common, and there have been trials of abx that document relapses or flares, even after a year of prophylactic doses. I hope this comment doesn't depress you further, but if so there is still hope. Our child improved dramatically with puberty - though not all do. I have found that the job becomes chasing all the triggers (including non-strep), as we don't seem to have a cure for the immune dysfunction, except possibly puberty.
  34. 1 point
    stateless

    Possibly PANDAS?

    Many years after posting, I'm checking through old accounts and thought this deserved a reply to give others hope. I notice that I had deleted my messages, but I just want to say that the very typical and rather full-on symptoms typically associate with PANDAS (OCD, inability to speak, eventual inability to walk) eventually went away, but it took a couple of years. He is absolutely fine now and I see this as fitting into how PANDAs can impact some children at a very specific time in their lives. The parents didn't ever get much help. 'Social services' for a while thought that he may have been mistreated (something I knew wasn't the case).. then the doctors switched to a diagnosis of Chronic Fatigue and never shifted from that. It really did appear to match PANDAS though and now he's fine and thriving and it all seems like a nightmare or a dream of old. It's in the past. I hope that others here, feeling desperate due to the condition and lack of help, reach the same place. Thanks.
  35. 1 point
    Have they checked for other autoimmune encephalitis like GAD65, potassium channel and the other limbic encephalitis? There are several variants. ADEM is another one. My coworkers son had developed that. I agrree with consulting with Dr. Najar. I hope they can figure it out soon. I will keep your daughter and your family in my prayers! Keep us posted.
  36. 1 point
    Cind

    Strep alters gut leading to inflammation

    The results obtained from this study suggest that streptococcal infections can alter gut microbial communities leading to a pro-inflammatory state in the gut by selecting for specific bacterial strains that are normally associated with gut inflammation and activation of the immune response (Figure 7). This condition is likely maintained in patients, even after the infection itself has resolved. Moreover, an altered GM composition could have indirect effects by reducing the production of metabolites involved in important brain functions such as SCFA, D-alanine and tyrosine metabolism, and the dopamine pathway. Thus, the GM composition may possibly influence behavior, as clinically observed in PANS/PANDAS patients. https://www.frontiersin.org/articles/10.3389/fmicb.2018.00675/full
  37. 1 point
    bobh

    GF diet helped, but then stopped. Input?

    That low-grade fever and red throat seems like a clue that what he could be fighting caused the flare - if the timing makes sense. A couple of days (and possibly longer) before those fever/throat symptoms could still explain a flare then.
  38. 1 point
    bobh

    Tonsillectomy and Adenoidectomy?

    Ok, here is a spreadsheet attached that includes a brief description of the tonsillectomy experience, and then a link (all but 3 to a thread here at ACN Latitudes) if you want to read more. (The hardest part of this was actually weeding out duplicate responses in different threads). tonsillectomy_results.xls
  39. 1 point
    MomWithOCDSon

    Antibiotics during flare question

    There are studies that speak to other properties of various antibiotics. For instance, beta-lactam antibiotics are thought to have glutamate-modulating properties, and another class (cephalasporins, maybe? my memory isn't what it used to be) are anti-inflammatory. And if your kid is taking Augmentin, for instance, that clavulanic acid component (Augmentin being amoxicillin plus clauvanate) is thought to have some neuro-protective characteristics of its own. There are multiple, older threads here about various antibiotic characteristics, and a Google search will give you some answers, too.
  40. 1 point
    Joyle

    Where to find Clerodendrum Inerme extract?

    Hi everyone, Yes, the plant Clerodendrum inerme does work to reduce tics and other comorbids very effectively. We have discovered it doesn't work for everyone but it has helped many. The Facebook group is called Natural Care for Tics and Tourettes. There are lengthy discussions there about this plant which we have nicknamed cleo. It can be taken as a green juice or in capsules after dehydrating and powdering the leaves or as a tincture or as a homeopathic remedy. The only restriction is you will need to source the plant and grow it in a pot or your own backyard. The safety profile of the plant is exemplary. Please also do your own research to satisfy yourselves .... there is a wealth of information about Clerodendrum inerme on the Internet. Kind regards, Joy
  41. 1 point
    We also had very severe separation anxiety as the first symptom. Then we got many others (physical as well as behavioral/psychological). During the first 2-3 months, while DS (age 10) was getting worse and worse we did 2x weekly CBT with lots of "homework" (exposures etc). It did absolutely nothing. In fact, I think the CBT had a very negative effect: permanently imprinting truly awful memories of his school in his brain (thankfully he is now back in school but there was no way he was going to go back to the school where this started; to this day, he won't set foot on that campus). I wish I had taken the energy we were putting into CBT (and then going to the psychiatrist for zoloft, also totally ineffective) and put it into medical treatment (abx, naproxen, steriods etc). Our son would never have gotten as sick as he did had we known sooner (like practically every PANDAS kid). It is very hard to know what to do, but if the antibiotics are not sufficient in bringing back your child (and unfortunately, that appears to be the case quite often) , then I would start pushing for a 5 day steriod burst. If there is a glimmer of hope with that burst, then you know it is not separation anxiety, but brain inflammation and you can pursue more medical treatment options more rapidly. As others above have said, CBT is a very useful tool. Just not for someone in a full flare of PANDAS/PANS. I think CBT can be very helpful after a child has started recovery and parents are trying to nudge them along to be able to do more and more. When we got to that stage, I had a thought along the lines of "oh, so this is what we should have been seeing with all that CBT." And unfortunately it seems CBT is a tool many parents continue to have to use when recovering from future additional flares along the way... Best of luck.
  42. 1 point
    lysia

    Do symptoms change after puberty?

    I am an adult female. I was never diagnosed with any mental illness as a child, as my parents addressed any psychological issues as solely behavioral problems to be disciplined. That being said, I suffered from very severe OCD symptoms that (I suspect) **might have been a result of PANDAS. [As this was never diagnosed nor treated, it is purely personal seculation based on the symptomology and relative timeline of exposure to streptococcus- I also share other speculations as to possible causes for the disorder, though mostly suspect the former.] I can say that for myself; the OCD began to dissipate very significantly after puberty and continued to do so over the years. I have no significant nor any life debilitating symptoms remaining of OCD whatsoever. The most debilitating and severe period of OCD that I had was between the ages of about (I think) 7-12. However, the habitual thought patterns that I had developed in my brain during that time (mind you with no counseling/medication or understanding of it as a disorder whatsoever) did take a significant amount of years to fully recover; therein many behaviors still remained. I say this because I do believe that it is highly possible that the neurophysiological OCD had in fact been mostly if not wholly eradicated during the pubescent period in which I would had been experiencing many hormonal and chemical changes in the brain possibly countering or overwhelming some others. (Again- this is much personal speculation.) Nonetheless, because OCD is what it is, I find it impossible to consider these behaviors would disappear at the same time. Gradually they did go away. I imagine then on came bigger problems of being a teenager and every little bit by bit the tics and compulsions and obsessions did dissipate. I was VERY secretive of rituals (tapping/counting/hoarding/maaany others) and did them in a way not to be seen. Because of this and that whatever my parents might had known was never pronounced to me as a "mental disorder", I credit my ignorance to having an actual illness in a way to having had allowed me to recover; as there was no stigma or added obsession (i was highly obsessed with everything) that I was handicapped with a psychological ailment. In a way, the denial around me helped. This is NOT to diminish that as a whole, however I suffered far more severely because of it. But it is worth noting i think that sometimes less attention may help with recovery. Overall of course, a child needs their mother so much, and for one with ocd- they really need their mom. I love my parents who did just as they felt best, but during that time (that to this day I remember SO well as being so truly horrifying for me), I didn't have that. I was so extremely confused, shameful, scared, and exhausted. And so incredibly isolated. I am so grateful pediatric illnessness like these are finally recognized and kids now can have amazing mothers like you who are on their side of the struggle with them rather than at the other end of it. No child should have to feel so shamed, scared, and alone. Illness, treatments, recoveries and even regressions are just as any other experiences and trials of life. They are part of each individuals journey into becoming the person they are meant to be. And children are (be them healthy/disabled/'normal'..whatever) absolutely beautiful and perfect every step of the way. This is what I wish my mother would had said to me. So i could have understood that I'm not my illness, but my strength to battle this is part of what makes me so incredible and builds my character into the fantastic person I am to become. (Of course- this and also 'lets see a psychiatrist and get treatment'), but all the same Sorry about the tangent! I came about writing this commenr ( now... memoir) in searching this subject in Google just now out of random curiosity while reflecting upon my past. When I saw your q, I felt I just had to respond with hope because my google search q was: "my pandas ocd gone after puberty". When I read this, I was so inspired by you and what you are doing for your child. Asking these questions, treating her, and being in the fight along side with her. I joined just so I could write this to you to thank you for what you are doing for her and to send the hope to u both that it absolutely goes away. I can only imagine how exhausting and challenging it could be for a parent. But can also know first hand how horrible it is to have the illness, and to go it alone as a kid is beyond awful. So that's it, really. BLESS you mom for taking care of your girl and it absolutely does get better, as I feel that indeed post pubescence changed everything. So yes- hope is there and she WILL recover. I had a fantastic time by high school being ocd free (mind you tendencies there but I feel this is a bit of personal brain wiring and takes lots of time and work . It was NOT like it was before puberty). Keep being the AMAZING kick mom you are. I'm so SO happy she has you. Just needed to respond. [[**As a side note: in respect to the other comment made by a parent in which i felt some ocd kids might be getting stigmatized by the illness and certain behaviors are being either dismissed or over addressed as psych symptoms when in fact they are either one of 2 things: an unrelated call for help or personal struggle environmentally that isn't to do with ocd, or otherwise just a very healthy response to stresses of puberty. I wanted to throw out the fact that nearly every pubescent child/young adult/teen are often incomprehensibly 'nuts by nature' too! Please consider it's a crazy time for them (thier brains, bodies, self identy, sense of life..) and the healthiest girl during puberty can be a total weirdo obsessive anxious nightmare of a kid too I wouldnt had wanted my parents to say to me it was the 'ocd' every time I acted out (either by way of empathizing/diminishing/ reprimanding or whatever) and I could be horrid at times. I fear it would had kept the obsession for me longer and I would had never believed I would be rid of it. . Maybe i would had even used it as an excuse to get away with bad behavior which would had also drawn self identity to ocd and inhibited recovery . A BIG part of breaking this very strong mental lock is to forget it whenever possible. And it is VERY hard to do, but a beautiful thing when it happens. And each instance builds into healing. Sometimes it is rare and fleeting. Sometimes it is overwhelmed by something else negative (like even some nutty teen drama being created). I would just hate a reminder if it wasn't on my brain already. So i say, if they are being teen brats and it is not 100% textbook symptomatic of OCD, then dont call them out on having a psychological illness, call them out for being brats! (Just my opinion)]]. Good luck to you and your amazing kid. You're really a hero to me. Truly. Much love.
  43. 1 point
    Hi, I've read several testimonies/blogs were essential oils cured PANS/PANDAS in children. Young Living Oils has the Raindrop technique with specific oils for autoimmune disorders. I reached out to PANDAS Hope for Healing twice last year and never got a response.
  44. 1 point
    Your child's Periodic Fever Syndrome as a toddler has me concerned there are other potential infections involved. Many of us found that although strep was an obvious trigger there were other underlying infections or viruses. Borrelia Miyamotoi is the more predominate TBI (tick born infection) in CA and is not testable via any standard Lyme test. Borrelia Miyamoti is also known to cause relapsing fevers. Here is a little blurb and you can google Borrelia Migamotoi Relapsing Fever for more references. Borrelia miyamotoi is a relapsing fever Borrelia group spirochete that is transmitted by the same hard-bodied (ixodid) tick species that transmit the agents of Lyme disease. Tick Study in CA: http://www.bayarealyme.org/about-lyme/what-causes-lyme-disease/borrelia-miyamotoi/ http://www.cdc.gov/ticks/miyamotoi.html I would highly recommend seeing an LLMD (Lyme Literate Dr.) that understands PANS/PANDAS to investigate further for your son. We have wonderful LLMDs in Northern CA that are very well versed in PANS and/or PANDAS if you are willing to travel. Please PM via the forum for referrals. Does your child have a known tick bite at any point in his life?
  45. 1 point
    I know this is an older topic, but the easiest way to get IVIG approved is to read your policy and to go with what your policy says. PANDAS/PANS is almost always excluded. Immunodeficiency is almost always included in some way, shape or form. Whether your son meets the guidelines and what dosage he will qualify for depends on what your policy says and what your doctor orders. It may well be if he qualifies under an immunodeficiency section of the policy that your doctor can get them to approve HD IVIG on the basis that he also has an underlying autoimmune condition that would contraindicate low dose IVIG. Most IVIG policy provisions are updated yearly and there should be a date on the written IVIG coverage provisions to ensure you are dealing with the latest one.
  46. 1 point
    Hi Everyone. I just had to sign up to this forum to let you all know that Clerodendrum inerme has dramatically helped my sons tics .It is truly a miracle plant! We live in South Africa and I sent my husband to India in 2012 to source the plant which now grows as a bush in our yard. My sons tics began at age 3 (started with eye blinking, shoulder shrugging, got worse and worse...etc.) After years of research and tears,our prayers to Allah were answered when I came across the study on Clerodendrum Inerme for tics. My son is 10 years old now. And a 'normal' little boy in every way.We dehydrate the leaves, grind them fine and put the powder into capsules . We used to liquidize the leaves with water and strain, but he could not handle the bitterness. Right from the first dose there was a major improvement. In the beginning I would give him the juice twice a week, then once a week , then once a month. He can now tolerate all kinds of foods that were once forbidden. He will have 2-3 capsules every 2-3 months or so when I notice he is stressed about something or has gone overboard on junk food. A day later and he is fine again. I promised that if the plant worked I would share this amazing information and I pray for all the children and parents that you derive benefit from it.
  47. 1 point
    MomWithOCDSon

    Looking for success stories

    Welcome to the forum, but sorry your family has been forced to deal with PANDAS/PANs. As you do some reading here, you'll find that our stories, including treatment protocols, can vary widely. What does seem to be a thru-line to some extent, however, are commonalities among behaviors that we see in our kids when they're sick. There's some commonality in response to various medications and supplements, too, but not always. Time frames vary dramatically, also; I have my suspicions that this variance has to do with age at diagnosis, length of time the child was suffering due to PANDAS/PANs but went incorrectly diagnosed prior to diagnosis and treatment, and similar temporal differences. My DS was diagnosed with "regular OCD" at age 6 and went through a second "flare" or exacerbation at about 7.5 years. We inquired about PANDAS with ped, therapist, and ultimately a psych as well but were told it wasn't "real," and since our DS was classically asymptomatic for strep, we couldn't demonstrate a link, either. So we treated with therapy and finally an SSRI (Lexapro) until he turned 12. At 12, he completely flipped out. Went from being fully functional, funny, social, academically gifted, to a basket case. Couldn't read, sleep, play, eat. Psych kept switching up psych meds . . . different doses, different formulas. Nothing worked, and he just got worse. "Saving Sammy" and subsequent email conversations with its author, Beth Maloney, turned our attention back to PANDAS/PANS, particularly since Sammy was classically asymptomatic also. Ultimately, we were able to prove some atypical immune response through blood tests, and our ped was, gratefully, willing to give us an abx trial. Based on Sammy's protocol and our DS's similarity to Sammy in terms of age, behavior set, etc., we began with Augmentin XR, 1,000 mg., twice daily. When I found this forum and connected with a number of other families and great minds who were deep into the latest research, helping their own families and others, too, we began to explore other supplements that could assist DS with respect to immune balance and behavior; we also found a PANDAS-literate psych and reduced his SSRI dose and changed the med, as well, to Zoloft. We looked into IVIG but did not pursue it for a number of reasons, not the least of which was DS was so positively responsive to abx, we didn't entirely see the need for another, more expensive intervention. DS was on the XR for nearly 2 years; we slowly weaned him off the last 4 months or so. He also continued on Zoloft and certain supplements we found seemed to help him on an ongoing basis: NAC, B6, zinc, quercitin, omegas and magnesium. We also kept him on probiotics (sach b. and a mixed flora) during the abx and for quite some time afterward. ERP therapy was also his constant companion, twice each week for the first year or so following his PANDAS dx, and then edging off slowly as we saw him gaining more traction over the OCD, and as we became more and more literate as parents in terms of helping him beat back the OCD at home, rather than accommodating it. He's now 17 and I consider him a success story. He can now maintain his health -- mental and physical -- even when exposed to strep. He's been off abx for nearly 3 years, though he continues on a low-dose SSRI. I've found a compounding vitamin supplier and have been able to order a custom blend multivitamin for him that contains the things we know help, and leaves out the components we've seen can have negative impacts for him. He is back to his functional self -- funny, fun, bright, in AP and honors classes in his senior year in high school, has friends, etc. He still contends with some OCD; whether or not that's because he was dealing with that for 6 years before we were successful in getting PANDAS intervention I can't say for sure, but that's what I suspect. His brain was being wired those 6 years, so undoing that will likely continue to take some time. I wish you all the best, and from our experience I will offer two key perspectives: 1) time is an important component in the healing process; and 2) don't ever give up!
  48. 1 point
    A new scale for parents to rate the severity of obsessive compulsive symptoms and 11 associated neuropsychiatric symptoms (i.e., anxiety, moodiness, sleep disturbance) is in the development phase and available for use. The current scale is based on the clinical experience of doctors Susan Swedo, Miroslav Kovacevic, Beth Latimer, and James Leckman, with the help of parents Diana Pohlman, Keith Moore, and others. Instructions to complete and score the scale are included throughout the document. ACN appreciates that Dr. James Leckman, Professor of Child Psychiatry, Psychiatry, Psychology and Pediatrics at Yale, has given us permission to share the scale here. We hope it will be helpful to parents. Click here to view and print the scale.
  49. 1 point
    dut

    vision zooming in/out

    Hi - my dd had something that may be similar... during an episode about a couple of years ago, when she went to bed she said that it looked as though I (lying on the bed with her) was miles away and she would look round the room and everything felt as though it was too far away. It would correct itself for a bit and then I and other things would be too far away again. It only happened at bedtime (which is a low point for her when things crop up that might not be evident at other times of the day). It went away after a couple of months. Both I and my sister get something which I believe to be similar but maybe not.... we get kinda proprioceptive changes of a sort. When we're tired sometimes, normally laying in bed at night, we feel as though one of our digits or sometimes a leg has grown to super enormous size. Not a bad but strange feeling, as though a thumb, say, has suddenly ballooned to 20 times it usual size. My dd's sight thingy felt as though it was along the same lines, a perception type issue rather than actual shifting in vision.... dunno... hope you work it out, good luck...
  50. 1 point
    Hi Claire, although we did food sensitivity testing when my son was young (4yo) and again after his TS diagnosis(10yo) and also specific food elimination when we were detoxing from candida(yeast), my son does NOT have any food allergies or sensitivities, other than to artificial ingredients. He showed only a slight reactivity to peanuts, but now seems to tolerate them just fine. He does however react big time to artificial sweeteners, colors, flavors, high fructose corn syrup, preservatives and MSG and so we totally avoid these.


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