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simplyshine

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About simplyshine

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  1. Some ramblings here...Just curious if I'm the only one that has had a doctor completely opposed to testing strep titers and for lyme. I have asked for these tests for over a year and she simply balks at it every time. What are my rights as a parent? My ds was diagnosed with PANDAS by another doctor (we got referred to outside our insurance) about two months ago. He prescribed a prophylactic penn dosage, but never did any blood work either. My ds has been flaring terribly for two weeks now and the diagnosing doc does not want to change the abx. My son has no other signs of strep, but has had a
  2. Just read your post about the doctor recommended in Denver...would you be willing to share it? We are seeing a doctor presently who is very helpful but hasn't done any blood work or allergy testing, which surprised us since he did give our ds a PANDAS diagnosis based on our symptoms list. Thank you!
  3. Thank you for all your helpful response. We are really struggling with behavior issues and now feel we have to move forward on something, just not sure how since our dr won't prescribe abx. Also, how do you get your doctor to test for Lyme?
  4. I've struggled to understand how this all works with PANDAS...does it stay around until it's treated, does it go away on its own? Do the symptoms hang around even if the infection is gone? If so, how do you deal with the behaviors that don't go away? I clearly don't understand how this all works. If my child has had moderate to severe PANDAS symptoms in the past - sudden onset coinciding with strep -for about two years with symptoms reoccurring on and off at different severities but now has just mild symptoms with the exception of intense emotional outbursts and defiant behavior as well as att
  5. Having spent 18 months with out getting any significant help for my 10-yr-old son who continues to display severe to mild Pandas symptoms, I am completely frustrated and "done" with our Kaiser doctor. She brought up the possibility of Pandas at our first visit, however, just as quickly ran as fast away from it as she could. We've tried to deal with the symptoms to some degree, like trying stimulant meds and talking to a therapist. I have to admit that I haven't been willing to go through all the steps she's suggested, such as seeing a psychiatrist and sensory therapist, checking blood for thin
  6. Does anyone know if doing an MRI is a worthwhile pursuit in the diagnosing of Pandas? Our doc ordered one for my ds, however, I don't know if it makes any sense to put him through that process if it's not likely to be helpful. I'm really confused why a neurologist would even suggest an MRI in my ds's case, but that's the latest we've been told.
  7. Thank you so much! Now I have some things to offer the dr.
  8. I'm so grateful for the advice I've gotten so far from so many of you who are much more experienced than I with all the PANDAS info. My ds went to the pediatrician today. The dr asked me to send a link about the Cunningham Panel as well as any other recent Pandas medical research. Does anyone have some quick links that would be valuable to send to her?
  9. We are still working on getting a diagnosis for our son. The entire month of April was a flare-fest for him, and we reluctantly are trying Concerta to see if his time in school is more productive (teacher says he's "out to lunch" all day). 18 mgs did nothing and his teacher told me today that he hasn't seen any changes with the 36 mgs either. Is this possible proof that it's not ADHD and that something else is going on? He's been on the meds for two weeks. Also, his doctor finally agreed to do some blood work for us. We aren't exactly sure what to have tested and since I'm not that medically-l
  10. The strep tests came back negative, and since our doctor wasn't available, we saw a brand new PA who had little if any knowledge of pandas. Needless to say, the appointment was less than helpful, however we have seen some good things lately. I don't think I mentioned that we had been trying Adderall. The day before his recent strep test, and since he didn't have school, I took him off the Adderall. It's been fairly amazing to see that the OCD and hostile behaviors have diminished significantly and continue to stay at a low level. My thoughts are that either it was the Adderall that was trigger
  11. Thank you for your helpful comments and suggestions. I feel like I'm floundering around in all this pandas information and trying to process as much as I can. Meanwhile my ds is walking around the house with crazed eyes, lots of broad body movements (is that a pandas thing?), and an absolutely inflexible and angry attitude about anything and everything. I'm concerned that if swabbed for strep, it will be negative...and then what? The problem behind the doc's reluctance to test and treat him is because at our first appointment we told her that our son was a bit unfocused since he was young, a
  12. I'm having a difficult finding the answer to one of my questions regarding PANDAS. Our pediatrician has not been willing to diagnose our 9-year-old son with PANDAS, however, she agrees that all of the symptoms which abruptly began after a bout with strep seem to point in the direction of PANDAS. After testing his titers, one test came back high, so the doctor decided to treat my son with a course of antibiotics, during which our "missing boy" seemed to re-emerge -- no more OCD behaviors, sensory issues or extreme agitation. My question is this: After the round of antibiotics, my son's PANDAS
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