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Posts posted by sarojane

  1. Hi Kim,


    She was on day 3 on augmentin when the crazy pee urge happened. She was insanely wound up right before bedtime and went like 10 times in an hour. Mostly felt like she had to go but couldn't. I finally gave her .5 melatonin and the d mannose so she could sleep.

    She just started the PANDAS symptoms two weeks ago so thus is scary to us.

    I've noticed though the nights I end up giving her the melatonin she has a smoother day. I know I'm not supposed to rely on it, but it sure is tempting. I found that giving her p5p tones her symptoms down as well.

    Nebulizing 2 drops of nascent iodine 1 time per day really seems to bring the old kid back for quite awhile also.

  2. Coincidentally my dd had this issue in the extreme last night. I gave her 4 grams of d mannose and it worked either physically of psychologically in about 20 minutes.


    She has just recently been diagnosed and we had used the d mannose for uti in the past and it has worked so she was much calmer just by me telling her I was going to use it.


    Her urine culture was negative as well. Is the bedtime urge to pee exacerbated by the ocd?

  3. My daughter just recently started having PANDAS symptoms after a strep infection.


    She was prescribed Cefdinir Which has a purple and blue capsule. After the symptoms started, my husband researched info on the drug and the capsule has red dye #40 which causes hyperactivity and migraines in my daughter and we unwittingly gave it to her for ten days.


    I wonder if this pushed the start button for PANDAS by inflaming her brain while having strep?


    Also, I wonder if I need to be more vigilant to future exposure to allergens as well as strep and infections.

  4. Thanks Hope.


    It's really frustrating with the blood draw issue, she had an IV in her for two weeks at hospital and they kept having to put in new ones, she could not communicate or even feed herself because of the encephalitis and she would just scream and scream.


    She doesn't remember much of the hospital but she has this needle phobia now.


    We think it was tick bourne (they tested for around 20 things -inconclusive) Because we were in the woods of NC for a week the week before, and the symptoms fit Powassan virus to a T, her ped doctor thought it was Rickettsia or Recurring tick borne fever. She is well educated in Lyme, but because of this blood test issue, not much can be treated yet.


    My DD seems fine today. I did the nebulizer with 2 drops nascent iodine and gave her some candex enzymes and seems normal. Thank god, goddess, whoever! Fingers crossed no more major upticks.

    Small birthday party today, we will do iodine treatment after to ward off invaders. I have a child size mask, and the mist goes into the sinuses as well as the mouth throat and lungs. Maybe this is a magic bullet for us!

  5. We have been gf for 4 years and just gave up all dairy but goat kefir.


    We want to do as little abx as possible, I have read that abx could cause bacteria to amp up biofilm and hide from eradication. She could have lyme and coinfections as well. These also hide in biofilm. We haven't tested since hospitalization because she freaks out and it's impossible to get without sedation or restraint. Hopefully going to start therapy soon so we can do this.


    Excited to get the rock rose tea I ordered from Germany to repel and shred biofilm.

  6. Thanks for the advice. We were using ut vibrance that contains uva ursi and d mannose. The night time peeing gave us a rest last night.


    My dd had really extrme emotional troubles yesterday and this morning non verbal grunting and crying, this stuff is so weird! Reading up on it and seems that's caused by die-off, yeast overgrowth. We backed off the oregano oil a little and kept her home and went to the beach to de stress and ground a little. Gave her a b complex which has inositol, that might of helped, also started using inner-eco probiotics.

    My husband wants to keep her out of school the rest of the year and do school work from home because she is in a very small public Montessori school where everyone is touching everything. There has been a virulent strain of strep in a different classroom that they have little contact with. Is this tiny bit of exposure enough to cause a flare?

    I understand my husband's wanting to keep her home, but I know she will be heartbroken and stressed out about this.



  7. Hi, our 8 year old daughter recently started having PANDAS symptoms after 3 bouts of illness over 4 months all negative throat culture but treated with amoxycilin and then cefdinir with diagnosis of strep.

    The last two bouts were most severe and many symptoms of rheumatic fever.


    1.5 years ago she was hospitalized with meningitis/encephalitis. 105 cyclical feverthat abated 24 hours after doxycylin, aphasia,bells palsy.

    It took her a year to fully recover from the brain inflammation and so a lot of these pandas symptoms are similar to her lingering symptoms she recovered from 6 months ago.

    I have recently put her on oregano oil, black seed oil, serrapeptase for biofilm, 50 billion probiotics, juat started berberine. Using vitamin c, D and b complex in smaller doses. Boswellia (radoqol) for brain swelling.


    Interested in homeopathy, but wanted other people's experiences with Dr. Fontaine before $$$.


    We will probably homeschool next year to limit her exposure.


    Please any and all advice wanted!

    Her symptoms are -

    Separation anxiety

    Loss of words when frustrated or angered

    Mood swings

    Frequent urination

    Obsessive thoughts especially at bedtime

    Surge of energy at bedtime.

    Decline in math skills


    We love our doc, but she is out of the country, and we cannot get in again with her till June.

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