CeeKay

My 16 y.o. son was just diagnosed by Dr. T and started on Biaxin and Valtrex (due to raging mouth sores, and elevated strep and myco titers) as of last Thursday. We have seen a daily decrease in OCD symptoms. We are not 100% sure if it's the meds or not, because he is 2 weeks off of Paxil SSRI, after a 4 week taper-down. That was a crazy experience with all sorts of new and horrible behaviors and the OCD exploded during that time...so I am hoping it's the Biaxin and/or Valtrex...not sure, though. Either way, things are improving. :-)

My 16 y.o. son has always had to be badgered to take a shower, but it was only a couple of months ago - at the beginning of this terrible flare-up that we only just found out is likely PANDAS or PANS, that we realized that he wasn't showering or brushing his teeth at all anymore. He would go in the bathroom and stay in there for a while, but when he came out he was dry, and looked and smelled the same as before he went in. His toothbrush was untouched. He also stopped washing his hands. When I realized what was going on, I went into the bathroom with him and pointed out the bar of soap, and shampoo, and he recoiled in horror at the sight of the bar of soap, saying "IT'S DIRTY!!!" I was so shocked, I didn't know what to make of it. He's suffered with anxiety and depression for years since his sudden onset episode at age 9, which we now realize was PANDAS, and he's had sensory issues as well, so we assumed he hated showering because he didn't like the feel of the soap and water. Now I don't know what to think as he won't touch water in any way or wash his hands. I also recently noticed that he'll only drink out of one cup and if it's not clean, he will not wash it but will badger me to wash it. Speaking of sensory issues, as I said, he's had sensory issues for years that wax and wane, but lately, just the sight of food I've cooked, or other normal household sights, sounds and smells can put him in a defensive position. He saw me putting ketchup on my food tonight and he backed away from the table and averted his eyes and covered his ears in such a violent reaction to the squeaky noise of the ketchup bottle being squeezed. Last week I made chili, a food he used to love, and when he came to the table and saw the bowl sitting on the table, he let out a scream at the sight of it! I can attest that it looked the way chili is supposed to look! I guess I have lot to learn. Despite my son being in therapy for four years now, no one ever said "OCD" to me. I heard about anxiety, depression, Asperger's, and many other things, but I had always associated OCD with handwashing or lining up hand towels. I have a lot of catching up to do in figuring this all out. I agree that Nancy has been most helpful in her posts and appreciate everyone who takes time to explain things to newbies like me. Carol Maliee -- In short, the explanation is this: OCD is not rational. It doesn't follow any rational train of thought. Therefore, the person with severe contamination issues will, like your son, wash his hands until they bleed, but he will refuse to shower. Unfortunately, it will sometimes extend to such completely absurd behaviors/thoughts as fearing eating food at home prepared by a family member because that family member will contaminate the food, but being perfectly willing to graze at a buffet bar-style restaurant where the food is not only prepared but also "picked over" by half the human race. The nastiest, most insidious characteristic of OCD is that, because it wants to control the whole person, it will often render those things closest, safest, most "ordinary" and routine, as the things that should be most feared and/or avoided. So, sometimes family members themselves become "contaminated" as can ordinary, everyday places and tasks such as showering, sleeping, etc. When my son was at his sickest, showering was a horrifying process. Because our son had an OCD diagnosis a full 6 years before we discovered that PANDAS was behind his behavior, we had been fully trained and ensconced in the "world of OCD." So his therapists had taught us not to negotiate with the OCD, not to allow it to overtake him, his time, his life completely. So showering was a non-negotiable; we put our feet down and insisted it had to take place. But it was at times just short of a knock-down, drag-out brawl. My DS didn't want to shower because of the rituals that were required of him by the OCD during the process. So, once he was in the shower, he felt compelled to do things in just the "right" way, the "right" order. And, inevitably, it would somehow go "wrong" for him in some way, and then he would have to start all over again. And again. And again. At his sickest, he never felt he got the showering ritual "right," so his dad would eventually have to turn off the water and drag him out, physically, ending the process. On top of the drama and trauma of the rituals and the forced intervention of the ritual by us, my DS found it absolutely exhausting. So, he hated it. He feared it. And he loathed it. I'm betting your DS is going through something similar, and this lies behind his choices. If you don't already have an ERP therapist on board for your DS, I would suggest you try to find one. The therapy process will not only help him, but it will help you and the whole family in terms of contending with the OCD and supporting your DS rather than inadvertently aiding and abetting the OCD. There are also a number of very good books available, such as those by Dr. Aureen Wagner that can help you understand and give you tools and techniques for helping your DS at home.

Nancy, Thank you so much for your story and offer of help. I will private message when I figure out how. :-) I'm glad your son is doing so well, it gives me hope that my son can also recover. We started clarithromycin, and Valtrex for his mouth sores yesterday. Dr. T had also prescribed azythromycin, which he took for ten days, a few weeks ago when we first contacted him, and my son is a lot more stable now than he was before he started it. But as I said, he's just been taken off Paxil, an SSRI that is likened to withdrawing from heroin, so his rage and obsessions may be attributed to that...we're just not sure. Thankfully, the violent rage has settled down now, to a plain irritability, but at least we can sleep at night again. Now if he would only let me out of his sight for more than a few minutes... He was two weeks into the withdrawal/tapering down of Paxil when we discovered PANDAS and we didn't want to stop the withdrawal because he was getting through it, despite his misery. Now that he's off Paxil, I am hoping I can get his PANDAS symptoms under control with the abx. I wonder if the Paxil may have muted certain symptoms, such as OCD, or severe mood swings, which prevented him from getting the proper diagnosis sooner. He's lost his whole childhood from the time of his diagnosis until now, just existing, never happy, never knowing why he was so miserable. He used to say "I don't feel good mom", and I'd ask what hurt, and he could never tell me. I assumed it was the depression, as he never had fevers or other symptoms. I have managed to put together a timeline by getting a list of dates of strep from his pediatrician, as well as a history of Paxil increases and flare ups of anxiety and school avoidance, etc. from his psychiatrist. I also found the neurologist's report when he first had his big flare-up in 2006, and she detailed facial tics that I had forgotten all about, that appeared out of nowhere along with his personality changes and rage, terror, etc. When I put the timeline together, it's obvious that he had set-backs during or soon after strep infections. We never made the connection because we assumed he couldn't get back to school after being sick because he was out of his routine for too long, and the anxiety was too great. This was typical for kids on the Autism spectrum, we were told. I would like to hear about any supplements that might be helpful or other therapies in addition to the anti-biotics. He's allergic to penicillin and I suspect he has food allergies as well, so we will be going down the gluten-free or at least trying the elimination diet as soon as I can get my head together from the ordeal we've been through over the past couple of months. He has very limited food interests so it's not going to be easy, especially now that he's so sensorily challenged. He also has chronic constipation, which we attributed to Paxil but so far, is not resolving. The poor kid is suffering on so many levels! If you or anyone knows of any OCD therapists in Long Island, NY or the surrounding areas, I would appreciate it. I don't want to drop the ball on getting the best treatments asap. His current treatment team are all either ignorant of PANDAS, or skeptical at best.

My 16 y.o. son had his first (undiagnosed) PANDAS-like episode at age 9 after a strep infection. He changed personality overnight, developed facial tics, had the terror-stricken look, rages, separation anxiety, etc. He was hospitalized for 5 days during his meltdown, and eventually was diagnosed with severe anxiety, depression, non-verbal learning disorder (also Asperger's was mentioned though not formally diagnosed) and given Risperdal for a few months, then Paxil, which we just weaned him off completely as of 10 days ago. The reason for the Paxil taper down was that he felt his anxiety and depression were getting worse, and as he put it, "I'm going backward." He stopped going to tutoring last spring and he couldn't explain why. He hasn't been in school full-time since he was in middle school, he's now a junior and has been mostly home schooled with tutors. In the midst of the recent taper down of Paxil, and in the throes of the horrible side effects from it, we discovered PANDAS and it seemed to explain all he's been through for the past 7 years while we were treating his depression and anxiety, which seemed to flare up from time to time for no apparent reason. He was just evaluated (in a phone consult) by Dr. T, who believes he has PANDAS-like symptoms. One question I'm trying to answer is, How do you know the difference between OCD and PANDAS-caused OCD? My son has/had these symptoms in the past month, most of which continue except bed wetting and severe rage: OCD Recent bout of enuresis rage adhd/hyperactive intense separation anxiety mood swings horrific mouth sores extreme sensory defensiveness (he actually screamed when he saw a bowl of chili on the table, a food he used to love and is overwhelmed by normal cooking and other household smells ADHD hyperfocus hypersomnia refusal to bathe and brush teeth personality changes Do these symptoms normally occur with non-PANDAS OCD? Also, his blood work looked like this: ASO 338 Anti DNAse B 129 Streptozyme 200 Mycoplasma 2.29 I'm not sure if these numbers mean anything. Blood was drawn in mid-February, he's been asymptomatic for infection but his sister had a terrible bout of strep in early November. Both my kids have had numerous strep infections over the years, my son also has had repeated and prolonged bouts of mouth sores. I believe my 19 y.o. my daughter has PANDAS also, but she gets a sore throat, tests positive, has these crazy, psychotic symptoms and behaviors, then gets anti-biotics and gets better soon afterward. My son, however, rarely complains and, in hindsight, has suffered from a general malaise for many years now. He hasn't had an anti-biotic in three years but he's had such difficulty with attending school and the anxiety and depression. His Vitamin D is very low (9) and his B12 is low normal. If anyone has any insight/advice and could explain what this blood work means, I would appreciate it. Thank you for your help!