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melanie

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Everything posted by melanie

  1. melanie
    500 mg depakote. Dr j wants him off the depakote she says it's a problem for immune system.
  2. melanie
    I cut the rose in 1/2. .25 at night I can't get rid of his anxiety. The 1 st week was horrible. Since I cutit he's been ok. Just want to help him. Not a fan of the anti psyche meds. Has bad experience with risperadol and abilify years ago. Ughh .
  3. melanie
    HUH?? Nancy what is that about...What !!!This is dannys Dr please inbox me
  4. melanie
    Trying a low dose of seroquel but Dan uses Nac. Is there a problem with that. Not happy so far with the medication and I'm not sure if the nac is reacting with the seroquel.
  5. melanie
    Dr najjar is dannys dr. If anyone needs a referral in box me. He is unbelievable. Love him!!!
  6. melanie
    I agree. Dannys ASD is definitely caused by illness.
  7. melanie
    My son does medium dose 1g per kilo every 21 days for 3 years. Been a long road but he's much better. He was always sick as a small child. He's 18 and still gets some ilness even with ivig.
  8. melanie
    Has anyone tried this for OCD? Good. Or bad. Is it along the same line as nac?
  9. melanie
    Shouldn't ave any strep. He's on minocycline 100 mg daily. Acne much better but I do notice flares and behavioral changes. What does the zinc do?
  10. melanie
    I have noticed some of dans behaviors increase with his acne.I know its elevated hormones .He has very hairy legs not chest or back but legs!! Is there something I can try to help this.Years ago we used spiraloate? Cant get the dr to do this any ideas??
  11. melanie
    Dan has been doing unbelievable until this week. Not sure if it's the NAC no longer working. Does that occur? He also did 2 feedback sessions. I'm wondering if that's possibly it. Ughh WHY!
  12. melanie
    Dr najar doesn't do dannys ivig. He did the PEX. Dr J does the ivig. Did steroids with dr T 3 years ago.
  13. melanie
    I feel like this will never end!! He is doing great but Im never satisfied.One day great one day eeh ,I cant talk to him if hes thinking about something.He gets real annoyed.I concider those days flares?? Some days I can just scream .Hes watching all the old programs he used to watch when he was younger.Power rangers etc..So not 18yr old shows.its like hes going backwards .Do you see a difference with the 200 mg? I think when he gets that annoyed ticcy behavior Ill try low dose steroids like 10 mg for 2 days?? Also he continues with the accupunture Does Allie? Starting biofeedback again wednesday
  14. melanie
    We use minocycline 100 mg 1x day. I think we should use more. I will if someone else does. Also if you are having. Flare. Meaning behaviors. Do you use steroids. .
  15. melanie

    Hi. I have to say I would like to up the dosage but his immunologist won't. I can tell you that Danny has come a very,very long way from when this took over his life. He is doing well not cured no not cured. He is 18 and acts as if he's 14. Minor like he stopped maturing when pandas hit. I will continue the ivs until ?.. So the answer is yes. It has helped a lot !

  16. melanie

    Congratulations on the grand baby. Hope she's ok. I'll tell you more when I speak to the md today

  17. melanie

    Call me later after work and I will look at the insurance paper and see what the codes are ..I had to fight but Dr T was the one who got me approved 732-489-6375 I dont use him I use UMDNJ but he was the initial DR

  18. melanie

    Im sure Ive asked this before .What dosage monthly are you using??

    Thanks Melanie

  19. melanie

    Mary can you tell me the dosage our script is 250mg 3x a day

  20. melanie

    spect

    1. melanie

      melanie

      Continuing IVIG every 21 days at home 2 years at (60 grams )Completed Plasma Exchange (5) November 2011.Dans getting better but not cured .DX with PANDAS by 5 different MDs and autoimmune dx for IVIG.Has made progress and slowly improving.

    2. moccosisco12

      moccosisco12

      hi, melanie.

       

      I really would love to talk about your son. My DS is 14 and really stuggling with movement disorder due to PANDAS and now Coprolalia. my email is ksisco1210@aol.com

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