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  1. Today
  2. Thank you for the answers. I wrote down everything for my mum too. The Mcas sounds a lot like me, actually since early childhood. Thank you for that too. I will get checked for lyme in 2 weeks, I guess wish me luck.
  3. Yesterday
  4. Just a thought...This might be totally out there but as well as checking out PANS, it might be worth investigating MCAS (Mast Cell Activation Syndrome) Look up the list of symptoms and see if they sound like you. No harm done if it's not. Good luck!
  5. Last week
  6. Zanzarah, thank you for writing and you will find a good information and people here on this site. Your symptoms are very similar to my experience with Lyme disease, specifically: tics dizzyness moodiness poor handwriting sensitive gut problems headaches and neck pain / meningitis You mention you had a tick bite at age 14, then you had night sweats. Your naturopath said you cannot process meat protein. Do you feel bad after eating meat now? If so, you may indeed have a meat allergy called Alpha-gal which caused by a tick bite: https://www.mayoclinic.org/diseases-conditions/alpha-gal-syndrome/symptoms-causes/syc-20428608 I suspect that your other symptoms may be due to a tick bite when you were 3 years old. Tick-borne disease is certainly possible in Germany: https://www.ncbi.nlm.nih.gov/pubmed/12141751 Have you seen a doctor who specializes in Lyme disease and immunology? You can attempt to locate a doctor here: https://www.ilads.org I wonder if you would be able to travel to the U.S. I have a very good doctor in Washington D.C. who specializes in tick-borne disease, neurology, and immunology. I will message you with his contact information.
  7. 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.
  8. What is your issue with a blood test? My DD is extremely needle phobic. We are have trouble with blood tests as well. Insisting won't help in any way......:) I did search online and found a prescription patch that works very well in numbing the area, and related brain pathways. It is called Synera. I would love to know people's experience with this. OR any other suggestions. (We would need to do a standard blood test soon, and can't see how it will happen. Last blood test we had 3 people holding her down......Not going that route again....)
  9. Hi, garnerflys, welcome to the Forums. Sorry to hear your son's tics are getting worse. I'm sending you a message shortly-please look for it. Thanks! Sheila
  10. My 12 year old son was recently diagnosed with ASD and I'm pretty sure he also has Tourettes. I am a newbie to this site and am looking for Houston-area providers who take a more holistic approach to these conditions. Posters on the PANDA thread speak highly of Dr. Doctor, but does he also work with ASD patients? Would also appreciate the names of nutritionists who can help with an elimination diet and vitamins. Thanks.
  11. It looks like there are online purchases available but with all the fake or deluded prescription drugs I’m not sure how you can verify if they are real.
  12. DD symptoms ramp up when a period is coming. She takes boswellia. Before she started taking mitochondrial support supplements, She took Advil cold and sinus which is 200 mg ibuprofen with 30 mg of Pseudoephedrine. 30 mins before symptoms leading to an episode would stop an episode from occurring. It worked so well we got dependent on it for more than a year but then it cause her immune system to attack her thyroid and liver. If it works for you as long as you use it when needed it shouldn’t have any side affects. She took 1000 mg of ibuprofen during flares and it would curb symptoms but not stop an episode. The Advil cold and sinus works way better. DD would also experience symptoms with bacteria infections. I think urine test are less costly than blood tests. You can also ask the pharmacist for over the counter anti inflammatory alternatives.
  13. hi, my 12 year old son has had tics on and off for the past few years. They are definitely getting worse, is there a functional medicine or environmental dr that people recommend in new york or the north east??? thank you
  14. Earlier
  15. Many of us get caught up in a diagnosis name. I think we got lucky with a pediatrician that understood what we would struggle with in the medical industry if she diagnosed our child with pandas which at that time was concidered very rare. She made a diagnosis of “unknown autoimmune illness” in 2012. the result being we did not experience testing or treatment denials from our insurance. Example: getting an mri. Symptoms vary in intensity. We thought at first that DD did not have a tic but later realized her tic was verbal. Her tic also changed with a steroid blast treatment from verbal to head shaking. Having no experience with Pandas symptoms makes it hard to define or recognize symptoms. We think the underlying cause of antibody and protein build up in the Basal ganglia. we did eventually get a pandas diagnosis in 2015.
  16. Did you see the "oddball symptoms" thread a bit further down this forum? That talks about that. A lot of people seem to suspect a connection. I'll also point out that low muscle tone and general double-jointedness seems to be very common in people with Asperger's syndrome as well, although I'm not sure if it usually goes as far as that shoulder-snapping thing you described. Of course, Asperger's isn't at all the same thing as PANS, but they do go together disproportionately often, so a correlation in one would mean some amount of correlation in the other too, if you see what I mean.
  17. Ahhh - that would have worked but unfortunately naproxen is a prescription medicine in this country! So close but so far! I'll bear it in mind, though, perhaps it'll be useful some time in the future. Do you mean to say it worked noticeably better than ibuprofen? (I do take ibuprofen some of the time, in fact much more of the time than I should, I'm sure you shouldn't continue to take it several times a day for weeks and months on end, but it doesn't entirely seem to cut it.) Or maybe they might even be prepared to prescribe that - it's not going to be possible, by the look of it, to get to speak to any of them before we leave for Grasmere, but maybe they'd be prepared to speak over the phone and then send over the prescription for us to get cashed at the pharmacy there. Perhaps that'd be a thing that she'd be more prepared to prescribe without a blood test. It's infuriating because I get the impresssion, though I'm not sure, that what my GP is thinking is not so much "I don't want to prescribe this until I've seen the blood test" as "I don't want to go on just prescribing things at hazard without bothering to do blood tests, I want the blood tests to be done". Whereas, for both the reasons mentioned, the blood tests just ARE NOT GOING to get done for a bit, insisting is not going to change that, so just leaving me without any treatment until then is just a bit useless.
  18. Improvement of psychiatric symptoms in youth following resolution of sinusitis. https://www.ncbi.nlm.nih.gov/pubmed/28012531
  19. Thanks. I don't think we will have options with respect to where to get IVIG. I believe Dr. K still uses only one specific facility in the Chicago area.
  20. Anyone have any advice / experience on sphenoid sinusitis? Is it a piece of the PANDAS puzzle? I just got diagnosed with a “right sphenoid sinus disease” on a CT scan. ENT said it is a small chronic infection, but probably not worth worrying about if it is not causing physical symptoms. Is the ENT right? Or is this a must-surgically-remove-for-PANDAS situation? Please and thank you. Really need guidance on this one.
  21. My son was diagnosed and treated at age 12. He is now 16 and does a lot of the things you are describing. I know a lot of other boys who do the same things at this age though. I tend to think it is teenager boy stuff. And maybe boys in their early twenties also (think frat houses and bachelor pads).
  22. I can't speak to obtaining Augmentin without an Rx, but I thought I'd share something else that worked for us. My daughter went through two rounds of Augmentin with amazing results. When she started to flare a while after the antibiotics treatment ended, her PANS doc was hesitant to go right to Augmentin as my daughter's bloodwork was still ok. She suggested we first try Naproxen (brand-name: Aleve) anti-inflammatory for 30 days and see if that helped. It was amazing. Now that is our first line of defense when there are illnesses going around and my daughter starts to flare. I know not everyone responds the same way, but just thought I'd pass along how much Naproxen has helped us in place of antibiotics.
  23. Ds 15 diagnosed at 10. Three long years homebound and once PANS under control we had post viral CFS. He is healing and physically stronger than ever he is even on sports . But still emotional and focus is way off ADHD and he is beyond messy. I don’t mean to sound unappreciative. We are so thankful he is healing but he leaves everything everywhere like tornado hit the house. Blows his nose on tissue throws on floor. Clothes all over home. If he makes cereal for example milk is all over n cereal is on the floor. We remind n remind n yell and reason and yet it’s now year two of this mess and zero executive skills . As a toddler he at least made efforts and was much neater. Now .....He ignores and if we press him he says “stop yelling.” Or “It’s never enough with everyone” . Huh? He even leaves back back in the yard with shoes socks wherever. No concern. No effort. Embarrassed to say but he pees all over toilet n floor as well. Missed toilets n never flushed. What the heck! We go over toilet rules n everything daily and just says “ sorry mom” . Teeth brushing spits n never ever rinses I takes him to sink n go over n over and he says oh. I forgot. N laughs. Help!!! . Used Dental floss left out everyday almost like he refuses to use garbage. He just doesn’t seem to get the way life functions. I don’t get it.
  24. Is there any reasonably safe way of obtaining Augmentin without prescription (like I seem to remember people have talked about getting azithromycin via veterinary suppliers, although I can't now find where it said that)? I doubt it, but just throwing that out there. We're going on holiday in a week, for two weeks, and my symptoms improved quite noticeably in the last week or so of the course of Augmentin I've just finished but are now going downhill again, and my GPs (who do the prescribing because the PANS specialist is a paediatrician and therefore, bizarrely, isn't allowed to prescribe for adults) are dragging their feet about prescribing any more Augmentin without a blood test. (Which can't be arranged in that short a time, and anyway if the symptoms continue as they are it's going to be very unlikely that they'll be able to GET a blood sample UNTIL I've had the antibiotics.) So in about a week we're all going to be in a hole.
  25. So my understanding is that pandas is a autoimmune illness and it doesn’t work right. Somehow the antibodies get the wrong signal an get sent to do the wrong thing in the body. I thought I understood that IVIG process is to puts good cells in the body That will do the right things but will eventually be used up as time goes by. And the whole intention is to get symptom relief. If you have a child that is raging, it can be unmanageable. If this is what happens then, I’d say it should be said as IVIG works. If your intend is to cure Pandas, then I’d say it doesn’t work. We never had IVIG, steroid blasts gave us that relief. I had originally thought that the steroids were use to reduce the inflammation and maybe it’s part of what happens but the doctor said it’s more that is reset the autoimmune system. It worked twice. When doctors found the underlying cause to be the mitochondrial system and started support for that, it brought the symptom scale from 1-10: 10 down to 1-3. Which is a major difference. Antibiotics also worked immediately for us but since our child wasn’t initially diagnosed with pandas, we never did them long term.
  26. With your brief description of his prior IVIg -- reacting right there in the hospital -- I would be careful with infusion rate and possibly pre-medicate (many people do ibuprofen and antihistamines). If you are paying out of pocket, price out your options ahead of time. Hospital infusions tend to be the most expensive, sometimes double or often triple the price of other options. As you are aware, home infusions tend to be the least, though if you feel more comfortable in a clinical setting (understandable with his prior infusion), there are infusion clinics all over the place these days, your basic clinic with rooms, nursing desk just like at the hospital, a doc in the building, etc. They just need a doctor's order. Our infusion clinic has an out of pocket price list. Yesterday I paid $83 per gram for 100g Gamunex C and about $500 nursing fees for two days of infusion (though my kid is pretty fast after so many monthly infusions, only about 3 hrs infusion time for 50 g/day x2) $8800 total for 115 lb kid. It is possible to call infusion clinics to ask about their out of pocket prices.
  27. Yes, we are willing to travel. Thank you!
  28. DS wants to to it. DH is on board to spend our savings to make it happen. I am the only one with reservations. DS will see his internist this May to get 2nd opinion (she knows Swedo and is very up-to-date on latest studies/articles). If internist agrees, we will have a call w/ Dr. K in Jan, then labs and another call w/Dr. K in March. Hypothetically, then IVIG in May 2020. Thanks.
  29. The sample size in the Swedo study does seem small, and there do seem to be kids who respond week and kids who don’t. My son had one IVIG at age 12 (had PANDAS probably since he was very little), diagnosed at age 12, antibiotics, steroids, tonsils removed, none of these things helped, then IVIG and about three months later he seemed much better, and six months later I realized I had not worried about him for a long time. So for him IVIG clearly did work, and no improvement with antibiotics did not mean it was not PANDAS. I would be skeptical of the idea that if a month of antibiotics doesn’t work it is not PANS. If that were the case it would be simple and none of these kids would ever need IVIG.
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