peglem Posted October 23, 2009 Report Posted October 23, 2009 This would be something for whoever has an actual face to face appointment with Dr. Latimer...1) mention that others have had trouble getting in touch with her (follow-up questions etc.)...multiple phone calls/e-mails 2) is she getting the messages? 3) what is the best way to get in contact with her 4) what does she suggest a patient do after repeated efforts at trying to contact her Maybe if someone asks her these questions face to face you'd get some kind of answer. I can appreciate that she might feel overwhelmed...but honestly, Dr. K (the few times I've e-mailed) has ALWAYS answered my e-mails (even if the answer is brief). btw, my dd is not a patient of his and I have never paid for a phone consult...so really he has no obligation to answer, but he always does. So, I find it surpising that actual patients of Dr. Latimer's (or those willing to pay $$ for a phone consult) are not getting the responses they should. My pediatrician called her office at the end of September and she returned his call, same day and talked with him for about 20 minutes...and I am not a paying patient of hers, either. I'm surprised to hear of the difficulty other people are having with this.
thereishope Posted October 23, 2009 Report Posted October 23, 2009 Has anyone contacted her office and outright asked if she'd prefer not to be given as a reference anymore? If no one else wants to do it, I will if someone has an email address for me.
faith Posted October 23, 2009 Report Posted October 23, 2009 no no please dont, LOL, , you might piss her off and then we'll be screwed...... ................ Faith
P_Mom Posted October 23, 2009 Report Posted October 23, 2009 Oh...I agree with Faith. She put it so eloquantly...I couldn't compete with her response. Remember all....I know we are all trying to get help for our kids and we want it asap.....however, Dr. Latimer did just lose her husband unexpectedly just about 3 months ago....I am sure she and her children are going through very difficult times right now. She is probably also being bombarded with PANDAS patients (like Dr. K)....... I am sure she is trying her best...while trying to heal and deal with her tragedy. Please try to be patient......I saw her in person...and I can assure you...she is a wonderful, caring woman.
dcmom Posted October 24, 2009 Report Posted October 24, 2009 I have been thinking about this topic a lot lately. I am sorry to those who have not gotten the follow up by Dr L that they hoped for. That is certainly frustrating. But, I think we need to remember, she is one of a handful of doctors trying to help pandas kids. She believes in it, she is compassionate, and as far as I know is the only doc in the country that can help you get IVIG or PEX, for many covered by insurance. I am sure she is sticking her neck out a little in doing this. I would hate for parents to start giving her flack, and her decide it is just not worth it. As PMom said, she is a mom of four who just lost her husband. She also, is a person, with a family. Unfortunately, it is not up to her to educate all the doctors in the country about pandas. She is certainly doing more than her part. She is pretty much all many of us have. And for the record, she has done really well by many of us. So for those who feel they have slipped through the cracks, I would suggest being persistant- yet kind. And if possible, book another in person appt- because I am sure you will get the results you want then. BTW, we were just at Georgetown, and they are extremely busy in the ICU- she certainly needs their buy in to continue to be able to get a bed there, so I am sure she has to jump through some hoops at her end as well.... Anyway, just my 2 cents.
T_Mom Posted October 24, 2009 Report Posted October 24, 2009 I have been thinking about this topic a lot lately.I am sorry to those who have not gotten the follow up by Dr L that they hoped for. That is certainly frustrating. But, I think we need to remember, she is one of a handful of doctors trying to help pandas kids. She believes in it, she is compassionate, and as far as I know is the only doc in the country that can help you get IVIG or PEX, for many covered by insurance. I am sure she is sticking her neck out a little in doing this. I would hate for parents to start giving her flack, and her decide it is just not worth it. As PMom said, she is a mom of four who just lost her husband. She also, is a person, with a family. Unfortunately, it is not up to her to educate all the doctors in the country about pandas. She is certainly doing more than her part. She is pretty much all many of us have. And for the record, she has done really well by many of us. So for those who feel they have slipped through the cracks, I would suggest being persistant- yet kind. And if possible, book another in person appt- because I am sure you will get the results you want then. BTW, we were just at Georgetown, and they are extremely busy in the ICU- she certainly needs their buy in to continue to be able to get a bed there, so I am sure she has to jump through some hoops at her end as well.... Anyway, just my 2 cents. Well stated DCMom. This doctor is one incredible professional--like any doctor believing in Ps and trying to HELP. This doctor is also committed to many good causes. When I think about what we have gone through, I can tell you this doctor gave me my child back.
thereishope Posted October 24, 2009 Report Posted October 24, 2009 Don't worry. I won't. no no please dont, LOL, , you might piss her off and then we'll be screwed...... ................ Faith
mom md Posted October 24, 2009 Report Posted October 24, 2009 Ditto to you both. I also wanted to add that when we went for our follow-up she was running behind as always. She never even ate lunch that day because she had a talk to pediatricians scheduled at lunch to spread the word about PANDAS. Her office said they went from seeing one PANDAS patient a week back in May to now up to 4-5 call a day! This is also in addition to the 25 + years of regular neurology patients that she follows. My hope is that she does not wear out. She is also working on forming a group of doctors up there (hem/onc, immunologists, etc) that can help her. The doctors up at Georgetown are unbelievable and she is right across from the NIH and John's Hopkins. Maybe if enough of us continue to flock there the PANDAS voice will spread to others around her.
MMC Posted October 24, 2009 Report Posted October 24, 2009 Mark,could you give an update on where your kids are with the pred? how are they doing? just curious, do you mean that you've tried to talk with her in the midst of the prednisone treatment and have not been able to? if so, that's scary, you need to be able to communicate with the doctor who is treating your kids. this worries me what I'm hearing as we have an in person appt. in two weeks. I won't be able to deal with that. When you do go back for the follow up, will the course of pred be over, and then what? could I also ask how long your kids have been dealing with symtoms? thanks Faith Faith, Our kids are tolerating the pred just fine...today has been 2 weeks (out of 5). We have seen no noticeable improvement, but aren't looking for anything yet...we will give it the 5 weeks. We haven't tried to call since the pred Rx, but my wife did email this past week to get paperwork started for a 504 (testing modification) at school. And I am glad to report that Dr Latimer responded back in about an hour and will be mailing the necessary paperwork. Kids have had no issues on the pred, other than normal puffy cheeks and some insomnia w/ our old son. What we will do after this is a good question. She mentioned PEX possibilities with son, but not with daughter b/c her symptoms are mild. We would like to try Augmentin instead of the PenVK, but don't know if she will prescribe it. Symptoms......daughter, 13 has had tics for 8 yrs, wax and wane, fairly mild, but are still bothersome. She is also ADD and on Vyvanse for this which controls it. Son, 11 symptoms started back in March...very strong tics, a little OCD and ADHD. Dr Latimer stated his symptoms are more chorea like (Sydenham's Chorea)...which I was diagnosed with when I was 7. Hits him very hard at night, and about every 4 weeks has "melt-down" seizure-like tics for about an hour or more. It is horrific. I video taped his last one (which was a mild "melt down"), 1 week before our visit, burned it to dvd and we played it for Dr L in her office. This really helped her see him in his worse state. Both kids started symptoms after strep, of course. - Mark
sf_mom Posted October 24, 2009 Report Posted October 24, 2009 I agree overwhelmed...... we need to keep building a pool of Dr. that will treat in addition to Dr. K and L. Let your frustration lead to motivation. I also understand Diana Polhman in conjunction with other parents/Dr.s is working on building a survey to provide to all parents of PANDAS children........ So, we in turn can give documented symptoms of NUMEROUS CASES and successful treatments. Dr.'s need those cases to say o.k let's give it a try. I think we are getting close to finding a couple Dr's in Northern CA that will help but we have to keep 'HITTING UP' the same Dr.s. Hey, if it isn't my son that gets treated maybe it will be my friends or a neighbor. I felt like I was at the Immunologist on Thursday talking about my son's situation just as much as I was talking about my son's friend or Mom2Alex son.
Stephanie2 Posted October 26, 2009 Author Report Posted October 26, 2009 I am the original poster of this thread. I just wanted to comment on some of what has been said here. It is Sunday night and my scheduled phone consult was last Tuesday and I still haven't heard anything from this woman after several attempts to get an explanation/phone call. I don't have a problem with the fact that she is overwhelmed, I get that...after all, I am overwhelmed and I have people trying to get ahold of me, too. I try not to judge. Also, I know she lost her husband and I can't imagine what she is going through. But here is my gripe. I waited to have this phone consult for 6 weeks (an agonizing wait, having to go around town begging for one abx after another, never really getting a good enough dose to completely pull him out of this chaos). I (unfortunately) put all of my eggs in one basket and now she has completely stood me up and the office staff isn't even calling me to reschedule! So, here I am after 6 weeks having to scramble to get on someone else's waiting list. I would have been better off by now if they (Dr. L or the office staff) had been honest from the start and said that Dr. L couldn't see us for several months. At least then I could have lined someone else up b/c my situation is so severe when my child is off abx. I just feel like I was strung along when I could have been looking into other avenues. Now, I have been dropped like a hot potato and there is some serious suffering going on. I just hope maybe one day she can be realistic about how much she can handle so that other children don't have to suffer one more day than they have to. With all that said, I was lucky enough to have Tanya Murphy, MD (Tampa, FL) reveiw my case within an hour of my phone call the other day and based on my son's condition, she is squeezing my son in on Nov. 4 (they are actually booking in Jan...). After so many roadblocks since August, I almost cried when this door opened up for me... Stephanie OK, this is a vent with a question... We had a phone consult scheduled with Latimer yesterday at 4:00, I had my MIL here to watch the kids and the office called and said that Dr. Latimer would call me at 5:15. So, I had to let my MIL go home and my husband had to leave work early to come watch the kids. Then the office called and said that Dr. Latimer was cancelling our appt and that she wants to reschedule for tonight at 5:00. So, once again I had to have my husband come home early and when I called the office at 5:03 the phone had already been shut off for the day...So now I am left hanging and I have no idea what time she is going to call (assuming she IS going to call) and my husband needs to go back to work! And to top it off I have PMS and this is really annoying me!!! So my question is, what time does she usually call at night? AND do you think she will come through with an antibiotic over the phone? We have 3 days of zithromax left and if she doesn't give me one I will have to order some from Canada or something (since we have already tapped out the pediatrician, the DAN doctor and the walk-in clinic). I guess I am panicking - just a little! Stephanie
dee45 Posted October 26, 2009 Report Posted October 26, 2009 Hi Stephanie, so glad you finally have an appointment with someone, I have the same frustrations as you I have been trying to get a hold of Dr. Latimer since our August appointment it is very frustrating . best of luck on the 4th. Deanna
thereishope Posted October 26, 2009 Report Posted October 26, 2009 Glad to hear you got in fast with Murphy. Isn't that a good feeling when someone cares about your child. I have yet to find a cheerleader for my son. I keep thinking that when a child has something like cancer, there are so many rooting for that child, doctors and nurses giving so much support. Hearing things like "You're child WILL get better (from docs). We are all fighting for your child". I wonder what that would be like sometimes.... Not that I want him to have cancer. I would just like to know there are people accessible to me that have the desire to help and heal. If only more of the public knew what happens behind closed doors in the med community.
Stephanie2 Posted October 26, 2009 Author Report Posted October 26, 2009 Yes, Vicki, we have children who "slip through the cracks" in life unless they have warrior moms like us who never give up (although some days I just want to crawl into bed and do just THAT, but I pick myself up and just keep on fighting). Best of luck! Stephanie Glad to hear you got in fast with Murphy. Isn't that a good feeling when someone cares about your child. I have yet to find a cheerleader for my son. I keep thinking that when a child has something like cancer, there are so many rooting for that child, doctors and nurses giving so much support. Hearing things like "You're child WILL get better (from docs). We are all fighting for your child". I wonder what that would be like sometimes.... Not that I want him to have cancer. I would just like to know there are people accessible to me that have the desire to help and heal. If only more of the public knew what happens behind closed doors in the med community.
faith Posted October 26, 2009 Report Posted October 26, 2009 Stephanie, have you called Dr. Lattimer's office after the day that she never called for the original conference call? What did they say? just that they would give her the message? did you e-mail anything either. or are you just dropping it now? just wondering. I agree this is most curious. Faith
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