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Found 8 results

  1. Can anyone speak to their experience with having a child who carries both a diagnosis of CVID and PANS? I am wondering (hoping?) that my 12 y/o son's PANS symptoms will improve and stay better now that we have discovered that his hypogam is actually part of CVID, but I can't find any information out there on how monthly IVIg for CVID manages PANS symptoms. I am freaked out that my needle phobic kid will have to receive monthly IVIg for the rest of his life, but if it means that he can actually get better, have some quality of life, and have periods of remission, then we have to do it. I just wish I could read something that clues me in to what to expect and our immunologist (who happens to have published a study that indicates that adult patients with CVID have lower quality of life than patients with diabetes and coronary heart disease) said we won't find any other published articles out there. I am hoping to find anecdotal evidence. My son has struggled with PANS symptoms since he was 8 and we have tried almost everything without significant success (CBT, all classes/types of psychotropic medications, antibiotics, allergin-free diet, supplements, CBD, NSAIDS, corticosteroids, essential oils, and 3 rounds of high dose IVIg when in times of high level flare because we thought we were just dealing with PANS). The only intervention that has helped was IVIg, but he would relapse within weeks of finally coming to his wonderful, normal, smart, funny self. Then it would be months of trying to get insurance approval and waiting for the IVIg to kick in because we were trying to get insurance approval through hypogam. We would see our kid come back and within weeks he would get sick and have a rapid decline. With the CVID diagnosis, I now understand why. Is there anyone out there who has a kid with both CVID and PANS and have been doing regular IVIg for the CVID? Did the PANS symptoms improve and stay better over time?
  2. Hello I'm a 24 year old female from germany. I try to make it as short as possible, thanks for reading . I've always was a sick child but the first time I really realized I was getting more sick and sick every day was around age 11. By now I pretty much had every symptome related to pans/pandas. I had my first tic at age 3. I would start stretching my limbs into every possible direction and stare into nothingness for hours, I also had sudden movements. I can't remember but my mum can. It went away by itself. By age 6 I started to have severe anxiety. From that time on I was scared of everything, I wouldn't go anywhere without my mum. In school I was so scared I started sweating as if I was taking a shower. By age 11 I started having severe sinus problems and I would get sick every 6 weeks, but I never had fever. I would get aggressive easily and was extremely moody, I also had severe gut problems Age 14: I started to faint randomly - in the bus, at school, In the subway, night sweats started, every night for 2 years. I had problems with my handwriting, it was becoming so bad my teacher couldn't read it. Age 16: I woke up one saturday and was dizzy and this is where the worst part started. I stayed dizzy for 2 years. I had severe migraines, it felt as if my head was exploding, my coordination was gone, I had extrem light sensitivity too. At 18 it went down to extrem pain in the neck and confusion.Because no doctor diagnosed me except with allergies to milk, egg etc. I started a raw food diet and went back to school to get my a level. At 20 I had a half year of no symptoms I finished my a-level and then suddenly the gut started again, I couldn't eat anything (2016), I had constant constipation or diarrhea I lost 7 kg and was so intoxicated I smelled from every pore when I entered a room, I had to get infusions from a doctor to get the poison out of me. 1 year later I started having auditory hallucinations (now for 2 years) . Also 4 months ago the tics started again. Since 2016 the sinus problems are back, I have nerve pain, my knee joints hurt after taking a shower, sometimes my skin burns and a lot of other symptoms. I will now start getting tested for infections. We start with lyme disease because I remember having a tick at 14, 2 months before I fainted for the first time. I have absolutely no clue what else I have to test for. It's also really hard to find a doctor that knows about pandas in Germany. So basically what I'm asking for is what should I get tested. I read a lot about co-infections, Lyme tests that aren't accurate, encephalitis, something about MTHFR gene and pandas but I don't know what to look for. I'm really confused and my mum (who loves me but...) is really bad at research doesn't know what to do. Until now we tested : -I had a spinal tab (they tested for encephalitis) - negative -MRI-negative -I had an autoimmune blood test - myelin antibodies positive + -They tried neuroleptics - didn't work, then they said they don't think I have schizophrenia -I had an eeg - they found slow waves and put me on keppra against seizures that I didn't have back then. + -I had a gastroscopy and colonoscopy - negative. I'm still waiting for the blood work they tested for gluten sensitivity. -2016 I went to a naturopath he tested me and told me my body couldn't process meat protein anymore. Also he diagnosed me with an illness not accepted by mainstream medicine called pyroluria. But he managed to get my stomach back to working, sometimes it was rock hard even after just eating a cucumber. He also said I don't have leaky gut (also not mainstream medicine) + I'm no expert I don't know where to start because my mum and me realized that doing the standart tests won't work. I'm reaching out for those mums that got their children tested and did their own research. Please help me to figure this out because my mum doesn't even know what a forum/board is and I'm at my limit and really scared. Also sorry for my bad english. Thank you very much. I would be so grateful if you could help. Zanzarah.
  3. Hello all you amazing, fighting Moms and Dads, Was looking for a holistic doc in the NY/CT area who treats Lyme/Pans and made an appointment with him. The other 2 integrative docs were much more expensive so I'm a bit worried that he isn't as good. Hopefully it's just capitalism trying to trick me :-) If anyone has or knows of this doc any info would be greatly appreciated. The other two crazy expensive docs that I'll take her to if need be are Kenneth Bock in Red Hook, NY and Elena Frid in NYC. TIA and best wishes to all!
  4. I ran into someone in upstate New York named Will Cook who had put his son through 2 years worth of antibiotics before his son's white blood cell count dropped and he ended up going down the path of essential oils. He has this thing patted down to a science, the usage of the essential oils, and detoxing. He is a pastor who spent a lot of the last 3 years studying about PANDAs and PANs and in 4 months of essential oils usage, his son came out of the motor tics, mood swings etc. and has never looked back. I am in personal touch with him and he is helping my daughter with a personalized plan. He is not a doctor, he is just a pastor but he is currently helping about 100+ families. He has done lots of research, as you can see on his website below. He saw the video of a Mom named Chelsa applying Essential Oils to her son Joey that took away his motor tics. Chelsa helped Will and now he is helping so many families of parents with children that have PANDAs or PANs like symptoms. Will keeps in touch with some prominent PANDA doctors in Connecticut and New Jersey and publishes articles on his site that he gets info about from them periodically. He had hit rock bottom with his son when his white blood cell count dropped to such levels and felt he had to seek alternate treatment. That is how his essential oils investigation and depth of information on his site came all about. Just thought I'd give you some background info if that helps. In case you wanted to see it, here it is: Video of joeys journey with motor tics, taken by his mom Chelsa who helped Will Cook initially: http://motivatedfamilies.com/joeys-journey-essential-oils-for-motor-and-verbal-tics/ Will Cook's page regarding Pandas and articles and testimonies: https://www.facebook.com/Pandashopeforhealing While I am not 100% certain my kid is a PANDAs or PANs kid, I do know she has motor tics following the flu/Tamiflu, and has had some mood swings in the past though none like a meltdown. She does feel calmer with the essential oils and sleeps well since I started it a week ago, the tics still persist. I feel that I need to exhaust every natural means along with diet to deal with the bacteria and viruses. I am giving the Essential oils a few months try to the best of my abilities. Wish me luck. Best of luck to all of you parents!!!
  5. If you have had this panel ran, I would like to know what symptoms your child is experiening. My son tested highly likely after his symptoms flared but he has also been diagnosied with another medical condition (POTS). I know some of the symptoms that he has does not belong to POTS and I was trying to figure out what goes with the anti- neuroantibodies that are found in the Cunningham Panel. My son is still in this study and the second part of the study deals with the antibodies for the heart. These antibodies have also been found in my son. I understand that these antibodies are associated with scarlet fever or rhumatic fever. I have learned that these illnesses can be caused by strep. However, I would really like to know what symptoms are associated with the brain antibodies. I was sent a couple of studies along with the test results but they did not go into detail about the symptoms that the kids were experiencing. I have found some information on scarlet and rhumatic fever symptoms. I suspect that my son probably had rhumatic when he was three years old. So if this happened first then I think the brain antibodies would come next if the strep did not get cleared up. Would like to hear what symptoms the brain antibodies are causing in your child?
  6. My son had ivig feb 26/27 and has had two pretty significant rages since. At first he seemed so different but now I wonder if that was some kind of placebo effect. I have read everything I can find about turning back the pages and herxing but I guess I am now wondering if I'm just trying to make all the info fit my situation. I don't want to lose hope and give up. I feel so lost and alone. He is not impossible acting all the time which makes me wonder if turning back the pages even applies. I guess I would just like to know if I need to change everything I'm doing. He had HD 2g over two days. Sorry this is so disconnected. The huge knot in my chest and stomach is giving me enormous anxiety. I would love to talk to anyone with advice or anything that applies.
  7. My ds9 is having his first ivig next week in our home. I fear he will not be able to follow through because of his fear of the iv. Any suggestions about how to prepare him? Also I know each situation is unique but what was the first sign after ivig that you were on a good path for recovery?
  8. We are trying to find our way. I would welcome any help. DS 9 dx pans, sep anxiety mood dis nos. if anyone has Los Angeles based referrals please share!
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