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Everything posted by Eliself

  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.
  15. I'm so sorry your family is struggling. That definitely sounds like PANDAS. The next step might be finding a doctor that can get you back on abx for the time being. Have you checked Pandas Network? Looks like there are a few providers in your area. You will likely have to travel to get the treatment your DD needs, but having a pediatrician or other doc who at least believes in PANDAS and can prescribe antibiotics can keep her stable in the meantime. She is so lucky that you have caught it early. I have had PANDAS since age two (I'm 15 now) and just got diagnosed a few months ago. Keep fighting, and don't let anyone tell you it's just psychiatric. You know your child best. Something to keep in mind- the tests most doctors run for Lyme (i.e. Western blot) are largely innacurate, so you may find yourself dealing with Lyme in the future. Best of luck to you + your family. Be sure to keep us updated. Elise
  16. Kimballot- I apologize if I'm missing something, as I'm not familiar with your case. But has Lyme been ruled out? So glad he is doing well. Elise
  17. Hi! I do experience what you described. I also get what I can only describe as spasticity in my legs. I don't think it's a cause for concern. I think you would be having more symptoms if it was als. Hope this helps! Happy Holidays.
  18. Sounds to me like he has PANDAS or PANS. Im also 15. I too flare with just a cold, which sucks. I can relate to his wanting you to make him better. I'm sure you wish you could! I would suggest seeing a specialist. They can order mycoplasma titers for you. Other than that, all I can say is hang in there, and I sincerely hope he gets better soon.
  19. Rowingmom- What would addressing bartonella entail? More tests, I assume? I think I was tested for bart, but it was negative. Does that rule it out? Is treatment different from standard Lyme? Thank you for your help.
  20. Sorry that happened. I have heard of many instances when dental work causes a flare. Something about bacteria being released into the blood stream. Hope it passes soon!
  21. Oh my gosh thank you jan! I didn't know about that group. You have no idea how much this means to me!
  22. Thank you rowingmom. I think we're addressing Lyme, but I'm not sure. On a different topic, does anyone have good resources for kids with PANDAS? I've seen so many Facebook groups, etc. for PANDAS parents, but nothing for kids/teens. I know I'm not the only kid with PANDAS, but I still feel so utterly alone. Any way to meet other kids and get support?
  23. Jan251, thank you for your reply and suggestions. Ironically, I am already taking inositol as I transition off the citalopram. I think the NP is considered an LLMD. Yes, the Lyme was found after a boatload of blood work. On communication, I so wish I could tell them what's happening, but I lose the ability to speak. Thanks again for the suggestions!
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