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  1. The drs we see have told me that stress, allergies, infections or viruses could trigger flares. So I would say yes that whatever illness your daughter was fighting caused a flare. Not all flares are the same. Also, the reduction of the amoxicillin could be a factor too. My daughter was on amoxicillin (prophylactic dose) from Feb-July. We took her off the amoxicillin for the summer and within a week she was flaring and within in 2 weeks she was really struggling. We put her back on amoxicillin but we could not get back to 100%. One of her dr said that although the body does not get resistant to amoxicilin maybe the saliva in the mouth was breaking down the strength. So we moved her to Cephalexin and she is doing much better. So you might want to keep her on a higher dose and see if that helps her maintain.
  2. When my DD was put on antibiotics this past Feb, her PANDAS/PANS symptoms were completely gone within a month. We saw dramatic improvements within 2 weeks. She stayed symptom free till July when we took her off the antibiotics. Her drs wanted to see if since the risk of infection is lower in the summer, she could maintain. Well within a week or 2, her PANDAS/PANS symptoms started to come back. We meet with Dr. Williams to see his take. He said that while it would seem she is infection free, maybe the antibiotics have a calming effect on the brain. He said there is emerging research that antibiotics can help with OCD symptoms and maybe that is the role that prophylactic antibiotics play in helping PANDAS kids. We put her back on amoxicillin and it brought her back to 50-75 % recovery and so we are now trying Cephelaxin after meeting with her other dr. We just had blood work back and everything seems fine so it doesnt seem she has an infection so I guess Dr. Williams idea of antibiotics calming the brain could be what is going on. So hard to figure it all out!
  3. I agree. My daughter has borderline low immunity and Dr Williams said this diagnosis is important to hold on to in case with IVIG down the road.
  4. Glad to hear his symptoms are gradually going away. I hope your appt with Dr. Williams is helpful too. Good to hear you got in after waiting only 2 months. When I originally called int he winter I was told 6 months but got in quicker after seeing Dr. Walter.
  5. I just got an explanation of my visits from my insurance company and I think it said the visit for Dr. Williams was around $350 had it been paid out of pocket. Thankfully with my insurance it was a 20 dollar copay. Dr. Williams does still have a waiting list I believe but doesnt hurt to try.
  6. I agree that Dr. Williams is reluctant to do high dose IVIG. However, he did mention that my daughter might need low dose IVIG at some point. Dr Walter uses this with her immune deficient patients and my daughter is on the borderline of immune deficiency and Dr Williams said between that and PANDAs she might need IVIG down the road.
  7. We see Dr Williams at MGH and he is wonderful. We also see Dr Walter (immunologist/allergist) and Dr. Pasternack (infectious disease). These 3 dr work together as part of the PANDAS team to make decisions about how to treat patients. All 3 of the dr have been fantastic. We actually started by seeing Dr. Walter because Dr. Williams was not accepting new patients. We went to her with allergy/pulmonary concerns and I knew she was part of the Pandas team and wanted to bring up my concerns about that as well. She referred us to Dr W and Dr P. My dd was put on antibiotics in Feb and within a week things were much better and within a month all her symptoms were gone. We took her off the antibiotics a couple weeks ago and her Pandas symptoms are back. I called Dr. W to get advice and we are going to see him Monday. So I guess that is a long response If you can get into the MGH clinic I recommend it.
  8. A 504 is a legal document too, teachers not following it could get in serious trouble. In my district there is a case worker assigned to each child on a 504. I know the teachers in my school take them very seriously. His difficulties in math seem like they could get him to qualify for an IEP. Sorry it has been such a tough road for him!
  9. As a teacher, I would think you would be offered a 504 instead of an IEP. To qualify for an IEP you need to have specialized instruction in order to make effective progress (ex. different reading instruction). Whereas if you have a health disability (like PANDAS) you could get a 504 to provide accommodations such as extra time, sensory breaks, small group instruction, modified work, etc. If you really feel your child needs to be on an IEP, then as a parent you have the right to request an evaluation. However, if the school does not find your child qualifies through their testing, they do not have to put a child on an IEP. Is he not making progress in school?
  10. No answers but I can relate. We took my daughter off antibiotics about 2 weeks ago and her PANDAS symptoms are coming back. In addition to her OCD, anxiety, she is moody, aggressive and irritable. Her moods are all over the place. Not sure what is going on other than she isn't taking the antibiotics any more. We see her dr on the 20th and I can't wait to touch base. I hope your dd's flare is short lived. I am tired of it too, so frustrating.
  11. It definitely sounds like it could be PANDAS/PANS. I also suggest finding a dr who specializes in PANDAS/PANS. Hope you find some answers. I know how hard it is to see your child struggle.
  12. I think it is the severity and onset on the symptoms with no other cause. My daughter was a happy child who had mild anxiety issues but never impacted her life. She got sick before Christmas and overnight changed into a anxiety, moody, aggressive child with severe OCD. Once on antibiotics, her symptoms went away. All of this together lead to a PANDAS diagnosis. As a teacher, I teach kids with anxiety, OCD and ADHD and I think the difference is their symptoms are not associated with illness and they do not come on rapidly. Most of the children have suffered from these issues for years and over time they get diagnosed.
  13. My daughter has borderline immune deficiency and her drs are documenting it in case she needs IVIG down the line. She said many insurances have a hard time accepting IVIG but for immune deficiency they will . She would only be doing low dose IVIG though, not sure if that is what your dr want for your child.
  14. I was the pushy/ crazy parent. My pedi was open to PANDAS until my daughter had a negative strep test and then did not want to pursue it. She thought a negative test meant not PANDAS. I had to fight/ push for a referral to a PANDAS specialist. My daughter sees a team of PANDAS dr and they all agree she has PANDAS. She went on antibiotics and her symptoms went away. A lot of them were similar to your child. I would start with a PANDAS specialist and be that pushy parent. Trust your gut. I hope you get some answers!
  15. I do not have an answer but the urge to pee more frequently was one of the major symptoms my daughter had when she got PANDAS. She would go over and over and over and over again. IT was exhausting. She has been on antibiotics for almost 5 months and is symptom free. So I guess I have no advice but we did rule out a UTI just to make sure that wasn't the problem. I need to understand more about the detox people are mentioning.
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