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  1. Just got off the phone with one of my NDs and talking about immune modulation and how we can redirect the immune system into fighting bacteria and viruses instead of DS' brain. She said she uses larch arabinogalactan with a lot of kids - I've been doing a lot of reading and this is the first I've heard of it. Anyone else use it? She also recommended olive leaf extract. What is a good brand to use? And dosage?
  2. So I noticed that DS' breath last night had a weird fermented smell. Kind of like he had a couple beers. I smelled him this morning and it is not so bad. Smelled his skin too but he smells normal ("mommy!! what are you doing?!?!") . I started thinking about yeast overgrowth; he's been on abx for 3 weeks and does take 50 billion units of probiotics. He's also on Sacc. B., which is a yeast, so I'm wondering if I should cut back on the Sacc.B for a bit. He takes his last abx around dinner, and his probiotics right before bed (as per the ND's advice). He hasn't had any tummy issues. Has this happened to anyone else? What should I do?
  3. I've noticed this happening over the winter and it's happening now too. DS seems to flare after he is sick, but not during. For example, this past Monday he seemed to have some slight improvements which continued on through the week, but on Wednesday he developed a stuffy nose/cough in the evening. The worst of it was Thursday and Friday, but his tics were still improving. However, by Saturday he had gotten over the worst of it (and passed it to me and DH), but his tics really flared up that night. And Sunday, and until now. I find it curious and wonder what is happening with his immune system - when he is sick, is his immune system "busy" with the virus? then he gets better, and his immune system can go back to attacking himself? Also, he kicked a hole in the drywall while ticcing this morning - anyone know how to fix it?
  4. Ugh. Need to vent. DS' new tic these past three days is screaming at the top of his lungs. Makes driving with him a rather harrowing experience. I'm hoping this doesn't last long. I thought the loud whistling was bad but I'll take whistling any day over this.
  5. I just wanted to share this article. I am not promoting this lab and did not use this lab for testing. I have had a difficult time understanding why my son's symptoms are so different and yet these anti-neuroantibodies have shown up. The first time he had the Cunningham panel ran it could not be read as unlikly or likely. The marker was in the middle. My educated guess is that my son's body had accepted the antibodies as part of his body. The second time my son had this test was when he had a double ear infection. Both ears inner and outer, very painful, and his symptoms of tremors, vocal tics headache, scalp pain and hypersensitivity went through the roof. He could not stand sheets or blankets on him. This second test came back highly likely but this in itself does not mean that he has PANDAS but he has the antibodies in his brain. I have read bits and pieces of research that these antibodies can show up in other illness. I came across an article that pointed this out and there are references at the bottom of the page. Hopefully this will help someone else figure out why their child has these antibodies if they have had the Cunningham Panel done. http://www.wieslab.se/index.php?headId=73&pageId=73&langId=1&diseaseId=94
  6. My doctor wants us to try Oral IG. It is the IVIG used but not with needles, We are told to give him a childs does of Pepsid to stop stomach acid and the oral amount is small & given every other day for many months. It is expensive $600. a month and I am fully aware of that. Background: My son is 3.5yrs old, and is in & out of being with us.He has some OCD, it used to be EXTREME. He talks some but not conversationally. He did 20 days of Cefdinir 2 different times. On both occasions he did speak conversationally. And permanently lost some of his worst OCD & separation anxiety symptoms. It was amazing!!! So his conversational speech & socialness did go awa when we stopped the Cefdinir. He has a bit of a yeast Candida battle going on since he was a baby & so we could not keep him on long term antibiotics. I give him Sacchamoyers Ballardii & FiveLac & Nystatin to help that battle and that does work BUT it is not enough when he is on antibiotics. and I am nervous about long term antibiotics with long term Fluconizole/Diflucan. IS that a true concern? The Candida problem is reason we are thinking very seriously about the Oral IG because if he had to be on antibiotics for a year or two I think it is not recommended to be on Diflucan that long. I saw a post from doctor McChandless saying ORAL IG works well for some kids. Are there any families out there that have had experience with Oral IG, Please let me know!!! Thanks,
  7. I don’t post very much because when my twins are home from pre-school the minute I open the iPads they both grab one & jump on ABC Mouse. Background: my son is 3.5 years old he has had PDD-NOS since he was 18months maybe longer. He has a twin brother & they were initially both verbal at 16 months then one progressed verbally & social and the other had terrible diarrhea & stomach problems for many months & he then did not progress, he actually regressed for a year. I see a DAN that was in California but is now in Florida & my son is on Methyl B-12 injections, DMG, Digestive Enzymes before meals & cod liver oil & Probiotics. No dairy no wheat and limited carbohydrates is his diet. After 60 days of Methyl B-12 & DMG he began to talk, he can spell and writes things to me with his ABC sets that I bought him. He ACES the spell curriculum on ABC mouse (more than his Nuerotypical brother), but he is not social and he still vocally stims very loudly 3 times a day for an hour each time. So 3 hours a day. At that time it is very difficult to pull him out & back with us. This usually happens when people are at our house or if we are in a store. Currently he is on his 3rd round in 6 months of Fluconazole & Cefdinir. He makes big social & verbal gains when he is on this course. He can communicate better and stims a little less. Two days ago I accidental missed his Fluconazole and he had trouble communicating the next day, so now I am thinking the Fluconazole is the most helpful. Where do we take this? I need advice? IVIG? Stem Cells? Fecal transplant from brother? GcMAF? What could replace these medication rounds OR do the medication rounds sometimes help workout the problem for good? Please let me know.
  8. I don’t post very much because when my twins are home from pre-school the minute I open the iPads they both grab one & jump on ABC Mouse. Background: my son is 3.5 years old he has had PDD-NOS since he was 18months maybe longer. He has a twin brother & they were initially both verbal at 16 months then one progressed verbally & social and the other had terrible diarrhea & stomach problems for many months & he then did not progress, he actually regressed for a year. I see a DAN that was in California but is now in Florida & my son is on Methyl B-12 injections, DMG, Digestive Enzymes before meals & cod liver oil & Probiotics. No dairy no wheat and limited carbohydrates is his diet. After 60 days of Methyl B-12 & DMG he began to talk, he can spell and writes things to me with his ABC sets that I bought him. He ACES the spell curriculum on ABC mouse (more than his Nuerotypical brother), but he is not social and he still vocally stims very loudly 3 times a day for an hour each time. So 3 hours a day. At that time it is very difficult to pull him out & back with us. This usually happens when people are at our house or if we are in a store. Currently he is on his 3rd round in 6 months of Fluconazole & Cefdinir. He makes big social & verbal gains when he is on this course. He can communicate better and stims a little less. Two days ago I accidental missed his Fluconazole and he had trouble communicating the next day, so now I am thinking the Fluconazole is the most helpful. Where do we take this? I need advice? IVIG? Stem Cells? Fecal transplant from brother? GcMAF? What could replace these medication rounds OR do the medication rounds sometimes help workout the problem for good? Please let me know.
  9. Thought folks might enjoy this. http://www.mercurynews.com/health/ci_25600426/misdiagnosed-bipolar-one-girls-struggle-through-psych-wards
  10. 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
  11. Friends and Comrades-in-Arms -- Through another support forum, I've been contacted by a family in Italy (not certain where in Italy at this point, though I have asked the question so will clarify once I get an answer) with a young adult son (age 25). There's a bit of a language barrier, but the father does well with the help of some Google translator ap. This boy-man has official diagnoses as follows: immune-mediated encephalopathy post vacinale secondary diagnosis pans pandas syndrome. Unfortunately, however, it appears he's having trouble getting effective treatment. His father tells me he has received psych meds and a couple of antibiotics trials, one of which (Augmentin) did not appear to do anything, and the second of which (minocycline) sent the boy into rages. They've tried some supplements, also, but apparently there's been no real progress. No mention of IVIG or PEX, though I've asked those specific questions and, once again, will relay the answers once I have them. I know we have some international participants here, but I don't recall anyone either in or from Italy. Anyone have ideas or caregiver recommendations that I can share with this family? If so, please feel free to post or PM me. Thanks!
  12. I have read through some old post and see comments that this is helping. How is Fish oil helping your son or daughter? What dosage is being used. Feel free to pm. My son takes fish oil but not at a high dosage. I tried increasing olive oil levels this last week in his diet and his pain levels and sensitivity levels went way up. So I have backed off. I have found some articles that indicate Fish oil is good for many things and will share what I find. Is there any research on how fish oil affects PANDAS/PANS. I am assuming it affects the brain antibodies, Maybe? I feel like I missed some good information somewhere along this route because of some of the aricles I have found. Any information would be appreciated. Here are some articles about fish oil that I found helpful but none are about treatment for PANDAS/PANS. On the last article you will need to click on MORE under Jacob Teitelbaum. This article does give a dosage. Does anyone use this much? http://www.lef.org/magazine/mag2012/sep2012_Fish-Oils-Health-Benefits_01.htm http://www.drperlmutter.com/grain-brain-seven-super-supplements/ http://www.sharecare.com/health/immune-lymphatic-system-disorders/natural-treatments-for-autoimmune-diseases
  13. I'm just about ready to take the plunge and go gluten free with my son. Last Saturday, when the doctor was going over results, he asked if we ate out much. This is a very rare thing for us to do. He said that MSG could cause high Glutamate and low GABA that showed up in the neurotransmitter test. I've been researching and it seems like there is a connection with MSG and gluten products. Is this right? I'm also beginning to understand that it also occures naturally in our foods such as vegetables and fruits. I'm about ready to plant my own garden. Is it possible to was this stuff off your fruit and vegetable or do you have to buy organic? How do you avoid MSG? Does this show up in food allergy testing? I have been going back and looking at the post I did earlier on Gluten Free. Thanks for all your answers. I have been working on a menu plan but I still lack some confidence in trying to pull this off. Am I dealing with a double edged sword trying to go gluten and MSG free? Is it possible to do both? My son really likes pasta dishes? Can anyone recommend a brand of noodles to try creating mac and cheese and spegittie?
  14. My ds was seen by a doctor in Texas last December. Finally got test results back and have a phone conference set up with the doctor this Saturday. The test results showed that my ds M pneumioiae IgG Abs was 953. Normal Range is 0-99. The funny thing is this same test has be done twice ( results were in range) after the titer showed up high 3 years ago. Does Mycoplasma only show it's head when there is an active infection in the body? I know this thing is hard to detect but I am in shock I guess. From reading I know it can move in and out of cells freely. If this has been in my ds body this long, what could I expect treatment wise? My son is on 250 Azthromycin and not seeing any improvement. Started it December 21, 2013. This test also showed the HHV 6 IgG Antibodies at a high range and I know that this indicates an active infection. My son's Anti-DNase B Strep Antibodies were at 390 which are high but I do not understand what this test is actually measuring. Does this indicate an active infection or past infection? Antistreptolysin O Ab was 15.1. Range is 0.0-200. To top it all off, my son ws diagnosied with strep 2 days ago. When this happen his vocal tic got worse and so did his tremors. I'm feeling just a little bit overwhelmed because I just want to keep him well. Big brother came down with strep 5 days before. How do you prevent the strep from spreading? My ds that has possibly PANS had already been on 250 Azthromycin since December 21st and now he is on Augmentin 2 times a day. I have been giving a probiotic before bedtime. How many hours should it be given after an antibiotic? How many days before you do a recheck to make sure strep is gone in both son's? Sorry to be asking so many questions. I will be getting copies of more new testing tomorrow. I am excited to know what may be causing the problems but very concerned about how I am going to keep my ds son well. Rachel
  15. I have been looking at the Gluten Free diet. I would like to know what symptoms it seems to help. I would love to hear any, success stories. I read the one on Jessica on the other forum with Safe Plate Diet. If you did this diet, how long to it take to see any relief with symptoms. Symptoms such as headaches, scalp pain, vocal tics, tremors, fatigue and low energy levels. What were the benefits of going GF? My son has no food allergies and has been tested with tissue sensitive gluten test and it was negative. I'm just wondering if putting my son on this diet would be worth the trouble. Rachel
  16. Have any of you been fortunate to find a Specialist that will communicate with you by email or a nurse line. The specialist I took my son to last December will do 30 minutes phone conferences for $175. I tried to ask a simple questions about a reaction to a medication and the staff said that I would need to set up a conference call. Is this how most specialist in the area of PANS/PANDAS and Lyme treat patients. I have insurance and they will not pay on conference calls like this. I have a cardiologist that works with us weekly by email and calls my house at least once a month. This doctor is willing to collabotate with other doctors since this condition is affecting DS blood pressure and heart rate. I guess the other question, I need to ask is Will your specialist collaborate with your main doctor? Hope I am not confusing you. I live in Oklahoma and our insurance will allow us to go see other specialist but treatment with IV has to stay within our state. Rachel
  17. Hi - my 12-year old daughter has PANS, I believe. Seeing PANS/PANDAS neurologist in northern NJ. Very elevated titers for myco (1400) and slightly for strep. Treating with Amoxicillin AND Zithromax. Has tics which may have actually increased since being on antibiotics (only about 9 days though). She will not take pills, tried Biaxin liquid but will not tolerate so switched to Zithro. Also has increased anxiety and has had one rage since on meds. Used to take Omega3 (Nordic Naturals with DHA for kids) , then stopped, and recently started again. Taking probiotic too. Her diet is GF and mostly dairy free but she is a picky eater and so has a lot of carbs. Trying to get her off sugar and carbs but taking the meds is easier when she has something sweet (nutella is her favorite chaser, also soy choc milk mixed with plain almond milk). Questions: Does anyone have any ideas/thoughts on antibiotics she is taking? Seen an increase in tics/anxiety/rages on these drugs? Read some kids have increased tics with Omega3 - maybe stop that? Any luck with steroids? Does anyone report ANY relief from just doing nothing - no meds, no discussion, just ignoring tics? All my daughter's anxieties and tics got 10x worse once I actually started looking into it and treating it. Started therapy. But scared to not treat myco and strep after reading Saving Sammy and online info. Any advice would be so helpful. Thank you. Bless you all for this forum and for your information.
  18. Our daughter was put into a study at the National Institute of Health earlier this month. We received a call with an immediate opening; so we are here now. She has tested negative for strep 4 times now. What other infections have you found, heard of, or treated in your child that that developed OCD/tics that, once treated, caused a remission of symptoms? The NIH has indicated we can have additional testing done. These are the current tests: EEG: awake and at night Sleep study EKG & ECHO Brain MRI Lumbar puncture; Only if we have abnormal sleep findings throat swab, urine test Blood draw for research and clinical(CBC with diff, Chem 20, quantitative immunoglobulins, iron panel, strep panel & HLA) We have heard that mycoplasma, coxsackie, entervirus, bartonella, babesia, herpes, erlichia may also cause the development of OCD/motor tics. Any additions?
  19. My ds 15 had a bad bout with Flu B last week --- very high fever, body aches, etc. Took Tamiflu, and is now left with a chesty cough. Oddly enough, his Pandas symptoms were not bad during the flu week...tics decreased, OCD, anxiety, and ADHD symptoms were all surprisingly decreased. Two days ago, however, the Pandas symptoms came back with a vengeance. Tics, OCD, anxiety, hyperactivity are worse than they've been in a long time. He also has a red, dotted rash on his face (we think this rash--which we've seen on his trunk before-- is yeast related). AND, he is finding it hard to make eye contact-- he has never mentioned this symptom to me before. He has consistently been on antibiotics, and he has ongoing mycoplasma. Any help would be greatly appreciated. Thank you.
  20. We started a couple threads previously. Our daughter had an acute onset November 9, 2013. Symptoms were minor for several days and peaked on November 14, 2013. The acute onset included involuntary motor movements and hopping/skipping between steps (complex motor tics). So many more symptoms became present through Novemeber 14. Our pediatrician made the referral to neurology. The neurologist stated that PANDAS and PANS is theory so we started hunting for doctors and new insurance. Since I work with kids with psychiatric disorder and the symptoms appear to be more psychiatric in nature I decided to talk with a psychiatrist. The psychiatrist in our insurance group agreed that our child displayed all the symptoms of PANS and or PANDAS. The pediatrician was still clueless how to treat this since she needs an infection to begin antibiotics. On November 26 we were notified by teh National Institute of Mental Health that our child could participate in a study. It turns out the NIMH is doing a complete medical evaluation to diagnose and check for known PANDAS/PANS triggers and other neurological/auto-immune disorders. We will be coming home with a treatment plan for our child. We understand treatment may be made for some things and not others. Mom was in the pediatrician's office at the time I was notified. A doctor at the NIMH called the pediatrician; who flat refused to treat with antibiotics, and discussed beginning antibiotics. The pediatrician immediately prescribed a daily dose of 2000 mg of Amoxicillin (1000 mg 2 times per day with a body weight of 45 lbs. When we return I will post a list of all tests and or procedures with a reason why they were performed. I hope this information will help everyone else who is struggling with this.
  21. Our doctor changed our son's (DS 15) antibiotic from Rifampin/Bactrim/Omnicef to Minocycline/Omnicef two days ago. His tics, anxiety and OCD have gotten even worse ever since. Wondering if this is from the change in antibiotics and if so, will it stabilize? Thank you for any guidance.
  22. Hi our daughter recently had a sudden onset of TIC and OCD behavior. The neurologist would only acknowledge PANDAS/PANS as "theory". All tests for strep at this point are negative. She previously has had strep and her private school routinely had a strep outbreak every few months to the extent school notices went out to alert parents of the symptoms. In researching this, I did find reference to other viruses that have been connected as a trigger for PANDAS however that was only one research institution studying PANDAS. Has anyone familiar with PANDAS found any other triggers, infetions or viruses, besides strep?
  23. hi all, I am new to the group, my son is 13, original autism diagnosis,then lyme and coinfections then PANS/encephalitis. This past 6 months have been for him and our family and nothing that has previously pulled him out of a flair is working. I am desperately trying to get him IVIG and find the right protocol. Have apt at Stanford in a few days, wondering if anyone can recommend a good doc in California or have experience with getting ivig with Stanford immunology dept? thank you deborah
  24. My cockpit has been hijacked. Over the past few weeks we had noticed that some of my son's behavior had been unusual for him. While perplexing, we coped, help him cope, and chalked it up to adolescence, increased academic demands at school, his maturity and an increased desire to be accountable, successful, blah blah blah. When I returned from my daughter's 3 day field trip just 11 days ago I was greeted with mayhem. Sudden, acute, confusing, helpless mayhem. We limped through the weekend, and then took our son to his pediatrician first thing Monday morning, and spent half the day at Seattle Children's Hospital. While our son was deemed "safe" to go home, we had few answers... but the term PANDA was used. A complete blood workup was done, off we went...back home, with our son that was not our son. Initial blood work was "normal", though his white blood cells and platelets are low - only to indicate "not much, he is either fighting or recovering from fighting a virus". The one test we would have to wait for was called an ASO titer, to see if AJ has or has had in recent months had the strep virus. Back to PANDA....research, read, freak out...this is my absolute diagnosis of course, this had to be it. My husband and I are dumbfounded at what we read, that something like this exists. Though we are so worried, at least this must be it. The ASO titer must come back elevated to show the evidence of the strep antibodies (or something like that....basic explanation). Not so fast. We found out that the titer was normal, not elevated, no sign of the virus. My hope quickly returned to despair, and we are now forced to begin the transition from an immediate medical explanation to explore a more immediate clinical explanation and begin treatment. We have been able to scratch our way past the sometimes months long waits into one of the best pediatric psych clinics in our local area. We met with the psychiatrist yesterday, most information gathering. We are trying to get into see an immunologist, with the help of both our pediatrician and the psychiatrist as everyone agrees that this is "atypical". Two weeks ago our son was one of the stars in his class play, and now he is plagued with OCD behavior, mood swings, and is unable to even see his best friends. I am researching experts on PANS/PANDA outside our local area (Seattle) as we are desperate for the help I think we need. In my heart of hearts, there absolutely must be a medical reason for this drastic and terrible change in our son. Thank you for reading this....and I am looking for any morsel of help, and input from others that have been in the same position but have come out the other side and returned to life as you once knew it. I am filled with despair, helplessness, and total fear. I have identified a couple of doctors whose names I have seen several times with respect to PANS/PANDA....if any of you have personal experience from either of them, please help. Out of Chicago - Dr. Miroslav Kovacevic and out of Palo Alto - Dr. Margo Thienemann.
  25. 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.
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