jenb3106

My dd10 has started getting canker sores (or maybe I am just really noticing it) this go round with PANDAS. Interesting. They have been worse the last week or so and dd7 came down with strep throat last Thursday. DD10 is still on antibiotics for this last flare, but I thought I noticed a mild increase in symptoms (moodiness, more distracted, reported feeling "not right") this last week also (actually going back into the week before that, also). She seems better now. I wonder if it is all related...

Mu daughter had an extreme, adverse effect when given a low dose of Klonopin to calm her down and allow her to get some sleep. So much so that she looked like she was in a psychosis for about 24 hours. The doctor then talked me into a low does of Seroquel for the sedative effect, but it did not sedate her at all and in fact made her sleep even worse. At that point I told the doctor she would not be trying any other psychotropic meds. I have a friend who has bipolar disorder who told me that the lowest does of Seroquel makes her so sleepy she cannot even function. I guess these kids just have a very different reaction to these types of drugs.

My dd7 has meltdowns/tantrums that are usually triggered by a change or some expectation she has that is not being met. Basically she is very rigid in what her expectations are of what's going to happen next, ie. transitions. Of course, mostly at home and with me (the moms are usually the ones that bear the brunt of it, right?!). The problem is that she doesn't verbalize what she expects to be happening to me, she does goes into meltdown and loses all reasoning. And it doesn't happen all of the time, so we (mostly me!) is left to guess when, where and why. However, she is not my child that is in the process of being diagnosed with PANDAS. Although I am starting to wonder (especially now that I realize it was really bad when her sister had strep recently). Ugghhh. But, what I wanted to share, is that until about 6 months ago she was in OT once a week. She started there for balance and coordination issues, but we eventually moved into lots of sensory stimulation and developing a "sensory diet" to help with emotional regulation. It certainly didn't solve the problem (for either her or dd10, my PANDAS kid), but we did get some useful things out of it. And one of those was the swinging. I don't have an indoor swing, although I have been looking into it, but any type of swinging (playground swings) can really help. It stimulates the vestibular system which is very soothing (like rocking a baby). Now, it probably won't be much help once she is completely over the edge but it might help her with her anxiety when she is starting to ramp up as airla95 started in her post about her son.

Oh my. I checked out that thread. Yes, I will get dd7 checked. Thank you!

Ahhhh, good point...

So, after gathering all of the information I could find and putting together a four page documentation of episodes my dd10 has been through with her anxiety and OCD (the last two in which she was treated for strep), I finally got our pediatrician on our side and thinking that this is a case of PANDAS. Which is great except she has no idea how to treat and our efforts to locate someone (more or less locally) have not gone all that well. However, she did decide to keep her on antibiotics for the time being and we are going to retest her ASO titer next week (it was at 2000 on February 1st when she was sick and it was all starting up again). AND now her psychiatrist (who has been prescribing Zoloft and Ritalin for anxiety and ADHD) is conceding that this might be a case of PANDAS. Of course, he wants to up her Zoloft to close to double and start a new round of CBT. Uggh. She is doing much better on the antibiotics and off of the Ritalin. I am afraid to do anything about the Zoloft without some expert consultation. So, after researching doctors my husband and I decided to schedule a consultation with Dr. Murphy even though it means travel for us (she is in Florida and we live in Texas). So, we are scheduled to go out there at the beginning of May and I am hoping for a plan. My pediatrician has said she will work with a recommended treatment plan, she just doesn't want to wade in without knowing what she is doing. So, in the course of all of this my mother, who had rheumatic fever as a child and has been treated long term 2x as an adult with a year long course of antibiotics for infections and elevated titers, started also doing a lot of reading on PANDAS etc... She has had problems with inflammatory osteoarthritis since she was 28, but most recently has been having more problems in the past year (she is now 68). She started to wonder if she wasn't having a problem with strep reactive arthritis. So, she convinces her doctor to test her ASO titer and sure enough, it comes back at 400! So, now she is on Omnicef also. Hmmm.... I am thinking that if there is some sort of genetic susceptibility to strep and autoimmune issues, my family must have it. Now I am thinking I should have dd7 and my titers checked. Dd7 has been treated twice in the last year for strep and has been having a lot of behavioral problems (meltdowns and tantrums at home, but not at school), but no OCD or tics. Still, she was really bad when dd10 was sick about a month ago. My husband and I chalked it up to needing more attention, but now I am wondering. She has also been diagnosed with ADHD, but isn't taking any medication for it. This is exhausting! Wow. How do you guys keep sane?

I just took my daughter off Ritalin as we are in the middle of the a strep episode and it has increased her OCD since she got sick (ASO titers at 2000). We are just now seeking treatment for PANDAS, so I don't have any advice to offer for someone who is in remission. However, here is our experience... At the time we started our dd10 on the adhd meds we had known that adhd was an issue for a while (she also has learning disabilities) but she was NOT diagnosed with PANDAS although we had been through our initial episode about six months earlier. She was already on Zoloft as a result of that episode. I was reluctant to try it because of her anxiety and the side effects. However, she was so angry and frustrated at school and then in meltdown all night at home, we decided to see if it helped at all. Those issues did get better pretty quickly. We started with the lowest dose and increased it very, very slowly. Then, of course, we had a strep infection about a month into it and the OCD got worse again (this was last January). I was able to convince her regular doctor to put her on six weeks of antibiotics which reduced the OCD and anxiety greatly. Her doctors (regular and psychiatrist) were not all that supportive of really exploring a PANDAS diagnosis and they scared me about the dangers of antibiotic resistance, so I was relieved that the antibiotics we did get seemed to cut down on the severity of the episode. However, her overall level of anxiety remained higher than it had been. A couple of months later we ended up increasing her Zoloft (which, by now, she had been on for a year ) I didn't consider taking her off of the Ritalin at the time because no one brought it up, bear in mind that my daughter has not had a diagnosis of OCD despite the fact I kept bringing up her OCD behaviors to her psychologist and psychiatrist again and again. Also, the initial problem of being so angry and frustrated at school had not returned even she was more anxious overall. However, now that I have done a lot more research about both OCD and PANDAS, I realize we were playing with fire and got lucky it didn't blow up on us. This time, with a clearly diagnosed strep infection and an obvious increase in OCD, it was pretty obvious to her and us that she was having more problems on the few days she took her Ritalin after she started antibiotics and went back to school. So, looking back now, I think the Ritalin was, at the very least, contributing to the overall level of anxiety. However, that was during and after treatment for a strep infection AND dd has not really been treated at all for PANDAS. So I guess the issue is if ds got sick with or exposed to strep and he was on a stimulant drug, it would probably make it worse. However, the one good thing about stimulant drugs is that their effect is immediate and it is out of your system pretty fast (depending on what formulation is taken). So, if he did get sick or otherwise start having a reaction, it's not like it will take weeks for the drug to get out of his system. I don't know if any of this information helps you with your decision, but at least it is some information from someone who has been there, I will tell you that the side effects are hard to manage. Loss of appetite is a big problem. It is really hard to get a kid to eat while the medicine is in effect. You can make up for it with big breakfasts, lots of small snacks and a big dinner, but it something you have to think about and manage all of the time. Also, it caused problems falling asleep for dd, however we were able to counteract that with melatonin. On the flip, just to make it super confusing (sorry!), let me also tell you that I have adhd and I take Concerta and Wellbutrin to treat it. I was diagnosed 20 years ago and was able to get by only on Wellbutrin until I hit 40 and suddenly had one kid with this crazy, episodic OCD/anxiety + adhd and another, dd7, with adhd. It has been a lifesaver for me. I am not exaggerating. I am not sure how I would have kept it together at all. However, I also have to be really careful about managing the side effects, which for me do include increased anxiety (but no OCD) and insomnia. So, once we start treating dd for PANDAS and, hopefully, cure it (dear God I am hoping that this happens), I would not completely rule out a stimulate drug to treat her adhd if it is still problem because the right drug at the right dosage can be life changing. However, right now we are going back to ground zero and starting over with dd and her medications because it is so hard to tell what is causing what and what is helping what.

There is a product called No Phenol, I forget which lab makes it. I have used it successfully with my younger DD(7). You might want to try it if you think this may be part of the problem.

Oh yes, my daughter has had that same problem. All I can tell you is that it seems to happens when we are in our worst strep related episodes. And it seems to be related to her OCD raging out of control. We do not, as of yet, have a pandas diagnosis because my doctors here haven't been supportive. So I don't have any other advice to offer. However I can tell you when she starts doing that we take it as a sign that things are about to spiral out of control. Last year she started doing it again about 10 days after she had finished amoxicillin for strep. I was able to convince her doc to put her on 4 weeks of omnicef and that did take care of that symptom. We are on the middle of another strep episode with very elevated titers and finishing our antibiotics, omnicef, so I am watching her like a hawk. I am also desperately trying to get to a pandas doctor, somehow I don't think one ten day course of antibiotics is going to take care of an infection where her aso titers are at 2000. Sigh...

Ok, you have my attention! I am in Austin and looking for a PANDAS doctor. We are in the middle of a strep infection, DD's ASO titers were at 2000 last week.. Our doctor here is probably not going to prescribe antibiotics beyond normal 10 day course (which we finish this weekend). Just tonight she admitted to an increase in obsessive thoughts...

Wow, thanks so much for the input! I am going to start making some phone calls in the morning. Jennifer

Thanks eljomom for your feedback. I didn't even get into the fact that my extended family has a long history of problems with strep in my ridiculously long post (with a ton of typos - sorry!). When I try to look at it objectively, it seems so obvious, But so far, non of the highly trained medical and mental health professionals in our life have been supportive or had anything to add. We have tried to do everything we can think of to help our daughter, and we have had to private pay for almost all of it (psychologist, psychiatrist, OT, dyslexia tutors, private school...). Now I am wondering if we have put all of our eggs in the wrong basket. I guess the question now is which doctor and where? Needless to say. out finances are stretched pretty thin. But somehow I have made all of this work and I guess I will keep figuring it out. If anyone knows a good PANDAS doctor is Austin, TX area, I would love to hear about it. Thanks!

Hi and sorry this is so long! First of all, what a great forum this is! I have already gotten tons of useful information just from reading some of the posts over the last few days. So, I thought I would post our story and see if anyone here had some advice or feedback for us. Here's our backstory: In January of 2009 my dd, 8 at the time, developed a sudden onset case of OCD. But we did not realize it was OCD at the time. My dd has had a history of anxiety and was treated at one time for a phobia. So, one night she woke up in the middle of night with this overwhelming fear of throwing up. Somehow I managed to get her calmed down and back to sleep. From that moment on her general anxiety level reset to a much higher level than we had ever seen. A few days later she had another episode of being terrified of throwing up that went on for some time, but somehow we managed to get her calmed down. By this point I had called the therapist we had worked with to get over her previous phobia. We thought that she had developed another phobia (about throwing up) and was having panic attacks about it. The previous October she had what we thought was the stomach flu where she threw up for a day and then ran a fever for a couple of days but got better. I did not take her to the doctor for it. What we thought were panic attacks continued and grew more frequent and longer. At first they just happened at home and then it started at school. We were confused and scared because nothing worked to help calm her. The therapist, who dd knew and trusted couldn't figure it out either, DD was not responding to therapy at all. On President's Day weekend my younger dd came down with strep throat (diagnosed via a throat culture) and was treated. From that weekend on my older dd was gone. She was obsessed with the thought that she would throw up, then about choking. She developed this breathing thing where she was gulping air all of the time. She could not stop doing it. We thought she was in a constant panic attack and hyperventilating. By the beginning of March she was not eating and sleeping. She wouldn't leave my side and didn't go to school most days. Our pediatrician got us in to see a child psychiatrist who explained that she didn't have panic disorder. She decided to go with a diagnosis of Generalized Anxiety Disorder. However, she acknowledged that there was a strong OCD component to her anxiety and started her on Zoloft and Klonapin. She had an extreme, adverse reaction to the Klonapin. She was completely out of control and unreachable for about 24 hours. It was the worst 24 hours of our lives. I refused to put her on anything other that the Zoloft after that (psychotropic drugs were being recommended). Gradually she started to get better. She continued seeing the therapist (who specialized in treating anxiety) but, frankly, it didn't seem to do anything. She stopped being obsessed with throwing up, but then got stuck on natural disasters (tornadoes). Somehow, by June she was better, but not back to the normal we had known. By now she was on 75 mg of Zoloft. This continued until January of 2010 when she was diagnosed with a case of strep throat by the clinical signs. It is impossible to get a throat culture on her because she freaks out (she has long standing sensory issues). She was put on amoxicillian for 10 days. Her anxiety level started going up again. By now I knew what PANDAS was and was watching for signs as her first episode was so similar to many I have read about. She did not get completely well and still complained of sore throat. Then the breathing behavior started again, but not all of the time, it seemed to come and go. She started worrying about her health obsessively. I took her back to the doctor and brought up PANDAS. Thankfully she did not think I was crazy (my mother had rhuematic, sp?, fever and there is a history of autoimmune illness in our family). She examined her and said her throat still looked like it had strep (she didn't want to draw blood for an ASO titer for fear for making her anxiety worse) and put her on Ceftin for four weeks. She gradually started to improve but anxiety remained high, especially about natural disasters again. In June her psychiatrist put her on 100mg of Zoloft. Last fall was actually pretty good. It was the longest time we had gone with the least amount of anxiety. We started to relax a little. Fast forward to this January (again!!). She comes down with a sore throat and fever. I take her to doctor twice over a three day period. This time the same doctor refuses to put her on antibiotics because her throat doesn't look enough like strep throat (still no way we are getting a throat culture although one nurse is ready to strap her down and get it, I said no to that). She is convinced it is viral infection. She gets better enough to go back to school for a week. Then I pick her up a week ago Friday and she is clearly very sick. Her temp is 103 and she throat is sore with swollen glands. I immediately start dosing her with Motrin. She then wakes up in the middle of the night with a full blown freak out about throwing up and is doing the breathing thing again. I does her with Motrin and she eventually calms down enough to go back to sleep but she is very jumpy. In the morning we went to the doctor and once again no throat culture and throat still doesn't look like classic strep. I suggest an ASO titer. Instead they do a finger prick to run a CBC. They decide her blood work indicates another viral infection. Now I am mad, getting scared, but wondering if I am crazy just imagining that there is a strep connection to her worsening anxiety. We go home and she basically stays on Motrin around the clock for fever. She is very sick and kind of detached, but no other anxiety episodes happen. By Tuesday she is still just as sick and we go back to the doctor. This time the doc is like "oh yeah, we are running an ASO titer". They also do another in house CBC. She comes back and says she still thinks it is viral but will let me know about the titer. We go home and stick with the motrin (with some tylenol, but mostly motrin as it seems to control the fever better). The next morning the doc calls and her ASO TITER IS 2000!!!! I asked her to repeat it, yes it was 2000. They start her on amoxicillian. By Friday afternoon she is still not feeling better, still has a fever, so I call the doc and demand something else (because now i am really, really upset). She then prescribes Omnicef, 300mg, 2x per day for 10 days. Within 24 hours she starts getting better. So, now I do not know what to do. She is still not herself, but no OCD about sickness. She was not sleeping well, complaining about nightmares and very clingy wanting to sleep in bed with me, but five days into the antibiotics that has gotten better. I haven't seen the breathing behavior. I am wondering if the round the clock motrin helped the OCD symptoms until we got on antibiotics. Or maybe not? We are on a wait and see with the antibiotics to see if her symptoms start up again after she finished the 10 day course. Our doc is open to the idea of PANDAS but loathe to prescribe antibiotics because she is afraid of dd developing a resistant strain of strep. DD also sees a psychologist (different from the original therapist who had referred her on) and a psychiatrist whose attitudes when I bring up PANDAS is "well, that's interesting, keep an eye on it". I mentioned to her doc about monitoring the ASO titers, but she said she wants to wait and see. Does anyone have any advice or feedback on our situation? I really would like to talk to a professional who knows and understands PANDAS and either rule it in or out. I should also mention that, in addition to long standing anxiety issues, dd has learning disabilities and ADHD. In addition to Zoloft, 100mg per day, she takes Ritalin LA, 30 mg, per day. It is so hard to sort out what is what. I have come to think about the situation in terms of her having to two types of anxiety, the regular stuff (lots of anxiety about school because of the LD and ADHD) and the "OCD anxiety", which I swear only happens around a strep episode. Additionally, she has tons of allergies and has had her tonsils and adnoids (sp?) removed already (for reasons not related to strep, this all started AFTER that). Thanks for reading this and thanks in advance for any feedback or advice! Jennifer