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  3. mountainmom

    Bartonella

    Sorry for the slow response. He tested positive for multiple different types of Bartonella. He's been on antibiotics for almost a year. He’s s currently on Bactrim and Amoxicillin. Plus currently on vitamin D, CBD oil, Nystatin for yeast, milk thistle for the liver, iron, and Aleve. His immune system seems better this year, post treatment. Summer is always much easier for him. Currently, his OCD, anxiety, etc is much better. He just has one residual tic. But, otherwise as he has for the past four summers, he has returned to himself. If you have insights, please share!
  4. Hello All, I am hoping someone will be able to shed some light on what kind of anesthesia is best suited for PANDAS kids needing dental fillings. My daughter was diagnosed with PANDAS when she was 5 and she is now 7. She has 6 cavities she needs to have filled. I have already discussed with the dentist that I do not want her to have nitrous oxide or novocaine with epinephrine. I have also asked if she can have the procedures done without anesthetic but they didn't think that was a good idea as, the "sugar bugs" as they called them are too big. I have since learned that laser fillings could be an option, but I am unaware of any side effects that these might have. It was also suggested that she have propofol. If anyone has some insights as to how I could possible proceed, I would truly appreciate it!!
  5. Last week
  6. Hi everyone! New here, first post, but one my wife and I felt was important to share with everyone here that is struggling with tics. I'll start from the beginning: Our five year old son started a throat clearing tic last December. At first we thought it was just dry in our house, and tried to help him by adding moisture to the air. It quickly became one after another after another. Nonstop. We knew something was up but tried to ignore it mostly and started doing a little research. A friend of my wife's suggested it was a tic, similar to what her son had, and that ignoring it would be the best course of action and it would likely just go away. Unfortunately that did not happen. The throat clearing subsided somewhat, but in January he started doing a chin stretch of sorts, turning his head to the right and stretching his jaw. We had a horrible sinking feeling and began researching everything under the sun over the internet, etc. We are not medical professionals, just two normal working parents. We bought and read Sheila's book and implemented some of the dietary changes but we weren't seeing a lot of progress. We eat very well and always organic, but we decided to try gluten free, adding some vitamins, eliminating sugar, but I can't say for certain if we saw any decrease in symptoms. We no doubt believe this works for some, but it wasn't working for us. We gave it some time, about a solid month+ or so, but the tics remained. Then we noticed a new tic. A shoulder roll type tic that was really noticeable. Then we started to freak out a bit as we didn't know what to expect next. "How bad will this get?" "What's next?" This was an incredibly difficult time for me, but it was especially difficult for my wife. The tic was very apparent when he was really excited or involved in his martial arts class, but it was there daily, it was grinding on us as we felt helpless, and we didn't know what to do. We researched more and more and booked several appointments with various doctors. First was a basic throat swab, as my wife's friend suggested it could be PANS/PANDAS, something this friend's daughter was diagnosed with. He indeed tested positive for strep. We were shocked as he had zero symptoms for anything related to it. We began to think it might be that, and booked an appointment with a very well know PANDAS doctor in Illinois. He believed it was, and had us go on some heavy duty antibiotics to see if that cleared him up. He suggested that if the medicine lessened the tics, he likely had PANS/PANDAS. He said if it didn't lessen the tics, we had to do another type of test which I can't recall, and if his results appeared positive there, he had it. Sort of a diagram type, decision tree chart. If either of these outcomes was positive, then he suggested our son have his tonsils removed. Something we were quite apprehensive about as we did not want to put him under unless we knew with certainty that he would be better off with such a procedure. Since we saw no reduction of tics on the antibiotics, my wife and I ruled out that he might have PANS, however kept it in the back of our minds. We then went to see the head pediatric neurologist at a local hospital in Chicago. While he was clearly talented at his job, and highly educated from the very best schools, he was honest about the little people seem to know about tics and that they just typically go away. And if they don't, then just medicate when he gets to an age where it might help him socially. Again, this is not what we wanted to hear. We didn't want to just "hope it goes away." We wanted to fix the issue. Now. We then went to a pediatric psychiatrist, who again we really liked, but found little tangible, actionable steps to test out. We felt like we were at the end of the line and were mentally already worried about his future years, high school, bullies, etc. My wife took him back to his beloved martial arts class and the head teacher asked where he had been and what was wrong. Reluctantly my wife told him, and the instructor suggested we see someone who "helps all my kids." Sure, my wife said, and he went on to recommend a functional neurologist named Dr. Matthew Imber out of Lemont, IL. We didn't know what a functional neurologist was, and saw that there were very few of these types of doctors, but thought why not. If it will help in any way, we were willing to try. My wife took him sometime in March or April, and she would tell me every week about the very simple exercises he would have him do. Looking up and down at dots, she would say. And other seemingly harmless things that he believed would help. Over time, after twice weekly visits, then once a week, then once a month, with various types of exercises, I can say that all of the tics disappeared. There was an incredible amount of progress within the first couple of weeks along. It was one of those miracle things you read about in the books but don't think will ever happen to you. He suggested that as kids develop, parts of their brains don't always keep up the way they should, thus causing some tics. He stated that these cases can be tricky, especially in older kids who will hide the tics in front of him, but he has found success in a lot of instances. We were in constant communication with him over these last several months, as some exercises seemed to work, some didn't, so we tweaked things along the way. There's no such thing as too much communication here. He said that you typically don't see a complete cessation of tics, and that we may need to visit him again in the future during stressful times, growth spurts, puberty, etc. but our son is doing great. As a parent I'm not sure you ever get that sense of complete relief, like finishing a race or something, but to see him not have any of those tics is something we are unbelievably grateful for and something we felt needed to be shared with this community.
  7. shelly76

    Bad tics

    Hi mlee, We've been to many but for PANDAS, we went to a naturopath in Seattle- Dr Gbedawo. She's very informative and caring, but if you don't have a great insurance or picky insurance like me, it's very expensive. I also went to a neurologist at Children's who gave my son a different diagnosis than Dr Gbedawo. He diagnosed him with Tourettes. Children's really works with you on payment-- super grateful. I understand your disappointments... been there and done that. Although I got some good info from both, I still feel like I'm on my own and back at square one. I can't afford the naturopath but I was happy to see some mineral deficiencies which can be treated. I would say if you have the funds, it's not a bad idea to see an alternative doctor and a neurologist to gather as much information as possible. But then again, too much info and too many diagnosis can be dangerous and upsetting. I would suggest finding a pediatrician that is PANDAS friendly if that's what you suspect... that way insurance is more willing to do some tests. Dr Gbedawo will do tons! But again, it's very pricey. I'm still making payments!!! Have you found anyone yet?
  8. shelly76

    Bad tics

    Hi Edsonr, Thanks for asking! My son had a really good July... the tics were minimal... always there but not too bad and not bothersome. Once August hit though, they exploded again out of nowhere! You tend to forget how terrible they can be when you get a break. I really can't pinpoint it to anything. He has had a bit more computer screen time since our summer babysitter uses that as a babysitter...it's infuriating, but she's the only help I have. It could also still be those pesky hormones. He's 100% going through puberty now. Hair everywhere, smelly armpits, acne, and moodier than ever!! He was such a sweet loving kid and now the hormones have turned him into a grump!! I still see enough of the sweetness, but man! What a challenge. I'm hoping the tics die off a bit before school starts in a few weeks. His newest one which is not new but a bit different, is a shaking jaw. He opens and closes his jaw in a three part succession... reminds me of a talking skeleton. 😃 I have to laugh or I'll cry. He has also begin again throwing his neck back and punching upward with his fist. I've noticed the full body shock-like tic again also. I'm super grateful they mellowed out for a month. It reminded me that they do wax and wane but it was such a long stretch last time-- like 6 months, that I forgot. But he's been worse, so I'll try not to complain more. 😃 How are you guys?
  9. At http://www.pandasnetwork.org/research-resources/us-providers/ , there is a naturopath listed in Seattle. I myself can't make any recommendation, except that I myself would want a health care practitioner that can prescribe antibiotics and nystatin.
  10. We had seizure-like symptoms with our PANS child, but they weren't the kind associated with epilepsy (because he was aware, could look right at us, just couldn't respond). Some also have what they call "absence seizures".
  11. Try posting at this PANDAS group on facebook. It is more active so you will get more replies. https://www.facebook.com/groups/189241844607935/
  12. I am also looking for a list of Southern CA PANS doctors. We're on our 3rd inpatient psychiatric hospitalization for my 10 year old. Just keep being bumped from medical to psychiatric teams with no one sure what to do, and nothing has worked on either end (steroids were the most effective but then tapped out after 6 months). Two rounds of rituxemab did nothing. And the psych meds barely slow the compulsive tics, which include horrible self-injurious behaviors. If anyone can PM me some suggested doctors, I'd be so grateful. Traveling is almost impossible, even when he gets out of the hospital next week. TIA.
  13. Read about it, never did it - would love to see your assessment later.
  14. @mom2gsd I have a friend whose son is experiencing frequent seizures, and suspects they are related to PANDAS or something similar. He is currently in the hospital, undergoing a spinal tap. Did you get to the root cause? Do you have any advice for her?
  15. halyard

    Twitching and Restless Legs

    It could be Mercury toxicity as some of those symptoms match that of mercury poisoning.Remove any dental amalgams through safe methods (Biological dentist )and detox with (NAC) N-acetyl cysteine and selenium. Or look for other sources of Mercury.
  16. This is a wonderful post!! Thank you. How are all your kids doing?
  17. mlee

    Bad tics

    @shelly76 How are you doing? We are in the PNW as well. What doctors have you gone to...I'm just always looking for new options. This is such a difficult journey for our kids and us trying to help them. I am always hopeful that the next doctor will help and then I'm disappointed. I'm never sure when people say their doctors helped and prescribed different things to whom are they going? MD, ND, psychiatrist, DO, etc? Where do people find the most success?
  18. Aperomics is 750.00 + 75.00 shipping per test. Some insurances are covering it, some are not. Ours is not. The one you linked looks like it does only viruses. Once I get results from the aperomics, I will post something on here about it thoroughness.
  19. Not yet? I'm wondering if this is one of the first labs to popup that is related to this article: https://www.newscientist.com/article/dn27659-cheap-blood-test-reveals-every-virus-youve-ever-been-exposed-to/ I couldn't find a cost. If it is one blood test for every thing, then the services are masked pretty well. I could only find a $200 out of pocket reference to insurance an deductible. Most labs have itemized cost lists for each test.
  20. tygrus

    Vitamin B Complex

    I know this is probably too late for the original poster, but others may find the discussion above and find my comments of value. I had very high vitamin B6 in a blood test (toxicity with levels 3x normal limit). I think the B multivitamins with 25mg B6 or more was too high for me especially when combining other supplements which had extra B6 I didn't know about (others may handle it better). I started getting tingling skin, sharp pains and/or restless legs, headaches. High B6 gets stored in muscles and uses up a few other Vitamin B's and other minerals to process/change and excrete. If a person wants to take vitamins long term (more than a month) then I would recommend atleast 1 blood test with a GP (family doctor). OTC (non-prescription) products can do more harm than you expect. I’m now taking a multi with less ingredients, made by a compounding chemist according to the doctor’s prescription; no B6 while I wait for it to come down. Will be re-tested later to check the vitamins&minerals of interest. No, I didn't have Tourette Syndrome, but I think a B6 warning should be given for everyone's consideration.
  21. Has anyone tried the lab test named Aperiomics yet? We are going to have the blood and nasal/throat swab done on August 14th. https://aperiomics.com/ Standardized laboratory testing fails, up to 75% of the time, to identify pathogens that cause infection.. Aperiomics identifies all known pathogens in a single test through next-generation sequencing of DNA/RNA from blood, swab, urine, fecal, tissue or other samples. Deep next-generation sequencing (NGS) creates a complete genetic fingerprint of all microorganisms, allowing us to test for EVERYTHING at once instead of only a few things at a time.
  22. Sirena

    Bartonella

    How is kiddos immune system? Babesia is also very hard to treat...
  23. Earlier
  24. bobh

    Dr Chugani / IVIG / Other docs?

    Yes, I will second the "a common trigger for PANS / PANDAS is bacteria “unleashed” during dental cleaning or dental work." statement. In our case, our son was also lax on brushing, and the dental hygienist said he had mild gingevitis. That explains why he was slowly getting worse over a couple of months (dentist confirmed that bacteria in the mouth can enter the blood stream directly through gingivitis-diseased tissue). But then when he had the cleaning done - pow, an explosion of OCD. We solved it, albeit over weeks, with regular mouthwashing, and more regular brushing.
  25. Yes, one can have PANS without any indication of positive strep. PANDAS by definition includes strep, but it can be difficult to find. Of the symptoms you mention, the leg pain seems odd. I wonder if that might be a separate issue that deserves it's own check. I have heard of several folks that have had PANS symptoms develop after a flu shot. I take it from your notes that it was within about 2 weeks of the shot - that is still short enough (in my mind) to link the two, assuming that he never had the head twitch, handwriting and behavior symptoms in the previous year or more. But for your own sanity's sake, I would recommend against trumpeting the flu shot as the cause to doctors that you see. Write it down (as you have here), tell one doctor that you trust the most, but most doctors will tend to dismiss you more readily. In that vein, it is better to suggest PANS rather than PANDAS, not just because you haven't linked strep, but mostly because PANS is less controversial. Even better, is to ask about ruling out encephalitis.
  26. bobh

    IVIG at 25

    I myself don't consider the Cunningham panel good bang for the buck. It doesn't treat, or (as far as I know) give a better picture for how to treat. Did Dr. K recommend it? He has already conceded the signal from tonsillectomy improvement, so I doubt he will pronounce you non-PANS. We decided not to spend that money in the case of our son.
  27. jsl25

    Dr Chugani / IVIG / Other docs?

    Hi, My daughter has been a patient of Dr. Chugani for a couple of years, and I just received a letter from his office about a month or two ago that he has moved back to Chicago area. He has a position at one of the university hospitals there (can’t rememver which one). Keep that appt with Dr. L. It might be your best shot.
  28. Hi there - My 9 yo son has had what our doctor called transient tics on and off for a year. They started after he had pneumonia last winter, with a throat clearing that was legit at first, then we realized he was just doing it over - and over - and over, well after he was better. Then last summer, those went away and he had a very mild shoulder thing where he would sort of roll his shoulders back like he was stretching, and he always seemed like he had to stretch. Then we were so happy when everything went away in the fall, and all continued to be well until this spring, when he got a cold and the throat clearing continued, Then it stopped, and the stretching motion came on. Now he's not stretching, but the throat clearing is back, with a high pitched sigh/squeal (or what sounds ike it), or humming a song. For the squeal, he says he's clearing this throat and he has to do it. I'm really stressed out and have cried several times tonight, worried that it's getting worse (he's never had two things go on at the same time). I'm especially worried about him going to school next week and making audible noises in class. I'm turning to this forum for advice, and really advice for me - how do I not feel so upset? I know things could be much worse. Where do I turn? Do I call the pediatrician? Does he need a neurologist? Any advice is appreciated.
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