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jakio

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Posts posted by jakio

  2. dr. michael goldberg, Tarzana, ca.

    in PANS / PANDAS (Lyme included)

    Posted

    I haven't been posting in a long time but I just wanted to warn families that are considering seeing Dr. Goldberg in Tarzana, ca.

    We were under his care for two and a half years with absolut no result. He has no idea how to deal with Pans/Pandas/ autism. He just prescrisbes Meds and doesn't understand the consequesces of this meds on the body. stay away from him, he will not deliver but you will be spending a fortune.

  7. frequent urination

    in PANS / PANDAS (Lyme included)

    Posted

    It is my understanding that there are two sphincters involved in urinating - one close to the bladder called the internal sphincter, and one close to the urethra (near the opening) called the external sphincter. The internal sphincter is controlled by the basal ganglia and we do not have conscious control of it. The external is under voluntary control and keeps us from having accidents.

     

    The internal sphincter normally opens as the bladder fills with urine - making us "feel" like we have to go the bathroom. In our kids, the basal ganglia goes haywire and does not regulate the internal sphincter, so they often "feel" like they have to go to the bathroom.

     

    Here is an explanation of it - if you page down to the part about The Lower Urinary Tract http://www.seekwellness.com/incontinence/how_bladder_works.htm

     

    As far as what to do about it... really just anything you would do to reduce any other PANS symptom... ibuprofen if your child can take it and it is not too frequent, antibiotics if prescribed, steroids if nothing else works, IVIG or PEX if severe and needed.

    Thank you for the link and explanation.

  9. Sudden motor and vocal tics. Need help.

    in PANS / PANDAS (Lyme included)

    Posted

    My son started with sudden tics 1 moth ago, in the beginning I didn't know there were tics (open jaw and short scream).

    Then 3 weeks ago, during the weekend he started doing the tics non stop, a sudden burst.That was just before the state tests.

    We immediately took him to a neurologist recommended by his pediatrician, she said that the tics might go away, but you never know. That we should take all the stress from his life and maybe start doing therapy. Luckily she didn't recommend to start medication, since at that point I wasn't aware of all the problems the medications bring.

    I have an appointment with an allergist next week, I bought Bonnies supp, and Epson salts.

    I am buying organic foods, get rid of all the candy, starting to look at the labels to avoid food coloring and MSG.

    We stop all the pressure that we applied on his studies.

    One thing that I have to mention is that we brought a dog in January.

     

    He is not doing better, some days are better than the others.

     

    I wasn't aware about the connection between allergies and tics.

    Do you think the dog or other allergens could cause this sudden reaction?

    He didn't get any vaccine for the last years nor had a strep infection.

    Thank you.

    Hi Deby,

     

    I can give you the name of our pediatrician who is taking care of my son who has PANDAS. Dr. Goldberg, his office is in Tarzana

    818-343-1010. since we started in Jan he is doing much better. Good luck

     

    Dear Jakio,

    I live very close to Tarzana, so thank you very much for the information.

    Did you son started with tics like my son?

    How Dr Goldberg discovered that it is PANDAS and what is the treatment that he gave your son?

    Thanks!

    Deby

     

    HI, he become suddenly OCD, hand washing, throath clearing, not touching objects .... I discovered he was Pandas by reseaching, run some test and then I got Dr. Goldberg's name in this forum. he started him with antibiotics and antiviral after he requested other tests. my son is doing better and I hope he can help yours as well.

  10. Sudden motor and vocal tics. Need help.

    in PANS / PANDAS (Lyme included)

    Posted

    My son started with sudden tics 1 moth ago, in the beginning I didn't know there were tics (open jaw and short scream).

    Then 3 weeks ago, during the weekend he started doing the tics non stop, a sudden burst.That was just before the state tests.

    We immediately took him to a neurologist recommended by his pediatrician, she said that the tics might go away, but you never know. That we should take all the stress from his life and maybe start doing therapy. Luckily she didn't recommend to start medication, since at that point I wasn't aware of all the problems the medications bring.

    I have an appointment with an allergist next week, I bought Bonnies supp, and Epson salts.

    I am buying organic foods, get rid of all the candy, starting to look at the labels to avoid food coloring and MSG.

    We stop all the pressure that we applied on his studies.

    One thing that I have to mention is that we brought a dog in January.

     

    He is not doing better, some days are better than the others.

     

    I wasn't aware about the connection between allergies and tics.

    Do you think the dog or other allergens could cause this sudden reaction?

    He didn't get any vaccine for the last years nor had a strep infection.

    Thank you.

    Hi Deby,

     

    I can give you the name of our pediatrician who is taking care of my son who has PANDAS. Dr. Goldberg, his office is in Tarzana

    818-343-1010. since we started in Jan he is doing much better. Good luck

  11. medication

    in PANS / PANDAS (Lyme included)

    Posted

    Hi everyone,

     

    Happy New year to all!! I hope it brings peace in our homes.

     

    has anyone had any ( good or bad )experience with ERY-tables 333Mg antibiotic ???

     

    Our doc. has started my son on it.

     

    Any info is appreciated.

     

    Thank you

     

    Never heard of it. How old is your son and how much does he weigh? Does "ERY" stand for anything in particular? Erythromiacin, maybe?

     

    Yes, the generic name is erythromycin.

     

    Though I've only been on the forum for a few weeks now, I've not seen any previous references to erythromycin use for PANDAS, and as for the dosage, I suppose it depends on the age and size of your child. I'm familiar with having been given erythromycin myself in the past for sinus infections or ear infections, but I'm not clear on its effectiveness in eradicating strep.

     

    If you've scrolled through some of the other threads here, you'll most frequently see references to Augmentin, Azithromycin and/or Keflex for long-term PANDAS dosing. My 12-year-old, 120-pound son is, for example, taking 2,000 mg. of Augmentin XR daily.

     

    That is why I was asking if anyone had use it. Its only been 12 days since we started, I don't see any changes, my son says he does. we have an appointment with the doc. in 10 days and by then if this medication is not working I will ask him to change.

  12. medication

    in PANS / PANDAS (Lyme included)

    Posted

    Hi everyone,

     

    Happy New year to all!! I hope it brings peace in our homes.

     

    has anyone had any ( good or bad )experience with ERY-tables 333Mg antibiotic ???

     

    Our doc. has started my son on it.

     

    Any info is appreciated.

     

    Thank you

     

    Never heard of it. How old is your son and how much does he weigh? Does "ERY" stand for anything in particular? Erythromiacin, maybe?

     

     

    Yes, the generic name is erythromycin.

  14. Dr. cunningham

    in PANS / PANDAS (Lyme included)

    Posted

    Kathy Alvarez has been super. Don't hesitate to ask questions. Dr. C & Kathy have always returned explanations to my questions. Best wishes. Get this sample in lickety-split. They are using the two months to catch up. Kathy says they have been receiving up to 14 blood kits A DAY!! Because of the length of time it takes to run the assays they are barely keeping up. They will be charting data, recording hx's, and correlating symptoms with test results--stuff they haven't had time to do yet.

     

    I don't think this is so rare. :ph34r:

     

    Thank you so much for all the info.

  15. Dr. cunningham

    in PANS / PANDAS (Lyme included)

    Posted

    Madeleine W. Cunningham, Ph.D.

    George Lynn Cross Research Professor

    Microbiology and Immunology

    Director, NIAID-supported Immunology Training Program

    University of Oklahoma Health Sciences Center

    Biomedical Research Center Room 217

    975 NE 10th Street

    Oklahoma City, OK 73104

    Tel 405-271-3128

    Lab 405-271-2133 X47455

    FAX 405-271-2177

    email: madeleine-cunningham@ouhsc.edu

     

    I first contacted Dr. Cunningham. Once she accepted my daughter into the study, she turned communication over to Kathy Alvarez who answered all my questions and emailed preliminary results. I haven't called her, but my doctor did when I shared the research papers and results w/ him.

     

    You'll want to ask for the PANDAS camKinase II study.

     

    Thank you so much, you have been so helpfull. I will contact her in the morning. thank you, thank you!!!!!

  16. Dr. cunningham

    in PANS / PANDAS (Lyme included)

    Posted

    Hello,

     

    does anyone have dr. Cunningham's phone # or a site where I can order the kit.

    all I have is her e-mail address Madeleine-Cunningham@ouhsc.edu.

     

    How did you get her kit for the blood test????

     

    Thank you to all of you

    I emailed her a very brief medical history of my daughter and asked her if she could be included in the study. She replied yes and mailed out the kit for blood draw.

     

     

    What study? she is runing a study?

     

    Yes, the kit/blood draw is for a study she is doing...the testing she is doing is not yet FDA approved. She will give you 2 research studies that will explain to you and your doctor How the test was derived and the science it is based on. But, she's still running trials on the test.

     

    Thanks. so I just have to e-mail her? is there a phone # ?

    Do you know Kathy Alvarez in her office is she the person to talk too?

  17. Dr. cunningham

    in PANS / PANDAS (Lyme included)

    Posted

    Hello,

     

    does anyone have dr. Cunningham's phone # or a site where I can order the kit.

    all I have is her e-mail address Madeleine-Cunningham@ouhsc.edu.

     

    How did you get her kit for the blood test????

     

    Thank you to all of you

    I emailed her a very brief medical history of my daughter and asked her if she could be included in the study. She replied yes and mailed out the kit for blood draw.

     

     

    What study? she is runing a study?

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