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kmacdonald34

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Everything posted by kmacdonald34

  1. Poor thing. A lot of her symptoms sound like what my DD had when she had her PANS/PANDAS onset. Is a doctor willing to try antibiotics with her? My daughter never tested positive for strep or anything else (she is slightly immune deficient) . We are seeing a team of PANDAS dr and they tried amoxicillan and it worked. She is pretty much symptom free. Hope she can find some help and answers.
  2. I am in MA and that is interesting to read about some strains of strep not reacting to antibiotics in this part of the country. Thank you for all that posted. I know that PANDAS is different for each child and just wanted to see what others have been told or experienced. My daughter is still doing well on the antibiotics, although the bad pollen seems to be causing some flares this week (or at least that is what I think). We meet with her allergist this week so I will see what she says. I appreciate all the responses!
  3. I would say yes as well. My daughter has been on antibiotics for about 3 months and has been symptom free. HOwever, this week we have had a few days of flares and I am blaming the massive amount of pollen out there. I feel that it is inflaming her system and if she were not on the antibiotics we would be dealing with a massive flare. It would see if in the future you can get dye free meds and see if that changes her reaction.
  4. So happy to hear that the specialists at MGH have been so wonderful. We are just starting our PANDAS journey and have only seen each dr. once. We start our second round of appt. this month. I think stopping is the right choice, particularly since you have already seen anxiety decrease. Hope your appt. goes well Monday. Keep us posted!
  5. Thank you joybop, for your motto, I love it. Right now my daughter has been on antibiotics for almost 3 months and is pretty much symptom free, just a few minor minor flares. I think we caught her PANDAS on the earlier side so I am hoping her recovery is on the shorter side. We are going to try no antibiotics this summer and see how she does. Hopefully she will do well! Hope your son is back on track soon.
  6. This is one my questions I have next time I met with our PANDAS drs too. We also see Dr. Kyle Williams and so far have had one appt. I cannot remember his suggestion. It was my first appt and my head was swimming with all the information he gave us. We go for our second appt in a couple weeks with him and this is one of the questions I have. Hope your appt goes well. Do you see any of the other drs there? We also see Dr. Walter and Dr. Pasternak, both who have been very helpful
  7. I am sorry for your loss and all you are dealing with. If you could find a PANDAS dr, even if it is long car ride away, it is worth it. One of the dr we are seeing gave me a year long prescription to antibiotics so that we would never run out. Hope you can find some help.
  8. I am new to this PANDAS journey but one of my daughter's dr said that even though strep appears to be her trigger (even with low titers, just based on amoxicillan eliminating all symptoms) that other things could still trigger flares. So yes, I would think strep could trigger the eye blinking. We had a couple minor flares last week and I am blaming the massive amount of pollen out there. From my understanding other stressors can cause flares other than the original trigger.
  9. One of the dr my daughter said that even though it is not confirmed strep that triggered PANDAS he believes it is. He also said other infections could still trigger PANDAS flares. So yes, the cold could be making him flare even though that might not be the initial trigger.
  10. My pedi was reluctant to run tests too. I pushed for tests and she did them and nothing came back as flagged and she said PANDAS was not a possibility. But after doing some research, I found you don't need positive strep or titers for PANDAS so I went found PANDAS dr. All 3 diagnosed my daughter with PANDAS and there was no blood work to back it up so I would try and find a more expert PANDAS dr. My daughter has been on amoxicillan for 2 months and it has worked great. Good luck.
  11. I also think a lot of doctors do not know enough about it. My pedi initially refused when I asked for a referral because she said a negative strep test and blood work meant no Pandas. Then I pushed and she wanted me to go to Boston Childrens Hospital because it was in her network and not Mass General where I wanted to go. After a lot of pushing by me she gave the referral and now my daughter is being seen by 3 great dr, on antibiotics and so much better. Even one of the dr my daughter is seeing said 5 or so years ago he did not believe either but after seeing case after case after case, there is no way he can't believe. I think over time more and more dr will change their views but it is hard. I feel your frustration.
  12. We saw a difference with my daughter within in a week. By the end of a month on antibiotics her symptoms were gone, no more OCD, no more anxiety, no more moodiness, back to her happy 6 year old self. She has been on them for about 2 months now and will stay on them till school gets out to lower the risk of another infection.
  13. I had, and still have, so many concerns about dd being on antibiotics for a long time but they are working and I never want to see her back where she was if possible. So to me the positive of antibiotics outweigh the negative. I have done a lot of reading and the prolonged use of antibiotics can be safe. Hopefully your husband will do some research and realize how important the use of antibiotics are to help with PANDAS/PANS.
  14. Thank you, great advice. I feel like we have a great team supporting our daughter and I am trying to educate myself that best I can. I must say it is overwhelming. This board has taught me a lot already. Hopefully we can all continue to get our kids the care they need.
  15. I am still new in the world of PANDAS/PANS. My daughter is seeing a team of specialists at Mass General and all determined she does have PANDAS. She has been on amoxicillin for 1.5 months and her symptoms have disappeared. The team of dr has been great and told me what treatment could look like in the future and how PANDAS can manifest itself. After meeting with the infectious disease dr we are going to keep her on the antibiotics till school is out, try a break in the summer and probably go back on in the Fall. THrough all of this, I have yet to ask if her PANDAS will ever fully go away, maybe cause I don't want to hear no but now I want to know. Can a child fully be cured from PANDAS or might it impact him/her throughout life? Thanks!
  16. We are still relatively new in the PANS journey as well. My daughter changed into a totally different kid on Christmas Eve and I remember how scared we were and at times still are. We just met with 2 PANDAS/PANS specialists over the last few weeks and they have been very helpful. She did not test positive for strep which is why the dr. gave our daughter the PANS diagnosis. We are currently on the 3rd week of antibiotics. We saw improvement after 2 weeks but she got a cold again and regressed a bit. We think her PANS might be based on respiratory illnesses . I agree with pr40 that CBT does not work when things are really bad. I know it would not have helped a bit with her then and now she is still resistant as well when things are tough. We have put it on the back burner for a bit while we got the medical sorted out. Good luck and hang in there!
  17. My daughter was put on prednisone after a respiratory virus this past Christmas and she was so moody and cranky. That can be typical of steroids. We are just starting our first round of antibiotics for our daughter so I don't have much experience yet, we are on day 2. From what I have read, figuring out if your child has Pans or Pandas can be a long road and sometimes bloodwork needs to be looked at a lot. I would call your dr and see what he/she says. I hope you get answers or progress soon.
  18. Yesterday we took Emma to meet with a dr who specializes in Pandas along with a lot of other areas. She was fantastic. She completely understood my concern about Emma possibly having a Pandas/Pans reaction (though more likely Pans reacting to pneumonia). She ran a ton of blood tests to see what might be going on. She also wanted to look at Emma's lungs and possible allergies because of the respiratory issues she has been having. The pulmonary test showed that while Emma is not clear cut asthmatic, she is close and respiratory illnesses will probably hit her harder, which they do. Turns out she is allergic to dust mites, cats (stinks that we have 2) and cockroaches (who even knew this was a possibility!). She was so thorough it was great. At the end of appt. she recommended I see the 2 main dr. at the Mass General Pandas clinic and have them look at Emma for Pandas/Pans. Then last night at 8:30 she called me after getting some of Emma's bloodwork back. She said one test flagged high (I forgot name and it was hard to understand her but maybe immunoglobin?). she wants to start her on antibiotics to see if it will address OCD. She is also going to call the Pandas/Pans clinic and make sure Emma is seen within in 4-6 weeks. The dr was great. She listened to my concerns and was so thorough with Emma and looked at everything. I cannot believe she called me at night when she could have called me the next day but she wanted me to get the results as soon as I could and knew I would be waiting. So while it looks like Panda/Pans might be the answer (not sure how I feel about that, good to have answers but Pandas/Pans can be tough) I am just glad we are on the road to getting some answers. It was also nice to have a dr listen to me and really investigate all areas.
  19. Thank you Maryaw for the D3 supplement suggestion. Will get that this weekend.
  20. Next available appt is May. Will be going tomorrow. Thanks for input. Will update tomorrow.
  21. Thanks. From what I have read, I realize that the PANS fight can be a hard one. We have started therapy, started inositol and omegas and probiotics and will look to diet next. I appreciate all your input. I know how hard it is to get heard when your child has Pandas. At student at my school had it and it took her mom so many months till she found a dr. who would listen to her and by then her daughter had severe issues. Will keep you posted. We are buried under snow and I have not worked (a teacher)in a days so not sure if I will see if I can push the appt. back. Getting into Boston right now is a nightmare. Thanks again.
  22. She had one mild period of OCD/anxiety last spring where she didn't like her hands dirty. It did last for a couple weeks and then disappeared. We had nothing for months and months till the pneumonia this summer. Looking back it could have been OCD or just 5 year old sensory stuff. I had never dealt with it before so I had no idea. Compared to what we are dealing with now, it seems like nothing. Her symptoms now are clear cut OCD and are significantly worse. I would dream to go back to last spring when she didn't like her hands dirty for a couple weeks. I will definitely post her blookwork results here and see what you as a group thinks. And are you saying, a lot of people with autistic children go to Mass General looking for a PANS/PANDAS diagnosis? My daughter is no where on the autism scale so that is not my goal. Thanks for all your input.
  23. I guess what I am looking for is a dr. to look very specifically at her bloodwork and see if there is anything that along with her severe OCD onset might lead to the idea of Pandas/Pans. I do not think hers is strep based but more pneumonia based. She was hospitalized at the end of the summer for pneumonia and after that we saw a couple spikes in OCD. Then she got sick with a respiratory infection before Christmas (and I regret not having her lungs x rayed) and we had severe, sudden onset OCD that was extremely bad for a month. It is better but she is still not who she was before she got sick at Christmas. So I guess I want a dr. to look at her symptoms and bloodwork and say not PANS and we can just treat it as OCD.
  24. I have an appt on Thurs. with Dr. Walter at Mass General. She works with Dr. Kyle Williams and other Pandas dr. at Mass General. Any tips on things to ask/request? I am still not sure if Pandas/Pans is what my dr. has but I want to eliminate it if possible. Thanks!
  25. She was on antibiotics for 5 days when she was in the hospital. There was no symptoms while she was in the hospital but I noticed an increase after. She was on no antibiotics after this massive onset of symptoms. She has just been using her inhalers to help the respiratory issues. Will check the archives for hopeny posts. Thanks,
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