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Everything posted by EmilyK

  1. Does anyone else at home have it too? We had no idea but turned out we all had it.
  2. Would the nighttime stuff be considered seizures? I second T. Anna's suggestion to check Anti-NMDA receptor encephalitis. Hope you find some relief for her soon!
  3. My son has a rapid response as well. Enjoy the prednisone vacation!
  4. Took me 20 min - can't wait for the results Hope they get enough participants!
  5. What about treating the myco-p? Do you see an immunologist? We struggle with myco infections here and crushing fatigue and sleep disturbance is one of the symptoms we face.
  6. I use it to cook and like you would use butter or shortening. We also apply it liberally as a lotion. It's great on yeast rashes too. When we're out at events, family, restaurants; we notice the kids are a train wreck with the diet interruption. But that's a mix of exposure to unhealthy fats, sugars, etc. I think the cumulative effect of the different things like coconut oil does help.
  7. My son has been on abx for myco-p since October. I have had several long runs within that time period too, sometimes up to 30 days. We get bloodwork done about every 6-7 weeks or so lately.
  8. My kids are much younger - 7 & 8 but it's definitely a challenge. 4 of us have been very sick with mycoplasma. Fine motor skills and balance of 3 of us are affected not to mention the respiratory and throat stuff. We're fatigued and I can say my processing speed is abysmal lately. I'm a bit desperate to get things resolved before the teen years! I'm very direct with them - Mommy's feeling very sick today and I need your help to listen. Your brother is really not feeling well and needs some extra space. We still have our blow ups though. I apply liberal bribery for the taking of meds and they are still young enough for it to work. Plus they have models of mom and dad taking their meds. I just bought my oldest a pillminder and he helped me divvy out the meds in the compartments. He's excited to use it for now. Probably not much use to your age group but I understand the exhaustion!
  9. Great ideas everyone - reading and learning. We are sick to death of being sick with myco in our house x4 of us. Zith, cipro, biaxin, doxy and sulpha drugs plus Olive leaf extract on board in various combos for each of us. The meat protein is very important for us.
  10. A few of us are looking at setting up a RI chapter of PANDAS Resource Network. And I'm grateful that my work and boss continue to ask me for help raising awareness for the schools.
  11. No - teacher and rehab counselor/paramedic plus adoption - bio family not engineers
  12. I've seen a family member, not my child with PANDAS, respond to abilify with decreased rage/mood but completely scary memory loss and confusion. So bad we were worried about ministrokes. Stopping the abilify stopped that symptom. Just an added word of caution and I hope it is nothing that happens with your child.
  13. YES. All four of us have been battling myco-p this year. I haven't felt so wiped out since I had mono in high school! It's awful. My muscles feel like lead weights. I deal with a lot of brain fog and leg pain at night from it too. My son complains of leg pain and you can see it messing with his processing speed. We've been doing various long courses of antibiotics - doxy, biaxin, azith, cipro.....
  14. I'm making my PANDAS awareness to do list as it pertains to my work at the RI dept of ed and here are some of my initial thoughts for a to-do list: info packet on math and writing learning disabilities and connections to PANDAS/PANS for special ed directors and school psychologists (I'm point in our office on developing guidance to school districts on learning disabilities, other health impairments, and emotional disturbance in the state) awareness brochures and or table display or something at an upcoming statewide summit on social emotional health being co-host by Bradley hospital and RIDE August 2nd (we're inviting school district leaders, reps from school guidance programs, social workers, psychologists, school resource officers, and more and working with CASEL on putting together the day with the goal of developing a statewide action plan to support social emotional education in our schools in RI) continue the stream of info we've started to school nurses and special ed directors and to heads of school psychology programs at URI and RIC build parent resources related to PANDAS at both the RI Parent Information Network and Parent Support Network bring awareness to the RI Special Education Advisory Council facilitated by my co-worker get in front of legislators with educational and mental health interest - this needs more thought of course, but it won't be hard for me to connect I'd welcome any suggestions, angles, critical pieces to include, things left out in my thinking. best, Emily
  15. What about Biaxin, Doxy, or Cipro? Those are in our Myco-p arsenal.
  16. I was also thinking myco or dust allergy. We keep passing myco around the house and DS and I are both allergic to dust as well. We know that morning cough!
  17. With our February flare, DS doesn't want to bathe or shower most of the time. He gets in a pool eventually, slowly, and then another period of forever before he gets his face and head wet. The kid who brazenly jumped open ocean waves ages 3 and 4! And dragging him to the bath? DH says it's easier to wash the cats! So happy your kiddo is once again requesting baths
  18. Ditto to what airial95 said. Good luck!
  19. I think I've seen others mention that Dr. B refers to and works with drs for lyme for his patients that also have lyme. Long term zith has gotten my son's myco levels down. My DH had a short course of doxy from our GP and that only brought it down by half. He has another appt today to try to get at least 3 weeks worth. I think he may have to give up and try to get out to Dr. B with us one of these times. I had a month of biaxin and then another month just finishing and already I'm feeling sick again. I suspect I shall need more!
  20. Tape and paper structures!! My son does that. I go through paper and tape like crazy. He called me a moron this morning when he didn't want to go to school and that got a rousing holler out of me - the mom who never used to scream at students as a teacher....
  21. Pandasphilly - that anaesthesia description sounds exactly like my younger son who we say is non-PANDAS although myco-p high and with sensory issues and sleep issues from the moment he arrived (10 months). Horrible reactions requiring hrs of restraint after anaesthesia. Now queenmother writes about the COMT regulating pain. This is the same child who feels little. We had an OT eval just shy of his 3rd birthday since he never would report hot, cold, pain, etc. His response to tactile input was astonishingly low. Wonder if that's all the same gene? We are planning to do 23andme soon for both boys seeing we have no biological family history for them.
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