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Everything posted by Missmom

  1. My son age 16 has been dealing with pandas since age 12. He started with a few tics and mostly germ ocd. He has been taking augmentin 500mg 2x day since age 13. He was doing quite well and the tics only return now when he is stressed for some reason. This past summer he got beat up by one of the boys at school and immediately started having tics and issues again. Once school started again I could tell his symptoms were worsening but now he is in a full blown panic. He started with these intrusive thoughts that he cannot seem to get past. No matter how much "proof" or common sense I provide him he is just obsessing over this one thought. Like you, he doesn't want to discuss these thoughts with a therapist and would never act on any of it, but he can't get past this. In my opinion it is not even that bad but in his mind it is the worst thing ever. It is taking over his life. All he does is pace around, not eating much, and not acting like himself. I just started giving him saint johns wart. It helps a little when he takes it but seems to wear off after a few hours and directions say to only take 3x per day. His doctor said all I have to do is call her and she will prescribe a low dose ssri, but I am very hesitant to start that due to side effects. We don't have any good therapists in the area who specialize in ocd and I don't think he would tell them even if we could find one. I just don't know what else to do. It is wearing me down just trying to help. We have tried watching you tube videos of people who got over this but that hasn't helped much either. One other supplement that I am considering adding is L- theanine, it s totally natural and safe, but I am not sure it is strong enough. Please keep us posted if you find something that helps so that we can all help each other here. Thanks
  2. My DS had mono a couple of years ago and i didn't see any spike in symptoms as a result. As a matter of fact, when he had the symptoms of mono (fever, tiredness, sore throat) his pandas symptoms disappeared ( tics, anxiety, ocd) once mono resolved pandas symptoms started creeping back. Then started his antibiotics again.
  3. We are in the same boat as you. DS now 15 has been on treatment augmentin for 3 yrs now. He is stable and going through puberty so this summer we have decided to try stopping his abx. I started by reducing the daily dose in half for about a month then I completely stopped the antibiotics and only give a daily probiotic. So far so good. We started reducing dose at end of April and had stopped completely by end of May. He did complain of sore throat a couple weeks ago so I gave him a week at full dose just to be cautious but then stopped completely again. He goes to see our pandas doctor in a couple of weeks and I think she will be pleased with his progress. She has always said that many of her patients improve once they reach puberty.
  4. Here is an update, I got tired of waiting for the test strips to get here, so I went ahead and just took him to a family clinic. Didn't go into the whole pandas thing figured they would think I was some Wacko parent or something, said I wanted to check for infection and I mainly just wanted a test for protein or blood in urine. They ran the test and said it was clear. I feel a lot better now but still will check it every so often. The test strips have finally arrived and now I can just check it myself. The times I have asked him to show me after he goes it has been really foamy though. It could be semen I guess. I am a girl so not much experience with any of that. Thanks for the updates and mayzoo I think I would go see a nephrologist just for piece of mind if nothing else.
  5. Ok, I know this is an old post but I am sorta freaking out right now. My son was diagnosed in 2012 with pandas and demonstrated tics and anxiety,cod and all the other crap that goes along with it. He has been on long term augmentin and is doing much much better now. He just turned 15. I have stopped his antibiotics several times but have always needed to go back to them when symptoms returned. We are trying to wean him off again now that it is summer. He looks so much better now than he ever has so we are keeping our fingers crossed on that. Here is why I am freaking out now. Back about three or four months after the pandas diagnosis I took him to a urologist because he was complaining about once a week he got sharp pains in his side immediately after urinating. It wasn't every time he went and it wasn't consistent. It switched from left to right side as well. I couldn't help but think it was somehow connected to pandas. When we went to urologist the urine was clear and the kidney ultrasound looked normal. The urologist said probably spasms. We started on long term antibiotics for pandas and he didn't complain anymore. Well now it's three years later. This past Christmas he said his urine looked bubbly. I took him in to urgent care and they said he had slight urinary tract infection. I asked about protein levels in urine and she just said it was trace amounts and nothing out of the ordinary. So we changed abx for 10 days to treat uti. Well now I still see the bubbles. I asked him to show me after he went to the bathroom several times I have noticed bubbles. He said they are probably just from standing up and going but the bubbles seem to take a long time to go away. The more I read about glumerlonephritis and its relationship to strep and autoimmune disorders the more scared I get. I haven't taken him back to the clinic but I did order the urine protein test strips online and as soon as they get here I am going to test several times myself. My question for any of you is about any relationship between your pandas kids and protein in urine. Do antibiotics help or hurt this? I know antibiotics can have an anti inflammatory effect so would they have helped all these years. Any input about this would be appreciated.
  6. It sounds like your dd is super smart. She has to be to try to figure out how to get around all of these rules. I don't have an answer for you as to if this is related to any illness, but to me it definitely sounds like she is bored. She is looking for attention and is doing everything she can to test your patience. This is her game. She is always trying to stay one step ahead of you with all of this rebellious behavior. It sounds like all of the obvious pandas/pans behaviors have diminished. Before when she had all the obvious symptoms I am sure she was also seeking your attention but in a different way (rages, etc). I think she is being selfish and doesn't want you focusing any of your attention on any of your other children and their medical needs because that would require your time and attention away from her. My suggestion is maybe try to find something for her to do that would take up a lot of time and keep her out of trouble. I am thinking a sport of some sort where she would be with a coach and/or a team. My son (14 almost 15) loves golf. He spends hours on the golf course playing and practicing. You could get her a phone but only one like a flip phone that does not have access to Internet. Not saying golf is the answer, but maybe basketball or snow skiing. Something that would wear her out physically during the day and keep her busy around many positive influences. I would also give her something like melatonin at night so she can rest comfortably. She needs a good base of friends who she can rely on to do normal teenage activities like going to a movie, or hanging out listening to music. She is headed down a very bad road right now and she needs to know that this is not fun and games. She could be hurt or killed or put her family in danger. I understand you homeschool and so that is limiting on interactions but has she shown any interest in any type of activities at all. Things like gymnastics or cheer or church groups or softball or swim. Anything to motivate her to be her best. I am sorry to interfere, but I sense your desperation and I would be worried sick if I were you.
  7. My son used it and had no adverse side effects. I checked with our pandas doc before I gave it to him and she said that it should be fine but to just stop using if anything out of the normal happens. We had no problems.
  8. I got the nasty cold last week as well and I kept my distance from my son while I didn't feel well, but I also reassured him that I did not have fever and I was prob not contagious at that point but I still " kept my distance for a couple days. I also reassured him that he is on abx so at least he is somewhat protected just in case it was bacterial. He did not catch whatever I had. I wouldn't make a big deal about it, and just see if she gets over this one in a few days. Try not to stress out just yet, you will run yourself down making your own immune system vulnerable. I'm sure she will be fine. Happy thoughts. Merry Christmas.
  9. Germ fears are one of my sons biggest fears. He won't eat food cooked by anybody he doesn't know well, because he doesn't know how clean they are. He washes his hands two or three times before he eats, and he always worries about getting sick. Yes, I have always said to wash hands and stuff, but kids hear this stuff everyday. Doctors tell kids, "wash your hands". Teachers are constantly spraying Lysol, and handing out sanitizer. There are signs in restrooms saying wash hands. Yes, this is a difficult cod behavior to stop. How do you say, oh, you'll be fine, or it will be ok. When everywhere you go there is sanitizer. Even tv commercials saying to avoid flu you must wash hands. I hate to say it but in a way if you are trying to head this off you are almost fighting a losing battle. With my son I know this is ocd, and I know it can turn really extreme, but as long as it doesn't interfere with his life in a major way, then I am almost ok with this one if it will help keep him from getting another virus and flairing again. I know this one is a double edge sword.
  10. Just a thought, what if you go, but have a backup plan. Such as, if she gets out of control you and her could go check into a nearby hotel. That way you avoid any embarrassment it might cause to be around other people who don't understand. My son is now in 9th grade and he loves doing speech and debate tournaments with his school. Most of these tournaments require an overnight stay. He really wants to be there to hangout with his friends and have fun, but his ocd and nightly rituals cause him so much anxiety that he is overwhelmed. Usually what I do is chapparone and get my own room. This way if he feels he can't stay in the room with the other boys then he can come stay in my room just down the hall in the hotel. This is like our backup plan. It all depends on the situation. I always feel it's best to have a plan b.
  11. Thanks chemar, that is the first sort of confirmation I have had that the dialation drops may have triggered this.
  12. we see an ophthalmologist, as opposed to an optometrist, they always dialate our eyes unless we specifically request not to, so they can check the back of the eye for any damage and such.
  13. My son has strep induced pandas, but just wanted to let you know he got his first major flair in sixth grade he was almost 12. It started when he woke up one morning and had a head nod tic that started overnight and he could not stop. He is now 14 1/2 and doing much better but he still has mild flairs. He is on abx and I feel that that has helped keep this from getting really bad. It has been 2 1/2 years for us and it is still not over. Hoping it will subside soon.
  14. She could also be having panic attacks which can feel like shortness of breath/racing heart. Also, anxiety causes this which is one of the main symptoms of pandas/pans. I had a lot of anxiety when I was just out of college/ just married/ and starting my first real job. It all hit me at once. I really felt like I couldn't catch my breath. I was trying to take deep breaths like yawning and couldn't do it. It was very scary. I went to my doctor and they ran a lot of tests only to tell me it was most likely anxiety. Well, ya think..... Funny thing was, I didn't think I was stressed at all. Life was good. I thought to myself, this doctor is crazy, I am not stressed or anxious. Yeah right. Anyway, my point is your daughter may be feeling really worried about something, maybe bad dreams, scary books or movies she has seen, or something she has manufactured in her head (pandas kids are good at that). Maybe she is worried about getting ill or the health of a family member. Try to ask if she has been worried or obsessing about anything. Believe me it doesn't take much in some people.
  15. Thanks for your responses, the blinking seems to be a little better today so I am hoping this is a mini-flair. I still don't know if this is just a coincidence but next time we will prob. opt out of the dialation just to be safe. I have been on this board for over two years now and just have never seen this topic discussed before.
  16. I know this seems like a crazy question but last week my son had his annual eye exam. The past couple of exams he had in previous years they haven't dialated his eyes because he would be returning to school all day, but this past week I let him stay home all day so they went ahead and dialated his eyes. I really didn't think it would effect his pandas, because he has been doing pretty well. Since then though he has started a tight blinking type tic where he closes his eyes really hard. Other symptoms have crept in as well and today he felt "fidgety". He said he couldn't sit still. He shows no signs of illness and no one in the family is sick. He could have been exposed or on the verge of getting an illness but I just wonder if it has anything to do with the recent eye dialation. Just seems odd that it is an eye related tic that has cropped up. His usual tic when he is ill is a head nod. He is taking augmentin so I am just continuing with that and hoping this flair is short. Just wondering if anybody else has noticed this before. Thanks.
  17. Just wanted to let you know that the same thing happened to me when I was about the same age. I remember not having a period for about three or four months. I was about 14 years old and was not at all sexually active so that did not play into it. Then just as quickly as it ended it started again and was normal. I always had cramps with my cycle and I was also on the slim side although definitely not anorexic. I was what my parents called a "late bloomer". I am totally normal and have never had any issues and have two wonderful children. I hope this resolves for your daughter but try not to worry about this too much. It is probably fine. Only other thing I am thinking is maybe a cyst on her ovaries. Ask her if she is still experiencing cramps around the time of month of her cycle. I did have cramps just no period when this happened to me.
  18. I hate to say it, but it truly is a trial and error, and wait and see game. At least you were given antibiotics and she has improved. That is a great sign. For many of us tics will come and go and change, but eventually subside. They are usually the first symptom parents notice because they are so obvious. Other psychiatric symptoms are often explained away or excused early on as being mood swings, or tiredness, or teenage hormones, or terrible twos, etc..... Tics are so evident that when they start suddenly you know something is wrong. I don't really have much to add, just wanted to say I hope you find answers.
  19. It could be viral since a lot of viruses spread quickly in school.
  20. I am going to pm you. Look in your in box top right corner.
  21. I would bet that even though the strep culture came back negative your sons immune system is still highly activated. I believe it takes about three weeks for any antibodies that your system makes to actually weaken then eventually die off, so that may be the reason your son still has the symptoms or possibly you are dealing with more than just strep. I don't have experience with any of the supplements you mention. Give it a few weeks and see if you start to notice a reduction of symptoms and if not you may need to run further testing. Sometimes it is good to test everyone in the household as well just to make sure there are no strep carriers that you son could be reacting to.
  22. Have you had another appointment with your doctor? Just wondering if the antibiotics have been changed. I think you will find that your son will need at least thirty to sixty days at a stronger than average dose. Just push to get him back to baseline before you start thinking about a maintenance program. Your son will get better and it is great you have a supportive doctor there who is willing to help.
  23. I would think anything that activates the immune system could potentially be a trigger but maybe not the initial cause. If it is not strep related it would fall under the pans category.
  24. Could be stress from school starting, less sleep due to having to get up earlier also don't rule out any seasonal allergies. Try giving an antihistamine like benedril before bed. It will help him sleep better and relax his system as well as help with seasonal allergies.
  25. Is your doctor a homeopath? I have not gone that route as my son takes prophylactic antibiotics so I can't give any specific advice on that, however from what I understand if you do decide to try it you need to work with a homeopath who is very well versed in how to treat pandas. I think there are only a few doctors I who really know what they are doing and there are pretty specific protocols that they follow. Do some research and I am sure others on this board will chime in. You may want to start a new topic so you get the attention of others who have been successful with this. I just hate to see you waste time and money as it seems you have caught this early. It is great you are seeing positive results so soon and especially with amoxicillin. Many of us have found that amoxicillin just does not work at all for our children. I am glad your doctor will follow up with another culture to see if the strep is gone.
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