

EmilyK
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About EmilyK
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Rank
Advanced Member
Profile Information
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Gender
Female
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Location
RI
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Does anyone else at home have it too? We had no idea but turned out we all had it.
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EmilyK reacted to a post in a topic: Understanding OCD
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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!
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Tattoomom reacted to a post in a topic: Steroids... what does this mean?!
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Steroids... what does this mean?!
EmilyK replied to Tattoomom's topic in PANS / PANDAS (Lyme included)
My son has a rapid response as well. Enjoy the prednisone vacation! -
Online research study-Pandas Network
EmilyK replied to LindaMW's topic in PANS / PANDAS (Lyme included)
Took me 20 min - can't wait for the results Hope they get enough participants! -
Red flags in labs - not sure what's going on.
EmilyK replied to a topic in PANS / PANDAS (Lyme included)
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. -
IVIG not lasting because of chronic infections- question
EmilyK replied to LaurenK's topic in PANS / PANDAS (Lyme included)
Good questions - following -
EmilyK reacted to a post in a topic: DS-20 in open heart surgery right now
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EmilyK reacted to a post in a topic: For those giving high potency B vitamins
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EmilyK reacted to a post in a topic: For those giving high potency B vitamins
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Love this - thanks!
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EmilyK reacted to a post in a topic: Lesson on Stress -
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EmilyK reacted to a post in a topic: How do you cope?
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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.
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how long a course of antibiotics for treating mycoplasma?
EmilyK replied to EAMom's topic in PANS / PANDAS (Lyme included)
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. -
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
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Hayley reacted to a post in a topic: The need for more
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Mycoplasma how can I get rid of you
EmilyK replied to Hopeny's topic in PANS / PANDAS (Lyme included)
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. -
EmilyK reacted to a post in a topic: Mycoplasma how can I get rid of you
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EmilyK reacted to a post in a topic: Mycoplasma how can I get rid of you
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EmilyK reacted to a post in a topic: Mycoplasma how can I get rid of you
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EmilyK reacted to a post in a topic: Mycoplasma how can I get rid of you
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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.
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DS-20 in open heart surgery right now
EmilyK replied to tpotter's topic in PANS / PANDAS (Lyme included)
Hugs and prayers -
Teri reacted to a post in a topic: Spreading awareness and support - what would you want to see?
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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.