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saidie10

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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 th
  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 r
  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 int
  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 kee
  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. 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
  10. 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,
  11. 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
  12. My family very likely needs to do further testing to help in our determination of a Lyme dx for DH, myself and our two sons. Is Igenex the best way to go? Can you ever get reimbursement from Insurance? Thank you for any information!
  13. Hi Holly! Thanks for checking in on us. We are doing OK. We see Dr. Infante the following week. We are just trying to decide is there something else lying beneath...after 1 high dose IVIG and 3 additional lower dose ones and 1.5 years of penicillin, the OCD and tics are still rearing their ugly heads and the worst for him is the cognitive dysfunction. He is such a smart young man but he can't concentrate for nothing and it is very hard to watch him struggle with that and his handwriting. Dr. Infante said he would be willing to do another IVIG pending insurance approval and Dr. C resuming
  14. fyi...Our "possible" symptoms....dh, joint issues and arthritis type issues in hands and occasionally asking me about blurred vision. Me, chronic diahrea for three years...two colonoscopies and dx went from IBS to colitis and possibly early Chrohns. As for two kids...both are very much strep triggered with very classic PANDAS symptoms.
  15. I knew I might be stirring a little bit of the pot over here but I truly don't mean to. I am simply seeking honest and thoughtful opinions from anyone who might be able to provide some insight. Thank you for yours This is exactly why I mentioned that I posted this as well on the Lyme board...
  16. DH results: CD57 low but not below 60 Western Blot: IgG P58 positive, IgM P23 Positive Vitamin D: 11.4 (normal 32-100) antiDNase B - 340 (normal below 85) Thought this was interesting. We had not tested this yet even with PANDAS dx. Any thoughts? My results: CD57 44 (reference 60-360) Western Blot: IgM P23 positive Vitamin D: 26 (normal 32-100) DS8: PANDAS dx in 2010, high strep titers, CamK 164 and D2 neuronals significantly elevated; has had 4 IVIG's and been on Penicillin for one year (we just switched to Zithro) CD57 42 (reference 60-360) IgG, Sublass 2: LOW (still l
  17. DH results: CD57 low but not below 60 Western Blot: IgG P58 positive, IgM P23 Positive Vitamin D: 11.4 (normal 32-100) antiDNase B - 340 (normal below 85) Thought this was interesting. We had not tested this yet even with PANDAS dx. Any thoughts? My results: CD57 44 (reference 60-360) Western Blot: IgM P23 positive Vitamin D: 26 (normal 32-100) DS8: PANDAS dx in 2010, high strep titers, CamK 164 and D2 neuronals significantly elevated; has had 4 IVIG's and been on Penicillin for one year (we just switched to Zithro) CD57 42 (reference 60-360) IgG, Sublass 2: LOW (still l
  18. great news! hopefully this research will yield some useful information!!!
  19. Sorry he is hurting ...this too shall pass and it will all be worth it!!! poor thing
  20. God luck and many prayers being sent your way! Tough young man you have there and a wonderful Mom!
  21. Thank you so much for sharing. For us the ADD is horrible as well!
  22. Oh my goodness I am so sorry. Absolutely terryifying. I hope you little one improves soon and that you get some answers Monday...
  23. Thanks guys...i will know the full dose tomorrow when we pick it up...think I might check with my sons other doc to see what he would recommend too. I appreciate your advice!
  24. So Dr. I has called in Zithro prophylactic for the boys. Not sure what dose until I pick it up, but I assume it will by 200 or 250mg pills. Now he tells us he is doing the Swedo prophylactic dose of 2 pills one day per week. Ummmm okay? That means literally two pills one day out of seven. Wth? He was taking 250mg of penicillin every day. I am confused and concerned this is not enough. Any thought?
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