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Eliself last won the day on October 31 2016

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  1. If your neurologist is using that dose successfully for other autoimmune diseases, I’d say it’s worth a try. Good luck! If it doesn’t help, the 2017 JCAP PANS treatment guidelines provide IVIG dosage recommendations in part II “use of immunomodulatory therapies.”
  2. No, it’s usually not considered high dose. 1g/kg seems to be a common minimum for high dose, though some PANS doctors feel that’s still too low. Whether 0.5g/kg is safe and effective for PANS is unknown. Everyone responds differently. If the patient has immunodeficiency, low dose is often helpful.
  3. To answer your question, "Does this sound like PANDAS/PANS?" Yes. Absolutely. Sounds like she already had it before her illness, due to the previous tics and issues you describe, and the virus triggered a flare. I think you're on the right track. Good luck!
  4. What you described sounds like Cyclical Vomiting Syndrome. If your son doesn't have symptoms of PANDAS (aside from the vomiting), in my opinion he probably doesn't have it. I would definitely consider PANDAS, though, if he meets the diagnosis criteria in other areas. I am also aware of a child with both PANDAS and CVS. I have also heard of vomiting being a tic. I would not suspect PANDAS if he doesn't fit the other symptoms. Hope this helps.
  5. LDN caused a severe flare/reaction for me, and I actually ended up in the ER. I was using the topical cream. The day after stopping it I was 1000 times better.
  6. I don't understand, you mean you need to try the antibiotic to confirm a PANS diagnosis? I would go to your primary care doctor and request a prescription. You might also be able to schedule a phone consultation with dr k. If you were to travel to him for treatment, I imagine it would be IVIG, not antibiotics or steroids.
  7. That's so wonderful to read of your son's success! Could the Cunningham panel possibly have been negative because he had just done IVIG?
  8. This reminds me so much of myself. I am 15, first major flare around 10. I can especially empathize with symptoms going away for a while- from 7th-8th grade was great for me with just a little anxiety. I was diagnosed with OCD and anxiety at 11, and PANDAS at 15, so I was on psych meds (citalopram and as needed Ativan) for that whole time to treat what we thought was just psychiatric issues. I think it might have helped a little bit, especially at first, but that might have just been the waxing and waning of PANDAS symptoms. I'm in Minnesota. Out of curiosity, have you tried the more standard PANDAS treatments like antibiotics or ivig? We're heading to DC to see dr. L in two weeks.
  9. Just a word of advice... I'm not sure about PHFH, but programs like doterra and Young Living encourage you to use WAY too much essential oils (so you'll buy more, of course.) You're really only supposed to do a maximum of 7 drops per day, and even less for kids. Any more can overload the liver. All the time I see recipes on Pinterest where you fill a capsule with 20+ drops of different oils and repeat multiple times a day. This is way more than you need, and more is not better.
  10. Thank you everyone! Ryan I think I know of someone seeing the St. Louis doc. Too bad they are closing their practice! Thanks for all the info. LLM- thank you for sharing your experience! I will pm you. Maybaby- Yeah, I don't think we'll be seeing dr k! I've just heard too many not so great things about him. Doesn't seem like a good fit. Thanks for the info. Who is dr r? What treatments has he prescribed?
  11. Marmcglynn- Thank you! What kind of treatments did he prescribe? I've heard he has a terrible bedside manner- is that true? Poppy- Yes, I have been going to Newbridge Clinic since October. She is very knowledgeable and has treated many PANDAS kids. She is more on the natural side, but seems willing to try anything. I think I'm hoping to get an opinion from someone with a bit more PANDAS knowledge. Thank you!
  12. Hi everyone, my last post didn't get any responses so hopefully someone can help with this one. For those who don't know, I am 15 and diagnosed with PANDAS and Lyme. I recently went to see my LLMD for the first time. I'm now taking cefdinir, azithromycin, and bactrim to treat the Lyme. (Still waiting on babesia and bartonella tests, but will probably treat regardless.) The LLMD is not familiar with PANDAS. My parents and I have been talking about going to see a specialist. We live in Minnesota, and there aren't any really knowledgeable doctors here, so we'll have to travel. I know the closest is Dr. K. I am wondering: 1. Is it worth it to travel for a specialist? 2. What specialist would you recommend and why? What treatments do they typically use? 3. What doctor(s) would be best for someone with Lyme? We already have a local LLMD who we are planning to stay with, but I think it would be helpful to have a doctor who acknowledges Lyme. 4. If we're treating Lyme, do we need to treat PANDAS separately too? I looked at the AE alliance website and found the name of Amanda Moen, MD. She is a neurologist at Gillette children's and is local. Her profile says: "AE experience: Antibody-negative AE NMDAR encephalitis Other antibody positive AE Her professional interests include anti-NMDA receptor encephalitis, neuroimmunology, leukodystrophies and other metabolic and genetic neurological disorders." Do you think this doctor would be worth a try? Thank you in advance for any insight and hope you're all doing well.
  13. Do you have PANDAS? How did you initially get a diagnosis? We are in Massachusetts. I do have PANDAS. I am 15 and have probably had it since age two. I actually mentioned PANDAS to my mom who eventually agreed we should look into it. I was diagnosed in October. We don't have a PANDAS doctor here in Minnesota, but an integrative Nurse Practitioner diagnosed me and has been treating me until December.
  14. That definitely sounds like PANDAS to me. The wax and wane pattern you describe is a hallmark of PANDAS. I can tell you from personal experience that there may be OCD that is only in her head or well concealed. Have you observed tics/abnormal movements? Even without tics/OCD, ("required" for a PANDAS diagnosis) I think there is too much here to ignore. Where are you located? So sorry you're going through this. Let me know if you have any questions.
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