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Hi- this is my first post on this forum though I've been reading and following to try to figure out the puzzle of my my son's behaviors. He's 9 and was diagnosed with ADHD and anxiety, and sensory processing disorder with a neuopsych when he was 6 though behaviors had been around for many years starting around age 2. He was also diagnosed with Periodic Limb Movement Disorder at age 6 after a sleep study. Recently he has shown new "tic" behaviors like repeating swear words words over and over (under his breath) and making repetitive sounds. We are seeing a new doctor and he ordered a test for PANDAS. His strep titters came back as 382. He took a five day course of amoxicillin -the tics do seem lower but his frequent rage issues continue to increase by the day, as well as extreme irritability and defiance, temper tantrum and emotional reactions. On top of this is a craving for and or /refusal to eat many foods and chronic constipation. We tried a two week trial of gluten free followed by 2 weeks of dairy free. Dairy free seemed better but very difficult because milk is what he craves. He has poor weight gain and has fallen off the growth chart. His sensory behavior has increased and he can only have very soft materials touching his skin (takes off clothes and wraps himself in a blanket whenever he is at home.) He is taking foculin xr, Kapvay and Prozac. We are stopping Prozac in 10 days to see if that helps. He also takes Zyrtec for seasonal allergies and miralax. We just restarted iron supplements for PLMD as his serum ferritin levels are at 30 (way below the 70 his doctor would like to see.) I'm wondering about the connection between ADHD, PLMD, anxiety, SPD, PANDAS and digestive/growth issues. Does anyone have a child with a similar profile? Thank you for your help!
A simple Google search of ‘OCD 7 year old’ brought me to your group. I’ve never heard of PANDAS and I have to say that what I have read scares me. I feel for each of you and your children who are suffering. Here is my son’s story…my apologies it is so long. I’ve tried to document medically what might be relevant. On October 8th, 2013 my 7 ½ year old son received the flu mist at his annual check-up. Within 5 days or so, he suddenly started counting to 7. He seemed to count repeatedly for no reason. He counted while watching a movie on the iPad – changed the volume setting 7 times while counting to 7 on his fingers. He did this in sets of seven (held up his thumb – counted to seven, held up his index finger – counted to 7 and so on until he was holding up 7 fingers). He counted to 7 by kissing the basketball before taking a shot. He kissed and tapped his stuffed animals 7 times each at bed time. He brushed his teeth then wiped his face with a towel seven times. He holds his bedroom door shut – pulling on the handle tightly for the count of seven (only at night after getting PJs on). He at times hums (or makes some kind of noise) instead of verbally counting out loud. I watched him playing by himself outside – count to seven, and then run down the street…stopped and counted to seven again (he was moved his head 7 times back and forth left to right) then ran back to the driveway. He would go up and down the front stoop after counting to 7. I did question this behavior but he told me that he counts to 7 because he is 7 years old. He said he counted to 6 when he was six (never did I see this) and he will count to 8 when he is eight. Another time he said he was counting because his brain makes him. He also said he doesn’t count in school (I’m afraid to even ask!). So that is the NEW behavior. Here is some background up until now. My son was colicky and needed to be swaddled tightly until he was around 4 months. At 5 or 6 months he had cocksakies virus – a really bad bought of it in his throat. He had cold after cold – which later developed into asthma (only with a cold) although the wheezing was only heard by the doctor. We saw a specialist and he was put on daily meds as a preventative measure at one year old. He took rescue meds with a cold only. When he was about 9 months old, he had a 4 week bout of diarrhea (tested stool found no cause). He seemed to rebound with constipation after this. At two years old we saw a specialist who said he was withholding stool causing the constipation. He was otherwise healthy but needed to go on Miralx & Laxatives to soften and encourage the release of stools without pain and to get his gut moving again. We continued for years with stool withholding. At 3 he had sensitivities to socks/shoes and it would take an hour or more to get out of the house and we’d all be in tears. We saw a Psychologist who said this was his way of having control since we were forcing him to use the potty while he was fighting and withholding. He started kindergarten and his teacher immediately recommended we see an OT for a Sensory Processing Evaluation. Findings…”There are several scenarios that may explain the distractibility/inattention as it relates to sensory processing; difficulty filtering out non-pertinent auditory information, the symmetrical tonic neck reflex not being fully integrated, and the sensitivity to tactile input or a combination of all three. Along with this, he has also exhibited inefficient processing of proprioceptive input, low average muscle tone and joint laxity that may result in distractibility.” And I thought he only having trouble with sock seams! My boy is the best hitter on the baseball team and can play the drums by ear as well as write music. Are these things all related and can it be possible this is PANS since the onset of OCD is out of the blue? Is there a connection to his recent flu mist vaccine or any of the other vaccines triggering the constipation, SPD and now OCD?? I don’t recall that he ever had strep (I am 99.9% positive he didn’t have strep EVER). I do remember him being on an antibiotic once for an ear infection. My mother swears I am a strep carrier as this is what my pediatrician told her when I was 4 years old. I would always have a rash and my brother would get strep over and over. So many times that his tonsils were removed at the age of six. My pediatrician doesn’t see a connection with the sudden onset of OCD with the Flu Mist and admitted she doesn’t know much about PANDAS/PANS. She recommended we watch my son and if it worsened or impacted his daily life to contact a Psychiatrist /Psychologist/or got him in CBT. We have an apt with a Psychiatrist this week. I’m waiting to hear back from the OCD child study clinic at Yale (Dr. Leckman) to see if my son’s case fits their study. Dr. Bouboulis in Darien, CT doesn’t have any openings and the wait list is so long that they anticipate possibly there will be a cancellation in the spring of 2014. Anyway…am I nuts for thinking my son might be having a PANS reaction? Thank you for reading our story.