saidie10 Posted August 19, 2010 Report Share Posted August 19, 2010 First and foremost, IF YOU ARE LOOKING FOR A PANDAS FRIENDLY DOCTOR IN TEXAS, OUR EXPERIENCE IN SAN ANTONIO HAS BEEN TOP NOTCH. My DS7 received his first dose of IVIG yesterday of what I told him was hopefully his magic medicine! The staff at this hospital was top notch. The facility and infusion rooms, top notch with LOTS for the kids to do. This doctor has been doing IVIG for 25 years and this is his first IVIG on PANDAS child. He is working with a wonderful Neurologist who we saw last week who also is a believer and forward thinker! He basically told me that my son is a case study for him which I am fine with! If it helps my son and other children can some see this man and his team and get the much needed help then study my son, by all means! He also mentioned to our sons Nurse when we were all talking about PANDAS yesterday that another treatment being used for PANDAS was PEX. This Nurse doing my son's IVIG is the only one in the hospital who can do PEX! I think he would even consider that as a treatment as well if the reasoning was there! Also, after a month of this doctor saying "I still have not found compelling evidence to justify abx post IVIG", I walked out of there yesterday with a prescription of 250mg for a year! I bombarded him with information early this week from this website and phone numbers of PANDAS experts (Dr. T, Dr. L, Dr K etc) whom he could call for colleague to colleague advice. He was also very appreciative of the link I sent him to the NIMH Directors Blog (thanks Vickie!) He handed me a prescription yesterday during out meeting and told me he appreciated all my hard work! I told him I had lots of other parents to thank for all the great advice I have received on this online community!!! THANK YOU guys so much! I told him if I put his name out there he would likely be bombarded with patients. Although at this time he did not want me putting his name on the website, he certainly said referrals would be welcome! PM me if you want the contact information!!! Lastly and MOST IMPORTANTLY, my DS is doing soooo good. He really tolerated the IVIG well. Slight headache last night but nothing serious at all. Is staying very hydrated which I guess is helping (thanks for the advice on that guys...) Yesterday morning was so emotional for me. I fought back tears all morning. Two long years of not knowing, feeling helpless, looking for help, misdiagnosis, and watching my poor child suffer brought me to this moment. It was emotional from nerves for him and happiness for him. I am sure you guys who have finally gotten the IVIG or PEX, or abx for your child after many years of fighting for them know EXACTLY what I am talking about . All my best to everyone fighting the good fight! Link to comment Share on other sites More sharing options...
kimballot Posted August 19, 2010 Report Share Posted August 19, 2010 So very happy for you.. and glad that you have a new doc for parents to see! Your post will probably move down the page eventually and I am afraid it will get lost. I wonder if there is some way to let folks know that they can PM you about a new doc in San Antonio? Link to comment Share on other sites More sharing options...
Mary M Posted August 19, 2010 Report Share Posted August 19, 2010 Oh, to hear such positive news makes my heart sing. Our children, and their precious brains, deserve proper treatment...and after so much study and perserverence you have made that happen for your child and many, many more in Texas. Thank you and congratulations! Link to comment Share on other sites More sharing options...
matis_mom Posted August 19, 2010 Report Share Posted August 19, 2010 That is AWESOME!!! I am so happy for you and your family, and for all the other kids that will benefit from this medical team in the future! And you are AWESOME for educating them! We'll make the medical establishment PANDAS literate, one doctor at a time Link to comment Share on other sites More sharing options...
Fixit Posted August 19, 2010 Report Share Posted August 19, 2010 I am so happy for you and your ds...and thank you for doing the leg work for many parents who will use this doctor to heal their child. Like kimb...i might even forget that you have this contact...maybe remind us once in a while.. Good Job!!! Link to comment Share on other sites More sharing options...
Doug Posted August 19, 2010 Report Share Posted August 19, 2010 I am so happy for you. I broke down on my dd last day of IVIG,after they took the iv out and said all done! I had been holding in all of my fears and anxiety to be strong for her and my husband it was all to much. Best of luck to you Tracie Link to comment Share on other sites More sharing options...
nevergiveup Posted August 19, 2010 Report Share Posted August 19, 2010 Wow, great! Everything is changing so fast! What dose did the doc do? It is frightening to think there are alternatives to help our children and they are denied to us, I cried on my dd's first ivig too. It is so comforting to know now u can go back to being a parent and let the docs actually be doctors. First and foremost, IF YOU ARE LOOKING FOR A PANDAS FRIENDLY DOCTOR IN TEXAS, OUR EXPERIENCE IN SAN ANTONIO HAS BEEN TOP NOTCH. My DS7 received his first dose of IVIG yesterday of what I told him was hopefully his magic medicine! The staff at this hospital was top notch. The facility and infusion rooms, top notch with LOTS for the kids to do. This doctor has been doing IVIG for 25 years and this is his first IVIG on PANDAS child. He is working with a wonderful Neurologist who we saw last week who also is a believer and forward thinker! He basically told me that my son is a case study for him which I am fine with! If it helps my son and other children can some see this man and his team and get the much needed help then study my son, by all means! He also mentioned to our sons Nurse when we were all talking about PANDAS yesterday that another treatment being used for PANDAS was PEX. This Nurse doing my son's IVIG is the only one in the hospital who can do PEX! I think he would even consider that as a treatment as well if the reasoning was there! Also, after a month of this doctor saying "I still have not found compelling evidence to justify abx post IVIG", I walked out of there yesterday with a prescription of 250mg for a year! I bombarded him with information early this week from this website and phone numbers of PANDAS experts (Dr. T, Dr. L, Dr K etc) whom he could call for colleague to colleague advice. He was also very appreciative of the link I sent him to the NIMH Directors Blog (thanks Vickie!) He handed me a prescription yesterday during out meeting and told me he appreciated all my hard work! I told him I had lots of other parents to thank for all the great advice I have received on this online community!!! THANK YOU guys so much! I told him if I put his name out there he would likely be bombarded with patients. Although at this time he did not want me putting his name on the website, he certainly said referrals would be welcome! PM me if you want the contact information!!! Lastly and MOST IMPORTANTLY, my DS is doing soooo good. He really tolerated the IVIG well. Slight headache last night but nothing serious at all. Is staying very hydrated which I guess is helping (thanks for the advice on that guys...) Yesterday morning was so emotional for me. I fought back tears all morning. Two long years of not knowing, feeling helpless, looking for help, misdiagnosis, and watching my poor child suffer brought me to this moment. It was emotional from nerves for him and happiness for him. I am sure you guys who have finally gotten the IVIG or PEX, or abx for your child after many years of fighting for them know EXACTLY what I am talking about . All my best to everyone fighting the good fight! Link to comment Share on other sites More sharing options...
saidie10 Posted August 20, 2010 Author Report Share Posted August 20, 2010 He did Swedo's dose. I hope it works! Link to comment Share on other sites More sharing options...
SpenceOhana Posted March 10, 2013 Report Share Posted March 10, 2013 Saidie10 I just PM you. Link to comment Share on other sites More sharing options...
SurfMom Posted March 10, 2013 Report Share Posted March 10, 2013 Well done, and thank you for sharing this for other families in the region! Link to comment Share on other sites More sharing options...
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