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Pandasmex

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Posts posted by Pandasmex

  1. Hi

    Three weeks ago, my 15 y/o son had an infection. He's had several the last months, even though he's receiving IVIG, so OCD was coming back and a lot of anxiety too.

    DS told me for the first time in three years: help me, mom, please! I really need something for my stress.....it was heartbreaking!

     

    Now, he's taking Valerian Root and something else that in Mexico we called Passiflora. He felt calm and in better mood just in one or two days.

    It gave me the confidence to keep on using homeopathy...I'm using Ignatia, that really helped me. Starting DS carcinosinum for OCD though very low dose....and wait to see changes.

    Definitely, he's better.

  2. Hello

     

    My 14 y/o son is doing pretty good. Even though he's going to school and he's already caught a couple of colds...he is in very good conditions. Thanks God!!!

     

    He's taking daily:

     

    Zytromax. 250 mg

    Vitamin D.

    Iron

    Quercetin + C

    fluoxetin (very low dose)

    If he's tired or I see him kind of "different" ibuprofen 3 x day minimum.

  3. I just bought it today at Vitamin Shoppe (Quercetin + C) I've read a lot and seems to be a good supplement for these kids. I'm crossing my fingers and hoping this helps to avoid virus and allergies.

     

    Just one question.....my son is almost 15 y/o, what would be a good dose for him?

     

    Thank you!

  4. My son received seven IVIG during 2011 and YES it was Very helpful.

    No more tics, no more Tourette and I guess no more brain inflammation .

    He also was in the residential program of Rogers Memorial Hospital and in his case that was the special ingredient for him.....NO MORE OCD or anxiety.

     

    He returned home two months ago and he is doing great!!! He's going to,school and he is recovering the last two years that he was so sick...now my son is living like any "normal teen" thanks God.

  5. IOCDF link

     

    At the bottom of the IOCDF donate page -- it states how you can specify what kind of research you want to support. It lists PANS/PANDAS.

     

    The letter I am referring to came in my mailbox-- the one at the end of my driveway :)

     

    HE writes: "Recently, I have become more interested in the increasing evidence that infectious causes of OCD are very important, and we see young children who develop OCD suddenly after an infection (now referred to as Pediatric Acute-Onset Neuropsychiatric Syndrome or PANS). The children are routinely misdiagnosed and mistreated when correct treatment could prevent a lifetime of unnecessary suffering. Hundred of children with OCD are stuck in their illness and missing their lives despite the efforts of very dedicated parents. We need to know more about this and research is the key."

     

    AMEN TO THAT!! I am looking for my checkbook now...

     

     

    Powpow - THANK YOU!

     

    I know Dr. Jenike and YES he is a great person.

  6. Based on our 6 years of experience with a real bad case, psychiatric medications do nothing food to PITANDs/PANDAS symptoms.

    When Risperidon drove her absolutely crazy and mental we did use very low dose of Paroxetin to calm her until the weaning was over. Otherwise, we found helpful with ALL PITANDS/PANDAS symptoms antibiotics (Azith, going on for more than 2 years now), IVIG (cannot get any more), and we are using NAC and Glycine. Improvements are very slow, very small, but they are real.

     

    Bathsheba

     

    hello!

    What dosis are you giving her of azith? For how long?

     

    Thanks for your comments...

  7. I cried cause its so heartbreaking your son's story....it sounds like my 13 y/o son. He was such a nice and lovely boy as all the pandas kids. He also was very religious though he has fought with God many times. Before pandas he never said bad words NOW he has said all of them to God.

    He is improving like baby steps. No more tics, no more depression, he is eating twice a day though OCD maintains very severe. We are taking him to Rogers Memorial Hospital for therapy in a couple of weeks. I'm crossing my fingers this helps.

     

    I know your feeling! I have cried a lot too and sometimes in front of him. I guess it's okay, we are humans...we are moms...and we love our children.

     

    I wish I could give you a big hug and receive one too. I will pray for your son. ELVA

     

     

     

    Saidie and Tammi Stay strong!!!

  8. Thank you.....Very useful comments.

     

    We just made some blood analysis: Lyme, circulating immune complexes , thyroid profile, borrelia, Aso titers, etc. Now after IVIG all normal. Ferritin and vitamin D very low. He's taking this supplements plus vitamin B. He's also taking motrin and penicillin injected but we want to change it to augmentin again.

     

    We will go first to Rogers and good idea about ALL the necessary questions.

     

    Elva

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