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  1. How much and how often are you dosing? We have an adult dd, but she is severely underweight. We're willing to try anything.
  2. msmom, Sadly, my dd was unable to do the IV ozone. We drove nearly 2 hours to do it, but when they saw her labs they were concerned she was not healthy enough to do it. (Of course, we weren't warned of there being any glitches about that... ugh.) DD is almost 27, and has had this since she was 9 years old. She was crushed, as we don't have much left to try. I had to hold onto her hand while I drove home, she was so distraught over it, that she was hopeless and wanting to die. My fear was she would try and jump out of van. It was a horrible day. There have sadly been too many of those days for her. The most worrisome lab for that doc was her low sodium. It's been running between 120 - 126. She eats and drink LOTS of salt, plus plenty of the healthy Real Salt, and even takes sodium tabs to help with her urinary frequency. Makes no difference at all. Her weight is dangerously low, and I monitor her caloric intake. Her anxiety seems to be causing her to literally waste away. It's so hard to get anything done with her health like this. The ozone doc DID say that ozone would not be any cure-all, but it could help somewhat. We'll take any help we can get, but she's just not in a good enough place to get it done now. Please let me know if your son has it done, and how he responds. I hope this is something that can be helpful for him. (Note: he'll have to have his G6PD tested before they'll do it.)
  3. Interesting... I have no idea about the titers, but my dd gets VERY spectrum acting when feeling her worst. We even paid for an evaluation to rule out Asperger's. The diagnosis from the psychologist was "PANS", but whenever we discussed her behaviors, the woman would repeatedly say "That sounds just like autism". I think there was one test my dd took that made her think more PANS, but she clearly thought there were some overlap in spectrum behaviors. Dd developed normally also. Then she would hit these rough patches where OCD and anxiety would rage their ugly heads. So now I think I'll have her mumps and measles titers checked out of curiosity. Aside from the fact that Merck is being sued for the vaccines not being as effective as they claim, so it would be a good idea to know that, also.
  4. Thanks so much for your response. Did he have IV ozone, or another kind? Did you have to pay out-of-pocket for ozone? It's interesting - I've heard several people mention the HD IVIG not being effective, but the more frequent ones being helpful. Glad to hear your son is having good success!
  5. Curious if anyone has tried IV Ozone, and if so, did you see any benefit? PANS dd has so many different issues it's like whack-a-mole, and nothing seems to help for long, if at all. (Bartonella, Marcons, Mold toxicity/Ochratoxin A, parasites, especially high in Blasto, etc, etc) Wondered if the ozone might clear out several problems at once.
  6. This is a case report about a 14 year old boy with psychiatric issues. Turned out to be PANS. Published in the Journal of Central Nervous System Disease, just a few days ago. There are images of the Bartonella rash. Just like the rash my dd has had in past. https://doi.org/10.1177%2F1179573519832014
  7. My daughter has some similar experiences, so I think I have an idea of how you feel. I'm just glad you are feeling a bit better, and hope this all calms down and you can feel less anxious, soon.
  8. I'm not sure this would be a side effect of Ibuprofen, but I agree with the posting above - 4 to 6 hours. Husband mentioned that activated charcoal might help, if it's really a reaction to Ibuprofen.
  9. Please ask your pediatrician to go to the Pandas Physicians Network. (www.pandasppn.org) It's a site for and by physicians. Your ped can also contact Susan Swedo at the NIMH. They are there to help physicians know how to treat. I feel for your situation. Been there, done that. We had terrible experiences with psych wards, but sometimes that's all you can do until you can find help. Please demand that they run some kind of test to see if there is brain encephalopathy. Sadly, they probably won't, so you'll need to get some docs in place willing to look at the PANDAS/PANS info or contact Swedo. I wish you the best.
  10. When we are away from home, it never happens. I'll be calling for another radon test today. Any functional or integrative medicine doc will say YES to EMF sensitivity. If you get on Pubmed, research shows different things, but since I spend every spare minute researching health issues, the one thing I can tell you is research outcomes are determined by whoever funds the study! That being said, my son, who is probably autistic, doesn't say much, NEVER complains, we have a terrible time knowing if he is uncomfortable, etc.,... when we moved here and he would go into the room with the Comcast router/modem, he would come out and say he didn't know why, but his head hurt. I was shocked, as he NEVER mentions any ills unless I quiz the heck out of him! Our doctor is a general practitioner, but her adult kids are on the spectrum, and her son had the same issues, and he uses something to sheild it and it works for him. You might want to try mercola.com, I'm sure he has some info on dangers of wifi. Plus we already know too much cell phone use causes brain cancer, and of course no one believed that when the idea first came out... As far as avoidance, there are lots of docs posting how to avoid it. Some people put their router on a timer and shut it down for the night for a break. You should never have a tablet, phone or computer, or even your alarm clock next to your bed. Some people that get sick from it go so far as hardwiring everything, instead of wifi, like in the "good ol days"! Yes, the canary in the coal mine is definitely real. Such as our mold issue. About 25% of people have the genetics where they don't clear the mycotoxins, so you can have a room full of people, and only a few will get sick from it. Thankfully, with epigenetic studies, these people aren't labelled "hypochondriacs". Actually, I'm the the one that made the connection with our dd. She didn't know why she would get sick, but she finally realized after years of getting sick that mold was the trigger. There are many sites on how to protect yourself from EMF. Hard to know which ones are legit... you might want to try a European site, they seem to be much further ahead of us when it comes health issues.
  11. Our adult PANS dd is having auditory and visual hallucinations, ONLY at night, and ONLY in her lower level bedroom. These did not occur in our previous home. Our current home had very high levels of radon when we purchased it, but a mitigation system was installed. We are in the process of having it checked to see if it is working properly. So, I know hallucinations can be a part of PANDAS/PANS, but her's are ONLY at night, and have only been in this home and only in the lower level. Has anyone else had something similar going on? We've ruled out her sleep meds, as it occurs with different kinds, and usually the hallucinations don't happen until early morning. She's the "canary in a coalmine"...she has the dreaded HLA genes, so I'm wondering about other toxins. We're pretty sure there is no mold down there, as mold usually causes her migraines and vomiting, for days, and this is not occurring. Anyone else dealing with PANDAS/PANS in a high radon area?
  12. Here are some links: http://drjaydavidson.com/removing-parasites-fix-lyme/ https://www.amymyersmd.com/2017/05/10-signs-you-may-have-a-parasite/ https://shop.microbeformulas.com/collections/frontpage/products/microbe-formulas-mimosa-pud Concerning the urinary frequency: You might also ask your doc about a trial of Desmopressin (prescription) and/or ask their opinion on sodium chloride tabs (salt tabs, over the counter). They don't always work for my dd, but but she finds them to be helpful some of the time.
  13. So sorry. My dd has dealt with sleep issues for 15 years. But things are somewhat better now. We've tried lots of both herbals and meds over the years. Her doc recently prescribed her Trazodone 50mg. She started with 1/2 a dose and worked up. More than that can cause headaches in some people. This med will not help my dd GET to sleep, but once she is asleep, she is resting more deeply than she has in all these years. (But she still has to get up multiple times due to urinary frequency, but is able to fall back to sleep.) So in that sense, this med has been wonderful. She is still having issues falling asleep, but sometimes the over-the-counter Kroger Nighttime Sleep-Aid is helpful. (Doxylamine Succinate tablets, 25mg.) She has to time it just right for this to work. She's tried all the other stuff, melatonin, GABA, magnesium, valerian, etc. and sadly, those have never worked. I hate using meds, but we've had no choice. Another thought, parasites. They are active at night. Testing isn't reliable. Both my kids were tested - negative. But I listened to a Parasite Summit and decided to try a product they mentioned and we've ALL been passing disgusting things! I know parasites can also depress the immune system and steal important nutrients, which affect everything! Anyhoo, sorry for the disgusting topic, but the supplement we are using is called Mimosa Pudica through Microbe Formulas. We also started slow using l-ornithine to clear ammonia, as parasites are known for excreting ammonia, which can screw up the brain. And you have to keep the bowels moving. DD and I have always been severely constipated, but OxyPowder (it's a form of magnesium) works fantastic.) I hope you and your son are able to find some relief soon. We certainly know how horrible this can be.
  14. I am unable to open the links! I remember reading somewhere that the amount of mercury in the vaccine was much higher when I got it, back in the early 90's. Does anyone know more about this? Also, when I received my first Rhogam shot, I spoke with a hospital employee who mentioned she had got the shot as well. Many years later, I heard her son had committed suicide, and this was right around the time my dd started having major issues. The shot connection has always been in the back of my mind... More research needs to be done. Thanks so much to whoever worked on this. We need to find answers.
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