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  1. 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.
  2. 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.
  3. 1 point
    Yes, all the info I could find is on thimerosal. I always declined flu shots . He never had one. He had a good day today, fishing and playing. I'm still a mess, but at least I sleep better now. Our neuro appointment is on Thursday. I agree, from what I read on here, many neurologists are not so good and push meds right away. I made appointments with 3 different pedi neuros at 3 different places.( husband thinks overkill, but at least I feel like I am doing all I can to find the best one). I will let you guys know, what he says. Thank you so much for checking on us!!! ❤
  4. 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.
  5. 1 point
    I have past positive test results for Lyme, Bartonella, Babesia, Relapsing Fever (B. Hermsii), Rickettsia. I spent the past year treating these infections with antibiotics and herbals and two IVIGs. I have never had any physical symptoms of the above whatsoever, in fact I have managed to stay very fit and workout 5 days per week throughout most of my treatment. All my symptoms are psychiatric PANDAS/PANS-like (24/7 extreme social anxiety, depression, obsessive thoughts/worries). Whenever I have treated any of my Lyme, co-infections and candida, I get a significant increase in my PANS symptoms along with some fatigue (never physical pain). I also don't really feel I ever improve with detoxing (epsom bath, alka seltzer gold, detox supplements, etc.). I have alway been under the impression that this is a herx, but I came across this article and thought it would be relevant to share: http://lymemd.blogspot.com/2017/08/autoimmune-encephalitis-and-lyme.html Based on this, "herxing" that lasts weeks on weeks and months on months and doesn't improve or change isn't actually herxing. It is continual triggering of the autoimmune response which is not helpful or beneficial at all. I was always under the impression that my feeling worse with increased PANS symptoms was the Lyme/co-infections dying off. Now I am thinking that all of that "herxing" may not have been necessary. Chances are, even though I have/had these infections present (and as we know you should treat infections BEFORE immune therapy/IVIG/PEX), my immune system was strong enough to hold them at bay and my only issue was the PANS autoimmune component. I hope this may be helpful for other people who have been in the same predicament as I was and if anyone has any insight on this I'd much appreciate it. Is my thought process above correct? Having just finished 7 sessions of plasma exchange, I am about to embark on 6 months of monthly IVIG and my plan is to avoid stirring the pot and re-triggering any autoimmune response while my body adapts to the IVIGs. For me, this is looking like using Buhner's more gentle approach to keep any remaining Lyme/co-infections in check without triggering my immune system into reacting and exacerbating my PANS symptoms. It has been a miserable road for me, especially in my early 20s when the rest of my friends have moved on and finished college and started their lives. I have yet to see any improvement and it has been 3 weeks since PEX. Only way to go is forward.
  6. 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
  7. 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!
  8. 1 point
    Yes, chlorine was a major tic trigger for my son! Even though it didn't show in his list of actual allergies, more detailed testing showed he was very very sensitive to it, as to many other chemicals. Later testing confirmed he has MCS (Multiple Chemical Sensitivity) which is why both environmental and food additive chemicals impact him so intensely, including chemical perfumed/fragranced items etc I found some excellent online resources over the years to make my own household products, and always select fragrance free/dye free options for laundry, toiletries etc and of course no artificial food dyes or other artificial food additives.
  9. 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!
  10. 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
  11. 1 point
    maryangela

    Is this pandas

    We found 3 doctors in Illinois that immediately (after seeing bloodwork) recognized this as PANDAS and/or Autoimmune Encephalitis). Unfortunately none accepted DS medical coverage. The first said that if we could not get insurance to pay for IVIG, we needed to “beg, borrow or steal” to get it, or he would be institutionalized. By this time we had already gone through our savings (including retirement savings) due to unpaid time off and unpaid medical expenses. We used crowd funding to pay for first IVIG. We saw immediate improvement, but it was not lasting. We stopped seeing first two PANDAS MDs, mostly due to location, cost and accessibility. Third MD ordered Cunningham Panel and was able to get IVIG covered under AE. Although this doctor does not take DS insurance, IVIG is considered a prescription and it is covered. I sometimes see on these posts that a child may only need 1 or 2 IVIGs. This was not the case for my DS (possibly because the illness went untreated for so many years). For your daughter, 1 or 2 may work. Read the book “Saving Sammy”. Beth Maloney’s son was cured with antibiotics alone, but again his illness went untreated for maybe a year or so. I think that’s what makes the difference. I believe it’s important to find a doctor experienced in PANDAS/PANS, not just someone who is open to the possibility and willing to give you antibiotics for a period of time.
  12. 1 point
    maryangela

    Need to vent

    I know that “inexpensive” supplements can add up, but we also used 5-HTP for our DS. It was recommended by an otherwise unhelpful psychiatrist. This was when DS was at crisis level. Need to use on empty stomach. I was able to get DS to and from bloodwork appointment on public transportation because of the 5-HTP. I don’t recall why we stopped using it. This was in 2016. I believed we stopped a couple months later when we finally found a doctor to prescribe high dose of Augmentin. What form is your Oil of Oregano? Again, we saw improvement, but used a high dose. 15 drops of undiluted 5x a day (mixed with orange juice). Something else we use as antibacterial and anti inflammatory is tea made from ginger root. I grate a hunk of ginger root and steep it in boiling water, then strain. It’s pretty spicy, but we like it. We’ve been chilling it and using as an alternative to unsweetened iced tea. At the risk of bombarding you with information, those were a few things I thought of.
  13. 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
  14. 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.
  15. 1 point
    prestopony

    Supplements

    I'm sorry you're having trouble getting a doc to help, it's so frustrating. This board was so helpful to me. Like many kids, my 15 year old daughter was diagnosed with PANS after many years of suffering. She is on a lot of supplements, so it's hard to know which ones are really successful! We use: Enhansa for inflammation - follow the guidelines for slow introduction, we noticed a big herx as is said might happen. For anxiety, we use CDB oil and Lithium oratate. Her 23 and me showed folate issues, so she takes Methyl Assist. Magnesium Citrate along with Buffered Vitamin C for constipation (as needed, which used to be all the time at the beginning of treatment!) - I can't stress enough the brain/gut connection to think about during treatment. She takes Thera-lac probiotic too And Super Lysine Plus for immunity support. To balance out the stress of so many years of anxiety and poor sleep we use Cortisol Manger, and Seriphos - I think these are at the bottom of the list of what I think has really been helpful though And, she is on the low-FODMAP diet Upon initial diagnoses, her PANS doc put her on Augmentin which was amazing. Came off of it, flared, tried Zithromicin, didn't work, went back on another month of Augementin, came off of it, and stayed well. During flares, unless her bloodwork shows something, we use a month of Naproxen (regular over-the-counter Aleve) - and it works beautifully. So, treating the inflammation seems to be key during flares. I would think also that a too-short supply of antibiotics is not going to help. Now, my son, who does not have PANS that I know of, but is suddenly dealing with extreme intrusive thoughts and OCD (my daughter's was just EXTREME separation anxiety and EXTREME generalized anxiety) I'm taking what I know about inflammation and scouring this board for help - and trying some things with him: NAC - an amino acid that has had some documented success helping OCD in larger doses L-Theanine - another amino acid that promotes relaxation and calms the brain and elevates GABA and serotonin I just started him on Enhansa last week. Reason being we just found out that he's allergic to EVERYTHING - grass, trees, weeds, mold, dust, cats, chickens (we have eight), dogs (we have three) guinea pigs (we have two). So he has started allergy shots, but in the meantime I can only think that there is inflammation in him from all of these undetected allergies. His probiotic is called Mood-Super strains - with strains that are geared specifically towards anxiety and depression I just learned about this product yesterday from my sister-in-law. My son's cousin, who has OCD, takes 5-htp (another amino acid) and he says it helps a great deal. She uses the Natrol brand. He does not take any pharma for his OCD/anxiety, and said when he stopped taking the 5-htp he noticed he felt a lot worse, so he now takes it again. As far as pharma for my daughter for her anxiety, we held out as long as we could, but she became unsafe and jumped out of a moving car. So we eventually we put her on an SSRI - it worked a bit, but never really well, so we switched to another, it also worked a bit but never really well, so we added in another, which, as expected, worked a bit, but never really well. Fast forward to a year after PANS diagnoses, and this truckload of supplement she takes!, she is off of all pharma, she took a class at the local high-school (and I didn't have to sit in the class with her, lol!), she now sleeps over at friends houses, and is enrolled in the Community College for the fall. So while the psych meds helped a bit, they were not the final answer for us. Sending you good thoughts for your daughter - and lots of good thoughts for you too! Hang in there mom!
  16. 1 point
    SuzanneR

    Follow up blood work

    Are you located in Houston? I ask because I saw you mention Katy and I live in Houston. I have a 22-year-old daughter with PANDAS. It took me 12 years to get her diagnosed. Have you heard of the Cunningham Panel? Look it up on google. That’s how we finally got a diagnosis.
  17. 1 point
    cmac

    New diagnosis

    My son had a major flare this past February after a dental cleaning and two teeth falling out/then almost immediately the adult teeth came through. It lasted several weeks and was the worst episode we had seen since the initial onset. And my heart goes out to you regarding the intrusive thoughts--they were one of my son's hardest symptoms. He would sob in the middle of doing something or talking to us because they were tormenting him. Night time was the worst. He was so miserable and it took a long, long time for him to share some of the thoughts--basically he was afraid he was going to hurt us. I just kept reassuring him that there was nothing he could think that would make me or his father love him any less. And I kept reminding him that these thoughts were not him. I had him picture a stop sign in his head and then say to himself "I'm having an OCD thought about . . ." Also, grounding himself in the physical world helped. Tapping his feet slowly and calmly in a rhythm or focusing on three blue things he could see in the room and three things he could hear and three things he could feel with his hands--basically having him use his 5 senses to reground himself in the physical world instead of feeling trapped in his head. It is overwhelming--but you will start to find methods that help her.
  18. 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.
  19. 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.
  20. 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.
  21. 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.
  22. 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.
  23. 1 point
    Sheila

    Help form China

    Hi Jasmina, Your English is very good and we were happy to hear from you! It is good to learn that you have found a way to get help for your son. You have made some good starts. I'm sorry not to be able to give you suggestions on amounts of supplements for detox but can say that the amount you are giving of B6 is quite low, nothing to be concerned about; (you can check with your doctor about using more). Some people need to take it with food to avoid stomach upset. In addition to the approaches you are using I wanted to mention that it is important to avoid potential triggers that may be affecting him. Triggers include diet and also things in the environment. We have a book, Stop Your Tics by Learning What Trigger Them -- and it was just translated into Chinese. The concept is that if there is something aggravating his system, it is best if it can be avoided and this will also help other approaches be more beneficial. The publisher gave me these two links for the book in case you are interested. I don't know how it works with you being in China and trying to order from Taiwan, but I hope this could be of some help to you (please let us know if you decide to do it): FROM THE PUBLISHER: You could find the complex Chinese edition on our official website:https://www.wunan.com.tw/bookdetail?NO=14327 Or on Books.com.tw:https://www.books.com.tw/products/0010820544 (Books.com.tw is the biggest online bookstore in Taiwan) We are looking forward to hearing back from you, Jasmina and hope you can find all the answers your son needs, Sheila
  24. 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.
  25. 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.
  26. 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 .
  27. 1 point
    mdl, We knew our daughter had processing issues when she was 2 years old. But we never really thought of pandas. I think of some of these conditions are connected to a compromised, or hypersensitive immune system. So PANDAS is probably a side effect of something else, rather then the cause of all of this. The OCD was sort of as you described. Like if a child hit her, she might tell that story as her greeting statement as if it just happened. "Ellie hit me, right here on the arm" for months after it happened. But that might be the only sign. When the PANDAS hit, she suddenly wouldn't go to some restaurants, checked the locks at night, was terrified of bridges, limited diets, no one could say "blood" without her freaking. I literally had to read her science book to her and replace the word "blood" with "red stuff." But things are much better. There was a freaky event back in October where we went to a restaurant and the wall (2 stories high) was literally covered with spiders. Anyone using the handrail would have gotten hundreds, maybe thousands of spiders on them. She couldn't see them in the dim light, so I told her to stay away from the wall. So she looked closer. Ran to the car and screamed and cried for an hours. We just went back to that restaurant yesterday for the first time. So, even with the PANDAS being low key, it took her months to process that event enough to go back.
  28. 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.
  29. 1 point
    jsl25

    Does PANDAS always have OCD and tics?

    Some of the things you listed at the bottom of the post could be considered OCD. For example, my daughter’s OCD is around clothes and how things “feel”.
  30. 1 point
    bws1565

    Why not start antibiotics anyway

    You are correct with this observation. I never mention my vaccine position to anyone. Once, I have had a local medical center confront me about my not vaccinating, but they were very respectful of my decision to my surprise. The only place where I adamantly refused to get a vaccine with my mouth wide open, was prenatally. Otherwise I always say, "not at this time, thanks."
  31. 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.
  32. 1 point
    Note: This has been approved for posting by Forum administration. For any that contributed to this genetic study that we posted here (and elsewhere) - thank you so much! The cutoff was last night, and we had a great result - 71 sets of data. I will post some tidbits of "aggregate" results here (and in the other groups this was put in). I am wary of posting full results on facebook, because then facebook could claim some ownership. Instead, full analysis results (data in aggregate form only) will eventually be posted here: https://osf.io/pf7q2/?view_only=ba9efeabb38e4a22adced3b5ba4dc5a5 That link above is live to the public now, and you can see (in the last revision of a registration plan), what are the 78 SNPs that we have looked at. We are going to look at many more SNPs, though, and do lots more analysis than what is listed there. The plan was just to lay out in advance what we could declare as significant in this pilot study.
  33. 1 point
    Hi My son with TS/Crohn's had abx sensitivity and we found Olive Leaf Extract, Monolaurin (Lauric Acid), Oil Of Oregano (capsules) and other natural antimicrobials very helpful, including dietary garlic, honey etc. I don't have experience with these and PANDAS
  34. 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.
  35. 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
  36. 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.
  37. 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!
  38. 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).
  39. 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.
  40. 1 point
    bobh

    Dr. K Interview, IVIG & Question

    Hello newfie (are you living on The Rock, or settled elsewhere?): Our son did get better without IVIG. But he had a lot of abx (that helped), a steroid burst (that didn't), ibuprofen (that didn't), some SSRI (very very low dose, that helped dramatically once at that low dose, didn't later) and plenty of supplements. One thing that scared us about IVIG is, that after going through the expense and trouble, there seems to be the possibility of regression after getting strep again. At least, there are some stories to that effect (I'm sure if you searched IVIG in this forum, you would find all kinds of experience). I subscribe to "try low hanging fruit first". That is, simple relatively inexpensive things that might deliver gains of significance. One of them is ibuprofen (but you can't continue a high dose for a long time - this is just a rescue protocol). Another that is even lower hanging fruit (because it is so cheap and easy to do, and not harmful at sensible doses) is to have him drink baking soda and water every day. I didn't try this (our son was better before I heard of it), but I would have had I known, based on the research behind this article: https://www.sciencedaily.com/releases/2018/04/180425093745.htm . We did try various supplements, and we did find one (phosphatidylcholine) that did help our son (but doesn't help everyone). With supplements, I would be very careful - some make some kids worse. Our kid got worse on probiotics, and I have since found that this is not that uncommon among PANS/PANDAS kids. So there is lots to try even while you book and wait for an IVIG appointment if that is what you want to do.
  41. 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.
  42. 1 point
    lwei66

    Daughter has developed some tics

    Hi, My son started to have tics the beginning of this summer. He had multiple tics such as shoulder, neck, hands and legs. He was ticking every second. After reading many postings on the platforms of this site and joined as an advanced member, I was able to read many useful articles about tics and OCD. It really helped me and reassured me. We have given my DS fish oil, multi vitamins and probiotics as supplements in addition to the traditional Chinese herbal medicine subscribed by a Traditional Chinese medicine doctor for a month and half now. His tics are no longer noticeable. He just started having a cold few days ago, we gave him cold medicine. It does not seem to cause flare up n his tic. Hope this gives you some reassurance.
  43. 1 point
    Hi bobh, Thanks for the reply. After reading Shiela's book on Natural treatment for TS, I started to dig into the blood test that the hospital did for my son. I found out that the strep Titer level was only at 200, which means negative for strep infection for my son. So thinking back, it was possible that the abx (penicillin) might have aggregated the tics. Anyway, since my last post, my DS' tics has improved great deal, from every second to not noticeable. In fact, my DS is telling us that he rarely has tics on a daily basis. What we have done is to give Fish Oil, multi-vitamin supplement to my son in addition to Chinese Herbal medicine drinks. We also give some probiotics to my son. Very fortunate to have found this site. People are very kind and always want to help and share information.
  44. 1 point
    Hello, My son has been suffering with PANS/PANDAS since age 8. He is now 14. He was diagnosed at age 11 by a PANDAS doctor after a few years of having standard mental health treatment without success. After two years of antibiotics he received IVIG and six week post-IVIG became significantly worse. Our doctor had never seen this before. We called Dr. K. in Chicago who said my son probably still had strep in his tonsils. We were unable to get a doctor to remove his tonsils based on the PANDAS diagnosis alone. One ENT gave him clindamycin which has a history of getting into tonsils better. His PANDAS doctor then ordered the Cunninham Panel which was negative. My son did not want to participate in their study. We were left with returning to conventional neurology for the tourette symptoms and psychiatry for the OCD. A new neurologist/psychiatrist (a conventional mainstream doctor) heard our story and thought we should try the IVIG again. We did a second round and my son improved greatly then after the third round he's like his old self (as much as I can remember him after all these years.) It feels like a miracle to me. Although he's not 100% better it's remarkable enough for everyone in his life to notice. I'm not sure what helped this time. Maybe the clindamycin before the IVIG? Do not give up based on a Cunningham Panel. It is still experimental. I was crying when the doctor told me it was negative and IVIG would not work for my son. I was certain it was PANDAS. They (Cunningham) are still looking for markers and the current panel does not cover all possible markers which is why they ask families to participate in the research to find new markers. If I had turned down the offer for more IVIG based on the other doctor's recommendation from the results of the Cunningham Panel my son would not be on his way back to wholeness today. His tics are almost completely gone after years of severe tics and anxiety is very low. Almost normal. Of course after years of being in the grips of PANDAS my son has much catching up to do with peers. We still have much healing to do. I'm not sure he will ever catch up but at least now he has a chance. Good luck to everyone. Eva
  45. 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.
  46. 1 point
    lnn

    homeschooling/schoolwork and pandas

    Welcome to the forum and "welcome" to Pandas/Pans. I've unfortunately been at this for many years, first with my now recovered son and now with my daughter. I home schooled my daughter last year because her health was too precarious. Because it was only for one year and we always had the intention of returning to public school when she was able (for social reasons), our approach was probably different from yours. But I'll share what worked in case it helps. I think the biggest thing that was helpful was mindset. Like your daughter, mine went from being very capable to being very handicapped in what she could handle in terms of workload and abilities. There's a medical reason for this - inflammation in the brain creates what's called a cytokine storm. There are many inflammatory cytokines that become elevated, but one - CaM Kinase II - is essential for learning and memory - from Wikipedia: Ca2+ /calmodulin-dependent protein kinase II (CaM kinase II or CaMKII) is a serine/threonine-specific protein kinase that is regulated by the Ca2+ /calmodulin complex. CaMKII is involved in many signaling cascades and is thought to be an important mediator of learning and memory.[1] Misregulation of CaMKII is linked to Alzheimer’s disease, Angelman syndrome, and heart arrhythmia.[6 https://en.wikipedia.org/wiki/Ca2%2B/calmodulin-dependent_protein_kinase_II We had bad days and worse days. Some days, she was able to learn in a fairly typical manner and other days, it was like teaching someone who had suffered a brain injury like a stroke or car accident. So the most important thing I did each day was to feel out where she was at, what she was capable of that day (and I also had to realize that every day might put us at a different starting place, and sometimes she'd have different capabilities throughout the day). Re-setting my expectations on the fly was essential. Otherwise, I'd expect too much, she'd stress over disappointing me and over her own sense of loss. Much like working with someone who's in rehab for a stroke - how frustrating it is to not be able to do things you've easily done for your whole life. So forget about what she used to be able to do. Forget about what her brother can do. These are, for now, false points of reference. Start each lesson by assessing where she is at that moment and work with that. Do not show your frustration or expect more than she can give. That just blames her for something that's not in her control. You wouldn't do that to someone in rehab. You can push the way a cheerleader might - "hey, do you think you can do one more problem? No? Ok, take a break, you did a good job." But don't push with the thought that you can somehow push her back into being her old self (spoken from experience). My daughter (12) reads at a 12th grade level. But there were many times she couldn't focus on the words on the page. But she could listen. So I'd read her social studies book to her while she doodled (drawing helped her stay focused, ironically, because it's something that relaxes her and it distracted her from her anxiety). Then she'd answer questions about what I'd just read to her. Sometimes she could write the answers herself, sometimes I could see from her horrible handwriting that I'd have to scribe what she verbally told me. We just had to be flexible. We did a lot of verbal discussions. We broke lessons up into very small chunks - sometimes as little as 5 minutes. Then we'd re-group 15 minutes later, or an hour later, or a day later. I had to let go of my scheduling, my goals, and just listen to her body and support her. The old her was temporarily gone. I had to teach the person who showed up that day and just help that person do her best for that day. Not easy for a Type A mom. But it's what she needed. She is back in school this year, on a modified school day, with many absences (but for social reasons, she is adamant about being back in public). We often find ourselves having to do do school work at home to make up for missed days, and our approach is to do things in very small chunks. When she's feeling well, she takes pride in doing things independently. When she's in a bad place, I sit with her and coach her every step of the way. It's very much a teaching-as-if-you're-a-rehab-therapist approach. The amazing thing is that once the body heals, the old child comes back. You don't need to worry about her getting lazy or developing bad habits. No one wants to get back to her old self more than she does. When she heals, she will return to the independent, curious child she's been.
  47. 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
  48. 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.
  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
    mommyfor4

    positive update on ds

    Hi Everyone, it's been some time since I've posted. Things continue to go really well. We have even been able to get ds to do acupuncture (my child with huge needle anxiety!!!!) So far it seems to be really positive for him, he feels more focused and even looks more relaxed. He even enjoys going now and will ask when his next appt. is. We had a rise over the last full moon, seems to be par for the course for him, but nothing to send us into the old panic. We are continuing with the Progressive Multi and Natural Calm and of course his diet, we are using freshly ground flax in the mornings...when I remember for Omega's. His food sensitivities seem to be less reactive and shorter lived, although we are not prepared to change his diet. He is not totally tic free, but he is no longer so anxious, and many days we almost have to look for his tics. He still has definate periods of waxing but they seem to be mostly around the full moon and if not we already knew they were coming due to a food exposure etc. All I can say: there is hope, this is not the same child as when I first began this journey and he's 10, according to research shouldn't he be on the rise as prepubescence creeps in? I am so grateful to everyone who ever gave advice or just an "I know what your feeling". Thank you all. Megan


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