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  1. Hello, I live in Nova Scotia Canada & my 11-year-old son is scheduled for a tonsillectomy in September and I was wondering if anyone knew of a physician recommended ABX treatment protocol for pre & post surgery? My son has been dx with PANS 5 years ago and we are hoping that the surgery can help reduce the frequency of flares. The ENT plans on giving him IV ABX during surgery along with a 2 week supply of ABX to take after the surgery. I remember reading something about a specific ABX protocol to follow before and after surgery but can't seem to track down that information now. My
  2. I just want to know if anyone else's child has these weird triggers. Please note my son has Lyme and PANS, and pretty much his only symptoms are severe motor/vocal tics. My son's tics are triggered sometimes by certain words/ideas (feet related, insect related, bodily functions, 'gross' things), the sounds of people coughing/sneezing/blowing nose, the sight of the above mentioned things (can't look at feet, bugs, etc). They *might* make him feel anxious, but what happens is that he has a big tic or a series of tics. For example, yesterday I asked him not to "get underfoot" when he was i
  3. What dosages of steroids and what kind have you found helpful. Seems like a good dose to bring down inflammation well and chill the immune response but not suppress too much would help. Two year scary violent, OCD, tics, fears flair not responding to anything, then I recently tried 800 mg ibuprophan and violence gone within 10 hours, amazing. But feathering on edge, every time we have tried to kill any pathogens he would just get more scary violent. Then my husband brought home cold virus and my son went homacidal, biting himself and us, self abuse bad etc. can't tolerate phenol herbs last few
  4. Has anyone found plasmapheresis on the west coast. My son has been suffering severely for past two years with bad flair and lex has been mentioned by llmd and two neurologists but don't know where to get it.
  5. Hello all! This particular topic is worrying me and I would welcome any thoughts, ideas, experiences you may have. My ND feels strongly that DS10 should have his tonsils out (although that is probably a very slim possibility as we do not have an MD or an ENT on board). She believes his tonsils are harboring a lot of infection and this is preventing him from progressing in treatment. DS is positive for lyme, tested negative for co-infections, exhibits severe motor and vocal tics, slight OCD, no "typical" lyme symptoms like joint pain, brain fog, etc. A quick background - DS has neve
  6. Hi all, I have very high titers of coxsackie a/b, mycoplasma p, EBV, HHV-6, and was rx'd Valtrex by Dr T. I started it last week for a few days (took half dose for 2 days, then full dose for 1 or 2 days?) and then stopped due to what I thought might be side effects. In general I was noticing an increase in anxiety and emotional lability. It's certainly possible this was coincidental and not related to Valtrex - I don't know. I really want to give it a try though and see if it helps me - Dr T wants me to too (we're hoping by reducing titers my anxiety/OCD sx will improve). Anyone out there
  7. Hi all, I received some results back today that I think might shed some light on the severe anxiety / OCD I've been dealing with for...years. Anyone out there with similar results and/or experiences?? Coxsackie A IgG/IgM Antibody Coxsackie A7 IgG 1:800 High titer Neg:<1:100 Coxsackie A9 IgG 1:1600 High titer Neg:<1:100 Coxsackie A16 IgG 1:1600 High titer Neg:<1:100 Coxsackie A24 IgG 1:1600 High titer Neg:<1:100 Coxsackie B Virus Antibodies Coxsackie B Virus, Type 1 1:320 High <1:10 Coxsackie B Virus, Type 2 1:80 High <1:10 Coxsackie B Virus, Type 3 1:16
  8. This is really good overview on Autoimmune Encephalities. My son was checked for the NR 1 receptor for NMDAR encephalities in November but it came back negative. However, I still think my son has a form of encephalities because of his high glutemate levels. So I am going to see if our doctor will check for GABA receptors that affect the levels of glutamate. There is lots of information in this article. This doctor talks about different things that can cause encephalities. http://www.ssi.dk/~/media/Indhold/DK%20-%20dansk/Diagnostik/DiagnostiskHaandbog/Autoimmune%20encephalitis%2044.ashx
  9. I wondered if I could get some input on some odd EBV results we just got back. While the VCA results were normal (IgG and IgM), the EBV nuclear AG (EBNA) was elevated. I should probably also add that ASO and ADB were also high at 300 and 500 respectively. But I understand these results. In terms of history, there was an abrupt flare up in October after a likely strep infection (fever and sore throat) 3 weeks earlier. Antibiotic and anti inflammatory treatment commenced immediately and symptoms remitted. Both medications have been continued because high anxiety and fatigue still remain,
  10. Need advice about best place if hospitalization needed. Current flare severe. We are trying to manage at home until IVIG. Need a plan B. Also looking for advice on best provider experience for second consultation. We are pleased with our current Pans Provider but want to make sure we didn't miss anything in the testing. Thanks in advance!
  11. What is the significance of a "not likely" cunningham panel. If the initial flare was over a year ago is it possible that the cunningham changes with time? My son met the clinical criteria for Pans/Panda's 1.5 years ago. Recently had the panel done with no definitive result. Any thoughts?
  12. Hello friends, This is going to be an unusual thread. I am new to this whole disorder. My child is 7 and I will get my child's lab results on Monday. We are testing for PANDAS and other potential viruses. My question is this... has anyone ever used the Hippocrates Institute in Florida to treat this illness? I have been into the natural medicine/ alternative therapies world for my own autoimmune illness since 2009 and I am very familiar with this retreat/resort, etc. (There are hundreds of youtube videos if you want to research it). I never would have spent the money for me, but sin
  13. Hi there, I am a 23 year old female. I've been doing quite a bit of reasearch on PANDAS lately, and everything is just pointing to it. I developed a sudden onset of severe OCD at the age of 10, followed by a sudden onset of Anorexia at age 15. I also had PLMD at age 16. And at age 21, I started getting tic like sypmtoms and body movements (I'm not really sure if they were present when I was younger as well). As a child, I was in the doctor's office almost every month getting a throat culture for strep or had some sort of ear infection. I was sick quite often as a child. I even remember having
  14. We are testing for Strep today. My son is starting to hate needles. Is there anything else I should test him for (like Lyme) at the same time to eliminate the need to come back and draw blood again. He throws a temper tantrum which is not good for all his tics and stress levels. I am new to this. I am reading "Childhood Interrupted". It has been eye-opening. I just realized what the possible situation was last night and I am overwhelmed to say the least. Any referrals or advice is appreciated. Thanks. Heidi
  15. Hello all, I just joined the group. My 7 year old son is being tested for the strep strain today by his pediatrician, but I need to find a doctor who will take a PANDAS patient. He local doctor knows nothing about this illness. I have called 2 already and they are not accepting new patients. Any recommendations? Thanks!
  16. DS is currently taking 500mg a day of NAC for liver support and detox help, as it is a precursor to glutathione. I'm wondering if we should try glutathione (liposomal? suppositories?) instead as he needs detox help. Anyone using either and finding it makes a difference? positive or negative What brand of glutathione is best? thanks!
  17. Does anyone have experience with PANS caused strictly by a mycoplasma infection? Our previously confident, athletic, outgoing 11 yr old daughter is now more like a shy, emotionally volatile 5 year old. We first saw this change when she went to a short, 5 night sleep-away camp in July of this year. Without any hint that there would be a problem we received many desperate calls from the camp staff and were forced to come get her after 3 nights. Looking back she had missed a week of school back in late April with a cough that was so severe she literally couldn't go 10 seconds without coughing
  18. I'm not sure how to deal with this situation. For the past few months, DS has had a flare up every month or so. Whether it's related to the Lyme life cycle or parasites, I don't know, maybe it's both? He flares around the full moon, and so people have brought up the possibility of parasites. His tics get more frequent and more 'severe' - i.e. the sequence lasts longer and produces a much larger, full body movement. It lasts about a week. Then he goes back down to regular ticcing (it hasn't yet gone away). He is currently taking augmentin and clarithromycin, and some herbals Biocidin
  19. Hi, Has anyone used Metabolic Maintenance REM Maintenance for sleep? Was just recommended this by our doc. Does it work? Hate to spend more money if it doesn't work. My DS (24) will only sleep if given seroquel. thanks frikfrak
  20. I'm not sure how things are going with us.... it's hard to tell if we're making progress or not. Could someone please look over what we're doing and based on your experiences, if it's a good plan? should I just be more patient? Thank you so much! I'll start with when DS was dx'ed with Lyme in May. He was not on any abx, tics were very bad - screaming tic, large movements (punching, kicking), biting himself and things. Did some herbals (Biocidin) but caused a big herx. In mid-July, we started Augmentin (1250mg/day) and things settled down slightly and plateaued - no more screaming b
  21. We've only knowingly been treating for Lyme since mid-July, and added a 2nd abx (biaxin) and a biofilm dissolver in mid-Aug so I know we have a long ways to go. Ten days after adding that 2nd abx, tics started to decrease. So after an amazing first week of school where tics were quite low, DS picks up a cold and now he's worse again. Pretty much back to the beginning when he was only on one abx. Cold is gone, but tics are up. So I'm just wondering if the flares will lessen over time, as he remains on treatment. Or because the tics are autoimmune caused, and the treatment is addressing
  22. Hi, Can someone explain the difference between GABA and Ashwaganda to me. Is it basically the same? Doc has us starting GABA 500mg. 2x daily...possible getting up to 1000mg in AM and 2000 in PM if needed. I also suggested the Ashwaganda for sleep so she said to take 500 mg. 2x day. Said it has alot of other good properties which I did read about. I'm confused though, if i want it mainly for sleep shouldn't I just give at night? Although I've read where some people find it energizes them and some said it makes them sleepy. I did give 1 pill last night and I don't think it di
  23. I'm learning about this after reading about a success story on one of my many Facebook PANDAS groups, and went searching for information. There are others that have been helped by it, although I'm still trying to understand it. My ND's office has a chiropractor who uses it for Lyme patients, but he is not that familiar with PANS. I know it reduces inflammation and increases blood flow and helps facilitate healing, but does it kill bacteria? I don't know whether or not to try it. Has anyone had any experience with this?
  24. I need this groups help on a topic I feel like autism and PANS may be one in the same ,,,, I have heard of other doctors thinking this too that classic PANS is an occurrence after age three, & my sons situation is before he was three with his tick bite when he was a baby.my son is now almost 4 & has a twin with typical chattery development..... We are doing oral human gamagobulin for 2 months and starting our 3rd month we now have good speech but very little desire to be social or use language in a back fourth receptive way, very little desire to socialize with his brother. We had
  25. Just got off the phone with one of my NDs and talking about immune modulation and how we can redirect the immune system into fighting bacteria and viruses instead of DS' brain. She said she uses larch arabinogalactan with a lot of kids - I've been doing a lot of reading and this is the first I've heard of it. Anyone else use it? She also recommended olive leaf extract. What is a good brand to use? And dosage?
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