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Everything posted by kmacdonald34

  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.
  16. I would like to donate to fund research for PANDAS. Any recommendations? I want to make sure my money goes to the right place.
  17. When my daughter had her initial onset, refusal to drink was a symptom. She did not want to go the bathroom so she refused to drink and we ended up at ER for dehydration. It went away after a couple days. I think it is a symptom because one of the drs we see asked at the initial consult if my dd was restricting food or water. I second the popsicle or milkshakes or lots of fruit. The fruit has water and will help with her bathroom issues too. I know you have had a rough road lately so I hope you get some relief soon.
  18. At this point we are still not 100% sure of her trigger. However, the infectious disease doctor we see thinks it is strep based on how she reacted so well to the amoxicillin. He just thinks we did not catch the levels in the blood.
  19. Glad your son is doing well. My daughter is in a similar situation as she responded well to antibiotics. She has been on them since Feb and has had only 1 minor flare. We see the dr at Mass General and our current plan is to take her off all her meds for the summer to see how she does. I am nervous because I don't want a big slide back but hopeful that she will do well.
  20. I am sorry you and your daughter are struggling with all of this. We see the team of dr at MGH. Dr WIlliams heads the PANDAS clinic but it is hard to get in and see him. I called in January and I was told it would be 6 mths to hear about even getting an appt. We ended up seeing Dr. Walter the immunologist on the team and she got us in to see Dr. Williams after she saw my daughter. I would probably see if there is another specialist closer before making the trip up her. I agree with previous poster that maybe try a combination of abx. We saw Dr Williams the other day and he said that could be a possibility or a combination of abx and aleve if things get off track for my daughter. We have also talked that down the road IVIG might work for my daughter because she has immune deficiencies too. I hope you find some answers and something that works.
  21. Yes I would start antibiotics. We took a bit of a back route with my daughter. She had onset around Christmas and it took me 1.5 months to get in to see an immunologist who worked with the director of the PANDAS clinic. She is part of the PANDAS clinic and she said it is recommended to start with the psychiatrist to rate symptoms but since I was there and my daughter was clearly struggling, she did her part of the evaluation and ran blood work and allergy tests. This ended up being helpful because we learned my daughter was immune deficient and had allergies. Her immunologist then put her on antibiotics which helped her. Within in a week we saw a difference and within a month a huge difference. About 2 weeks after being on antibiotics we saw Dr Williams who leads the PANDAS clinic at Mass General. He had me go back and rate her symptoms at onset and how they were after being on antibiotics for 2 weeks. It did not impact how he evaluated her. In fact we just got back from seeing Dr. Williams again…he has been so helpful. So I guess that is a long response but yes, I would start antibiotics and just document how things have been going and how they go once on the antibiotics. Also my daughter never tested positive for strep but the infectious disease dr we see thinks strep is the trigger based on her good reaction to amoxicillin. YOu could also see if any immunologists or infectious disease dr work with PANDAS patients and can help in the meantime. Good luck! Hope the meds work and you get answers at the clinic when you go. The PANDAS clinic at MGH has been awesome.
  22. My dd's PANDAS onset was Christmas Eve. We finally got into see a PANDAS dr around mid February and she was put on antibiotics, after about a month, her symptoms were gone. She is still on them so she has been on them for about 3 months. The plan is to keep her on them till she gets out of school, try to go off of them for the summer when the risk of infection is lower. I will meet with her infectious disease dr. in August and decide if she should go back on in the Fall. His thinking is she might need to. He says more often than not PANDAS children need a year or so on antibiotics. He also said she could still have flares on the antibiotics which we did see once the pollen started but she is better now that she takes Zyrtec too. Glad your son has improved!
  23. When we first started my dd on antibiotics (she takes amoxicillan twice a day) we saw improvements within a couple days and then had a couple hard days and then after about a week things started to steadily improve. Within a month all of her OCD/anxiety and other issues were gone. I would still give it some more time. Hope the antibiotics end up helping!
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