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lilsmom

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Everything posted by lilsmom

  1. About the tick bite. I probably didn't explain that well. Her ASD diagnosis came way before the tick bite. She had a small tick on her neck, we removed it. Over the next week or so the skin at the site of the bite was getting redder, inflamed...in general looking worse, instead of better. I don't think she had any neurologic symptoms, or at least that I noticed ( I should go back and check her ABA charts, which kept pretty meticulous detail of her daily status.) Anyway, we ended up taking her in, and the doctor was concerned it was infected, hence the abx (10 days.) At the end of 10 days she was walking up to random kids and initiating whole conversations, which she didn't do before then and has not done since. Also, DD was treated with ABA therapy (behavioral therapy where they keep very detailed records of the child's behaviors and responses.) Our ABA therapist brought to my attention that on two separate occasions, DD improved with abx treatment for strep. The first time the therapist chalked it up to a coincidence, but after the second time she thought there was a correlation and mentioned the idea of PANDAS to me. This was two years ago, and we have since stopped ABA, and aside from the tick-bite, DD has not been sick with strep or anything else since. So I have not had any other experiences to compare to. So, I'm not really sold on the whole PANDAS thing for DD, but that is why I am here asking for opinions. I think there are some things going on that need to be looked at, and I don't feel our current DAN is interested. So, I've ended up researching if a PANDAS doctor could help us. I really thank you all for the input. This is a group that understands how hard it can be to find the help we need for our kids.
  2. Thank you for the input, I didn't realize/expect there would be that kind of attitude, and considering many ASD kids also suffer from PANDAS/PANS, surprising. And very disappointing to hear. Sounds like finding the right doctor for us is going to be paramount. We already have a DAN who could not be less interested in exploring this. I'm not saying DD is not ASD. However, I need to find someone or someway to explain why she improved after ABX. Thank you for the response and input, I will definitely take that information to heart.
  3. Hi. I'm a new member who has been scouring your postings for the last couple days. I'm hoping some of you with experience might chime in here with thoughts or comments. My daughter has an ASD diagnosis, she is in 1st grade, pretty high functioning and verbal. What brings me here is I'm wondering about a PANDAS/ PANS type disorder, because DD had tremendous improvement after a course of antibiotics (for an infected tick bite.) The difference was akin to turning on a light switch. The improvements began at the 10 days, and after a week or so she returned to her normal self. She also runs a low grade fever pretty much all the time. There are a bunch of other things, but it was mainly her response to antibiotics that made me wonder...I saw with my own eyes that she could get better under the right circumstances. She is also one of these kids that improves when she is sick with a fever. Does it sounds like a PANDAS doctor might be able to help us? I'm not even sure PANDAS would apply to her, but I believe there is a huge immune component. Am I headed in the right direction here? We are fairly close to Dr. Latimer in Maryland...would that be a good place to start? About a year ago DD broke out with a ferocious grimacing tic that she did several times a minute. It subsided quickly over the course of a couple days. Our DAN did send up for Strep antibodies test immediately, but the results did not show anything. I don't think she has any other issues with tics. She does not seem to have a lot of OCD, but she is pretty rigid (especially about things being "right", though that goes along with ASD.) Thank you for reading. Any suggestions will be appreciated.
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