saidie10 Posted July 13, 2010 Report Share Posted July 13, 2010 We have a phone consult with Dr. K on Wednesday. We could only get 30 minutes this quickly but we will take what we can get! We wanted to speak with him before the boys appt. with the new Immunologist we got referred to in San Antonio that is scheduled for Thursday. We suspect he will recommend a Steriod Burst on the oldest followed up with IVIG. He is the one with the immune deficiency and clearly elevated antiD-Nase B titers in response to exposure to his brothers strep in May and we saw a definite increase in symptoms during this time. Cam K was 164, along with abnormal anti neural titer antibodies and some abnormal readings on his urine tests. As for the younger son whom we think experienced his first PANDAS episode with this last strep in May, his Cam K was 179 but his other bloodwork does not have any clear abnormalities. His urine tests did though. Not sure what he might recommend for him. I was just hoping that anyone whom has had a phone consult with Dr. K or any of the other PANDAS "experts" could let me know any mistakes they made, or questions they forgot to ask. I want to be as prepared as possible to make the most of the 30 minutes. Thanks so much! Link to comment Share on other sites More sharing options...
bgbarnes Posted July 13, 2010 Report Share Posted July 13, 2010 We have a phone consult with Dr. K on Wednesday. We could only get 30 minutes this quickly but we will take what we can get! We wanted to speak with him before the boys appt. with the new Immunologist we got referred to in San Antonio that is scheduled for Thursday. We suspect he will recommend a Steriod Burst on the oldest followed up with IVIG. He is the one with the immune deficiency and clearly elevated antiD-Nase B titers in response to exposure to his brothers strep in May and we saw a definite increase in symptoms during this time. Cam K was 164, along with abnormal anti neural titer antibodies and some abnormal readings on his urine tests. As for the younger son whom we think experienced his first PANDAS episode with this last strep in May, his Cam K was 179 but his other bloodwork does not have any clear abnormalities. His urine tests did though. Not sure what he might recommend for him. I was just hoping that anyone whom has had a phone consult with Dr. K or any of the other PANDAS "experts" could let me know any mistakes they made, or questions they forgot to ask. I want to be as prepared as possible to make the most of the 30 minutes. Thanks so much! If it is like mine- he will probably suggest a steroid burst- which he can't prescribe so you will have to find another Dr to do it...then you will watch your ds from days 6-21 and then report back your observations- positive or negative....Then if positive he would probably suggest IVIG ASAP before school starts. Some parents I have read have been able to forgo steroid burst and just go straight to IVIG. I wish I would have asked more questions about OK- after IVIG what is your process, healing recovery etc. Percentage of kids that need more than 1 IVIG, how often do they get it? Why he likes IVIG, his thoughts on PEX, What should I expect if my ds is exposed to strep or myco after IVIG? Will we be on ABX? If so how long? Hope this helps- let me know how it goes! Brandy Link to comment Share on other sites More sharing options...
sptcmom Posted July 13, 2010 Report Share Posted July 13, 2010 Dr K is an ocean of info. One thing I've noted is you need to keep him on track with specific questions rapid fire. If you let him go into a monologue, its going to take up a lot of time since all the info seems imp. So select what is of immediate importance and ask those first. Don't be afraid to stop him in his tracks if he tends of lecture on. He knows so much, its very tempting to let him talk. But he is very punctual about time so he will abruptly say goodbye and hang up if your times up. Not rude at all just time conscious since the poor guy does everything on his own, paperwork, appts, insurance etc etc. I spoken to several moms who've noticed the same thing. So stay on track very firmly indeed. he doesn't mind, infact loves direct brief questions, just like in his emails. Jodie Link to comment Share on other sites More sharing options...
JAG10 Posted July 13, 2010 Report Share Posted July 13, 2010 Dr K is an ocean of info. One thing I've noted is you need to keep him on track with specific questions rapid fire. If you let him go into a monologue, its going to take up a lot of time since all the info seems imp. So select what is of immediate importance and ask those first. Don't be afraid to stop him in his tracks if he tends of lecture on. He knows so much, its very tempting to let him talk. But he is very punctual about time so he will abruptly say goodbye and hang up if your times up. Not rude at all just time conscious since the poor guy does everything on his own, paperwork, appts, insurance etc etc. I spoken to several moms who've noticed the same thing. So stay on track very firmly indeed. he doesn't mind, infact loves direct brief questions, just like in his emails.Jodie This is GREAT advice! The only thing I would add, is to listen to his VoiceAmerica interview before your appt. Get his basic lecture for free fresh in your head and you will be better able to recognize when he is going down that road. So many parents... he has to assume you don't know anything unless you keep the specific questions coming. Link to comment Share on other sites More sharing options...
saidie10 Posted July 13, 2010 Author Report Share Posted July 13, 2010 Dr K is an ocean of info. One thing I've noted is you need to keep him on track with specific questions rapid fire. If you let him go into a monologue, its going to take up a lot of time since all the info seems imp. So select what is of immediate importance and ask those first. Don't be afraid to stop him in his tracks if he tends of lecture on. He knows so much, its very tempting to let him talk. But he is very punctual about time so he will abruptly say goodbye and hang up if your times up. Not rude at all just time conscious since the poor guy does everything on his own, paperwork, appts, insurance etc etc. I spoken to several moms who've noticed the same thing. So stay on track very firmly indeed. he doesn't mind, infact loves direct brief questions, just like in his emails.Jodie This is GREAT advice! The only thing I would add, is to listen to his VoiceAmerica interview before your appt. Get his basic lecture for free fresh in your head and you will be better able to recognize when he is going down that road. So many parents... he has to assume you don't know anything unless you keep the specific questions coming. This is awesome advice thank you all so much!!!! Where do I find the VoiceAmerica interview? Link to comment Share on other sites More sharing options...
JAG10 Posted July 13, 2010 Report Share Posted July 13, 2010 We have a phone consult with Dr. K on Wednesday. We could only get 30 minutes this quickly but we will take what we can get! We wanted to speak with him before the boys appt. with the new Immunologist we got referred to in San Antonio that is scheduled for Thursday. We suspect he will recommend a Steriod Burst on the oldest followed up with IVIG. He is the one with the immune deficiency and clearly elevated antiD-Nase B titers in response to exposure to his brothers strep in May and we saw a definite increase in symptoms during this time. Cam K was 164, along with abnormal anti neural titer antibodies and some abnormal readings on his urine tests. As for the younger son whom we think experienced his first PANDAS episode with this last strep in May, his Cam K was 179 but his other bloodwork does not have any clear abnormalities. His urine tests did though. Not sure what he might recommend for him. I was just hoping that anyone whom has had a phone consult with Dr. K or any of the other PANDAS "experts" could let me know any mistakes they made, or questions they forgot to ask. I want to be as prepared as possible to make the most of the 30 minutes. Thanks so much! Try this: http://www.voiceamerica.com/voiceamerica/v....aspx?aid=43934 It's awesome! I made hubby listen to it too before our phone consult. It helps with his Croatian accent too Link to comment Share on other sites More sharing options...
Doug Posted July 13, 2010 Report Share Posted July 13, 2010 Dr K is an ocean of info. One thing I've noted is you need to keep him on track with specific questions rapid fire. If you let him go into a monologue, its going to take up a lot of time since all the info seems imp. So select what is of immediate importance and ask those first. Don't be afraid to stop him in his tracks if he tends of lecture on. He knows so much, its very tempting to let him talk. But he is very punctual about time so he will abruptly say goodbye and hang up if your times up. Not rude at all just time conscious since the poor guy does everything on his own, paperwork, appts, insurance etc etc. I spoken to several moms who've noticed the same thing. So stay on track very firmly indeed. he doesn't mind, infact loves direct brief questions, just like in his emails.Jodie This is GREAT advice! The only thing I would add, is to listen to his VoiceAmerica interview before your appt. Get his basic lecture for free fresh in your head and you will be better able to recognize when he is going down that road. So many parents... he has to assume you don't know anything unless you keep the specific questions coming. This is awesome advice thank you all so much!!!! Where do I find the VoiceAmerica interview? Yes, I would like to know that also Link to comment Share on other sites More sharing options...
JAG10 Posted July 13, 2010 Report Share Posted July 13, 2010 Does anybody know if all the Voice America interviews are pinned up top? I think there are 3; Dr. K, L, T, right? Link to comment Share on other sites More sharing options...
norcalmom Posted July 13, 2010 Report Share Posted July 13, 2010 That was great - Just listened to Dr. K. interview. We have our phone conference w/dr K tomorrow too. Link to comment Share on other sites More sharing options...
bmom Posted July 13, 2010 Report Share Posted July 13, 2010 It would be great if we could get them all pinned up top!!! Link to comment Share on other sites More sharing options...
JAG10 Posted July 13, 2010 Report Share Posted July 13, 2010 Can anybody pin up top or does Chemar have to do it??? Link to comment Share on other sites More sharing options...
JAG10 Posted July 13, 2010 Report Share Posted July 13, 2010 Voice America hour long interview links with Dr. K, Dr. L and Laura, and Dr. Trifiletti and Lynn pinned up top Link to comment Share on other sites More sharing options...
saidie10 Posted July 13, 2010 Author Report Share Posted July 13, 2010 Voice America hour long interview links with Dr. K, Dr. L and Laura, and Dr. Trifiletti and Lynn pinned up top This is great guys! Thanks so much. DH and I will listen tonight. I may even forward the link to My in-laws and parents as well! Link to comment Share on other sites More sharing options...
bsimon3 Posted September 17, 2011 Report Share Posted September 17, 2011 (edited) Hi everyone, I know this thread is ancient but we are really interested in finding the VoiceAmerica interview featuring Dr T (found the one with Dr K using the link above - thanks!). Is anyone able to provide the link? Thanks a bunch. This is a wonderful group of people and a lifeline resource for us. Beth Edited September 17, 2011 by bsimon3 Link to comment Share on other sites More sharing options...
JAG10 Posted September 17, 2011 Report Share Posted September 17, 2011 Hi everyone, I know this thread is ancient but we are really interested in finding the VoiceAmerica interview featuring Dr T (found the one with Dr K using the link above - thanks!). Is anyone able to provide the link? Thanks a bunch. This is a wonderful group of people and a lifeline resource for us. Beth http://www.voiceamerica.com/episode/44551/not-so-black-and-white-the-many-faces-of-pandas-with-dr-rosario-trifiletti-and-lynn-johnson Here you go. Good luck, there is light at the end of this tunnel! Link to comment Share on other sites More sharing options...
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