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  1. 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
  2. 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!
  3. 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?
  4. 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
  5. 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
  6. 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
  7. 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!
  8. Hi, Can anyone help with how to take Zeolite. I purchased the powder form and it states "Does not mix well in water" They suggest putting it in yogurt but we are dairy free. Can I mix in applesauce? or something else. My DS is great with taking anything. I'm sure if I did put in water he would just down it, how much water, full glass? Also do you detox everyday or maybe just on weekends? I'm assuming you need a 4 hour window just like activated charcoal so at best I can only do this once a day.....good enough? For how long, weeks, months? thanks for any help frifra
  9. Hi, I know that alot of people use magnesium for their children to help them sleep. My DS (24) sleep has gotten worse, to the point that only seroquel works. I would prefer not to give this and want to try magnesium. My question: His magnesium levels are fine so is it still ok to give magnesium. Also he has constant diarrhea which we are trying to fix so I read to give Magnesium Glynicate because it doesn't create diarrhea, yes? There is also a newer form out now...Magnesium Threonate, supposedly gets into the brain better, has anyone used this? Also what dosage....50
  10. Hello. I am new to this forum. My son is starting on abx treatment this week for Pandas. It was recommended that I log his response. I was wondering if there was a standard or verified tool for tracking symptoms. I am currently using a simple excel sheet and plan to use the Yale OCD scale. Any suggestions for logging/tracking symptoms? Thanks.
  11. 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?
  12. I am looking for a doctor (neurologist, neuropsychiatrist, psychiatrist, immunologist, etc.) in New Orleans who has experience treating PANDAS.
  13. Me again. Nothing is helping our dd. Nothing. Over 10 years of extreme anxiety, (and I do mean extreme), OCD, intrusive thoughts, anorexia nervosa, etc... We're always thinking we've found an answer, but it never works out. Current doc is beginning to think it's just her low weight causing all the trouble, even though we've told her repeatedly that this started years before the eating disorder, with urinary frequency and anxiety. Everyone wants this to be "mental" so they don't have to deal with it. Dd recently became extremely exhausted, nauseus, heavy leg feeling and temp as low as 94.
  14. 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?
  15. Hi all my son has suspected pandas (more than likely it is this)... Behaviour when Ill is horrendous and has been happening for over two years finally being listened to that something was not right. Attended paeds apoingtment last week and the paediatrician advised that the condition is likely to be pandas due to the extreme behaviour ocd etc. I received a letter today advising that we have been referred to a psychiatrist and that some bloods that were taken have given a result of asot level 1200 I have no idea what this means and whether this is good or bad???? My son will not be seen for thr
  16. Hi all - I am new to this board and am looking for some help. My son has been to therapists and psychiatrists for years with not much changing with a mood and discipline problem. He was finally diagnosed a year ago with bipolar NOS and has been on medicine -some of which made him worse and some that did not help at all. Finally took my son to a doctor of functional medicine and she took a ton of blood (and stool and urine - still not back). I also noted (had to ask the pediatrician about this) that he had strep one time in early 2011 - similar time frame to when he started having issue
  17. I've noticed this happening over the winter and it's happening now too. DS seems to flare after he is sick, but not during. For example, this past Monday he seemed to have some slight improvements which continued on through the week, but on Wednesday he developed a stuffy nose/cough in the evening. The worst of it was Thursday and Friday, but his tics were still improving. However, by Saturday he had gotten over the worst of it (and passed it to me and DH), but his tics really flared up that night. And Sunday, and until now. I find it curious and wonder what is happening with his immu
  18. I am trying to learn more about this testing. Is this testing still in research or has it been released? I am understanding it can be used to identify patients that have had rhumatic fever in the past. Has your child had this testing and what did it mean towards their diagnosis? Was it helpful in getting the treatment that was needed?
  19. Found a good resources on Autoimmune Encephalities. It even mentions PANDAS. Thought it might be worth sharing. http://www.ssi.dk/~/media/Indhold/DK%20-%20dansk/Diagnostik/DiagnostiskHaandbog/Autoimmune%20encephalitis%2034.ashx
  20. Hi, Just had appt. with new doc and one thing they gave me was Deplin (15 mg.) for my DS (23) to try...supposed to split the pill in 2. I've been reading however that your supposed to also take B12 and B6 yet the doc didn't mention either of those two. Should I call and inquire before giving this? thanks
  21. Hi, Was just given this to try....Haven't found too much info on it, has anyone had any experience with this? thanks
  22. My doctor wants us to try Oral IG. It is the IVIG used but not with needles, We are told to give him a childs does of Pepsid to stop stomach acid and the oral amount is small & given every other day for many months. It is expensive $600. a month and I am fully aware of that. Background: My son is 3.5yrs old, and is in & out of being with us.He has some OCD, it used to be EXTREME. He talks some but not conversationally. He did 20 days of Cefdinir 2 different times. On both occasions he did speak conversationally. And permanently lost some of his worst OCD & separation anxiety s
  23. A little background ds 9. After ivig (12 weeks ago) was making great progress. Happily Returned to school after 6 months hospital homeschool. He loves it and quickly developed friends and did all his work and homework. Developed acute vasulitis and was put on long dose of prednisone. Within a week almost all pandas symptoms gone. Started saying he felt like a normal kid and he remembered what feeling happy was like. After 35 days of 10mg 2xdaily we are slowly tampering him down. He is now flaring and it gets worse everyday. We had a meeting at school and will probably have to pull him out be
  24. The research below, done in Australia shows the dangers of our food supply and why there is an epidemic of diseases with the onset of GMO food both in our meat supply and corn, soy and sugar beets. My mom always wondered why I, and so many of my friends had to have bed rest pregnancies. She use to be a labor and delivery nurse in the 50's and saw miscarriages but mostly early on. Glyphosates were introduced in the 70's and tripled or more in amounts sprayed with GMO foods. Now I have my answer. I met the farmer personally 2 years ago at a lecture. He is 3rd generation and has seen ch
  25. Hi, My DS (23) lately has been very touchy..meaning touching/playing with EVERYTHING...sees the garlic on the counter and starts peeling it...takes the salt shaker or pepper and puts it in whatever is around like iced tea...just basically playing with everything, can't seem to sit still. If we go somewhere he will pick up whatever is around and play with it. Is this considered ticcing? OCD?....If so then I guess he does have pandas as well as lyme. thanks for any thoughts his mom
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