LordChallen

And just for the record, what do you think the formula for this success was? My DD (16) is functional, but barely. She goes to school about 1 day a week, but maintains honor-roll grades. But she wouldn't go on cloudy days, or if one of her friends were sick. She has really bad sleep issues. She cannot go to sleep on her own until she is exhausted. But once asleep, you cannot wake her up. The only times she goes to school without drama is if she stays up all night. She does great at school that day, but then it so exhausted and she practically passes out at the door. Most of the time, no tics. But somedays they are so bad it breaks my heart. A normally beautiful girl reduced to fetal position rocking, whistling in rhyme to her finger snaps and face slapping and ear pulling. I have her on some fairly functional supplements and one anti-OCD med. But it's hard to get her to take them consistently. Her defiance can get intense, so we offer and recommended. New drugs are hopeless. Thanks

Thank you, CarolynN. It's some 3 years after your wrote this, but it's hitting the right spots for me. My gut has been nagging me that my daughter (with PANDAS) OCD gets worse when she missing her Claritin. She is on two 10mg doses a day. Her allergies are so bad. I buy Puffs Plus but the large 8 packs every few weeks. I've never seen anyone go through that a many tissues. I hate that she is on two Claritin a day (doctors orders) and she has been doing it for nearly 10 years. I don't know if you have heard of the MTHFR genes, but she had both mutations. We try to limit the about Folic Acid she takes, but it is tough. Everything has it.

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 monitoring cables and if certain information is traveling cross the line one or the other, or even both can become upset. What brought my daughter back from being a wraith (little lord of the rings reference) was what is called "psycho-biotics." They are a special of set pre/probiotics that keep the stomach/brain connection. The nightmare episodes of horrible mood swings almost disappeared to what could be excused as typical pre-teen age girl tantrums might start with slammed bedroom door and an apology 30 minutes later. She is on a OCD med, but minimum doze. I can recommended the probiotics, but every kid is different not always agreeable to the same probiotics.

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, found that I had a bi-lateral hernia. They hooked me up with a surgeon, who politely explained that the hernia was NOT causing my pain. By now, the pain was causing sciatica nerve pain down my right leg. So I went to the chiropractor, who made pretty quick work of the nerve pain in my legs. But ever time I laid on her table, I was reminded that my stomach was still in a lot of pain. In an effort to control my diabetes better, I started the Intermittent Fasting Diet, 16 hrs no eating, 8 hrs eating. I lost about 20-30lbs in a few months and a large bulge appeared on my naval. It hurts, a lot. Every time I stood, it took a little air-sucking before I could continue on. About the same time, the skin began to peel off my hands and feet. They began to dry out, my urine burned like the fires of , I was tired and weak. I went to the urologist, he suggested that it probably wasn't kidney stones like I thought. I assumed that it must be my diabetes, which was weird because my numbers were pretty good and I didn't have to take insulin to keep them in range. At this point, some have suggested that I might have shifted to a diabetic type 1.5, which is sort of like both 1 and 2, where I am resistant and don't create insulin. My body was probably going into keto-acidosis. Being diabetic makes me vulnerable to infections, and I don't really know when this cyst started. I had surgery on a similar cyst on my neck about 14 years ago. I have never been tested for strep, even though I test my daughter monthly or more. I got really concerned about the huge lump on my belly. I didn't know if it was a strange type of hernia, but I didn't really suspect infection right away, (it was huge.) Emergency Care gave me antibiotics and a white-head developed on the cyst, and it began to drain. . . . . . for 8 days. I won't get into how gross it was. A new CT scan shows what might be a huge cyst snaking around my insides. Two doctors called me today to make follow up appointments. I just finished the last of the antibiotics today and most of the pain in my stomach has gone. I still have a pain on the lower right side, like something might still be infected. I don't know if this is the source, or something not yet drained. Oddly, when the surgeon did my bi-lateral hernia surgery in Dec 2019 he made the comment that he had to made two extra incisions because I had so much "scar tissue" around my naval. He didn't say anything else, but that is exactly where this cyst is.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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