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LordChallen

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LordChallen last won the day on February 27 2019

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  1. My daughter gets the stomach aches and the headaches. I use Alka-Seltzer "GOLD" as my magic trick for the stomach aches. But she is on a daily dose of Miralax. This seems kind of tricky to find off line but someone recommended it to me a couple of years ago. I just got my new case of 4 boxes. The stomach and brain are connected through a large nerve called the vagus nerve. What the brain is feeling, the stomach is feeling, or should be. I've found through research that kids with PANDAS tend to have a deficit connection between the stomach and the brain. The nerve is a like a set of monito
  2. I was never diagnosed with PANDAS, but my daughter is, and I think (at 48) that I do have it, too. I went through everything that my daughter is going through. I dropped out of school because I couldn't handle the pressures, but tried to educate myself. Anyway, I have my share of issues complicated by my suspected un-diagnosed PANDAS. Like 5 heart-valve by passes at 40, really bad diabetes, mental health issues. But . . . . ., about mid-summer of 2019 I was having pain in my lower stomach. I dealt with it for a couple of months, but the pain got rough. I went to the ER and they did a CT scan,
  3. I've tried to research this in Google, then here. There are hundreds of references where people comment on popping joints as a tic, and a bunch of references where it is creaking and pain in joints. I've noticed that even those I have been basically strong my whole life, I have very poor muscle tone. I've snapped hamstrings from over exerting. Now, my daughter, is constanting popping her joints. Not so much her knuckles, but like her shoulder. She can roll her shoulder and it will pop and snap dozens of times, over and over. And it hurts. I've come to believe that is due to poor musc
  4. I think the shyness is purely human. It's the lack of confidence that comes with knowing others might judge you. It's been tricky trying to keep my child's confidence up and trying to correct bad behavior and teach valves. During flares, I don't try to teach, I just try to calm. During stable calm, I might bring up lessons. Like, for me, bringing up the video of Pink stopping her concert to tend to a crying baby. Humility. Also, everyone has their issues, we must all learn to be brave and confident in spite of weaknesses. So, I don't let my kid think she is any different in this case. Just bec
  5. mdl, We knew our daughter had processing issues when she was 2 years old. But we never really thought of pandas. I think of some of these conditions are connected to a compromised, or hypersensitive immune system. So PANDAS is probably a side effect of something else, rather then the cause of all of this. The OCD was sort of as you described. Like if a child hit her, she might tell that story as her greeting statement as if it just happened. "Ellie hit me, right here on the arm" for months after it happened. But that might be the only sign. When the PANDAS hit, she suddenly woul
  6. The science about what is happening with abx and triggered reaction isn't real solid, as far as I know. There are two camps on this. People who just get over it and move on, and those that continue to struggle with it. Those that just get over it, don't seem to have a problem with the vaccines, or the abx. And they wonder what is wrong with the rest of us. Those of us that "don't just get over it" begin to view abx and vaccines as tools of the devil. So it's not cut and dried. Which one is your child? I've think that the immune system can be tamed and brought back into bala
  7. When I was young, I used to take apart old computers, turn them on, and then watch what happened as I took my ground probe and touched different circuits. I could get all sorts of colorful patterns on the screen, but oddly, never the same pattern twice. I think PANDAS is a little like that. The immune system goes crazy and generally in a predictable way. But it's also different with everyone and even within the same person, it changes. I know my daughter has pandas, but right now, I wouldn't say that she is really OCD. She has been really bad in the past, but right now, it doesn't ha
  8. IBUProfen is sort of like a sponge to certain inflammatory agents of the body. There is a group of enzymes called Cytochrome P450 which IBUProfen tries to deplete. P450 is sort of like the ninja squad of the immune system. So, IBU soaks up these inflammatory agents and that keeps the inflammation down. Of course, the body tries to maintain a level of these agents, especially when needed. There is no data that I know of that says that IBU stops working over time. Perhaps the body tries to adapt and create more, but I haven't read anything about them. As far as short term, IBUProfen on
  9. IMHO, abx cannot help when triggered by a vaccine. The problem is in the immune system, not the germs. The immune system is freaking out because it cannot detox the offending substance. Abx will not that help. When the problem is triggered by strep, then sometimes the abx can help by killing the bug, however, in some cases, the immune system cannot expel the dead bugs and they might as well be alive and well, sometimes even worse. Because this is directly related to the immune system, everyone is different. But if someone gets worse after taking the abx, chances are the body cannot detox
  10. And normally this is an uncomfortable subject. For my part, understanding the nature of the immune system is how I beat this for my daughter. Understanding that something as innocent as a germ or vaccine can trigger this is part of the cure. Thinking this is a germ you can fight will only magnify the problem.
  11. I read through some of the comments, Jeremy. Those of us "in the know" will pretty much say what you don't currently share an opinion about. Things like vaccines can be major triggers. It's about the immune system and the ability to detox. Pretty much comes down to that. Things like molds, metals, and germs can trigger reactions. The antibiotics can make it worse because the immune system is a complex system of biological agents can be affected from the killing off a wide band of microbes. The whole thing comes down to the relationship between the stomach and the brain. Heal that relation
  12. I'm going to start this post with IMHO. PANDAS is pretty much related to strep. But not all kids with strep get PANDAS. Antibiotics can help in the short term, but damage has already been done. The germ has jumped the blood/brain barrier. Once that has happened, antibiotics can't get rid of it. Of course, getting it out of the rest of body will help, but the problem is there to stay. The best thing to do, IMHO, is to rebuild and reorganize the immune system. Help the body detox with limiting foods and taking salt baths. But probiotics, or prebiotics, or psychobiotics can help rebuild
  13. My DD(11) was getting headaches, but because I have been through this myself I was went straight to massage. She would get pain in her back and neck. It happens everyday, and it's a little annoying trying to keep up to it. But if you address the spot that the child is complaining about, you will usually find that muscles have a weird grainy feel to them. You can almost imagine thin paper crumpling. Press and stretch the muscles for a few minutes until it grainy feel goes away, or the child says that it is better. It's easy to say that it's anxiety, but just as likely brain inflammati
  14. Research "psychobiotics" because they are aimed the gut-brain connection. They have had awesome impact on my daughter, but every kid needs to be fitted to the right probiotics. Some will cause PANDAS to flare. Ones I use is Culturelle for Kids packets (1 pack per day from Walmart) and Pro-Kids (3x a day) from Amazon. Things are not cured and I still have struggles, but she is SO MUCH better. Almost seems normal. Anger can be a little extreme, but usually understandable. Frustration with math and handwriting not as bad, but still there. Abdominal pain is basically gone. I was using "a
  15. I've had my DD on probiotics for about 1 year now. All the difference in the world. After a couple of very scary events where we feared for her and ourselves, things are doing pretty good. I'm homeschooling her (cyberschool) because some of her OCD behavior is still easily triggered. Getting her to leave the home was a chore. Now, however, the panic attacks are rare. The moods could just been strong willed 11 year old kid. She tries hard to keep up with housework and school, but gets a little lazy from time to time. Like 10 towels a day from showers that I have to pick up. I attribu
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