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rhyanen last won the day on August 15 2018

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  1. Try posting at this PANDAS group on facebook. It is more active so you will get more replies. https://www.facebook.com/groups/189241844607935/
  2. Can herxing occur when treating Mycoplasma with Azithromycin? My son became much worse when he was on the azithromycin.
  3. Around 14 years of age my ds stopped having tics and instead started presenting with delusional/psychosis type symptoms and more intrusive thoughts. It's been a nightmare.
  4. Hi there. Just wondering if anyone has had success with United Healthcare covering your child's IVIG in the home? If so, was it initially denied? Thanks!
  5. Have they checked for other autoimmune encephalitis like GAD65, potassium channel and the other limbic encephalitis? There are several variants. ADEM is another one. My coworkers son had developed that. I agrree with consulting with Dr. Najar. I hope they can figure it out soon. I will keep your daughter and your family in my prayers! Keep us posted.
  6. When my 17yo ds is in a flare, his predominant symptom is psychosis. He will have minor auditory hallucinations as well which seem more sensory related. He will become paranoid and fear that someone is going to break into the home and kill him....whether that be the government, someone he knows or even my husband. He'll also think the killer is sending secret messages to him through media online or see certain symbols. I'll spend nights with him calming him down. It's a nightmare to say the least. I'd take the tics and OCD again like in the past over this. He also has Lyme so it's ard to tell if it's coming from the PANS or the Lyme.
  7. LOL! Sorry but that was my first reaction because it's obvious they have terrible writers for the show. What a stupid scenario. Not to mention what a disservice to the children and families whose lives have been torn apart by this illness!
  8. http://lymemd.blogspot.com/2017/08/autoimmune-encephalitis-and-lyme.html?m=1 I thought this was really interesting considering the concensus seems to be treat the Lyme first then encephalitis second. The description was spot on with how my son described his encephalitis. We'll be treating the encephalitis first.
  9. I would also like the name of a good PANDAS/PANS and/or LLMD in So. California if you would please PM me too. Thanks!
  10. My son, soon to turn 18, is going through the same thing. We believe it to be neurolyme but have not seen a LLMD yet. Do you know of any good LLMDs on the West coast or Southwest? If anyone has any names please PM me. Thanks!
  11. Anyone have experience with Dr. M who is a LLMD in Bedford, TX? Or any suggestions for other reputable LLMD's in the Southwest and California area? Please PM me with any recommendations. My 17yo ds is in desperate need if a Lyme doc in. Thanks! Amy
  12. When is it time to take your child to the hospital? My 17yo son is in a bad flare right now. He had a recent mycoplasma infection back in Jan however was put on the wrong antibiotic. He's had two syncope episodes within the past 2 months. Low blood pressure, increased heart rate. Food refusal. We took him to the ER and they gave him IV fluids and put him on azithromycin for the mycoplasma. Bloodwork unremarkable except for elevated monocytes and some electrolyte imbalance. Followupscwith neurologist and EEG next week. Forward two weeks and he is getting worse. He is delusional and paranoid. He thinks a friend of his is psychotic and is coming to kill him and the rest of the family. He had a rage episode yesterday which caused him to bolt out of the house barefoot running down the street. Extremely unusual for him as he is very agoraphobic. We were worried he might bolt in front of a car and get hit. I was able to calmly get him back in the car. I had to sleep in his room with him last night.He was terrified and said that his brain feels fractured in a million pieces. He kept getting up and peeking out the windows. He kept saying he doesn't want me or his dad to die. I am at a loss. Do i take him to the ER to be admitted? No one in our state treats PANS however his pediatrician will treat with antibiotics, so I am worried the hospital will just put him on a bunch of psychiatric drugs. He was diagnosef by Dr. A in Phoenix and received a second diagnosis by the CPAE clinic at UA Banner in Tuscon. I cannot get in contact with either facility. Never had IVIG. Concerned about steroid burst due to his racing heart. We're desperate. Can anyone offer me any advice? Thank you!
  13. Thanks for the reply. He had a ton of bloodwork done 2 years ago during his worst ever flare, and immune system bloodwork all in range. He did have an IgA deficiency as a child though. But not anymore.
  14. My son's pedi ran some bloodwork and both IgG and IgM Mycoplasma antibodies came up positive. In the past only his IgG wss positive. His pedi stated that the presence of positive IgM means very recent infection. He didn't show any symptoms except excessive sleepiness/fatigue. She put him on 250mg day of azithromycin for 5 days. Should he only be on this for 5 days, or is protocol usually for a longer duration with active Mycoplasma in a PANS child? Any input would be much appreciated. Thanks!
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