acdrobert Posted September 18, 2009 Report Share Posted September 18, 2009 Hey I have finally decided that I do want to pursue the possibility of Thomas having some immunlogic complications along with his PANDAS. I have pursued some other providers closer to me, but I have gotten some "we don't believe in PANDAS" comments. Now I would like a doctor willing to work with us, doesn't matter how far I have to drive. If anything just to rule out other immune deficiencies. Whats the latest scoop on Dr. O'Connor (or is it O'Connell ? ) Are parents still pleased ? What is the wait time for an appointment ? Is there a connection with Dr. Latimer ? Thanks for keeping me in the loop Anne Link to comment Share on other sites More sharing options...
Suzan Posted September 18, 2009 Report Share Posted September 18, 2009 Hey I have finally decided that I do want to pursue the possibility of Thomas having some immunlogic complications along with his PANDAS. I have pursued some other providers closer to me, but I have gotten some "we don't believe in PANDAS" comments. Now I would like a doctor willing to work with us, doesn't matter how far I have to drive. If anything just to rule out other immune deficiencies. Whats the latest scoop on Dr. O'Connor (or is it O'Connell ? ) Are parents still pleased ? What is the wait time for an appointment ? Is there a connection with Dr. Latimer ? Thanks for keeping me in the loop Anne Our 2nd appt is not until mid October. So far, I feel cautiously hopeful that she will be able to help us. I know she is very interested in PANDAS and wants to look at all angles to try to find any underlying issues. How she will deal with the data once she gets it, I don't yet know. I was very impressed that she is the first doctor ever to ask to see my dd's entire medical history since birth, including interviewing my parents and brother. Considering the trouble I've had finding someone willing and interested in helping, and it sounds like you are in the same situation, it would be worth it if there is not another closer option for you. Susan Link to comment Share on other sites More sharing options...
mom md Posted September 19, 2009 Report Share Posted September 19, 2009 She has three PANDAS patients now and asked for the info of all the experts I found around the country so she could work with them. I have given her everyone's contact info including Latimer, Swedo, Cunningham, Leckman, Gupta...etc. We go back in 2 weeks but I do think there is some issue with the immune system which is the basis for this disease. She seemed interested and willing to work with us. Link to comment Share on other sites More sharing options...
dcmom Posted September 19, 2009 Report Share Posted September 19, 2009 Please keep us posted with what you find out. Julia had her blood drawn by Hem/Onc and Infectious Disease yestarday, they agreed to do the immune work up- but I still don't have immunologist to help interpret the results... Link to comment Share on other sites More sharing options...
ShaesMom Posted September 19, 2009 Report Share Posted September 19, 2009 Please keep us posted with what you find out. Julia had her blood drawn by Hem/Onc and Infectious Disease yestarday, they agreed to do the immune work up- but I still don't have immunologist to help interpret the results... Let's us know when you get the results. I'm sure we can all figure out together how to interpret them. Link to comment Share on other sites More sharing options...
pixiesmommy Posted September 19, 2009 Report Share Posted September 19, 2009 She worked with us 5 years ago and did Pixie's allergy skin- and blood-testing. Everything came back negative and she was still puzzled why she was getting the "unexplained" fevers, so recommended an ENT to take her tonsils out. Her bedside manner was terrific and she seemed really smart and interested in her work and in Pixie's case... but essentially told us she could not help us any more after the tonsils were out. The office we saw her at was the Concord office and while I really liked HER, the office staff was horrible. I have been trying for years to get her records and never can get the "right person" on the phone. Arghhhh!!! Link to comment Share on other sites More sharing options...
Megs_Mom Posted September 19, 2009 Report Share Posted September 19, 2009 Are you a NC mom too? We seem to have quite a few here. She worked with us 5 years ago and did Pixie's allergy skin- and blood-testing. Everything came back negative and she was still puzzled why she was getting the "unexplained" fevers, so recommended an ENT to take her tonsils out. Her bedside manner was terrific and she seemed really smart and interested in her work and in Pixie's case... but essentially told us she could not help us any more after the tonsils were out. The office we saw her at was the Concord office and while I really liked HER, the office staff was horrible. I have been trying for years to get her records and never can get the "right person" on the phone. Arghhhh!!! Link to comment Share on other sites More sharing options...
pixiesmommy Posted September 19, 2009 Report Share Posted September 19, 2009 Born and raised, but no longer live there. I'm in IL now... and lately I've been grateful for it (we are close to Dr K.) I still do get quite homesick though. Manda Link to comment Share on other sites More sharing options...
acdrobert Posted September 20, 2009 Author Report Share Posted September 20, 2009 I have been thinking that ! I wonder if there is something in the enviroment here. I am from the eastern part of the state, down near the beach. Are you a NC mom too? We seem to have quite a few here. She worked with us 5 years ago and did Pixie's allergy skin- and blood-testing. Everything came back negative and she was still puzzled why she was getting the "unexplained" fevers, so recommended an ENT to take her tonsils out. Her bedside manner was terrific and she seemed really smart and interested in her work and in Pixie's case... but essentially told us she could not help us any more after the tonsils were out. The office we saw her at was the Concord office and while I really liked HER, the office staff was horrible. I have been trying for years to get her records and never can get the "right person" on the phone. Arghhhh!!! Link to comment Share on other sites More sharing options...
Megs_Mom Posted September 20, 2009 Report Share Posted September 20, 2009 Wow, that is wierd - I am from east coast as well (Jacksonville NC), but am now on West side of state. I wonder if there is a particular strain of strep here - sure that is paranoia, but.... Meg always gets Ear infections with sudden onset, after exposure to a child with Strep. There are 3 of us here on the forum from the Charlotte area. Another family that moved to IL (pixiesmommy), and one that moved to CT (LLM). I'm sure it is coincicence, but it's at least interesting. I'd love to know if we all have anything else in common! We go back to O'Conners on Tuesday, so I'll update then. Say a prayer that we get Meg to do the Blood draw this time! I have been thinking that ! I wonder if there is something in the enviroment here. I am from the eastern part of the state, down near the beach. Are you a NC mom too? We seem to have quite a few here. She worked with us 5 years ago and did Pixie's allergy skin- and blood-testing. Everything came back negative and she was still puzzled why she was getting the "unexplained" fevers, so recommended an ENT to take her tonsils out. Her bedside manner was terrific and she seemed really smart and interested in her work and in Pixie's case... but essentially told us she could not help us any more after the tonsils were out. The office we saw her at was the Concord office and while I really liked HER, the office staff was horrible. I have been trying for years to get her records and never can get the "right person" on the phone. Arghhhh!!! Link to comment Share on other sites More sharing options...
Suzan Posted September 20, 2009 Report Share Posted September 20, 2009 Wow, that is wierd - I am from east coast as well (Jacksonville NC), but am now on West side of state. I wonder if there is a particular strain of strep here - sure that is paranoia, but.... Meg always gets Ear infections with sudden onset, after exposure to a child with Strep. There are 3 of us here on the forum from the Charlotte area. Another family that moved to IL (pixiesmommy), and one that moved to CT (LLM). I'm sure it is coincicence, but it's at least interesting. I'd love to know if we all have anything else in common! That's one of the first things I remember Diana saying the first time I spoke to her, wondering what's up with the strep in NC! We were exposed in 2002 and 2003 with the strep that I think started it all. I got it in 2002 and it got me very sick and it was very painful. I've never experienced strep like that, being so painful in the limbs and torso. I got it twice in 2 months. I remember thinking if my Mom wasn't on her way back home (I was on maternity leave) I'd have to have her swabbed for strep to see if she was a carrier. Dr. O'Connor is requesting DD8's medical records. I am very interested to see what it has in her records from that time. We need a data base or something to list medical history, test results, etc. or a survey that will compile all the results. Data, I love all that stuff to help look for patterns, trends, to solve the puzzle. Susan Link to comment Share on other sites More sharing options...
Recommended Posts
Create an account or sign in to comment
You need to be a member in order to leave a comment
Create an account
Sign up for a new account in our community. It's easy!
Register a new accountSign in
Already have an account? Sign in here.
Sign In Now