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Showing content with the highest reputation since 07/07/2019 in Posts

  1. 2 points
    JessL

    I’m angry

    Ugh. Big hugs. I'm so sorry, I really feel you. I was where you are just last month, emailing and calling our doctor in tears asking if this is how our lives will be forever now. I still wake at all hours of the night with a hundred questions and thoughts etc, waiting for the night time wake ups of screaming etc. It feels neverending. PTSD for parents with PANS/PANDAS is SO real. The caregivers need help too. This is a lonely wild ride. If you're able to find a support group I know a lot of parents find just venting to people who understand therapeutic. Xxo
  2. 2 points
    I completely understand with needing to hear from others. We tried so many supplements over the years. We also did neurofeedback (muscle testing) and cognitive behaviour therapy with a child psychologist. Looking back the most important things that helped were - clean diet (real food not processed) with low oxalate foods, tonsil and adenoid removal, and learning how to "fight" his ocd and "worry brain" with common sense techniques that were given to us by the psychologist. Those techniques continue to be useful to this day, but only when he's not in a flare. When in flare it's too hard - his brain is inflammed and only abx will work. Tamar Chansky's books are helpful in understanding the talk-back techniques. I would also say that learning to re-wire his brain with music lessons also helped. People seem to look at me sideways when I say that but I truly believe it made and continues to make a difference. Another book I recommend is: The Brain's Way of Changing by Norman Doidge. It's been a long journey for us and we understand that our son will always have tics and worry brain issues to some degree, but they can be managed and he is living a great life. He excels at school, has many friends, participates in sports, camps, etc and is very happy about his life.
  3. 1 point
    JessL

    Books that really help.....

    Thank you! Gosh I'm waiting for a miracle for our sleep, my 5 year old pans kid has never slept more than a few hours at a time and never in her own bed, going to hunt down that dawn huebner.
  4. 1 point
    MLee

    Vitamin B6

    Tropea22, I may look into this as well. Thank you Chemar!
  5. 1 point
    tropea22

    Vitamin B6

    Hi MLee, I was never able to find it but, thank you to Chemar. I will search for Carlson Labs.
  6. 1 point
    Just to add - I would definitely recommend the T & A removal. I believe it made a big difference both in ridding him of an embedded infection and preventing further ones.
  7. 1 point
    Limemom

    Tics and use of essential oils?

    Thanks Mama3 for replying my post. I cried almost every night the first week, I regained strength after reading the posts from this forum. I know I’m not alone in this long battle. {{Hugs}}
  8. 1 point
  9. 1 point
    MLee

    School overnight outdoor camp?

    Thank you Chemar. You have so many good points. I really appreciate your kind perspective and insight. I will take them to heart. And you are right. You only have your youth once.
  10. 1 point
    Has anyone done CellTrend testing for auto-antibodies? This test was developed for POTS and ME/CFS, but surprisingly my son tested high positive for over half the 11 auto-antibodies in the panel. I'm treating this as very meaningful for likely AE. But would our insurance agree and pay for IVIG or PEX, based on a research test from Germany? Still it's enough for us to want to get serious about getting evidence to justify IVIG or PEX (both to us, DS20 himself, and insurance companies). However, years ago we'd spent $$$ for the Cunningham panel and insurance completely discounted that. So I'd like to know what other autoantibodies DS has, but I'd also like it to be meaningful to insurance companies. What have you found useful? Candidates I know are: Vibrant Wellness' Neural Zoomer Plus Moleculera labs' Cunningham Panel (much better for PANDAS than PANS) Cyrex Labs CellTrend' GmBH's CellTrend Mayo Clinic's ENS2 Labcorps Quest The only ones that are FDA-certified (?) and reimbursable in the US (as opposed to "research tests") are the last three -- the Mayo clinic's classical autoantibody panel (largely for cancer) and the very limited ones from Labcorps and Quest I care about getting info that's useful to us and to insurance companies. So if one of the first 4 was useful for anyone appealing for IVIG rejection, I'd love to hear that.
  11. 1 point
    Cmac

    Length on Antibiotics

    Pennmom—yes, his intrusive thoughts were the last thing to go. He had hallucinations (he saw werewolves all over the place), ocd—lots and lots of rituals like running in front of the back door a certain number of times before he could enter the house, extreme separation anxiety and extreme anxiety in general, and emotional lability. Those symptoms began to ease up gradually between 3-7 months from the time of the first onset in August 2018. The hallucinations and accompanying hand movements were the first clue that something was terribly wrong in August 2018. Looking back it seemed like there were some minor signs from earlier in the summer, too. I had never heard of PANS/PANDAS before all this. As for your original question I think we started to see some improvement after about 8 weeks on a certain combo of antibiotics (biaxin and augmentin) and then dr switched up antibiotics to get the myco p. Although no two kids’ path to recovery is the same it does seem like it takes awhile to get better. (I had such high hopes for our first 10 day course of amoxicillin that the pediatrician put him on when she discovered the strep). Hang in there—it’s going to get better.
  12. 1 point
    mcbull

    New Hope New Year

    Having raised a kid now to college with constant PANDAS struggles, I am convinced immune health is key. We had a period of antibiotics and then tonsillectomy which seemed to provide some relief. But continue to manage separation issues and particular obsessions. Currently using prozac and pretty aggressive CBT (ERP). Having recently overcome significant digestive issues, I am convinced the key to strong immunity is a clean and healthy gut. My kid was exposed to antibiotics at birth, had chronic constipation as a toddler, and was OCD symptomatic at age 3-4. We have a sibling with anxiety and narcolepsy, another with ADD/ADHD, we had some of these mild tics off and on. I'm sure they are related. I recognize the parental panic. The kids need examples of dealing calmly with these issues. All we can do is find someone good to work with and continue to try the next thing.
  13. 1 point
    Chemar

    Mumbling swear words

    Hi I do understand how you are feeling as my son went through a bout of coprolalia (cussing/swearing) tics when he was 10 and it was hard for him as well as for us (he does have a Tourette diagnosis, genetic from his Dad's side) Coprolalia is recognized as a vocal tic in Tourette Syndrome. All TS tics are involuntary, so that makes the struggle when dealing with "socially unacceptable" tics even harder, especially as often having people notice or comment makes the tic even harder to suppress. My son had Cognitive Behavioral Therapy, and that really helped as he was able to learn ways to substitute words or say the bad ones under his breath. A good CBT therapist can really help tremendously...but it was our experience that it's best to have someone who understand TS He is 30 now and living a productive life so please know there is hope, even after the multitude of assorted tics that have waxed and waned over the years. Things were at their worst for him when neurologists and psychiatrist put him on those very strong prescription drugs, so just do be informed before you accept prescriptions from the doctors etc you are planning to see. I know not everyone reacts negatively to the meds, but when they do, it can be long lasting and very seriously detrimental. We found tremendous help by addressing his diet, environment, allergies etc and supplementing with nutrients he needed. We also used a number of other alternative treatments that made a very positive impact. I have an old thread that gives some info on what we did to help him https://latitudes.org/forums/topic/687-the-treatments-that-have-helped-my-son/ I would also encourage you to look at the section on the ACN/Latitudes website on TS tics https://latitudes.org/conditions/what-is-tourette-syndrome/ Also the very helpful resource books by Sheila Rogers on natural treatments for tics/Tourette and learning what triggers tics https://latitudes.org/store/natural-treatments-for-tics-and-tourette-syndrome-book/ https://latitudes.org/store/tourette-syndrome-triggers-book/ I hope this helps a bit, and that you will be encouraged in knowing things can get better and there is much reason for hope!
  14. 1 point
    Cmac

    Intrusive thoughts not resolving

    We did a whole bunch of different probiotics—Culturelle, GutPro, Flora, etc. For antibiotics the ones that he was on longest were a combo of Biaxcin/Augmentin and then later Clindamycin/Rifampicin because the strep came down, but not the Myco p. (The Clindamycin was really rough on his stomach though).
  15. 1 point
    MaryAngela

    Mycoplasma results

    My DS responded very well to Clarithromycin after showing high Mycoplasma titers. It’s common for kids to get yeast issues from antibiotics even while taking probiotics, so it’s important they have the probiotic 2 or 3 times a day. Be sure to space the probiotic at least 2 hours away from antibiotic. I’ve used Gutpro (expensive) and Jarrow (reasonable). I wouldn’t skimp and use a generic grocery store or drug store brand. Yeast can cause issues itself. I also give my DS a yeast control supplement, especially while on abx, and for a few weeks after. We’ve used Candicid Forte and OrthoFlora yeast support (Protocol for Life Balance). I’m sure Whole Foods also sells yeast control supplements. I prayer that your daughter finally gets some relief from the abx. Keep us posted.
  16. 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.
  17. 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!!! ❤
  18. 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.
  19. 1 point
    Hi I think perhaps you are referring to B12 not B6? For B12 the methyl form is better than the cyano form
  20. 1 point
    MAMA3

    Tics and use of essential oils?

    The vetiver seems to help our sons tics the most. We’re not really sure what it does other than possibly slow down the nerve sensory overload to the brain some. We apply it in the morning on his big toe when he’s getting dressed for school.
  21. 1 point
    Sunflower78, YOU ARE NOT ALONE! There is a community of support who can and will listen and understand what you're going through, direct you to resources, tell you what has worked for them (elimination of gluten for us for sure), and give you hope. That was about the same time my son's tics started, and it has been a long, fascinating journey. If this is any comfort, he is presently a thriving 15 year old who plays football, is the deepest thinker I've ever met, kind and empathetic to others, and a most marvelous human being. As far as the guilt goes, that is tough, but I try to remember that we are all complex creatures who have genetically inherited strengths, talents and qualities that can make life a little more challenging. And that is true for all of us, whether it manifests as something extrinsically or not. Hang in there. We understand. Eve
  22. 1 point
    I've been dealing with tics since my childhood. I am 24 years old. I've tried tons of methods. I've found 2 good ways by myself to reduce tics. I have Neck moving right and left, breath out many times loudly and tighten my legs etc. So I've tried to push tics away, not responding any pressure any tics but made worse and then I've tried to direct my tics. Let me explain with my poor english. First tip; My goal is reducing "visibility". Because i'm tired stopping tics completely. When I feel the pressure to "breath out or neck moving"(more visible tics) i tighten my legs(less visible side). It's like guied the tics over my legs. I feel like the energy want to comes out so i let the legs do the job until feel relaxed. When I tighten my legs 2 or 3 second the pressure was gone and in public that would be less visible. Second tip; I've directed myself to do all tics "only" at home. I've worked on this about months. I've hold my tics in public or school. If I can't hold the tics anymore. I go to toilet or some place that I can be alone I release my tics and when i feel relaxed i move on. So when I get home I don't do over thinking about tics , I do tics so hard I've never stop any pressure, I do all tics and realesed myself. I am 24 , it took almost 18 years I've reduced %60 percent of my tics. Last of all being overweight and drinking too much coffee increase my tics so i walk 20 minutes everyday and drink coffee once a week.
  23. 1 point
    Hi Sunflower78 So sorry to hear of what you are going through. As a mom who was in that same state of anguish almost 20 years ago, I absolutely understand. But I so agree with Sheila that you should not blame yourself. There are so many possible causative factors that can trigger tics. We can beat ourselves up, or we can focus on trying to find the best ways to make things better. It was thanks to Sheila and this forum that I was able to follow the latter course, and thankfully things started to improve for my son. In our case, my son does have a genetic TS component, but even so, many things we learned here made such a difference in helping to manage his tics. I do think your pediatrician may be way too quick to say Tourettes! Unfortunately many mainstream physicians really are not keeping up with so much info that is around about other possible tic triggers. I am at work so I can only do a quick reply now, but I would greatly encourage you to just start reading up on as much info here as possible and also on the main ACN/Latitudes website https://latitudes.org/ Sheila's books and articles have been a tremendous help to so many as well!
  24. 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
  25. 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.
  26. 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!
  27. 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
  28. 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.
  29. 1 point
    So sorry to hear all this! Have you tried https://www.amyjoysmithnp.com/ ? She just moved to a practice in Orange, CA and has worked with DS19 for about 5 yrs. to 'bring him back' to a better baseline.
  30. 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.
  31. 1 point
    Cmac

    Need to vent

    Maybe a PANS/PANDAS specialist could do a Skype/phone consult and at least give you a script for all the blood work? Also this thread has info on doctors people here have seen and I think various states are mentioned.
  32. 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.
  33. 1 point
    Cmac

    Need to vent

    My son had strep and myco P. Try testing for myco P. I had never heard of it before they tested for it (I had never heard of PANDAS until pediatrician told me). The first dr we saw after pediatrician was an infectious disease specialist—he tried a whirlwind of antibiotics over a course of two or three weeks and nothing really helped. It was only after 6 weeks of Biaxcin plus 2 weeks of Augmentin on top of that that we saw a difference (that was with Dr T—specialist in NJ). My point is that you aren’t doing anything wrong —just that most times this is a long haul. I think there are a few kids who recover quickly with one two week course of antibiotics, but I think they’re the exception not the norm. From what I’ve gathered it can take 4-6 months (in our case it was 6-7 months) to return to baseline after the initial exacerbation and the exacerbation can last for weeks, too. I think time is a big part of the healing process. The inflammation needs to come down and even if there are no strep titers, there could be ones from myco p. Have you also checked for Lyme? Oh, and even with a solid PANS diagnosis from multiple drs, I did also wonder if my son was mentally ill and that I was deluding myself. So, I know how you feel. And we were offered psychiatric drugs almost immediately as well (from the infectious disease dr).
  34. 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
  35. 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.
  36. 1 point
    kakrpa

    Need to vent

    I'm so sorry to hear of what your daughter and you all are going through - it sounds tough and incredibly frustrating. I won't say you're doing anything wrong as I think we are all doing the best we can given the circumstances. I truly feel for your daughter as I have dealt with those horrible OCD thoughts myself - I was dx PANS almost 5 yrs ago (young adult onset w severe anxiety that immediately took hold as the pureOCD subtype). It wasn't strep that triggered it for me either (my guess is it was brought on by the pneumonia I battled immediately before this illness). While I would typically second anyone refusing psych medications, I will tell you that I would not have made it to today without their help along w the help of a great psychiatrist. I guess I'm saying please don't shut the door on the potential for her to find some relief in even just one medicine, if it gets to that point. I know there are potential risks and benefits to each approach, just please keep an open mind. Have you heard of TRS by Coseva, before? I just placed an order this morning and would like hear from anyone who has tried this. If you haven't heard of it nor tried it give it a search. It's premise is interesting and I'm curious to see if it will help me. Btw, I am in no way advocating nor endorsing. Wishing you and your daughter the best. Please give her extra hugs as what she needs most right now is love and acceptance, and to know those thoughts are not HER THOUGHTS, but rather manifestations of the illness itself. They do not define her. She's likely very scared inside - it's hard to understand what's going on (even for an adult, let alone a child). (((Hugs)))
  37. 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.
  38. 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.
  39. 1 point
    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.
  40. 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
  41. 1 point
    We did not see dramatic improvement for my DS 14, until he was put on the encephalitis protocol for IVIG, which is monthly HD. He has had 5 so far. This was started after limited success with weekly LD IVIG. He has shown lasting improvement with each treatment. Tics gone, OCD 90% gone. He still has anxiety, focus issues and sound sensitivity. We are hoping for some relief from those symptoms with future treatments.
  42. 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
  43. 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.
  44. 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.
  45. 1 point
    Lwei66

    7 year old tics

    Hi Hope36 How is your daughter now? I am new here because my 8 yr-old son developed Tics about 1 1/2 months ago. On the worst days, he was ticcing every second. As a dad, I worry so much with tons of anxiety myself. I gave my son Fish Oil and some Cod Liver Oil. We also give my son herbal medicine. So far, the situation has improved some what. Tics frequency improved from every second to 2 or 3 tics a minute. Sometimes we see 10 minute tic free intervals. Following Dr. DeMare's book on Natural treatment for TS and tics, I am now doing detective work to figure out the triggers for my son's tics. I do believe that my son's tics was epigenetic and brought onset by environmental/dietary triggers. It will take time to slowly identify the triggers and then hope that there is ways to address each of the triggers. Hope that your daughter's situation has improved.
  46. 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
  47. 1 point
    1 Psychologist in Michigan: MICHIGAN Dr. David Wartel Psychologist (specializes in CBT) 248-626-1330 West Bloomfield, MI Several docs in Ohio: OHIO Dr. Cheryl Leuthaesuer Integrative Wellcare 216-696-2320 Richfield, OH Dr. Ali Carine Integrative Pediatrics 614-459-4200 Upper Arlington, OH *Dr. Allen Lewis (Leading PANDAS Physician) Integrative Pediatrician 614-245-4750 Gahanna, OH will treat more complicated cases involving PANDAS and Autism Dr. Jan Kriwinsky Pediatrician 216-831-7337 Beachwood , OH http://pandasnetwork...iders/#MICHIGAN
  48. 1 point
    when i was reading your post, i thought it was written by me!!! My child flipped on magnesium but flips on EVERYTHING we have tried. It turns out that she went crazy on everything because she had severe yeast/fungal issues. She is now on Amphoceterin and doing well and also tolerating more supplements/vitamins. It was a hellish 13 years and now we are finally seeing some results. Also possitve for lyme/bartonella. We treated her with the bactrim and mino. and she was a mess. Again, I think because yeast was out of control. Hope this helps.
  49. 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
  50. 1 point
    My situation is probably unique. Yes, I have undiagnosed ts. Well, I saw a doctor once at age 21 and he prescribed clonidine. I took it for a while but it made me soooo tired that I just quit. Started ticcing around 7 and turned into full-blown ts around 14. It was never really addressed growing up other than my parents telling me to stop. I think they were just too embarrassed by the whole thing. They would threaten me by saying "if you don't stop by the end of this year, we are taking you to the doctor". I didn't want to be labeled as different or come to terms with the fact that there was something really wrong with me, so that scared me. I don't think that's all bad, however. I was very social and fine with my peers and am sort of glad I didn't have that "label". My late teen years and college were the worse, probably from stress. Sharing a dorm room was very difficult without having any privacy. I tried my hardest to control it and don't think I would have so much if it was out in the open and I think my symptoms would have been more rampid. I think it's an aweful and bizarre disorder to have in that you appear normal but have to contort you body in ways so you "feel" normal. It's been personally a difficult journey but in all actuality, I get along fine, aside from a small social anxiety issue. Nothing a glass of wine can't fix. My husband's mom has a chronic tic that comes and goes and his brother has chronic tic/OCD issues and my husband has some compulsive issues. None of them ever talk about it either. My husband's point of view is that everybody has something and no big deal. I don't think he knows how bad it can get and that's where I feel like I'm carrying all the stress, anxiety and burden. Even though he was with me since high school and has seen me for who I am, I've never talked about it with him so he has no idea what I've really gone through. I've gone on so long without talking about it that is seems like I have this huge secret. This forum is the only place I've ever talked about it and it feels so good knowing there is support out there. I keep waiting for the day that I have to have the "big talk" and I have no idea how he'll react. I think that is why, for me, the stress is doubled because I not only have to deal with my children's issues but the role I play in all of it. At this point, I don't even care about myself, I just want my kids to be healthy. I would take on symtoms a million times worse if it could spare them. I haven't ever mentioned the ticcing to my dd. I don't want to make her self-conscious about it and right now it's managable. It it worsens, then I'll deal with it then. Since my symptoms didn't worsen until I was 14, I'll be hanging on for a while. I struggle every day with the question of was it right to have children knowing I could pass this on to them. It's a gamble and 20 years from now I can better answer that.


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