Jump to content
ACN Latitudes Forums


  • Content Count

  • Joined

  • Last visited

About saidie10

  • Rank
    Advanced Member
  • Birthday 09/18/1972

Profile Information

  • Gender
  • Location
    San Marcos, Texas

Recent Profile Visitors

6,304 profile views
  1. Thank you all so much for the responses. We are scheduling with Dr. Infante ASAP and I got an email back from Dr. Cunningham office and they concurred that even if they appear to be healed things can trigger relapses even years apart. We had no idea! My son is 12 and is in the beginnings of puberty so that was something I did not think about either as possibly impacting things.
  2. After 2 years of fighting pediatricians and neurologists, both my boys with the help of Dr. Rao and Dr. Infante were eventually confirmed in high PANDAS range on Cunningham test over 6 years ago. Both had tonsilectomy's, IVIG's and 1 year of antibiotics and healed! They recovered - it was truly a miracle and we were so thankful!!! Very concerned though now. My youngest son has been experiencing some unfounded fears/rage behavior (reminding us of many years of scary and heartbreaking behaviors) and now his OCD and tics are flaring. What's happening?!?! We sooo thought we were done with th
  3. Here is the contact information for Dr. Bruce Russell in Port Aransas.

    361-749-1930. I had to email him first and explain our journey because he was not accepting patients. His email is is drbrucekids@yahoo.com. Please call me if you can. I would love to visit with a fellow mom. 361-537-0051 or kathrynt1030@aol.com

  4. We've been through 3 different pediatricians in the last three years. We really need some consistency here but we need someone who BELIEVES and is willing to work with specialists too. Has anyone on the board seen anybody or are currently seeing anybody in San Antonio or Austin who you would recommend? Any input appreciated! Thanks, Cindy
  5. so much information...thank you all so much. hoping to talk with Dr. T soon. we are looking for a new pediatrician in the san antonio/austin area if anyone has any good advice...
  6. We did one high dose IVIG and then three (what my Immunologist called booster IVIG's) and then another high dose. This was through Dr. I in San Antonio. Last IVIG was in December, 2011. Our sons Cunningham was done about 2.5 years ago. We have also done the Western Blot for Lyme through LabCorp and although technically they were negative for all four of us, there was 1 lyme specific band found in DS9 and myself and 2 lyme specific bands found in DH. Just sent an email to Dr. T's office. Guess we need to really consider finding someone who is treating a lot of PANDAS kids. Dr. I was r
  7. Thank you both for the quick response. I will look into the Clinical Trial for Zithro...is that with Tanya Murphy in Florida? As for the information on the methylation, this is very, very interesting! DS had very elevated neurotransmitters on both urinalysis that we did in the past two years. Dopamine was like 4 times the normal. Also, his D2 receptors done by the Cunningham tests were 16000 which Dr. C said was extremely elevated and not seen in normal kids (his camKinase was 164). She also indicated the connection with elevated dopamine and tics. Thank you so much. I will look int
  8. Hello, It's been a while (a long while since I posted last). I have had some tremendous personal family issues in the past year that have almost pushed my marriage to the brink. The stress of the health of both my boys over the last three years has taken a tremendous toll on my marriage and me physically and mentally. I am sure you all can relate. DH and I have been seeing a therapist since January and thankfully we are reconnecting, but I myself am on three medications for depression (my god what has happened?!) I guess we get desperate to keep our sanity and lord knows I have to kee
  9. How are things going for you? Would love to get our boys together this summer if you have time.

  10. Hi Kathy. You should really go see Dr. Rao in Dallas. He is great great at looking at the bigger picture and definitely willing to be more aggressive with the abx. Exposure to strep in DS8's class 4 weeks after IVIG brought his tics back with a vengeance. Trying to figure out what is next. Found out today that Dr. I is no longer doing IVIG's for PANDAS. Guess hospital has put a st...

  11. We met at Dr. I in Dec. Sorry to hear about the insurance problem. We too have BCBS. Are your boys doing better? Luke is on low dose azithromicin. Not much change in tics and I don't know how to ask for stronger dosage.

  12. I was sick when I got the letter and I know the case worker at the Hospital is going to help us fight this but BCBS of Texas has denied covering our DS8's fifth IVIG. They covered the first four but denied this one saying "the proposed services are unproven in available peer-reviewed scientific literature to be safe, effective and durable." Well I can tell them I don't need any peer-reviewed scientific literature to know these have helped my son tremendously. He is off the zoloft completely and the OCD is all but gone! We see tremendous improvements in his secondary condition of ADD/ADHD a
  13. Been a while since I last posted. With the holidays and going from PT to FT at work life is crazy as I am sure you all know. Both boys had IVIG on December 22nd and 23rd. This was DS8's fifth IVIG and DS6's first. Before the IVIG's we increased boys to daily Azith, moving the oldest from daily Penicillin to the Azith and starting the youngest on the daily Azith. DS8 was really struggling in school with focus, attention, concentration, handwriting and math. His tics were minimal to nothing and severe bathroom OCD was pretty much gone (yeah!!!) Once school started back up a few weeks ago,
  14. We are embarking on another chapter. December 21st and 22nd both my boys will receive IVIG high dose together. With the tremendous results seen in DS8 after his first high dose in August 2010, and the change from Penicillin to Azith we are hoping for long term remission of symptoms. And I am very, very hopeful that this first immunotherapy on our younger son will offer him a chance for improvement as well. We r still going to follow up with Lyme testing through Igenex for both the boys and DH and myself, although DH and I are convinced based on our Western Blots through Labcorp that we
  • Create New...