jenann Posted February 11, 2014 Report Share Posted February 11, 2014 This is my first post here. I have been in the midst of my DS's (5) first PANS exacerbation myself (started Nov. 11th, 2013) and I feel a strong connection to your story. As well as others that have posted here that have had PANDAS/PANS children that were triggered by the FLUMIST. Hopefully my post/reply helps you and others to not feel so alone and help you to gleen some insight into the healing that I have I've seen so far. I also have a question, but want to give you all a little history on us first! My DS 5, had the FLUMIST on 10/30/13. 3 days post mist he came down with a fever nausea, and slept a lot. At first I just thought it was viral infection. I gave him Ibuprofen, fluids and let him rest. A few days after his illness he started acting unusual. Stripping his clothes off, making growling noises and saying he felt like his skin was burning. He also was still complaining of nausea. For about a week he acted strange, very impulsive and regressing in his behavior. He started carrying his "tee tee"(baby blanket,) and mouthing everything in sight! I didn't make any connection at first with the flumist until on Nov. 12th, 2013 (his 5th b-day) the explosive exacerbation happened. He began full body tics, snorting, high pitched screaming, and having OCD "bad thoughts" and asking repetitive questions. Everything had to be his way, or he would have a complete melt down. He also had urinary frequency, aggressiveness, and could hardly get to sleep at night. He was completely off the wall in his behavior! I didn't sleep, or get out of my pajamas for 2 days. It was so very frightening to see my son become a completely different child overnight! In the middle of one of those sleepless nights, the"lightbulb" turned on, and I wondered if the flumist could have caused this? I searched the internet and made the connection here on ACN latitudes that yes, it could be an autoimmune/(inflammation in his basil ganglia) response to the mist and possibly PANDAS/PANS? I brought him to our pediatrician on Nov. 13th, explaining to her that I believed he was having a reaction to the flumist. To make a long story as short as I can, I sat there for 2 hours and still she couldn't explain to me what was happening. I was referred to a developmental pediatrician, then a psychiatrist who finally diagnosed him December 11th, 2013, with PANS, after 2 months of heartache! (In desperation, I live in MN, if I couldn't have gotten him help, I was very close to hopping on a plane to go to Chicago to see Dr. K.) My son has been on Augmentin chewables 1000 MG per day, since Dec. 11th. (400MG in the am, 200MG in afternoon, and 400MG at bedtime.) We have seen much improvement since going on the antibiotics. He is about 75% back to himself. We very much have been seeing the sawtooth pattern of healing, 2 steps forward one step back! Just when I feel he is doing better something will pop up again. He's also had two illnesses with fever and sore throat while on the antibiotics that caused "mini flares." He is on probiotics, and I am giving him Epsom salt baths. It's painfully SLOW! He has missed a lot of preschool. It feels like it will never end! Question for you all- I am very nervous and scared, his Dr. wants to discontinue his antibiotics this Friday (after about 9 weeks.) She wants to stop abruptly, no tapering of his antibiotics. Is this the way the "PANDAS Specialists"do it? She doesn't believe in long term antibiotics. My Dr. had also went to a conference in the fall of 2013 and thought that this was how Dr. Murphy does it. She hasn't made any mention of steroids, or IVIG. I doubt she will go beyond giving antibiotics? The only tests run were strep titers, which were normal, so she is calling this PANS. I have not ruled out going to see Dr. K., in the near future if need be, but don't really have a choice at this point but to follow her direction. I do feel very grateful that I got the antibiotics with out a positive connection to a STEP test/or titers, but I am very worried everything will go back to where it was in the beginning! Any advice? Thank you all very much for taking the time to read this and for all of the information posted on this website! It has been a source of comfort in a very weird and frightening time for me. Link to comment Share on other sites More sharing options...
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