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Everything posted by rhyanen

  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!
  15. In the presence of PANDAS symptoms it could be significant. I am hoping someone more familiar with this test will provide their input.
  16. Hi. Curious what heart issues your daughter was experiencing and what treatment helped it to resolve? My son was diagnosed with PANS/Lyme 3 years ago(age14)with intermittent flares. He has cardiac involvement. Looking back he's had PANDAS/PANS since age 3. He was always sick. At 14 he could no longer function, dropped out of high school and became severely agoraphobic. He is still agoraphobic and can sometimes leave the house for dr. appointments but that is about it. We cannot get IVIG or any of the other treatments due to lack of knowledgeable physicians in the area and lack of the financial means to do it. He's a very severe, complex case. It feels like things will never change for him and it's very discouraging.
  17. Hi, Is there anyone on this forum that has a child with related cardiac issues due to PANDAS/PANS, Lyme, etc? If so, did you notice any improvement after treatment? What helped, what didn't? Was there any resolution of cardiac symptoms after treatment? What was your experience? Thanks!
  18. Hi pepper1, My son is now 17 and he still rarely leaves the house. He made some improvement for a while and went out a couple times to his friends house but that was about the extent of it. He will go to the occasional doctor appointment, but other than that he doesn't leave. He hasn't been to a store, School, or other facility in four years. He is just going to have to get his GED through the local College because the school district has washed their hands of him. Over the past few months he was having nosebleeds quite a lot.... meaning a couple times a week at least. At first I didn't think much of it but then he started complaining that his anxiety was getting worse and he wanted to go on anxiety medicine. This coming from him and actually communicating to me was a really big deal so I listened. I consulted his pediatrician who put him on a very low dose of Zoloft...25 mg. It has been two weeks that he has been on the Zoloft and it hasn't helped much. Yesterday he came out of his room and told me that he wants to go on the PANDAS medicine. I asked him if he meant the antibiotics and ibuprofen and he nodded yes. I finally realized that the nosebleeds could be related to a possible strep infection in his sinuses and that a flare-up is starting. It is also possible that because my husband and I have been sick with something viral he may be reacting to it. At any rate I am calling his pediatrician in the morning to see if we can do some kind of strep swab and then get him back on antibiotics. I have noticed that the antibiotics with ibuprofen usually seem to help with his flare-ups but it doesn't completely eradicate all his symptoms. If only IVIG were affordable for us we would be doing that in a heartbeat.
  19. Hi tinaw. I just wanted to check in with you to see how things are going. Are things any better yet? Have you found any solutions to getting your son out of the home? It's still a work in progress with my 16 year old. He still won't leave the house but has improved in other ways by reconnecting with his friends through online gaming. And his tics are gone. Anxiety still lingering enough to keep him homebound. But he did have a friend come over last weekend...first time in a year! I know we're kind of in the same boat with our boys, so I just wanted to check with you. Hang in there!
  20. I'm curious about this treatment too. Cannot afford IVIG right now and antibiotics don't seem to be having that much of an effect.
  21. Btw, I forgot to mention that one thing that helped us to get him to go to doctor appointments was to start playing the video games with him. He loves us being a part of HIS world. So I would give him plenty of preparation with appointments. I would remind him daily that his appointment was coming up, so he could allow himself to mentally prepare for it. I would also allow him to go to the car once the doctor was finished examining him. It provides a comfortable place for him to be alone and stress-free.
  22. Wow! When I first read your post, I had to go back and read it again because I thought I had written it! We are in the same situation however my 16 year old son is now going to doctor appointments occasionally. But that's the only time he'll leave the house. He hasnt been to a store or in school for 1.5 years now. He would have been a junior this year if all had gone normal. But at 14, his freshman year, he had the worst flare to date, and it has incapacitated him. He plays video games all the time too. It does help to distract him when going through flares.
  23. I'm so sorry you daughter and family are going through this. My son was 14 years old when his worst flare up of autoimmune encephalitis occurred. Of course we had no idea at the time that that was what it was. He has a diagnosis of autism since age 3. He kept having what we called autistic regressions every few years. Then at 14 he started having paranoia, hallucinations, severe anxiety, sleep disturbances, ocd and loss of communication. He could no longer attend school due to the cognitive damage it caused over the years. His IQ dropped 18 posts. Once an honor roll student with friends, he is now without friends and extremely agoraphobic. He has become completely disabled by it. Diagnosis PANS/PANDAS. HOWEVER, I still wonder if it might be some other type of autoimmune encephalitis. Antibiotic treatments aren't helping much and steroids made his tics worse. Do a Web search for Anti-NMDA Encephalitis and see if it sounds like what your daughter may be going through. It is much more common in females aged teen through child bearing years. It is often related to ovarian teratoma cysts. It can be diagnosed through bloodwork and cerebral spinal fluid( lumbar puncture) Please keep us all posted. Hope you find some answers soon.
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