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Lori Ann

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About Lori Ann

  • Rank
    Advanced Member
  • Birthday February 11

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  • Location
    Charlotte, NC
  • Interests
    outdoor activities
  1. I am so sorry to hear about what you have gone through. We live in the Charlotte area and have had very little success here. I hope Dr. B can help you. We ended up seeing Dr. L in MD and received the help we needed. I do have a pediatrician here who is willing to work with Dr. L and prescribe antibiotics. I have heard that the doctors in Concord are familiar with PANDAS, but it is extremely difficult to get an appointment and the one doctor we saw in that office completely forgot to call us with his strep titer results! I found out from the psychiatrist (luckily she had access to his med
  2. By the way, I do not think there is any such thing as 100% recovery. We still see some residual behavioral things happening. I think that some behaviors become ingrained (ocd and defiance) and it is takes time to undo the damage that has been done. Vicki, I could not agree with you more. After surviving this nightmare, we will be extremely vigilent from now on and will always keep PANDAS on the top of the list of concerns. For all of you that are new to this disorder, I highly suggest making an appointment with a PANDAS doc instead of wasting time on a doc who is unfamiliar it. We travel
  3. I did not vote because our son fits into another category. We had success with steroids. He had been on seizure meds, mood meds, and antibiotics for months with no relief. Dr. L prescribed a 28 day predisone taper and we have seen great improvement. We finally have our son back. We are just waiting to hear about preventing relapses in the future. Good luck to you.
  4. If you are experiencing recurring skin infections such as staph and impetigo, it is definately related to the eczema. Our son has eczema and suffered several staph infections and molluscum (a viral skin infection. I read in several journal articles that people with eczema are lacking two important skin proteins that protect against infections, making them more susceptible. At the same time, I happened upon an article about treating eczema with probiotics. The bacterium Lactobacillus rhamnosis (found in Stonyfield Farms yogurt) works with the immune system in the gut to suppress the autoimm
  5. Thank you so much Emerson, you just explained to me how my son feels. He can not express his feelings in words, but you can do so eloquently. You just made things a little bit better knowing that it is not so much me, but the PANDAS.
  6. I know that I am not the only person going through this right now which is why I am on here typing this. How do we keep from going insane with the crazy things that are happening to our children and the lack of care from the medical community. I am sitting here in tears this morning because my ds 7 has just called me an idiot for the fifth time this morning and refuses to do anything I ask. He has just told me that I should be dead and I don't think I can do this anymore. He is the most important thing in my life and I will do anything for him, but right now, I can not stand to be around h
  7. Our son in on the mild side, mostly tics, separation anxiety, and mood. Doctor wanted to dismiss it as low iron, but Cam K came back a 175. Doctor stil won't treat with anything but abx, so we are going to see Dr. L next month.
  8. Wow, this sounds like my ds who just turned 7! He used to be a happy, healthy little boy until this whole thing hit last fall. He is just one big ball of negativity. For a while, he was very impatient too. You are right about not being able to entertain him 24/7. I used to be able to get anything done. (Thank God, I finished my Masters thesis the month before he became sick!) Now, it feels as though I can't get anything accomplished because he is so demanding. This is behavior I would have never condoned before. It is hard to discipline him because he does not realize what he is doing a
  9. Sorry for what you are going through and praying for you!
  10. Charlotte, is way too far from you. My best advice if you do not see a doctor on this forum is to call neurology or immunology centers in your area and ask if they are familiar with the disorder. Once you are pretty sure about the diagnosis, you might want to get in touch with one of the PANDAS doctors. We found that many of the local doctors did not really know enough about the disease to help us and we ended up making an appointment with Dr. L anyway. I wish you the best of luck!
  11. Thanks for your input Emerson, for a teenager (I'm a high school teacher, I should know), you are very bright and articulate. I think you are right about the doctors and I think I have the right combo now. I am seeing Dr. L next month and already have the pediatrician on board to work with her here at home. Looking forward to moving in the right direction. You are doing a good job taking care of yourself! Remember, your gut feeling is almost always right.
  12. I agree, I will ask for the full report tomorrow so that I can give it to dr. L. So glad I am going to see her next month!
  13. Doc did not explain much, but thought that the behavior was tied to the seizure disorder. Started ds on depakote, but we have seen no changes at all on this med, which is another reason why I am going to another neurologist tomorrow.
  14. After reading Emerson's post about her abnormal EEG, I had to ask the question. How many of you have had abnormal EEG results come back? We had an ambulatory EEG two months ago and when the results came back our doctor said that he has a seizure disorder and that he probably did not have PANDAS (titers were decreasing on antibiotics). He was very vague about the type of seizures and when they are happening. He was sure that the behavioral problems we have been experiencing (separation anxiety, defiance, rages) are due to seizure activity and low iron and that the PANDAS (if he had it at al
  15. I am sorry you have to go through this. We are going through this with our own son as well. I am starting a new thread now to ask others about seizures and PANDAS.
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