Guest guest Posted November 17, 2010 Report Share Posted November 17, 2010 I just got this note from Dr. Trifiletti in NJ that I saw 6 months ago. This letter came after I inquired about the testing done at that time that he said showed nothing. I found him very disorganized when I went to see him with my child and no help at all. My girl had symptoms of her mental sickness at birth so I don't know if his letter is something that makes sense. She also has not only OCD. It appears she has psychosis of some sort too. I need your opinion. Thanks Below is what he sent: I've attached all the testing we've done on Peggy. We did do some limited metabolic testing. We did also do a microarray genetic test which was normal. After analyzing hundreds of children with PANDAS, I've noticed patterns of changes in the immune system in some kids. Peggy's seems to show one of these (low IgE and IgG4); it's a pattern that I only discovered recently by looking at hundreds of kids' data. I only got to analyzing Peggy's data yesterday so this is why haven't contacted you sooner. It's important that we do a follow up visit to discuss, this could be very important to why she developed OCD. -- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2010 Report Share Posted November 17, 2010 Hi Wilma, I can understand your frustration at disorganization and wonderment/confusion at the note coming so long after your consultation with him. I don't see Dr. T, I see Dr. B. But I honestly think the top PANDAS docs have been overwhelmed by PANDAS new patients, since there are so few docs that really know what they are doing. My understanding is that Dr. T. does not really have much in the way of support staff either. I think all of the PANDAS docs have been trying to do some analysis of patient data so that they can identify trends of some sort. In that sense they are being very proactive. If I were in your shoes I would contact him to follow up. Kara > > I just got this note from Dr. Trifiletti in NJ that I saw 6 months ago. This letter came after I inquired about the testing done at that time that he said showed nothing. I found him very disorganized when I went to see him with my child and no help at all. My girl had symptoms of her mental sickness at birth so I don't know if his letter is something that makes sense. She also has not only OCD. It appears she has psychosis of some sort too. I need your opinion. Thanks Below is what he sent: > > I've attached all the testing we've done on Peggy. We did do some limited metabolic testing. We did also do a microarray genetic test which was normal. > > After analyzing hundreds of children with PANDAS, I've noticed patterns of changes in the immune system in some kids. Peggy's seems to show one of these (low IgE and IgG4); it's a pattern that I only discovered recently by looking at hundreds of kids' data. I only got to analyzing Peggy's data yesterday so this is why haven't contacted you sooner. > > It's important that we do a follow up visit to discuss, this could be very important to why she developed OCD. > -- > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2010 Report Share Posted November 17, 2010 Actually he told me to call him in the morning. I hope that he is a bit more organized tomorrow. Seems like a genius but super over-loaded with patients, and your right, no staff. Very nice man, but... that only helps so much. :0) I will keep you posted. > Hi Wilma, > > I can understand your frustration at disorganization and wonderment/confusion at the note coming so long after your consultation with him. > > I don't see Dr. T, I see Dr. B. But I honestly think the top PANDAS docs have been overwhelmed by PANDAS new patients, since there are so few docs that really know what they are doing. My understanding is that Dr. T. does not really have much in the way of support staff either. > > I think all of the PANDAS docs have been trying to do some analysis of patient data so that they can identify trends of some sort. In that sense they are being very proactive. If I were in your shoes I would contact him to follow up. > > Kara > > > > > > I just got this note from Dr. Trifiletti in NJ that I saw 6 months ago. This letter came after I inquired about the testing done at that time that he said showed nothing. I found him very disorganized when I went to see him with my child and no help at all. My girl had symptoms of her mental sickness at birth so I don't know if his letter is something that makes sense. She also has not only OCD. It appears she has psychosis of some sort too. I need your opinion. Thanks Below is what he sent: > > > > I've attached all the testing we've done on Peggy. We did do some limited metabolic testing. We did also do a microarray genetic test which was normal. > > > > After analyzing hundreds of children with PANDAS, I've noticed patterns of changes in the immune system in some kids. Peggy's seems to show one of these (low IgE and IgG4); it's a pattern that I only discovered recently by looking at hundreds of kids' data. I only got to analyzing Peggy's data yesterday so this is why haven't contacted you sooner. > > > > It's important that we do a follow up visit to discuss, this could be very important to why she developed OCD. > > -- > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2010 Report Share Posted November 17, 2010 If I were you, I would look up those things he mentioned on-line or call your family doctor and ask about them so you can feel like you are somewhat informed when you talk with him. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2010 Report Share Posted November 18, 2010 I have been dealing with doctors for a few years now so when we started on the pandas journey it was not completely new to us. Still I did find pandas doctors frustrating at first until I learned how to work the system. (Well, sometimes it is still frustrating.) We must make sure that we always follow up and ask a lot of questions. I have nothing but great things to say about Dr. T. He is not our main doctor (out of state), but he has answered many questions for us and given a different perspective with his neurological expertise. Just be patient and make sure you keep him... on track. > > > > > > I just got this note from Dr. Trifiletti in NJ that I saw 6 months ago. This letter came after I inquired about the testing done at that time that he said showed nothing. I found him very disorganized when I went to see him with my child and no help at all. My girl had symptoms of her mental sickness at birth so I don't know if his letter is something that makes sense. She also has not only OCD. It appears she has psychosis of some sort too. I need your opinion. Thanks Below is what he sent: > > > > > > I've attached all the testing we've done on Peggy. We did do some limited metabolic testing. We did also do a microarray genetic test which was normal. > > > > > > After analyzing hundreds of children with PANDAS, I've noticed patterns of changes in the immune system in some kids. Peggy's seems to show one of these (low IgE and IgG4); it's a pattern that I only discovered recently by looking at hundreds of kids' data. I only got to analyzing Peggy's data yesterday so this is why haven't contacted you sooner. > > > > > > It's important that we do a follow up visit to discuss, this could be very important to why she developed OCD. > > > -- > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2010 Report Share Posted November 19, 2010 He really seems like a wonderful (brilliant) caring person. I was just a bit disappointed that he keeps forgetting who I am and what he had told me. Three days ago he emails me to see him, because he found some pertinent information regarding my child. He told me to call him at 8am the next morning. I call feeling all excited and he forgot who I was, and did not remember what it was about. Happens all the time with him. Just tough to work this way. I will consider trying it the way you mentioned, thanks. > I have been dealing with doctors for a few years now so when we started on the pandas journey it was not completely new to us. Still I did find pandas doctors frustrating at first until I learned how to work the system. (Well, sometimes it is still frustrating.) We must make sure that we always follow up and ask a lot of questions. I have nothing but great things to say about Dr. T. He is not our main doctor (out of state), but he has answered many questions for us and given a different perspective with his neurological expertise. Just be patient and make sure you keep him... on track. > > > > > > > > > > I just got this note from Dr. Trifiletti in NJ that I saw 6 months ago. This letter came after I inquired about the testing done at that time that he said showed nothing. I found him very disorganized when I went to see him with my child and no help at all. My girl had symptoms of her mental sickness at birth so I don't know if his letter is something that makes sense. She also has not only OCD. It appears she has psychosis of some sort too. I need your opinion. Thanks Below is what he sent: > > > > > > > > I've attached all the testing we've done on Peggy. We did do some limited metabolic testing. We did also do a microarray genetic test which was normal. > > > > > > > > After analyzing hundreds of children with PANDAS, I've noticed patterns of changes in the immune system in some kids. Peggy's seems to show one of these (low IgE and IgG4); it's a pattern that I only discovered recently by looking at hundreds of kids' data. I only got to analyzing Peggy's data yesterday so this is why haven't contacted you sooner. > > > > > > > > It's important that we do a follow up visit to discuss, this could be very important to why she developed OCD. > > > > -- > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2010 Report Share Posted November 19, 2010 Hi Wilma, it does seem frustrating! Hate that happened! Just googling a bit about it, seems to be they have to do with allergies, reactions. A lot of it too technical for my mind. A couple things: http://www.metametrix.com/files/learning-center/articles/IgE-and-IgG4-Immune-Rea\ ctions-to-Food.pdf http://www.jacionline.org/article/S0091-6749(09)01811-9/abstract http://www.immunedisease.com/patients-and-families/about-pi/types-of-pi/igg-subc\ lass-deficiency.html http://books.google.com/books?id=Z-BjjUjd8CkC & pg=PA600 & lpg=PA600 & dq=low+IgE+and+\ IgG4 & source=bl & ots=XSyHIczK54 & sig=GzuGTFdeuozHI-mgkB-Ds6RWLYk & hl=en & ei=K7fmTOPpG\ IeglAf0qsHFCQ & sa=X & oi=book_result & ct=result & resnum=8 & ved=0CC8Q6AEwBzgU#v=onepage\ & q=low%20IgE%20and%20IgG4 & f=false > > He really seems like a wonderful (brilliant) caring person. I was just a bit disappointed that he keeps forgetting who I am and what he had told me. Three days ago he emails me to see him, because he found some pertinent information regarding my child. He told me to call him at 8am the next morning. I call feeling all excited and he forgot who I was, and did not remember what it was about. Happens all the time with him. Just tough to work this way. I will consider trying it the way you mentioned, thanks. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2010 Report Share Posted November 20, 2010 You could also post http://www.latitudes.org/forums/index.php?s=77d400abfd3e2eab4b1e64af50d33d35 & sho\ wforum=17 Maybe someone there has gotten a similar note from him or has been good about keeping on top of the latest theories, etc. > > If I were you, I would look up those things he mentioned on-line or call > your family doctor and ask about them so you can feel like you are somewhat > informed when you talk with him. > > > > > > Quote Link to comment Share on other sites More sharing options...
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