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Found 206 results

  1. Hi, My DS (24) still not getting better after 5+ years. Too long of a story to go into it but have tried everything. LLMD and Pandas doc think its time to look into IVIG. Went to Neuro and he agreed to do it. I made appt. with Dr. B in CT just for another opinion. They said will have to test whole family with test, not covered by insurance. Could be up to 1400 per person in household. Is this normal? Can hardly afford test and appt. for DS no less rest of family. Is this a deal breaker if we won't do it? Has anyone else had to do this with this doc? Should I even bother to go see him? Just thought I should see an immunologist. Any info would be greatly appreciated. frikfrak
  2. I would love to hear your recovery stories. Did your child ever go back to being his/her "old self?" How long did it take? Was your child in a state of semi-recovery for a while? What do you think was the most helpful thing for you? ----------- Here's a little bit of DS10's story: He came down with strep in October and burst out in a bunch of typical PANDAS symptoms (general anxiety, separation anxiety, hallucinations, irrational fears, emotional lability, rages) right as we were ending the antibiotics. A second round of antibiotics (10 days) took care of most of the really weird stuff. He has had one flare following a bout of gastroenteritis and had a "baby flare" last week when his brother was coming down with walking pneumonia (myco p). The first flare was characterized by raging/anorexia/anxiety--and he got suspended from school for an altercation. The baby flare was "just" lots of rages aimed at me. But most days, he does well. His behavior could be considered completely normal--for a different child. He still has a million friends and is his charming self with them. He is generally able to keep his act together at school. It's just that ... he is not exactly the same as he was before. He has outbursts at the slightest provocation several times a week. He is also super-forgetful and has a hard time concentrating on anything remotely challenging. Also: He seems to have plateaued. If he's getting better, it is gradual. Right now he's not on antibiotics but is taking some fancy Omega 3's, Vitamin C and 5-HTP. I give him Motrin sometimes too. I had titers run two weeks ago but I have not been able to get my doctor's nurse to call me back, which is making me pull my hair out in frustration.
  3. We are finally going to be getting IVIG next week with Dr. L. I am wondering how long you kept your child out of school after the infusion, and if so for how long. I am still waiting to hear back from dr.'s office with regards to some questions about the upcoming procedure. Also, within even your own household, did you keep them somewhat secluded? I am worried with our families' strep and illness history that my other 2 children might pass something along. I know we can not keep them in a bubble, but just wondering how you all went about it. And any suggestions regarding first IVIG are appreciated, thanks
  4. We personally didn't have any luck with the extremely costly IVIG for our dd with PANDAS/PANS. I've read several cases of kids getting sick months after IVIG and ending up in the same or worse place as before IVIG. My question - is IVIG rather hyped on here - has anyone seen any lasting affect without having to do another one? Are the success stories all coming from what Dr. K is telling people, or are people actually seeing success (WITHOUT more IVIG treatments.) Thanks.
  5. Hi, We just finished a bottle of Researched Nutritionals Arteminisin and have to order more but been reading up on Hopkinton Arteminisin. Would definitely like to try this. Does anyone have any info on it....helping? where to purchase? how much to take? thanks for any help frikfrak
  6. We are looking for a "responsive" PANDAS doctor on the east coast. We live in the Washington, DC area and our current doctor, Dr. Latimer, is unreachable no matter how many times we call and leave messages with receptionist, voice mail, or on their online patient portal. Our son is having a PANDAS flare up and is suicidal, homicidal, food restriction, etc. and we need to consult about options (change in abx, additional abx, steroid). He is on daily abx, IVIG 11/13, PEX 2/14. Thank you!
  7. I have just been told my son likely has PANDAS. I knew nothing about it. After reading quite a bit I am putting pieces together. He was given amoxicillin the same day as his MMR when he was 18 months old, for strep, I think... still checking to be certain as it may have been for massive ear infections, if which he had many. Another piece of the family auto immune puzzle is that this same time he regressed into a world of autism. Yet another, I have an adult daughter 15 years older who is on the spectrum. But here is my reason for posting: does anyone know of or has anyone heard of a documented or researched connection to autoimmunity disorders related to infections other than strep? I had recurrent TSS for 25 years and nearly died from sepsis month after month when doctors at a prestigious clinic in Phoenix dismissed it as imaginary. Fortunately, I found a great doctor. Could staph have a similar reaction as strep in people who may develop PANDAS, people who are constantly exposed to it or are carriers ?
  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. 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?
  10. 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 a fever of 107 at the age of 2. My question is, does anyone know if antibiotics could help an adult who possibly has PANDAS untreated? I have tried countless treatments and therapies and medications for my OCD and anorexia and nothing has helped. I feel like things just keep getting worse, and I just want some relief. I remember being totally fine as a child, and the one day waking up and feeling like my world turned upside down and had no idea why I was doing the things I was doing. This happened with the OCD and Anorexia. No previous implications of it, just literally overnight. Does anyone know (or suffer themselves) and are older? Is there anyway to know if it's PANDAS even though I am older now - symptoms never got better over the years, only worse. And of course al ldoctors do is just push this SSRI or that SSRI. I'm worried it's too late in the game to test for anything or possibly treat it. It wasn't ever a known thing when I was younger, and I've even tried to bring it up to doctors now, but I'm just looked at like I have 10 heads. I just want to be okay and recover from these horrible symptoms that didn't plague me for years. If anyone has any words of support or anything they could offer/advice/anything at all - it would be greatly appreciated. I feel like I am trapped in my own body and have been for years. Thanks everyone.
  11. 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!
  12. 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!
  13. 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 since it's my child, it's a whole different ball game. Their testimonials are fantastic!!!! I am entertaining this treatment along with many other options. My concern is his... this would be hard on a 7 year old ... boring and long (3 weeks in a hotel environment, wheatgrass, living foods, educational classes, etc). If I decide to do it, I would have my child bring a DVD player with headset to entertain him while he sits next to me throughout the classes. If any other mom's are considering this treatment, it would be nice to have a child for my son to play with. I have spoken to Brian Clement (the founder) and they will treat children. Anyway.... this is all in the air. I have not even spoken to my husband about it. But just wanted to see if any other families have tried this approach. If we try this, it will be soon. Maybe in the next month or two. I am looking forward to hearing back from you.
  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. 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 frifrak
  16. 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....500 mg. before bed? thanks for any help frifrak
  17. 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.
  18. 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?
  19. I am looking for a doctor (neurologist, neuropsychiatrist, psychiatrist, immunologist, etc.) in New Orleans who has experience treating PANDAS.
  20. 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 94.2 - but doc insists it's because she doesn't eat enough protein. (We've told her REPEATEDLY that dd eats LOTS of protein - but once "eating disorder" is thought of they assume it's all connected to that. Ugh... Fortunately, this illness occurred at the same time I requested some labwork, and the labwork came back positive for mycoP and positive for ASO titer. Sadly, she's been on abx for them, and it doesn't do any good. We went to a psychiatrist who specializes in methylation issues. It's obvious from his office protocol that he leans toward metals issues. (You know what I mean... some LLMD's assume everyone has Lyme until proven otherwise!) The thing is, he did do a provoked metal test and dd DID show high lead and mercury. According to this doc, that is why dd takes abx for strep, myco, etc, etc, and rarely clears it. He says the metals are screwing up her immune system so she is unable to respond correctly to the abx. I've researched a lot of what he's said, and it does seem to make sense. (But doesn't it all at the time when we're desperate and tired?) IF he's right, and getting rid of the metals helps her immune system, then all these weird symptoms of so many other things she has might actually go away. Wouldn't this explain why the PANDAS/PANS kids KEEP getting sick over and over? Something like metals is keeping the immune system screwed up, and that's why there are recurring problems? Antibiotics never bring our dd anywhere close to a baseline - although they can help with extreme fatigue and the kind of intrusive thoughts where she literally grabs her head and screams, "Please make them go away!" But the thoughts are always there, and the anxiety for her makes life not worth living. Another year, and college classes have to be cancelled AGAIN. She truly has no life and nothing to look forward to. She worked her butt off to get a wonderful scholarship, and this disorder has taken it all away. Has anyone tried removing the metals to see if it helps, or are we just barking up another wrong tree?
  21. 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?
  22. 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 issues (pulling his hair out in a large circle on his head). He has only been on antibiotics twice - once for the strep and one ear infection. He is 7 1/2 years old. Since then it has been hitting yelling being mad irritable etc. All of the doctors did not think it was a possibility of something like PANS as we did not notice an immediate onset (we did with the hair pulling but took him to a therapist since we thought it was anxiety induced). I have not spoken to her but got the tests back and I have this info: TSH 4.81 <4 ASO AB 859 <150 DNASE B AB 447 <376 M PNEUMONIAE AB (IGG), EIA 2.12 <9 HERPESVIRUS 6 (IGG, IFA) 1:160 1:110 Past Infection Cytomegalovirus AB (IGG) 1.68 <.91 Cytomegalovirus AB (IGM) 1.2 >1.1 Positive My psychiatrist says all kids have high levels of these and that it is not an issue. Does anyone know if this means he has an issue with inflammation in the brain? Anyone have these results from their kids? I know I should just want and talk to the doctor next week when all the tests are back but I am searching so hard for something. He was asked to leave camp for the summer since they could not control him. Thank you so much. Melmix
  23. 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 three months now by the paediatrician as he said it is difficult to diagnose and there isn't much in terms of treatment and I am at my wits end.. I feel so sorry for him he cannot control his behaviour has extreme rages is violent obsesses about germs wets frequently has pains in legs and cannot sleep at night.... This all occursvwhen he is Ill...it takes him weeks to calm back down and at present he is having recurrent infections of throat ears and chest...can anybody offer any advice at all???? Sorry for the massive rant but I am so worried ....and tired!!!! Thank you in advance!
  24. 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 immune system - when he is sick, is his immune system "busy" with the virus? then he gets better, and his immune system can go back to attacking himself? Also, he kicked a hole in the drywall while ticcing this morning - anyone know how to fix it?
  25. 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?
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