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Everything posted by LordChallen

  1. 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 muscle tone, which might be related to poor nutrition. Has anyone run into this, come up with a solution? My daughter recently quit gymnastics, and I think it has gotten worse, but it was an issue even when she was exercising regularly.
  2. 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 because she has PANDAS doesn't mean she doesn't have to build courage and confidence to stand up for herself and seek what she wants. It's been tough; like she was friends with her gymnastic coach's daughter. That friend got into some stuff my daughter didn't like, so they are not friends now. It's been really hard for her to go to gym ever since. So every class is a mixture of "I don't want to go, I don't want to quit" panic attacks.
  3. 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 wouldn't go to some restaurants, checked the locks at night, was terrified of bridges, limited diets, no one could say "blood" without her freaking. I literally had to read her science book to her and replace the word "blood" with "red stuff." But things are much better. There was a freaky event back in October where we went to a restaurant and the wall (2 stories high) was literally covered with spiders. Anyone using the handrail would have gotten hundreds, maybe thousands of spiders on them. She couldn't see them in the dim light, so I told her to stay away from the wall. So she looked closer. Ran to the car and screamed and cried for an hours. We just went back to that restaurant yesterday for the first time. So, even with the PANDAS being low key, it took her months to process that event enough to go back.
  4. 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 balance, but triggers never seem far away until the child has outgrown whatever it is. I take pneumonia and flu vaccines. But I remember as a kid some vaccine injection sites hurt for up to 3-6 month and I didn't finish a single year of high school because of social anxieties, but I loved school by the time I was a 20. Anxiety was so common, I just thought it was a part of life. No one back then considered weird behavior might be due to something like this. I remember once, at about 14, a doctor who worked with muscle testing got me on a diet where i avoided things I was allergic to. It included things like corn, tomato, wheat, and for a about 2 months, I felt like a billion dollars. Even now, I remember it as the best I've ever felt. But I thought was cured and went back to eating normal. Moral of my story, if you can reduce the triggers, and assist the detox, life can be good.
  5. 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 hamper us too much. To me, most mental issues come down to identity. If something in my daughter's day implies that she is stupid or fat, she gets super distressed, even suicidal, filled with rage, and then depression. This is tricky because kids aren't dumb. If you do too much for them, they think they are stupid and that can trigger a downward spiral. But, if you don't do enough, or imply that they need to do more, it can trigger that they are not loved, and BOOM. I think, because of the increased sensitivity because of the over-active brains stuff, destructive mental loops can be very harsh on these kids. I try to set rules that are "necessary" and be pretty lax on other stuff. My daughter likes to change clothes 10x a day, then complain there isn't anything to wear. Convincing she that wearing something twice, if worn for a short time is OK, has been tough, but laundry is once a week. She has to work within that. She doesn't like it, but she doesn't freak out anymore. I don't lie to my kid, but I think of things to say that can build her self esteem back up. Getting her to realize that she WILL get her feelings hurt and need to continue on has been tough. Just today, some off handed put down from her cyber school teacher had her in a tizzy for 15 minutes. But, it was only 15 minutes and not 6 hours (or even days) like it has been in the past. Suicidal feelings are actually confused survival instincts. When the consciousness feels like it has changed too much from what it was, or has been rejected by those it loves, it wants to hit the reset button, (assuming its self immortal (which is another discussion.)) So, the suicidal expressions can really require some quick reassurances that you still love them and even if this stuff is really crazy, you will always love them. It can seem like you are carrying a lot of their personal responsibility for self preservation, but having gone through this, that is something that you can teach later.
  6. 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 only lasts about 4-8 hours. When I would have bad flare ups, I would take about 800mg (4 tabs) once, and then be good for a while. My daughter is on 200mg 3 times a day. It seems to affect her moods for the better.
  7. 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 the dead germs. Learning detox techniques, like epsom salt baths, and other creative methods can help. It's not a cure, but it can assist in the detoxing of the body, which is why the immune is triggered in the first place.
  8. 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.
  9. 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 relationship. I'm not really strong with BBB science, but as I understand it, once the germ has jumped the fence, the immune system reacts to it, whether dead or alive. However, it cannot get rid of it, whether dead or alive, and that is the problem. The area becomes inflamed and that causes the problem. I have a sensitive fever monitor (thermometer) and while my daughter's forehead might be normal, the temples were always in fever or near fever temps (almost a year that way.) That has gone away and now it's usually the same as the forehead. Everyone is different, so the set of remedies is usually unique. Supporting communication from the stomach to the brain can reduce anxiety. Assisting detox, by salt baths, avoiding milk products, watching for triggers such as mold and metals. The reason many people on here will claim vaccines are bad is they have the experience. Some bodies simply lack the ability to get of some toxins. It's not the germ, or denial that humans can normally detox this stuff, but if someone has a compromised immune system, they don't stand a chance. Like I said, even if, (maybe especially if) the germ is killed by the abx, the way the immune system reacts can be a disaster. That is one reason abx can make it worse. Some dude once said, "The germ is nothing, the terrain is everything." That is the case with this. The germ is just the trigger. The rest is body response, and just killing the germ doesn't mean that the body got rid of it. That can take much longer. Protecting against future triggers the key to happiness.
  10. 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 the stomach and provide enzymes to communicate with the brain. A healthy gut will protect the brain much better, and your efforts will be more rewarding in that direction. Killing the germ can be helpful, but it comes back. Building a healthy blood/brain barrier is the best defense. (yeah, I'm pro-wall.) Anyway antibiotics can give you a break, but they don't solve the problem. And, if some on this site are to be believed, antibiotics can make the problem worse. My daughter, (11) takes Pro-Kids, Culturelle Packets for kids, and CBD oil. She wants to go back to school, goes outside to play on her own for short periods of time, goes to more public places. I adopted her at birth and she was a drug baby, she has SPD as well. Still has some panic attacks in math, but things are really looking up.
  11. 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 inflammation causing the muscles to contract. My daughter is always bending her neck trying to get the tension to release. The stomach aches are greatly helped, IMHO, by alka seltzer gold. (Might have to order on-line.) My daughter would be doubled over, screaming in pain then be just fine after a 1 tablet (half dose.) The stomach aches were most often caused to anxiety of leaving the house. I think the best thing I have done is the probiotic (psychobiotics) but it takes time. The stomach aches have almost completely stopped. Pro-Kids Culturelle packets for kids
  12. 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 "alka seltzer gold" when she was hurting. And that was everyday. But it worked miracles. But slowly, she doesn't need them. She is also on Nexium 2x a day. The burning is just too much with one, and even then, a TUM once in awhile. But the cramping and "pain" is rare now.
  13. 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 attribute most of her progress to the probiotics, Culturelle and Kids Pro. Plus, a small dose of CBD oil. She isn't 100% but talking about wanting to go back to school next year. Which is fine, if I trusted the schools more than I do.
  14. Still wondering if anyone has gotten into and researched the body's physical reaction to PANDAS, as in the types of chronic muscle tensions.
  15. I've read a little bit about this but wanted to narrow the focus a little. My DD recently developed tics, or chronic neck tension where she is constantly stretching her neck, trying to get the tension to release. Using some "pain eraser" techniques I can get the tension out for a little while. Usually, I do neck massage work just before she goes to sleep. But it becomes very distracting during her school time. Thinking of myself, I used to have this exact same thing from about age 9 - 30. Then it went away. I don't want it be that long it for her. Sometimes the tension would get extreme I could get intense headaches, resulting in vomiting, which would relieve all sorts of tension around the neck and head. Has anyone focused on this, and have they found remedies for it, and have they learned what causes it? No matter how much we physically relax the muscle, there is a brain signal that is constantly sending out an "intention." Thoughts, wisdom, ideas, prayers, welcome.
  16. I apologize if I gave mis-information. I use the Pro-Kids. Given how extreme things were and how bad they can get, I feel very blessed with this products. Things have mostly returned to normal with mildly more intense environment if she gets upsets. It's stuff that isn't like her, like strong back-talk, stumping off, slamming doors, etc, but it usually ends with 20 minutes and she is willing and eager to make up. Nothing like attacking us, trying to run down the road, wanting to die, etc. She was exposed to some pretty hurtful bullying toward the end of last school and began to panic everytime we talked about go back. She can go out, if I open the doors, play at a friend's house, and doesn't obsess like she was. But PANS is still there, under the surface. She says that she hears the voices telling her that she will get sick, but she can usually resist them. In general, she gets a little better every week. https://www.walmart.com/ip/Culturelle-Probiotics-Kids-Daily-Probiotic-Dietary-Supplement-Packets-30-CT/16608856 https://www.amazon.com/PRO-Kids-Childrens-Probiotics-Survivability-Recommended/dp/B00MVX0MKW/ref=sr_1_1_sspa?ie=UTF8&qid=1532808141&sr=8-1-spons&keywords=pro+kids+probiotic&psc=1
  17. It's been a while since I've posted on here. My DD10 had a couple of extremely scary episodes a few months back, Apr-May 2018. Our Primary knew a doctor that specialized in PANDAS. So we made an appointment. DD didn't like him, and he prescribed Amoxicillin and things got even worse. We put her on Luvox 100mg. She had a couple of scary episodes at school and I suggested that we slow the Luvox. I started her on Probiotics that I learned about here. She has gotten much better. Her obsession(s) have lessened a lot. Things can trigger her anger, but that might be mostly normal stuff, like social injustices. Calming her down is a challenge, but things have never gotten as bad as those first couple of times. This psychobiotic/probiotic helped the most https://www.amazon.com/PRO-Kids-Childrens-Probiotics-Survivability-Recommended/dp/B00MVX0MKW/ref=sr_1_1_sspa?ie=UTF8&qid=1532808141&sr=8-1-spons&keywords=pro+kids+probiotic&psc=1 This one helped a lot. https://www.walmart.com/ip/Culturelle-Probiotics-Kids-Daily-Probiotic-Dietary-Supplement-Packets-30-CT/16608856 In the 2 months we started these she is mostly back to normal, except when things get really stressful. She has regained her weight, can play at a friends house, can eat some restaurants, etc. But school, just the mention of it would send her in a panic attack. Her anxiety due to PANS might be less, but she was getting bullied towards the end of school. Kids would tease her about having to go to the bathroom all the time, and "why don't you just kill yourself" sort of comments. So, we are going to homeschool her for 5th grade. The relief seems to have had an impact on several things. She is very strong in her opinions, but can still be reasoned with most of the time. But she is still pretty sensitive to any criticism. Anyway, probiotics are not a cure, but as far I am concerned, they are the best treatment. Hopefully, when puberty kicks it will go away. The most helpful research, IMHO, is on psychobiotics. This stuff starts in the gut.
  18. Seems high to me, but cannot say for sure. My daughter, 10, was one pill, twice. Not sure what that means, though.
  19. Maryangela, I am sorry that I made that confusing. Pro-15 and Pro-Kids are sort of the same, but one is for kids. I think they have the same elements but different doses and delivery.
  20. Without going back and rereading what I might have said about Probiotics. . . . . in my humble opinion, they are a major key to getting this stuff under control. I'm not a doctor, and I don't even play one on TV, but the probiotics that are also called Psychobiotics, play a major role in the stomachaches, the anxieties, the anger, and obsessions. I adopted my DD, she was my great-niece, and we knew that there was some drug use involved during pregnancy. We were vigilant from the beginning. She was diagnosed with Sensory Processing Disorder at about almost 2 years old and we have been working with her on that stuff since there. But almost from the beginning, there has been stomach aches and pooping issues. We thought we had things handled things until they recently got much worse and her anxiety was out of control. Panic attacks at school, in the car, in the stores, at the therapists, etc. That is when the doctor tested for strep and diagnosed her with pandas. She was always getting strep. Anyway, the first probiotic (Culturelle) seemed to help overall. The next probiotic (Renewed Life) I gave almost completely killed the anxiety, but her ability to process frustration and injustice almost disappeared. That was a couple of days that ended in nightmare and the regretted behavior. The third probiotic (Pro-Kids-15) reduced anxiety and obsession and actually improved her ability to process frustration and injustice. She has had a couple of panic attack at school and she couldn't handle the school field trips, (which I drove her too) but overall is doing well. No near-psychotic moments where she tries to hurt herself or run away. I just just can't wait until school is over. I hope to use the summer to help her heal and prep for the next year. And doctors are great people to have your team, but I have found that I can be just as effective in helping my daughter as they can, using safe, non-restricted methods. My DD's doctors are good people, but I think it is impossible for them to care enough to treat this sort of thing. It takes parent(s) that care and know what is going on. Thanks for letting me share.
  21. bobh, Any insight on "why" puberty influences pandas? The body is complex and I know that there are literally thousands of changes going on, but has anyone narrowed in on some ideas about why? Like boys and girls have different hormones changes, but are they both effected equally? Does anyone know about this? I haven't even begun to look into it. My daughter is 10, but honestly, I think some things got worse with me at puberty. Like shortly after, about 15 to 17 my face turned very red, something akin to a mast-cell activation. But the red face happened at the same time I had a near-death episode by nearly drowning. When I was cleaning myself up, everyone kept commenting on my why was my face red, and it has never gone away. It has lessened some in the last 30 years, but still red.
  22. patmom, I can only imagine your pain and that is bad enough for me. Losing your child in this manner has got to be the more horrible thing. I'll be brief. I'm sure you will become an expert in your own right soon enough. About the vaccines. . . . The word in the underground is that the body is trying to get rid the toxins. The toxins used in the vaccines are supposed to be benign, and probably are. But they are designed to basically stick in the body and not get flushed out by the body. Some believe, myself included, that things like what is happening to your daughter is because the body is confused about the toxin. It isn't trying to get it out, but it is also reacting to it. I know of no cure, but if you want the best results, IMHO, look into immune organizing and support, and detoxing. But, be careful with the immune support, you don't want to throw 10,000 units of Vitamin C at it as that might over activate the immune system. I am sorry this happened to you and your daughter.
  23. I'm 45ish and participating here mostly because my daughter (10) has been diagnosed with pandas/pans. Oddly, her story is very similiar to my own. I was never able to finish school. About 5th grade I just sort of lost it. I was straight A's in 3rd grade, but couldn't pull off a single passing grade in 8th. High school was a joke, I dropped out every year about halfway through. But, I wasn't uneducated, I loved to learn. The day after my class graduated, I went and got my GED. But looking back, I can see I had many of the symptoms we assign to pandas. And to this day, I know I have some auto-immune dysfunctions. I had massive headaches at least once a month since I was 3, until recently. And throwing up was the only way to make them go away, (had to be nature reflex through, no cheating with the fingers.) At 12 I began getting in to natural healing and self-help. Coping was tough, but . . . . I just thought it was part of the game. I'm getting old now and still know I have issues, but do OK. I've struggled my whole life without really having a name for it. I'm not against modern medicine, but I feel that old medicine is being overlooked. Things like salt baths, bone-broth, herbs, teas, nature walks, group support meetings, etc. I really believe that the bottom line in all of this is a healthly gut and immune system. Many modern medicines don't help in that department. They might kill something or suppress something, but they don't really "heal or support" anything, (except for probiotics, they are awesome.) Supporting and healing the right things is more likely to help us then killing the bad thing. Things like detox are basic concepts that I try to practice a little bit everyday. And sugar. . . . . is of the devil, in every way but taste. It's not a natural part of the human diet, (mostly) and diabetes type 2 and type 3 is natures way of saying "no more." Thanks for letting me share.
  24. I use cayenne pepper. It's pretty spicy and isn't for everyone. I like to make some bone-broth and put like a tablespoon of cayenne it, and usually chug it. Some people make a tea out of it and that isn't bad. I usually like to drink it fast because it likes to float to the top. I use cayenne tinctures too, but they can burn. Just an idea. Not for kids though.
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