Jump to content
ACN Latitudes Forums

All Activity

This stream auto-updates     

  1. Today
  2. If you are looking for a doctor, my DS has been under Donald Raden, MD’s care for just over a year. He is in Highwood, IL. He is an integrative psychiatrist, and specializes in Lyme (although my DS tested negative for Lyme). He also has treated many kids and young adults for PANDAS/PANS. I believe he will do phone consults. My son has his IVIG at home. The infusion service will go to Colorado, but there may be an issue if it’s not prescribed by a Colorado doctor. Dr. Raden will sometimes use conventional psychiatric meds (at least short term) and antibiotics, but ultimately seems to use herbal treatments. My DS is using herbal antiviral, antibacterial, anti fungal and anti parasitic remedies. I can’t believe how well he is doing. I thought this day would never come!
  3. Thank you for your response and encouragement! It gives me hope. We were on the fence about the Cunningham panel due to cost but if it is positive (and it should be), it sounds that would work greatly in our favor in getting treatment approved.
  4. Yesterday
  5. Hi Amy— My DS (almost 14) has suffered from PANS for 10+ years. We believe his first onset was when he stopped eating solid food at age 14 months, after a virus. He continued to have what we now recognize as PANDAS/PANS symptoms until very recently. At age 8, he had an overnight onset of severe OCD and moderate tics. He was treated unsuccessfully with psychiatric meds for 2+ years. He had a 7-month reprieve from symptoms at age 10 1/2, using NAC and other vitamins and supplements, but at age 11 symptoms returned, even worse than at age 8. His symptoms were as bad as the worst PANDAS case I’ve ever read or heard about. Finally got diagnosis at age 12. He had tonsillectomy and HD IVIG at 12 with limited success. Less than one year ago, he had a positive Cunningham Panel. Again, this was more than 10 years after first onset, and even after 1 IVIG. It was a struggle, but he has been approved for 6 monthly HD IVIGs. Apparently this is the protocol for Autoimmune Encephalitis. He has had 3 already. He is about 90% improved. It is nothing short of a miracle. By the way, our current doctor theorizes that the IVIG he had 18 months ago was not lasting, due to an active Mycoplasma Pneumonia infection.
  6. Hello. We have 6 children with lyme and co-infections. 3 have PANS. I am seeking advice for our 16 yo ds. We think his PANS symptoms began around age 3 1/2 yo (positive bull's eye rash at 2 1/2 yo w/only an 8 day course of antibiotics.) His prrimary symptoms until his teens were OCD and learning issues. He was never formally diagnosed; we've put it all together within the last year after his sister had successfull treatment for an eating disorder with IV antibiotics. Fast forward to now, he has major rages and still can't learn. Super high anxiety and OCD in the need to control everything in his life. He does not have relationships with anyone outside of our house and his siblings do not enjoy being around him as he is very abrasive. After one year of antibiotics, physical symptoms have improved with no shift in psychiatric symptoms. Our doctor has recommended brain mapping/neuro feedback and we are going to pursue that. In the meantime, I would like to figure out how we can start the process to be approved for plasmapheresis, realizing that this is a long shot. Does anyone have any advice? We are in Colorado and if anyone knows of a clinic or doctor that we consult with, that would be appreciated, too. Also...the Cunningham panel. Has anyone had a positive after 10+ years of illness? And, is it possible to get our son back after so much time spent in this illness? Amy
  7. Hello Cobygurl, I am currently trying to find alternative ways to having my 7 year old daughters teeth filled and came across your post. I was wondering how the procedure worked out for you??
  8. 509Momof2 I empathize with you. My DS is 9 as well and has tics that started this year. We are working on diet to help. I too am worried and sad. I hope the school year started off well for your son. Sarah I really took your response to heart. Thanks for taking the time to write it. So many good points.
  9. Can you please share the exercises the neurologist gave your son? I would be totally grateful. Sarah
  10. I am not an expert in this by any means, but I also have a 9 year old with tics. I have been a basket case, but through it all, my boy is fine. Here's what I do to calm myself. I ask myself 'is he being affected adversely by the tics? (bullying, self consciousness, distraction) ' So far the answer has been no. 'So what is my role in all this?' To provide for my kid and be strong if he needs me. So far he doesn't need me, so the bigger problem is in me and not him (which is good, because we are capable of changing ourselves if not others). In preparation for school, I wrote his new teacher a note explaining what is happening with the tics. I am happy to share it with you if you like. For me, I have a therapist that I am working with because rationally, I know the tics are a tiny part of who my son is but emotionally, I get very anxious. Again, that is on me and I have the power to put things in a better perspective. In terms of treatment for our son, we started with the pediatrician, who referred us to a pediatric neurologist. We saw two. One was awful ("well, then it's Tourette's"). The other was so much more reassuring ("Yup, your son has tics. He is in no danger. Try to get him involved in things that keep him focused and help him find ways to relax"). Hearing the two very different voices was disturbing, but at least both concurred that there is nothing more serious going on. Despite the emotional rollercoaster that the first neurologist created, I am grateful to have taken our son to a neurologist because I know that his general health is not in jeopardy. I still get very anxious and I still cry, but it helps knowing that I've taken appropriate actions for my son and for myself. Yours in empathy, Sarah
  11. Last week
  12. 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!
  13. 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!!
  14. 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.
  15. 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?
  16. 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?
  17. 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.
  18. 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".
  19. Try posting at this PANDAS group on facebook. It is more active so you will get more replies. https://www.facebook.com/groups/189241844607935/
  20. 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.
  21. Read about it, never did it - would love to see your assessment later.
  22. @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?
  23. 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.
  24. This is a wonderful post!! Thank you. How are all your kids doing?
  25. 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?
  26. 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.
  27. 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.
  1. Load more activity


×