browneyesmom Posted January 19, 2011 Report Posted January 19, 2011 Ok, so our appointment is first thing that morning and I know Nancy will be there that morning also. Anyone else from here that we'll see there?
browneyesmom Posted January 23, 2011 Author Report Posted January 23, 2011 Bump... we'll be there this Wednesday morning... & so hoping this will be a positive turning point for her... anyone else?
SSS Posted January 24, 2011 Report Posted January 24, 2011 Well, I'm planning on calling the office tomorrow- to get a feel for cost, their thoughts on the IVIG- the DAN! we are working with (he does treat some PANDAS patients) told me HE thinks IVIG's are every 21 days, for years! Freaked me out. No way we can do that. I would love to hear how your experience goes...sending you good thoughts! Sarah & Samantha 5
tpotter Posted January 24, 2011 Report Posted January 24, 2011 If you child has primary immune deficiency, the the tx is every 21 days. BUT...most of our kids are being treated for either specific immune deficiency (e.g. strep titers are very low,) or for autoimmune deficiency, and that protocol is different. Dr. B's PANDAS protocol is every 8 weeks for several months depending on the child's needs and how s/he responds.
SSS Posted January 24, 2011 Report Posted January 24, 2011 If you child has primary immune deficiency, the the tx is every 21 days. BUT...most of our kids are being treated for either specific immune deficiency (e.g. strep titers are very low,) or for autoimmune deficiency, and that protocol is different. Dr. B's PANDAS protocol is every 8 weeks for several months depending on the child's needs and how s/he responds. Ohhhh nooo. Well, Dr. B may want to update his website? His case studies, all 4 of them, indicate 1 IVIG, with antibiotics following, and complete remission for the year follow up. *sigh* I don't know. We have Kaiser health insurance (CA) we should get our Cunninham test back soon, I will take a copy up there, and present a case for help.
kimballot Posted January 24, 2011 Report Posted January 24, 2011 If you child has primary immune deficiency, the the tx is every 21 days. BUT...most of our kids are being treated for either specific immune deficiency (e.g. strep titers are very low,) or for autoimmune deficiency, and that protocol is different. Dr. B's PANDAS protocol is every 8 weeks for several months depending on the child's needs and how s/he responds. Ohhhh nooo. Well, Dr. B may want to update his website? His case studies, all 4 of them, indicate 1 IVIG, with antibiotics following, and complete remission for the year follow up. *sigh* I don't know. We have Kaiser health insurance (CA) we should get our Cunninham test back soon, I will take a copy up there, and present a case for help. I don't think Dr. B has cases on his website. Perhaps you are thinking of Dr. K?
SSS Posted January 24, 2011 Report Posted January 24, 2011 If you child has primary immune deficiency, the the tx is every 21 days. BUT...most of our kids are being treated for either specific immune deficiency (e.g. strep titers are very low,) or for autoimmune deficiency, and that protocol is different. Dr. B's PANDAS protocol is every 8 weeks for several months depending on the child's needs and how s/he responds. Ohhhh nooo. Well, Dr. B may want to update his website? His case studies, all 4 of them, indicate 1 IVIG, with antibiotics following, and complete remission for the year follow up. *sigh* I don't know. We have Kaiser health insurance (CA) we should get our Cunninham test back soon, I will take a copy up there, and present a case for help. I don't think Dr. B has cases on his website. Perhaps you are thinking of Dr. K? I am a complete dork. YES, SORRY, it was Dr. K's website! whew- I'm a little confused following the expert Dr.'s here.
kimballot Posted January 24, 2011 Report Posted January 24, 2011 I am a complete dork. YES, SORRY, it was Dr. K's website! whew- I'm a little confused following the expert Dr.'s here. No problem - both are good doctors - just different protocols. It does get confusing!!
browneyesmom Posted January 24, 2011 Author Report Posted January 24, 2011 lol... it can be VERY confusing... if only there were more docs who were experts - now, wouldn't that be awesome! I should rephrase that to say, "WHEN there are more... won't that be awesome"... I do believe it will happen, in time. So, Sarah, which doc office are you calling? Dr. B or Dr. K? I'll certainly post after we get home! tpotter, do you see Dr. B? I've been wondering what to anticipate, but I guess every situation is different, depending on the child. She does have a deficiency of IgA & IgG; however, she's been so severely ill (as most of our kids here have, alas), including the several ER trips & hospital admission, that I wonder how that might factor into his treatment plan for her. Does anyone know if he does PEX?
SSS Posted January 24, 2011 Report Posted January 24, 2011 Browneyesmom: Well, I'll be calling Dr. K: his website says 1 IVIG and I'll be done! just kidding, just kidding- hope I don't get in trouble for that. On a serious note, I have been following your posts about your daughter- I'll be thinking of you, sending prayers------ Sarah
kimballot Posted January 24, 2011 Report Posted January 24, 2011 Browneyesmom: Well, I'll be calling Dr. K: his website says 1 IVIG and I'll be done! just kidding, just kidding- hope I don't get in trouble for that. On a serious note, I have been following your posts about your daughter- I'll be thinking of you, sending prayers------ Sarah If it makes you feel any better we see Dr. B and my son has some immune deficiencies. Dr. B says we'll start with one IVIG and see how things go. He may need it every 8 weeks he may not. I don't think it is set in stone. I think he really takes things on a case by case basis. Browneyes Mom - He will sit and listen to your story and ask good questions. Be sure to share all of your concerns. He will probably have some ideas on things that did and did not work in the past and why that might have been. Bring a pencil and paper and take notes yourself as he talks. I find it good to go back afterward and see what he said. I find little things that I may have forgotten otherwise. I also make copies of all his prescriptions and blood work orders so I have them and I can refer back to them if I need to or if I need to talk to another doctor. YOu probably do something like that already. Best of luck at your appointment. I will be watching for your post afterward!
browneyesmom Posted January 24, 2011 Author Report Posted January 24, 2011 (edited) hahaha Sarah... we can dream! Thanks for the input, Kim; I appreciate it a lot!! I am making a list of questions to bring with us and will have a notebook with me to take notes. That is an excellent idea and I have also found that it helps me in doctor appts to do this & review later. I have not been copying the scripts for my records though... great idea!! Edited January 24, 2011 by browneyesmom
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