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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
    Soo. I don't know what to think. I guess it was positive. The doctor we saw is a director of movement disorders at neurology department of National Children's hospital in DC and has 41 years of experience. I guess he's seen it all. He did neuro exam, said my baby is perfectly healthy. Said his tics are a 2 out of 10. He sees this every day all day. Said the next few weeks will be most interesting as they could start winding down and taper off. Said he didn't have a crystal ball and every child is different. But 15 percent of kids have tics. Said transient can definitely be both vocal and motor. Also mentioned they could go away and then rear it's ugly head in puberty. But at the end said 80 percent of kids with tics do not have them at age 18, which should be encouraging. I have a blood order for chemistry, cbc, thyroid and some other stuff. He said wait and watch approach is a way to go and would not medicate my baby( good) unless tics are very bothersome to HIM Said magnesium supplements are a good idea.
  10. 1 point
    Chemar

    Tics and use of essential oils?

    Just do remember that Essential Oils are concentrated and not all brands can be applied to the skin without use of a carrier oil. When used neat, one drop is totally enough! and even then it depends on the individual. Some people cannot tolerate all oils. ie they will react ok with one and very negatively with another. My son has always been that way. Just because something is natural doesn't always mean it doesn't have a potential for reactivity. We learned that the hard way and with much trial and error. It's the same with supplements....they are excellent and beneficial - but different people have different reactions.
  11. 1 point
    Have you done any probiotic treatment? Or tested for Candida albicans "yeast" overgrowth in the gut? I am not suggesting it will fully resolve your son's tics, but when we take antibiotics, they kill off all the "good" bacteria too and that can often create a favorable environment for Candida, which does cause tics in some people. Also, have you had your child evaluated by a NUCCA or Atlas Orthogonal chiro since the neck injury. They specialize in neck injuries and I do know of tics that have resolved after readjustment. Please note these are not regular chiros but highly specialized for cervical vertabrae readjustment of the neck.
  12. 1 point
    Stacie M

    Hand strength

    Oh this is so helpful! I will definitely be doing this tonight. Thank you!
  13. 1 point
    Hi Sunflower78--welcome to the Forums. You sound like a wonderful mom and all the efforts you have made to stay green, breastfeed and eat clean have no doubt helped your son. Please don't assume it was the vaccines or that you did anything wrong. Many, MANY kids have symptoms just like your boy. Sometimes they go away on their own, sometimes it takes extra steps to find the cause and then go from there. You are right that there is no way this could be considered Tourette's (Geez!). I apologize that I am out of town and have to get off the computer but will check in soon. Don't despair, there are lots of things that can be done to help your son. Others on the Forum can help also. Best wishes, Sheila
  14. 1 point
    We found the best B6 to use was the activated P-5-P form. European Union countries outlawed the food dyes and other dangerous additives a while back! Shocks me that this country hasn't especially as natural food dyes do the job well without the danger! (eg beets, blueberries etc.) M&Ms in England have these natural colourings so there is no real reason imo that they can;t use them here too!
  15. 1 point
    cmontgom

    Tics and use of essential oils?

    To add to my wife’s comments. The peanut butter and jelly we get is also all natural. Smuckers brand has all natural at Walmart and Jiff and Peter Pan peanut butter offers all natural options. We are Just fortunate our son loves peanut butter and jelly sandwiches and eats them every day at school for lunch. When he starts middle School we might be able to send things we make at home that he can heat up at school himself but we will cross that bridge when we get there. We also deal with the birthday parties and keeping him away from school foods. It’s hard. But we have told him he also has to do his part and stay away from foods he is not supposed to eat at school or at birthday parties. We tell him it’s not fair and we understand. But it is what it is. Sometimes he does eat these foods but eventually he knows the consequences and for a 9 year old he’s had to make very mature decisions on his own to say no which he mostly does now. We are very proud of him. What we have found since this started a little over a year ago is that his tics are inside him. We don’t know if they will ever fully go away or if he will outgrow them. Sometimes it stays dormant. Time will tell. What we do know for certain is that you have to look for the triggers that cause the tics to flare up. For us we know certain foods and ingredients are big triggers. So limiting or eliminating these foods, with the help of certain essential oils and his small dose of guanfacine medicine it really keeps his tics very low to unnoticeable. Like my wife said feel free to reach out to us any time and check back. We respond as quickly as we can each time. I hope this helps. Hang in there!
  16. 1 point
    MAMA3

    Tics and use of essential oils?

    Hope36, I am so glad you saw our post. We started noticing certain foods would make his tics more noticeable & more out of control. We started removing all processed meats, especially hotdogs & brawts. We found these always made his tics flare up. We also cut out pizza, except for gluten free. We don’t believe he has a gluten allergy. However, most gluten free foods are also more natural with no preservatives & additives, which we believe affect our son. We also never eat Chinese food because of the MSG in it. It makes his tics awful. I buy only breads that state no high fructose corn syrup & it doesn’t seem to bother our son. I buy Healthy Life whole wheat bread at Walmart & also Sara Lee brand has some bread that is labeled no high fructose corn syrup. If we buy sandwich meat, turkey or ham, I buy Oscar Mayer Natural. It will show no artificial ingredients & no nitrates, which are additives to preserve longer. Our son likes peanut butter & Jelly so he eats that at school & we send lightly salted Pringles & organic granola bars. We also send organic annie’s Chocolate chip cookies a few days a week. I have also found that Kraft Mac & cheese does not affect him since they’ve removed the preservatives, etc. The Kraft Mac n cheese bowls are easy too. We mainly stick to all fresh fruits & vegetables & we cook at home primarily so we know what is in his food. I know it’s overwhelming, but over time it won’t be. Mainly stick to fresh fruits & veggies. Also we use Young Living oils because they are more pure. You should be able to find a local contact who may sell them in your area. I hope this helps & we are always here! Hugs
  17. 1 point
    MAMA3

    Tics and use of essential oils?

    I know exactly what you are feeling. I spent day & night trying to find hope, trying to find anything to help our son. I was very sad, so scared & very angry some days. I prayed daily God would take it from him & give it to me. I didn’t want to talk to anyone about it either & I was extra protective of him. I was so thankful I found the post regarding oils. It gave us our son back emotionally. He struggled so much at school. I also had a talk with all the parents we knew from school. I explained to them what he was dealing with and asked them to talk to their kids(his close friends) & explain to them he can’t control it & how hard it was on him for everyone to constantly ask what was wrong with him. They stopped asking & they actually started watching out for him if someone was ugly too. The oils helped so much with his emotions & also helped him relax more at night. I recommend the lavender & peace and calming at night. The valor promotes courage & strength & along with stress away helps to relax him at school without making him sleepy. The vetiver helps to relax their brain/mind, again without making them tired. I also wanted to mention that we also tried the magnesium supplements, but stopped after his bloodwork showed he was not deficient on any vitamins/minerals. I know what you’re feeling & you’re not alone. I now tell our story on Facebook & have had people reach out to me also. I once felt like I shouldn’t talk about it & that no one would understand, but it helps so much to reach out like you have. We need to educate each other & share our stories & show others that there are more natural approaches. As my husband mentioned earlier, I also recommend you meet with a neurologist just to get clarification. We had bloodwork to make sure he was not missing key vitamins & minerals. The Guanfacine tablet does make a difference. Our son is proof that it is possible to have tics & still have a happy, normal life. I am here if you need anything, or have any questions.
  18. 1 point
    Robinhubb

    Need to vent

    Yes we just used a doctor thst didnt use my insurance...he just ran strep teiter thats it. Called my kid crazy and left. Im not totally against phych drugs but thats what drs immediately put her on because they dont know whats wrong. Frustrating!!!!! Ty so much. I know we will get thru but being in the storm is always rough
  19. 1 point
    ejh

    Follow up blood work

    Bloodwork being normal is not unusual as far as I know. And does not mean that it is not an immune problem. Have you talked to a PANS/PANDAS specialist?
  20. 1 point
    maryangela

    New diagnosis

    I know. It is so overwhelming. Let me know if you start the Oil of Oregano. If I recall we saw an improvement within a week with a high dose of Oil of Wild Oregano.
  21. 1 point
    bws1565

    New diagnosis

    I watched a documentary this winter called "Healing From Vaccines" . It was available online for free while running but you might be able to get it still. That gave me the final push to do homeopathy. I believe my DD's problems are vaccine related too although I cannot prove it. Her issues were executive function related, which are very painful for a bright kid like she is. And she did have intrusive thoughts at one point too.... I have stopped vaccinating about 7 years ago, although I was coerced into giving the MMR due to the outbreak in NYC. And YES I have seen reactions. And now we have lost the religious exemption here..... I will not put my younger kids at risk; looking at my options. I would advise you to stay away from ALL vaccines for your entire family. Perhaps have this reaction reported to VAERS, or at least put into her file. Risk of a flu or even measles is just not worth what we are going through. To quote, "It takes a of a lot of money to get rid of what a free vaccine did".
  22. 1 point
    bigmighty

    New diagnosis

    Are you doing anything anti-inflammatory? Try ibuprofen 3x a day for a week and see if it helps. Or try turmeric 2x a day. If she does even slightly better while inflammation is reduced, it's helpful to know, as it suggests something autoimmune is involved. Steroid tapers have helped my son several times. If you can convince a doc to prescribe them for a couple of weeks, that may be something worth pursuing. So sorry you are going through this. Sending virtual hugs.
  23. 1 point
    cmac

    Follow up with doctor

    I’m so sorry you’re dealing with this—it’s heartbreaking and overwhelming. My now 8 year old son was diagnosed last August—his triggers were strep and myco p. He was on daily antibiotics for months —several different ones and combo ones too—before we started to see improvement. He battled anxiety and OCD—rituals and intrusive thoughts. Has she been tested for myco p? I know you said you’re in TX—maybe a PANDAS doc could do a phone consult with you and order blood tests that your local pediatrician could do? And unfortunately most of the PANDAS specialists don’t take insurance and do cost a fortune! Oh, and not sure if this really helped or just coincided with him getting better, but cutting out gluten and dairy seemed to make a difference. They both can inflame the body and since PANS/PANDAS is an autoimmune disorder it makes sense. As it was explained to me the problem is two fold—getting rid of the infection and bringing down the inflammation. Also does she seem to get any relief from Motrin? That can help with inflammation too. Good luck. You will get through this.
  24. 1 point
    maryangela

    New diagnosis

    Let me know how the CBD oil works. There is also a supplement called NAC that we had some success with. There was a Yale clinical trial for OCD with NAC. You may want to ask her new doctor about it. The dose for the clinical trial was 900mg 3x a day. My son stopped taking it a few months ago, because he was tired of taking supplements, but recently said he wants to start it up again. It’s easy to find...Whole Foods, etc.
  25. 1 point
    I agree that antibiotics will not completely eradicate PANDAS. I made the mistake of thinking they would 12 years ago. I had PANDAS back in 2007 when I was 11 years old. Did 8 months of penicillin and my symptoms completely disappeared for 10 years. Once I was in college they came roaring back and I am having a lot more difficulty recovering this time around. So no. Antibiotics are a temporary solution. You can get rid of strep with them but with another exposure your immune system still will create autoantibodies that will attack your brain if not dealt with promptly. Don't make my mistake - do the IVIG even after you feel better from antibiotics to retrain your immune system so future strep infections will be significantly less likely to trigger the autoimmune mess and PANDAS.
  26. 1 point
    Chemar

    Possible PANS/PANDAS or Tourette's

    Hi there I just wanted to welcome you to the forum tho sorry for your child's struggles. Hopefully parents more knowledgeable than me re PANS/PANDAS will soon reply, but my understanding is that Tourette Syndrome and PANDAS are not mutually exclusive, and that yes, some kids are dx TS when in fact it is PANS
  27. 1 point
    mmw

    Does PANDAS always have OCD and tics?

    When my son was young we thought he was very sensitive and had a difficult temperament. He eventually did get tics, hallucinations, you name it every time he had strep but before that he was just a VERY difficult child when it turned out he had strep. Like having to be physically pulled out of the car at preschool. He never quite seemed to know how to act either- lots of social issues. We treated with abx for years and did Brain Balance and all of his aspie symptoms went away. When he did have an episode of rage it turned out his younger sister had a simmering strep infection. He is now 18, totally healed, sweetest and the most laid back guy you would ever hope to meet. It was the PANDAS. It is gone .
  28. 1 point
    Ibuprofen (aka advil, motrin) is for some (not all) a "resuce med" in a flare (you can't keep giving it indefinitely). It is definitely the case that some abx work and others not, and it varies from kid to kid and (likely?) by particular sickness for a child.. Haven't had the vomiting experience, but have had our fair share of mystery stomach aches. I have no experience with Colorado docs - am far away.
  29. 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
  30. 1 point
    mamafour

    Information about Plasma Exchange

    Our daughter was treated with plasmapheresis in 2017. She has pandas/Pans but not Lyme (we think?). She was typically treated adequately with antibiotics but for whatever reason we couldn’t get that one flare under control with abx or prednisone, so we went looking for ivig. .. The immunologist we found had more success in his patients with plasmapheresis than ivig. Our daughter’s symptoms were severe at this point. It is also often easier to get insurance coverage for plasmapheresis than ivig, which is curious to me. For all these reasons, we went with plasmapheresis, and would do it again in a heartbeat. I cannot express how life-changing it was. (Two years out we may be needing it again, and if we do, I will be nothing but optimistic going into it.) We are in VA so I don’t think I can help as far as who can treat near you. However, don’t take the “it’s impossible to get in CA” and just give up.... start making phone calls. Call area hospitals and ask if they do plasmapheresis at ALL, regardless of reason. Ask which immunologists order it. Work backwards from there. You are at an advantage because of your son’s age, as the issue is often finding an apheresis unit with the capability of treating a peds patient. Your son is not a peds patient so you already don’t have that barrier! I do not have experience with Lyme related to plasmapheresis. Also don’t take the “insurance won’t cover” without checking your plan on your own. You can call and ask if the cpt code is covered (I don’t have it in front of me but could find it) and whether it needs preauth. Don’t give up. Hope I helped or at least gave hope. Good luck.
  31. 1 point
    jmmorgan44

    Tics and use of essential oils?

    Hi Chris - I just wanted to thank you for your post. My husband and I are going through something similar. Our 7 year old son was recently diagnosed with transient tic disorder. His tics are eye rolls and head twitches. While we are still very early on in this process and continue to learn more and more each day, it was frustrating to leave our appointment with our neurologist last week with no recommendation of what we could do to help our son. I've been doing some research on some more holistic approaches we can take, and was so glad to see your post and read up on what's been helping your family. I hope your success continues - this post gave me a lot of hope!
  32. 1 point
    evemac

    Tics or tourettes

    I know it's hard not to despair, but my son who is now 14 was diagnosed when you was 5. We did so much for him: diet/vitamin protocol, Occupational therapy, chiropractic work, meds, CBIT, and I would say to some extent, all of these interventions helped. He feels pretty comfortable talking about having Tourettes and while he did have some difficulty with peers on occasion and I had to actually request a 504 by 8th grade to deal with the dysgraphia, I also give his teachers a well written article on disinhibition and what that could look like in class. I think advocacy and self-advocacy is important to our children with TS. Unfortunately, people still don't really understand it but the best news is is my son has gone through this and is a strong academic and athlete and what's even more important than that is that he likes who he is! Keep up the good fight. I remember crying at night with him when he was ticcing so hard he couldn't sleep. I have been there! You are not alone! Eve
  33. 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).
  34. 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.
  35. 1 point
    Chemar

    Detox besides epsom salt bath?

    Chinese cupping is also used for detox, and there are other detox herbal & juice remedies and treatments available. Drinking warm fresh lemon juice water is one of the simplest (hot water with juice of a small lemon or 1/2 large one) Add a spoon or 2 of honey if needed, but plain is best imo
  36. 1 point
    edsonr

    My Sons tics, sharing our story

    Hello I just wanted to share my story, and maybe it will help others. I'll try keep this focused and straight to the point. My son started his "noticeable" tics on Christmas eve 2017. Pediatrician said it's command and would go away, just not sure when. I started to get more and more concerned as frequency increased, at times it would be several times a minute. He had motor tics with his arms, then later shoulder shrugs, then neck turning, and facial tic (that we thought were just too much screen time). No vocal tics noticed. He had a bad diet being a bit picky, and would eat lots of candy, he would also get lots of tablet time. I had my share of sleepless nights thinking and worrying about him. I tipped off about the book "Natural Treatments for Tics and Tourettes..."..and that book, lifted my spirits, inspired me, gave me hope, and energized me to help my son. Here's what I implemented at home: (mind you, the night before I started making changes, he was sick with a fever and tic'ing restlessly) Bought magnesium gummies to give him Bought fish oil Cut the high fructose out of the diet started removing artificial flavors and colors cut down on screen time When he was sick for about a 8 day stretch, I started the plan above. He already hadn't been eating much since being sick, but we I started giving him magnesium supplement. He probably had magnesium supplement for about 6 days then he got better. We noticed immediate turnaround, for a good few days I didn't see 1 motor tic, which was going from several times a minute to maybe 1 all day. Just seeing it stop for 1 full day, confirmed to me that there is something we can do despite what the dr's say. We started to be more conciseness about what we feed our kids, and tried to get more nutrients in them. I had to explain to the both kids, that we all need to eat healthier, so we need to stop eating stuff that's bad for us. My son was all in, he always asks now if a certain food is healthy. About 2 months into being more healthy his motor tics were probably 90% gone, but he still had some facial tics. The crazy thing is even though he made great progress, just seeing a tic here and there could still sink my spirits. Thinking about his bad diet and him not being regular with his stool, got me thinking he may have leaky gut and that maybe he's not absorbing nutrients well. I know the battle may not be over yet, but I'm happy to report that he hasn't had a motor tic that i've seen in about 2 weeks, and the last week have not noticed many facial tics. This week he's also been more regular, going #2 every other day (previously it was 1-2 per week). What we're are currently doing: Supplements: Smarty Pants Multi (whch has omega 3) Smart Calm Magnesium gummies (they loooove, the taste of this one) Fiber gummy probiotic gummy Eating / Food: No High Fructose No Artificial Flavors No Artificial Colors Fruit / Veg smoothies Buy Organic when we can Cut down on fast food - there was a happy meal or 2 in the last 2 months Candy is not an everyday thing, special occasions and rewards Other: Cut down screen More board games Playing outside I still allow them to have candy here and there, but nothing like before. I just still want them to enjoy being a kid, so even at birthday parties, I'll let them splurge. I hope someone can takeaway something from my post, I know reading posts from others often lifted my spirits while I was going through some hard times with my childs tics. Feel free to ask me questions.....
  37. 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.
  38. 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.
  39. 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.
  40. 1 point
    rhyanen

    Delusions

    When my 17yo ds is in a flare, his predominant symptom is psychosis. He will have minor auditory hallucinations as well which seem more sensory related. He will become paranoid and fear that someone is going to break into the home and kill him....whether that be the government, someone he knows or even my husband. He'll also think the killer is sending secret messages to him through media online or see certain symbols. I'll spend nights with him calming him down. It's a nightmare to say the least. I'd take the tics and OCD again like in the past over this. He also has Lyme so it's ard to tell if it's coming from the PANS or the Lyme.
  41. 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
  42. 1 point
    To a great extent, the medical science is beyond me. But as a recall, the actual magnitude of the titer count (whether anti-dnase-b or ASO) matters as some "highs" are, in the end, essentially statistically insignificant while others are truly indicative of something amiss. My recollection is that the anti-dnase-b titer test measures a strep infection exposure that was at least 4 to 6 weeks in the past; if your son's exposure was 3+ months ago, then the fact that his titer level is still "high" by his doctor's standards would suggest that, potentially, some molecular mimicry has taken place in which the strep has exchanged some molecular material with body tissue, tricking the immune system to continue to produce antibodies to attack the "invader" which is actually "self." This is my simplistic understanding of what can happen in this autoimmune condition. For the "devil's advocate" view and some decidedly more scientific responses on these topics, I would drop "anti-dnase-b" and/or "molecular mimicry" into the forum search box and then thumb through the resulting topic threads. These topics have been discussed in some detail during previous years here, but it's been a while. And it's fairly complex, at least for someone like me. But there is a wealth of information here, if you have the time and inclination to dig through it! Good luck!
  43. 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.
  44. 1 point
    puzzledguy

    New Blog!

    I've just started this blog. Feel free to follow it, and please pass it on to your adult children with PANS/PANDAS/Lyme! https://twiceapart.wordpress.com/
  45. 1 point
    Sheila

    will these tics ever go away?

    Hi mlee, and welcome to the forums. I'm sorry that your son has been having some tics. Seeking help from a good naturopathic doctor is a great step to take. I hope you will let us know what foods come up as problematic. That should give you some good direction. You can also ask this person for suggestions on nutrient supplements. Charting is also a terrific step, though I know it can seem overwhelming, as you say. It will get easier with time. Keep it up--but also, only take on as much as you can without stressing yourself too much. If your son has a problem with gluten-- and not everyone with tics does -- it can take some time for improvement to be seen. I would give it a couple of weeks, and even then do not expect a dramatic change immediately as it can be a gradual change, and there may be other issues going on as well. Our organization has a new book out on tracking down triggers for tics. You might find it useful. Also, I think it would encourage you, because you asked if people are able to get the tics under control, and yes, many do and some of their accounts are in this book. But it can take a comprehensive effort, not just one or two things that usually bring about all the change. Have you already had a chance to make other changes in the diet like avoiding artificial colors, flavors and preservatives in food and drink? What we have found is that a three-pronged approach can often help: 1) dietary change, 2) avoiding allergens (is your child or immediate family allergic?) and 3) avoiding toxic products typically used in the home like bleach, scented products, pesticides. In addition to the above, you want to be sure there is not an underlying infection. Please get back to us and let us know a little more and also what the naturopath suggests about the food testing. And you should definitely have hope! You have already taken some very positive steps.
  46. 1 point
    There are a few things to consider in this situation. First, how much GABA is he getting and when do you give it to him? Is he also on Theanine (it helps produce GABA)? Too much GABA can actually be converted back to glutamate, increasing that fight or flight response. You would see a jumpier, more anxious and fearful child in that case. You can try giving him GABA just once after dinner (and not in the morning). Second, are you doing anything to help him detox and excrete what the antibiotics are killing? If not, he likely needs kidney and liver support to start and perhaps something to help detox the brain. We use a homeopathic called Drainage Tone for brain detox. It really helps. We get it from our chiropractor or our doctor. Finally, when you start killing bacteria with the antibiotics, often yeast is released too (it hides in the cells with the bacteria and viruses). So, look for signs of a yeast flare. Perhaps treat with an anti-fungal like Nystatin or Lauricidin. Makes sure he drinks lots of water, give him epsom salt baths to help with detox, and, if you have access, a dry sauna. Hope some of these suggestions help.
  47. 1 point
    I am so sorry to hear about your struggles. Have your symptoms changed since you started the abx (antibiotic)? I don't have any experience with adult PANDAS, but can easily imagine that what we see in children can easily translate to what you are describe as an adult. If your symptoms did get worse since the abx started, search "herx" with the dialogue box in the top right corner, once you are in this group (rather than the entire site, or just a thread). That will give you a bunch of hits on experiences of getting worse before getting better on abx. Descriptions of herx are usually dramatic, but that might be because only the most dramatic reactions are noted and reported - there may very well be such a thing as a slow, drawn-out herx.
  48. 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
  49. 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
  50. 1 point
    Thanks so much for the offer of help. I hadn't thought of mold and our old house had mold in their rooms (we moved 2 months ago). If you could send me the links to that information I would so appreciate it. My younger daughter had been test d for Lyme but it was negative. She had a condition that included low fevers, stomach pain, headaches, light sensitivity, and pain in her legs, so much so that she couldn't walk for over 14 months. Every 6 weeks or so something else would go wrong and it was truly awful. Especially because no one could/would help her. They just said it's not_____, and then I'd get a referral to the next doctor. Hence me totally ingoring my older daughter's beginning problems. The mold question gives me another avenue to pursue. Thanks


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