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rainingrebecca

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  1. I got Lyme either late first trimester or second trimester of my pregnancy. I figured out I had Lyme when she was 3 months old. I was extremely lucky to have figured it out so early. I was on Doxycyclin for almost a year. After 6 months on the antibiotics and almost feeling normal again, I started doing heat therapy and echinacea. Whether or not that helped me fully recover, I will never know, but I personally do think that is what finally kicked it out of my system. She has Hashimoto's and I believe a broader auto immune disorder. I had a thought in the middle of the night that maybe this caused permanent brain damage. I was hoping someone could tell me if the steroid burst caused a similar problem in their children and if it did, how long it lasted. I did see a tiny glimmer of my old daughter this morning on our way to school, so I am hopeful she will revert back to her quasi normal self after she gets the steroids and antibiotics out of her system. Then we can hope for a remission after we do a true treatment, possible IVIG. After the steroids, how long did it take for them to get better? Thanks for responding so quickly, this is really scary and I am kind of out of my head with worry. BTW, we are waiting for the IGX Lyme tests to come back, which hopefully will be back in the next 2-3 weeks.
  2. We are waiting for all sorts of tests to completely diagnose my daughter. In the meantime, the doctor gave her Azithromyicin and Prednisone. Her OCD, anorexia, aggression, depression etc0 worsened along with the other symptoms she has. She is being tested for Lyme and right now, I think that is a possibility as I was infected while I was pregnant with her. However, we have had a lot of tests since she was born and she has always tested negative, I am not sure why this would be causing a problem 10 years later. She has also had two really bad cases of strep in the past three years, so I am hoping that this is PANDAS not Lyme and Pandas. She also has Hashimoto's and it appears some kind of auto immune disorder. It has been 1.5 weeks since we stopped the steroids, does anyone have any experience with their child worsening on the steroids and abx and then getting better once they flush it out of their system? If so, how long did it take? Or, was this permanent for your child? Any experience and feedback is really helpful at this point because we are just waiting and I really need a glimmer of hope or a dose of reality. Thanks
  3. That is kind of crazy because my daughter has exactly the same thing. So, my guess is yes. Still waiting on Lyme test results, but in addition to the mycoplasma and hashimoto's she also has high strep titers. I would be curious as to your DD symptoms as well. Thanks!
  4. My daughter has just been diagnosed with PANDAS and I originally was just happy to get a diagnosis as we have been unable to figure out her constant abdominal pain, moodiness, tics etc for the past four months. We live in Colorado and on Monday, I have to start making decisions on how to choose a doctor, how aggressive to be and understanding this disease more. Her PCP has her cephalaxin and she is not getting any better. Have any of you had experience with some abx working and others not? Has anyone else had their child experience cyclical vomiting (roughly 3-4 weeks apart)? Is there anything that she can take while we are waiting to see someone? Echinacea etc? Does anyone have direct experience with any PANDAS doctor's in Colorado? I am feeling a bit lost and pretty scared as my daughter threw up again this morning and the abx do not seem to be working. Any tips or words of advice for us. Thanks!
  5. Hi I am new to the group and hoping someone can possibly shed some light on my daughter's condition. My 10 yo daughter had a strep infection about a year and a half ago that went undetected for 3 months until it was finally diagnosed, she did not have a sore throat so it didn't occur to the doctor to do a throat culture. She was having stomach pain and cyclical vomiting. We finally went to a different doctor who ran a test and once we treated her she was fine. Fast forward to August 2018 and she had a three week bout with vomiting, diarrhea and abdominal pain. I had them run a throat culture, but it came back negative. They did discover she had a TSH (thyroid) level of 37 and so we thought it was an endocrine issue. She tested positive for thyroid antibodies and was diagnosed with Hashimoto's. Here is where it gets weird. She has been having constant abdominal pain and every test (full GI work up, endicrine work up, endoscopy, tons of blood tests) that they have run at the children's hospital has come up with perfect results. I finally convinced my regular doctor to run an ASO test and it came back at 250. So, they started her on a 14 day course of Keflex. We are in day 5 and I do think her sensitivity to light and sound has improved, her appetite seems to have improved and so has the number of tics she has been having, but her abdominal pain has not improved at all. I almost forgot to mention and now her thyroid levels have returned to normal and she no longer has any thyroid antibodies. Does anyone have a similar story and can someone give me some hope that she can get some relief soon? The poor thing has had constant abdominal pain for 4 months now and nothing makes her feel better. And, I am worried she is never going to be normal again. Thoughts and advice welcome. Thanks
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