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Our 12 year old son was just diagnosed with PANDAS/PANS after being diagnosed with anorexia this summer (the anorexia was a symptom of the pandas, we learned). We discovered that it was not "just" anorexia because as the re-feeding process was underway without much resistance from him, a whole host of other symptoms arose leading to this diagnosis. His primary symptoms now are extreme anxiety/mood swings/rage in addition to some physical symptoms that the doctors have observed. Has anyone else had their child's diagnosis begin with anorexia and/or have experience with extreme episodes of rage, particularly targeted as hatred (to the point of phobia) for a parent? Thank you.
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Wondering what is the range of aggressive rages people are experiencing/observing with pandas? My teen son turned from honor student (now with Pandas) to someone with frequent fits of rage at home some of which can be quite violent and abusive especially when his anxiety is turned up to high and OCD is out of control. With this short fuse a lot of swearing and aggressive language occurs especially with this flare up.
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I'm new to Latitudes and this forum. The short story is my ds, 12, developed severe ocd, tics, and rage issues over a few days in October 2012. His brother has bipolar disorder, so his PCP assumed that my son did, too. I insisted he be tested for strep. While the culture was negative, his titers were extremely high. Another doctor in the practice thought he had Sydenham's Chorea, so he sent us to Children's Hospital in Boston. He was put on IV antibiotics and ALL of his symptoms disappeared within 24 hours. (Children's does not 'believe' in PANS or PANDAS) and discharged him with a diagnosis of OCD and possible mood disorder. He stayed on antibiotics for 6-8 weeks. He also began trying different mood stabilizers and atypical antipsychotics with little success. His symptoms slowly returned, ebbed and flowed, and came to a head this January. He was hospitalized at Franciscan's Hospital for Children (psych hospital) for 9 weeks. He is on a host of psych meds, has been home for a few weeks, and his symptoms are all escalating again. We started him on Keflex 2xday over the weekend. He is very angry, violent, and irritable. He can't get into MGH to see a PANS specialist until August. I don't know what to do. Should I hospitalize him again, just so my family can have some relief and so that he can be safe? Hospitalization didn't work last time, and I don't think the meds are helping. Can you help me figure out where to start? My heart tells me this isn't 'ordinary' mental illness. The website is wonderful, but I just don't know how to get started, especially without a PANS-friendly doctor on my side. Thanks, Melissa
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What have you done that helps with rage episodes?
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Ok, medical detectives, I need some assistance... DS, 14, suffers from daily fatigue. He has an adenotonsillectomy scheduled for November 4th that the ENT thinks will help with PANDAS and will help with breathing, sleeping, fatigue, etc. DS, 14, started 8th grade wrestling yesterday. This is his first organized sport ever and he seems very excited about it. That being said, he hates to lose EVER-AT ANYTHING-FOR ANY REASON. I don't know if that is genetic, pandas, or an unhealthy combination of the two. My husband and I are both very competitive. On day 2 of practice, he lost in a drill and he was crying and very upset. He could not be consoled and was nasty the entire trip home. Coach met me at the car to talk about it-JOY. I gave him an apple with peanut butter, he took a shower and is much calmer, but horribly tired. DS was dripping with sweat and said he was starving. A few other times in his life he has been downright ugly and nasty tempered when he has not eaten on a somewhat regular schedule. Usually an apple with some peanut butter will take the edge off until he eats a regular meal. At one time, an endocrinologist said he had Metabolic syndrome and prescribed Metformin. He took for two months and no noticeable results. Dr B, who was immunologist at the time, said he didn't need it, that he did not have metabolic syndrome. His blood sugar always tests in the normal range. DS, is 5'10 and weighs 215; his shoulders are as broad as a linebacker's. He has recently lost 7 pounds on his own by doing elliptical exercise. What am I missing here?? I plan to send a snack for him to eat between school and wrestling practice. Will the adenotonsillectomy help with the fatigue? Again, what else can we do? -
Hi, My 6 yr old son has a mild case of PANDAS for two years now. Last September we put him on prophylactic weekly zithromax because his ocd and rages had gotten more severe. All of his symptoms diminished almost immediately and he had a really fabulous winter, almost no signs of pandas. Then about 2 months ago he started having hyperactivity after getting his oral suspension (red liquid) zithromax, to the point where he said, "mom, I can't stop my body!" So, then I gave him a med holiday to see how he would be off of the zithro. Within 2 weeks a new tic started. Then we all got sick and he flared more (4 behavioral meltdowns in one week). He took some zithro for 3 days thinking we all had mycoplasma and found that he could now swallow pills. So, his behavior is pretty good, maybe some sensitivity 2-5 times a week, not full tantrums. However, his tics have increased in type of quantity. But no one hardly even notices them, not even him. But they exist, just watch him closely for 5 minutes and you'll see the repititions. Oh, also not sleeping well, bad dreams, peeing in bed at night. So, my question is should I put him back on a weekly oral pill of zithro or do we just tolerate all of this since it is quite tolerable. I understand that the zithro is used more for its immuno-modulation than for its antibiotic qualities. I just don't want his basal ganglia inflamed and causing him these mild discomforts. And I want his body in a neutral place. So, meds or no meds..... maybe for some weeks until we're more into summer and school is out so less germs around??? thoughts?