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EmilyK

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About EmilyK

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    Female
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    RI
  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.
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