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ScaredMommy

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About ScaredMommy

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    CT
  1. Hello - my son had the flu-mist in Oct. 2013 and 5 days later started counting all the time and had anxiety. Lasted 4 weeks and went away before we got into see a specialist who confirmed Lyme IGG by CDC standards, and autoimmune encephalitis (clinical diagnosis). Started antibiotics and continue to be symptom free (OCD non-existent now) 2 months into ABX. Immunologist wants to try for IVIG (not sure we'll get insurance coverage) in hopes to improve long standing sensory processing dysfunction along with newly diagnosed learning disabilities (dyslexia, working memory below average, fine mot
  2. Oh...my son never had Eczema and I don't know if they tested for Cocksakie unless it is written in code on the lab work! I just wish there was a clear positive or negative written next to each result. So have this some don't and others just list the titre.
  3. I feel more confused after this long awaited appointment for results on the blood work. I left a message for the LLMD office to call me so I can ask more questions and get a copy of his visit notes. Looking up these tests on the internet, I don't think my son had/has Ehrilchia, anaplasma or Babesia Duncain as these results all say less than (<) the cutoff titre for positive. Are these what others refer to as Co-Infections? How is MycoP a co-infection for LYME - or is it just another PANS trigger separately? Or is it that the result doesn't say "negative" or "not detected" mean that he
  4. He was tested for many, many things. One thing he wrote down next to a WA1 IGG AB, IFA was Babesia Duncani and the result is <1:256. Not sure what that means and I can't recall what he said about that. I can't even tell what lab many of these test are from. The EHRLICHIA CHAFFEENIS & ANAPLASMA PHAGOCYTOPHILUM both SHOW <1:64 for IGG and IGM is <1:20 and the interpretation says "see note", yet I don't have a page with notes. The appointment was supposed to be 45 mins but he spent 2 hours with us. It was overwhelming and he talked a lot about things we know nothing about. He sa
  5. I posted a few months back regarding my 7 year old and the sudden OCD that started within 5 days of receiving the flu mist. All symptoms of OCD lasted 6 weeks and are now just a memory. My son finally had his follow-up with a LLMD to get the results of his blood work. He is negative on the IGeneX IGM yet showing positive bands 18+, 41++ and IND on 31, 34, 83-93. IGG shows Positive results with bands 18++, 30+, 39+, 41+++, 58+ and IND on 31, 34 & 83-93. He also has a High Mycoplasma Pneumoniae IGG of 3.47 (IGM is normal 197). Streptozyme positive (negative) A titer 1:200 High. He has
  6. Should I ask for specific blood work or should I expect that all of this will be covered with titer and a lyme check? I’m not at all familiar with the terminology. My assumption is that neither this doctor nor my pediatrician will initially look that extensively considering their admission of lack of knowledge on the subject, but I could be wrong. This at least will open up further conversation with his dr. I do agree on the meds, and right now I wouldn't even consider it. Thank you.
  7. Hi all, To those I haven't replied to directly, thank you for taling the time to talk to me. I'm still soaking all this information in. We just returned from the appointment with a Psychiatrist. Although she didn't really talk to my son, she did listen to his full history and took many notes along with taking my own written recap of his medical history. She didn't dismiss PANS or PANDAS but admits she doesn't see it in her practice. She did offer to contact my pediatrician to recommend blood work!! I do feel like we accomplished more than what I initially thought we would! S
  8. Thanks everyone for your input and sharing your stories and advice. I have a lot to learn. I did also complete the 51+ pages for Dr. Leckman and I'm waiting to hear back. I would welcome a 2 hour eval with him vs. a 30 min appointment with a Psychiatrist that happens to be available to see my son this week. So I took what I could get for now. I'll keep following up with Dr. B's office to push for an appointment too. My son is functioning fine right now despite these new OCD symptoms. It has not (yet) affected his daily life even if he stops to count 15 different times during the day. It
  9. I am overwhelmed by your responses! You are all very lucky to have the support of this group as I am I. I will continue to research all you've provided me and present to our pediatrician in hopes she will help me navigate the system as it relates to obtaining appointments and possibly I can convince her to draw blood tests now. Thank you!
  10. Nancy - Thank you for your reply. My Ped has made me feel like that crazy internet mom and I feel like one too. I didn't get the impression by her tone that she was looking to help me explore this as a possibility since she admitted not having knowledge with PANDAS. I know he could simply have OCD since the onset in a child is around 7 years old. I just didn't see this coming. I will review all the documentation you mentioned, thank you. I'm not hopeful anything will come out of our appointment tomorrow which I was told was just 30 minutes. I just want to have more information or one wh
  11. Thank you so much for replying to my post. It is amazing that our sons do have so much in common. It's wonderful that your son has responded to the treatment. How did you connect the dots to PANS? Was this through testing for Lyme and other infections? How soon did it take him to recover? I would never have thought of Lyme, although I did find a tick on him this summer (1st one ever). It was tiny and easy to remove so his pediatrician didn't even want to see him and no symptoms followed. I never gave it much thought after that. I will certainly look into that as well. Most of our co
  12. 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 whi
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