britneymag

I don't think we had H1N1 so I don't know what the effects were for that with Tamiflu.

Tattoomom, If his body can't fight the virus on it's own then his antibodies will cause an explosion of tics and OCD just like with strep. Since my dd got help 5 months after the fact with the tamiflu, she obviously still had the flu inside her 5 months later just wreaking havoc. After just a couple of days on it, she was soo much better. She just felt better. She hadn't felt good for all that time she just didn't know what was wrong. Melanie

My 9 year old dd has been on antibiotics for about two months and they were working in the beginning but they slowly stopped working and her tics and major hyperactivity went way up. She was beyond hyper and couldn't not concentrate for more than a couple of seconds. She couldn't even look us in the eyes for more than two seconds. Her school work went way downhill because she couldnt slow her mind down enough to think about what she was doing or writing. I even posted on here because I was so worried and was thinking of taking her out of school. Well, it hit me that I had seen these symptoms before with her two winters ago. She went through this for about 5 months because we didn't really know about PANDAS yet. She had been sick but I didn't know what she had in November 07 and by March she was crazy ticcing and manic type hyperactive. She went for an appt with her neurologist that was treating her for sensory integration disorder and he said that he had seen lots of kids doing this during the winter. He said that there had been a strain of flu that wasn't showing normal symptoms and that is what she had gone through in November. Since her body doesn't fight the virus and instead fights itself it made sence. He put her on a round of Tamiflu 5 months after having the flu and within a couple of days her symptoms were almost gone except the tics that have never completely gone away. Her manic hyperactivity and inability to concentrate was gone. She could keep a beat again and she had lost all of that. I found her playing Simon and she was able to get past the third level. Most people would think that was normal but she couldn't do it before because her attention span was nothing. Fast forward to now. I got her Dr. to prescribe her Tamiflu 10 days ago. She was sick about 2 months ago when I stuck her on the antibiotics. She came back negative for strep but we thought we had just waited to long so the Dr stuck her on it anyway. I now think she had the flu and just didn't show all the symptoms. She had a fever of 103 for 4 days but never really felt bad and never lost her appetite. Well, now that she has finished her round of Tamiflu she is still ticcing just a bit but I would say just in the past two days she is 70% better. She can sit still and we were even in the car for a total of 6 hours yesterday and she had no meltdowns. Now maybe the antibiotics can do there job. They just couldn't fight a virus. If any of your kids had the flu and are now worse despite the antibiotics you may want to think about this. It is the second time that it has worked for us. We have had two good quiet days and I am hoping for many more:) Melanie

Abbe, I was just researching pyroulia and cannot find tics or light sensitivity as a symptom. How did you hear of this? Are there any OCD symptoms that go along with this? Melanie

I am in between Austin & San Antonio. Melanie

I hadn't really thought of anything like that. I was thinking that maybe it was a tic because he tells us that he can't help it. I haven't noticed him having to urinate more often. It hasn't been red and swollen since that one time we got the antibiotics but he is grabbing it every 5 seconds or so. He doesn't scratch he just grabs. Whenever he wears kacki's to school, we have to douse the front with spray and wash before we wash them LOL!!! Melanie

I am in Texas and have an appt with a neurologist in February for my dd. Right now her regular Dr. has her on antibiotics but only after the research that I have given him. He knows nothing about the disorder. I really think he would think I had gone off the deep end if I now came to him with my ds and asked for antibiotics. He has been very helpful and understanding but I don't want to push him too far. DD has prescriptions for the next couple of months and i am thinking of giving them to my son too. She will run out sooner but maybe I can beg for more for her. I so didn't want him to have to go through this too:( Melanie

I need someone to bounce things off of. Let me know what you think. My dd (9) has had PANDAS symptoms since she was 4 or earlier. We just started treating it as such a couple of months ago. Before we were told that it was Tourette's and SID. We have always been so focused on getting her well that I think we may have overlooked my son (8). A couple of years ago my ds started this little snort but his sinuses were acting up so we put him on Antibiotics and the snort went away so I dismissed it. It happened again last year and again I dismissed it. I thought he was in the clear because I never did his 4 year immunizations because our dd started ticcing like crazy after hers and I thought that is what had caused all of her issues. Well, about 4 months ago my ds started grabbing his crotch and after a week of it he started screaming one night saying that it burned really bad. When we looked at it, it was swollen really bad. My dh took him to a clinic and they gave him an antibiotic saying that he might have had an ant bite or an infection from not cleaning it well. (He is 7 so we believed that of course he wasn't cleaning it well.) I wonder now if it wasn't strep. Anyway, his swelling went down but he continues to grab himself and tells us that he can't help it. He also developed a rash during the Thanksgiving holiday's and a sore throat but it didn't look like strep and the rash didn't really look like scarlet fever. About a week after the sore throat he started whistling. Now he will say a couple of words and then he will whistle. He will even be crying and whistle in the middle of it. We have always noticed his pupils being large and he has always had dark circles under his eyes that we thought were just from allergies. He is now acting out at school and hitting girls and also when ever he gets hurt or when he and my dh are playing around and my dh gets him a little too hard he starts screaming bloody murder. When I run to him he just clings to me like he is terrified. He will then quickly calm down but will still cling to me. Does this sound like PANDAS to y'all? I thought since he hadn't shown symptoms when he was younger that we didn't have to worry about it but I am reading on here that so many of y'alls kids are starting their symptoms around his age. Melanie

Thanks everyone for the info. I will definately use these sites to get together a packet. We are treating dd for PANDAS and she her Cam Kinase from Dr. Cunningham was 173 which puts her high up there,but she hasn't gotten an official diagnosis. We see the neurologist on Feb 8th and will hopefully get the diagnosis then.

I am setting up a meeting with my dd's principle, counselor, and school nurse along with her teachers. Is there any good easy to follow info out there to present to them showing why my dd is not able to sit still and do her work. I can't simply say well she has pandas and that means that she can't control her tics and she can't sit still. I need to have something in front of me to support this. they know that she is smart and they think she is just being lazy and is not wanting to do her work. She gets something and just rushes through it because she doesn't want to have to worry about it. her handwriting is horrible right now and it was so nice at the beginning of the year so that is another reason they think she is being lazy now. They don't realize that she can have changes ovrnight. Also, I need them to understand that her brain will not let her slow down and do the work right when she is left on her own. I am thinking about trying homebound so I can work on her work with her but i need to seem like I know what I am talking about:) Melanie

Hummm very interesting. My daughter was diagnosed with tourette's and I have always had an issue with tics also. Mine is not as bad now but whenever she is have a rough time I start to tic more. I have always thought maybe it was stress but maybe if she is being exposed to strep and that is causing her to tic who's to say that I am not being exposed and also ticcing because of that. I know now that I had pandas symptoms as a child so maybe I still have it. Melanie

Allison, when you first started the azith what was the dosage that you used for the 15 days. When you say that he is now on 500ms every5 days do you mean he takes 500mgs on one day and then takes nothing for 4 more days? I ask because the dr who is helping me does not know anything about PANDAS and only goes by what I tell him for dosage. We are on 600mgs augmentin twice a day and it has stopped working. She has been on this dose for a month now and it only worked for a few days. She has OCD issues but is mostly ADHD and Tics. Melanie Also, what probiotic do you use. They all seem to have strep in them.

No apology needed. I laughed hard when I read that. I should be the one apologizing to him even though he doesn't know that I worded it that way about him. It was just me taking out my frustrations because we had just "spoken very loudly" about it;) Melanie

Faith, I do not have the 504 yet. I will be looking into it though. I haven't broached the subject of IvIg yet. I am still waiting to see if we can find the right antibiotic. When we finally get in to see the Neuro in February I hope to get more answers. The Dr. we are seeing right now is only going off of what I tell him and I don't know much yet:) Peglem, DH really is trying to understand. I am just the one doing the research and he is the one trying to help with school work. He spent hours both yesterday and today talking to all of her teachers trying to find out the best course of action. I am getting him to understand now that she is not a "normal" child and will not learn that way no matter how smart she is. Not until we get her Pandas under control anyway. I know I need to set up a meeting at school to let everyone know about PANDAS I just want to be armed with the right ammunition to help them understand what it is. Melanie

I think that I had Pandas as a child. Nothing was ever diagnosed, but I had several tics that would come and go and I am remembering more and more each day little things that i did that I would now classify as OCD. I had strep a lot as a child and now remember having infentigo for months on my upper lip when I was young. I also had rheumatic fever when I was 17 so I had a bit of everything. I have tics now but mostly when dd is not doing well. I think it is just stress now. Melanie

My dd is on augmentin 600mg x2 daily. She slowed down on her tics for a couple of weeks but then she was exposed to strep and we had a pretty traumatic week with our puppy that upset her. Well, now hers tics are back full force and her OCD is getting bad again. It is showing in her school work. She is failing all of her writing papers and her handwriting is horrible. She can't figure out simple math problems. I know classic PANDAS symptoms. DH is making her redo all of her papers. This again is upsetting her and making the Tics worse. DH knows that she has PANDAS but also thinks that she should do her work right or have to redo it all because she is very smart. He doesn't seem to realize that she is overloaded right now. Her teachers don't know what PANDAS is and think that she is just rushing through and that she can do much better. She is choosing to accept the failing grade rather than redo the paper. I asked her why she was rushing and she said that if she did that then she wouldn't have to worry about it anymore. She is always worried. Making her do it again is only making her worry and become more agitated. It is such a vicious cycle. I am at a loss as to what to do about her school work. I don't want her to fail but I also don't want her to get so worked up when she really can't help it. She is coming home at 3 and doing homework till 8 with only a break for dinner. This and she is only 9 years old. What should I say to her teachers to explain to them what she is going through. Should I pull her out? Put her on homebound? When I had rheumatic fever I was put on homebound and my brain wasn't even the culprit. I can't imagine what she is going through. Has anyone dealt with school work issues? All I have seen on here is how kids don't want to or can't go to school. This isn't her problem. She just can't do the work after she is there. Melanie

This makes so much sense to me now. My daughter has been rushing through her work and is willing to take a bad grade rather than redo something. this is not how she normally is and I asked her about it today. She told me that she wants to hurry up and get it done so she doesn't have to worry about it anymore. Her big thing right now is worrying. I guess she thinks that if she can get past it she can put it out of her mind. I am just trying to get DH on board with this. He thinks that she just doesn't care about her work. he believes in PANDAS but he won't read any of the research so he thinks that I am just making excuses for her. I have had to explain to him that everything right now revolves around PANDAS and she is not a normal child. Her Tics are bad again even on the antibiotics but I think she was exposed to strep last week. We see a neurologist in February that treats PANDAS but until then, we just have to work with what we have as far as antibiotics go. Melanie

The way I always took them and now it works for my DD is to fill her mouth with water and then drop in the pills. She fills her mouth and then turns her head up and opens her mouth. I drop the pills in and she swallows. Since it never touches her tongue, she doesn't have a problem with it. Most of the time she doesn't even feel it. Melanie

Why are we questioning it? I'm sure that she did know someone and did get on the show because of that. I am just thankful that she did and that PANDAS was mentioned in a positive way. If this turns out to be PANDAS it is going to open so many doors for our children. I am jumping for joy right now because it is finally being recognized:) Melanie

Thanks Colleen, I will call tomorrow Melanie

I'm not sure if she has been exposed to strep, but she has had allergies for the past couple of days. I have been giving benadryl for that. She weighs 60 lbs and is 9 years old I will call her Dr. tomorrow, but I'm not sure what dose to tell him. It looks like the norm is 400 to 600 twice daily. Thanks for the responses, Melanie

My dd has been on Augmentin 200mg twice daily for 16 days now. Her vocal tics pretty much stopped on day 6. I thought things were going great. Yesterday I saw her jerking her neck a couple of times but did not get too worried. Well, today when she got home from school she was jerking her neck non stop. It is a constant motion. She has never had this particular tic before. I have noticed that although her vocal tics are gone, her motor tics are picking up. Do these come from different areas of the brain? I just found out that her neurologist has started treating PANDAS kids, but the earliest appt. I could get her is February 2010. Her GP has been helping us by prescribing the Augmentin, but he is only going off of what I am telling him. He has not really researched it himself. So should I have him up the dose? What should it be? Also, I am trying to wean her off of Tenex. She has been on 1mg twice daily and I lowered it to 1/2 mg twice daily about 4 days ago. Do you think this could have an effect this quick? I am just at a loss. She was doing awesome for a week and I don't want to lose the gains that she has made. Melanie

My DD is just the opposite. We have noticed that she tics less when she is really into her Nintendo DS. She does seem to get worse when there is a full moon though. Melanie

Thanks for giving us the heads up on the date. I will be going on Monday to get DD's blood drawn. Her Dr. only works twice a week, but at least he is willing to treat her even though he doesn't know anything about PANDAS. Melanie

Sorry you are going through that. I have had my DD on Amox for three weeks now and she gort better the first 2 weeks. Well, on Sunday morning she woke up ticcing like crazy. They were back 10 fold. I called my Dr who is just learning about this through me and he was actually willing to change her to Augmenten but only at 400 mgs. I am hoping this will make a big difference or he might not be willing to keep working with us. I wish Dr's could be there 24/7 to see the ups and downs of our kids and then they might get it when we say it helps for awhile and then it doesn't. Lets try something else. Melanie PS I just got my kit today from Cunningham so they are still sending them out.