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Everything posted by saidie10

  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 this. Poor little guy has anyone else experienced this? Recommendations?? I guess it's back to Dr. Infante - I hope he is still treating for this?! I just can't imagine that OCD and tics can completely go away for many years and then come back and not be related to something triggering it. There is no history in our family of OCD or tic disorders. Only Rheumatic a fever!
  3. 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
  4. 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...
  5. 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 really trying and he did talk with Dr. C and even Dr. S with NIMH, but our boys were his first PANDAS patients.
  6. 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 into both of these and have emailed Dr. T on other occasions. Maybe we just need to bite the bullet and have a phone consult with him...
  7. 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 keep it together for my kids. Currently, my DS9 is experiencing a resurgence of tics including a horrible head shaking tic that is causing him a lot of pain and distraction in school. Dr. I in San Antonio is no longer treating PANDAS kids (I know he would see him but he is no longer doing any aggressive treatment) as there were so many insurance denials so here we are at a crossroads. I could not get him in to Dr. A (Pedi Neurologist in San Antonio who has seen him) until January 23rd!!!!! He is currently on Omega 2's, Vit D3 suppl, 250mg daily of Penicillin, Probiotic, and 25mg of Zoloft for OCD (which is very much under control). If you were looking to do a phone consult or even travel to see a PANDAS EXPERT, whom would you call?? We have seen Dr. R in Dallas and we are just not going to be going back there. My son has had 5 IVIG's and he is simply not healed. We would see tremendous improvements in between but we are just not getting this right?! ANY advice is greatly appreciated. Thanks, Cindy PS..we phone consulted with Dr. K before treatment in San Antonio back in 2010.
  8. 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...

  9. Hi! My number is 512-618-1455. Feel free to give me a ring if you might want to try and connect while you are in Round Rock next Friday. Hope to hear from you.


  10. Yes, Dr. MC is Madeline Cunningham. Dr. Infante holds his PhD and is an Immunologist and Hematologist!

  11. It's Dr. Anthony Infante with Christus Santa Rosa. Gosh, I have been MIA for a while...trying to get my feet wet again on the board!

  12. Dr. Anthony Infante with Christus Santa Rosa! Gosh I am trying to get my feet wet on the board again...been MIA with a bunch of work and of course family stuff for a while! Miss the board!

  13. Brandy! Hi stranger...I am so happy your son is doing well!!!! Yipee! How are you?

  14. PM me your email address and I will gladly email it to you!

  15. Get me your email address and I will email you the bulletin!

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