LordChallen

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.

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.

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.

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.

For myself, I am more excited about keto than the probiotics. After my heart surgery my sister tried to convert me but I was scared. My doctors were painting a completely different picture. But my list of aliments got worse and longer. Just remain even close to target goal I was already doing low carb. They gave me the FDA /American food pyramid. I reminded them I was diabetic and so they trimmed the bottom so it looked like a Christmas tree🌲. It still didn't work. So I finally told my endocrinologist that I was doing keto and she told me that one of her other patients had ended up in the hospital that weekend for low blood pressure. Keto will drop inflammation fast. If you are on blood pressure meds you must be careful. But it not hurting you, it's helping you. Just a little too much in some cases. My blood sugar is still a little high, but that is with no insulin. I was really high even with 200 units a day. It's now averages about 140. My heart stats were high even on meds and now they are comfortably normal. I feel good now and I actually WANT to move and exercise. In the next month in will probably start some regular exercise routines. Some people in my condition have completely come off their meds and live a healthy life. I seriously thought I couldn't do it. But once I found the courage to do keto, I believe.

I started keto diet about 2 months ago. I have lost 30 lbs. I have stopped taking almost 200 units of insulin every day. My heart and blood pressure numbers have come back into normal ranges. I am no longer afraid that I'm going to drop dead in the next day or two. And I have high hopes of perhaps living for at least another 20 or 30 years. I have not started my pandas child on this diet yet but I am moving her slowly towards that goal. It has become very obvious to me that so many of the challenges that pandas children have starts in the gut. Even things like inflammation and cancer are strongly connected to sugar and other processed carbohydrates. It seems like an awesome way to live for even a regular person, but someone who is health challenged or immune challenged should absolutely, in my humble opinion, move to the keto diet. It is more likely to remain balanced and reduce inflammation caused by different forms of sugar and carbohydrates. While many humans in America don't seem obviously affected by our new way of eating, many of us are being destroyed by it.

I have found it profoundly enlightening to read about some of the obsessions and what parents thought were associated to them. I know some of these things are pretty personal, but finding patterns and possible solutions can be very helpful. So, my DD is 10. She was diagnosed with Sensory Processing Disorder when she was about 3. My daughter was adopted at birth from my niece. We believe she was exposed to several drugs during pregnancy, and the father was a heavy user. She is "normal" from all first impressions, but she was obsessive about intense events. Like she might get hit by another child and she would not let it go for months. Then it was things like "a child threw up on the rug" and she would never sit on the rug again. But basically, it was very manageable and I that concerned. We had therapists for her for anything we thought she needed. She did seem to get sick easily. And she got strep, and pneumonia, even the H1N1 (we think all did) she started getting a little worst. She also have a couple of stays in the hospital for UTI's and blockages. She was diagnosed with gastro-paresis was one low doses of amoxicillin for motility from a very young age. Eventually that stopped working. So we went to an antihistamine called cyproheptadine. She is still on it. She has been on antibiotics several times, for ear infections, pneumonia, etc. She had blood work a couple of times and developed a phobia of needles. I had major heart surgery she was about 5 and that might have affected her. With the last time we needed blood work, she had a major panic attack, hyperventilating, etc. Mostly, her major obsession was with getting a fever. She needed me to check her forehead at least 2-4 times an hour, all day, every day. Then it was fear that she would throw up. Every 15 minutes she would say she was going to throw up. She got sick at Applebees about 3 years ago and everyday something reminded her that event. She didn't want to go out to eat because it reminded to her of that. Needless to say, we never went back to Applebees. Going from appointment to another would trigger major anxiety, but once there, she was fine. I started her on a powder probiotic, 5 billion, called Culturelle, about 3 weeks ago. She started having better days, but also somethings got worst. She seemed to get more fearful of others and their germs, but less about her forehead. But, she started playing for friends again. I started her on Renewed Life 30 billion, and her anxiety seemed to almost go away. But her ability to process her frustration also disappeared. One night she physically violent with us, the next day she attacked another student (her niece) in school for not getting out a seat she wanted. My Pro-Kids (Pro- 15) got here the next day and I stopped the Renewed Life and gave her the new Pro-Kids. Everything seemed to just settle and calm. She had a wonderful day. She went to her gymnastic lesson without complaint, she played with her niece, (got annoyed but worked through it) and went to the store with us without complaining. She kept saying how good she felt, her stomach didn't hurt. I began to question about things like, "did she feel spoiled" (a common one), did she feel anxious, (very common), was anything reminding her of Applebees, (very common) and she answered "no" to all it. She checked her forehead once today. Even though I'm pretty excited, I know this stuff is never really over. But, the idea that there is hope is strong with me.

Maryangela I had my daughter on the "Renewed Life" (I think) and I noticed a couple of interesting things. Like her anxiety seemed to almost disappeared (compared her usual) and I was really excited. I was calling it her "rage" but I could tell it was her inability to cope with frustration. Like I told her "put it away" and she got mad. Then her older sister came and lectured her (I had left) and she got even more mad. All of this followed the school nurse grilling and interrogating her in the hallway. She couldn't process the frustration. She has had a "sensory processing disorder" diagnosis since she was 2. We are constantly trying to help her process things. This might be talking, tossing things, squeezing things, pro-prescriptive exercises, reflexology, etc. She is a good kid. She is very loving, kind, thoughtful, blah, blah, blah. But there times when she gets really mean, but then she feels really bad afterwards. But this last week, I totally see where a stomach imbalance can cause inappropriate behavior. MomWithOCDSon, Thank you so much for all of your insight. I have tried a couple of different probiotics. I am using the Pro-Kids (Pro-15) and she seems like a million bucks. They seemed to work almost instantly. She said she loves her probiotics, she hasn't had stomachache in 2 days. She is good. She is a little moody, but after everything that has happened I find it very acceptable. But not crazy. If she gets upsets with a friends, she just walks away and does something else. I am very excited, I just hope things continue in this trend. Thanks for everything and I will be around for more insight.

Maryangela, I've noticed some thing like this in my daughter. She saw a video on YouTube where a girl was actually acting extremely spoiled. She constantly tells that she feels like that. And so when things get rough she feels extremely guilty, even suicidal. That was my biggest fear last Thursday, she kept trying hurt herself. There is no reason for her to feel that way.

What do you do for yeast? There was an incident at school today? Her anxiety seems to be less, but her rage is of the chat and quick to flare? I'm going to cut back the probiotics except for the pro-15 kids. Something is shifting, some good, some not good. She takes Advil three times a day. It helps, but not enough.

Thanks for this insight. I am guilty of wanting it to be over soon. My wife and I were broken hearted tonight watching our beautiful daughter turn into some sort of possessed demon. Only to have her later break into tears and sob about how she could not control how she felt and how she acted. Scared the bejesus out of us, that is for sure. I thought she was getting better for the last few days, but in the evenings the anxiety and anger is intense. The School counselor says the have been some of her best days. But she was physically trying to kill herself tonight. Then she is so distressed that she thinks we are disappointed in her in some way. One minutes you trying to keep her hurting herself or me and the next trying to comfort her.

I wanted to ask about extreme Behavior. I have been giving my daughter probiotics for the last few weeks. And I started giving her another one a few days ago. Her obsession with illness and sickness decreased a lot in the morning and noon time. But in the evening she would get very anxious. A couple of things happened today at school and she felt as if she had been humiliated by the school nurse. She came home and wanted someone to feel sorry for her. And we did empathize with her. But it didn't seem enough and she became irritable. There were a couple of other things that should have been minor that also seem to bother her. When I told her that I wanted her to put the computer away at 8:30 she became belligerent. Demanding to know why she should do that and why not 8:45was pretty clear that it would just simply be at 8:30, and I may have raised my voice a little bit. I walked away and let her finish her playtime. But she quit early and came in and became belligerent with my wife. She had apparently forgotten to tell us that she had more homework to do and so my wife told her to get started. I didn't over hear everything but my daughter threw the pencil at my wife's face. This upsets my wife and there were cross words said. Things became physical and my daughter slapped my wife's face. I held her so that she could not do it anymore and she pulled away and ran to her room. I could hear a lot of noise through the door we are beginning to hear metal clanking. She still would not open the door and I became concerned for her welfare. So I actually forced the door open. So my ten-year-old daughter had pulled out the fire escape ladder and was trying to put it out the window. I carried her back to the living room set her on the couch so she fought me for almost an hour. She kept kicking and hitting us and trying to run out the front door. Without getting into all the details, my wife got hurt and was actually bleeding. That is when I raise my voice into more of a loud angry tone. This seemed to settle her down a little bit and I was able to sit back and she sat and glared at us hatefully from the couch. After sitting on the couch, glaring at us, her eye actually rolling up into her head she seem to grow tired and covered up with a blanket. Then she got up and got a piece of paper. And then at some point she started crying. She was sobbing that she was sorry and that she couldn't help it. She said that she was fully aware of what she was a doing but could not control the things that she said or how she felt. And she sobbed controllably that she couldn't fix it and that we would never trust her again. And she cried hugging us and telling us how much she loved us and that she really never wanted to go away from us. Anyway, it was a pretty stressful night. I know the people go through these sort of things with pandas. I want to think that she is getting better, as during the day she is much much better. But at night her anxiety and anger seems more extreme. I almost feel as if something is wearing off, and her ability to process emotions is inhibited. It would be nice if anyone had experience with this sort of thing, if they could share it with me. Thank you.

We have been on Culturelle for couple of weeks. She started getting better, but we also ended 6 weeks azithromycin. So I wasn't sure what to attribute improves Behavior to. She has been on the renewed life for about 4 days. She is getting much better, but still has some anxiety attacks. Today was one of her best days in a long time. She was actually able to befriend someone who is bullying her at school. They apologized to each other for the mean things I have done to each other. But later in the day she had to panic attacks while trying to get to two events she was obligated to be at. I could cut out first one if necessary, because I want to try another one, the Pro 15.

So..... I got the Renew Life 30 billion capsule. I had started my DD with the Culturelle 5 billion powder about a week ago. She was also taking the Luvox 50mg. We had just increased her to 75mg and I witnessed her in school and it scared me. She was like someone possessed, shrinking back in fear as someone walked by, asking me if she would get sick. I called the doc and we moved her back to 50mg. That is when I got her on the Culturelle. I noticed almost instant improvement. She started playing with friends again. But she also had couple extra bad episodes, saying she hated us, etc. I gave her the Renew Life 30 billion capsule 3 days ago. Again, almost instant improvement. A lot of improvement. She would wake and not mention throwing up (her obsession) but then retreat later in the day. I will give her one capsule in the morning and one at night and see how she does.

MomWithOCDSon, my 11y DD has PANDAS. We checked for Lyme came up negative. The OCD has been there for years, but it has gotten really bad in the last year. I was looking at the VSL#3, the 115 Billion. What you think?

What is meant by "rotation." How do you rotate antibiotics?

beenthere, thanks for sharing your story. It already helps me. I think my daughter (11 now) is almost exactly that same situation. At age 4, she was laying down the law on the play ground where older, more rowdy boys were crossing boundaries. Now she cringes in fear every time someone walks past her in school, afraid they will make her sick. We just got the PANDAS diagnosis a couple of months ago. She started having breakdowns at gymnastics. Just finished 30 days of Zithromax and now she wants to play again, but still obsessed about her temperature and germs. But she first got strepp when we she was probably 5. Things got weird, always anxious. Even around to go out and play. But, I think things are getting better. The didn't find it, so to speak. But, my wife recommend it to the doctors, who did an "ah huh!" moment.