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Dr. T Appt


Suzan
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Hello my PANDAS family! We are back from NJ/NYC and our trip to see Dr. Trifiletti. It was a great trip all around. The girls handled the trip very well. DD8 is no longer afraid of trains and she had a great time at the top of the Empire State Building. It's possible she's no longer afraid of heights! Everything we did was scary for her and by the end of the trip, she felt comfortable in busy, crowded NY (except for the cigarette smoking, drunk Santa Clauses and grafitti which all make her very uncomfortable :) ).

Our trip went as planned and on schedule. I could go on about the things we did, but I'll try to keep it short and about our dr. visit.

 

Dr. T is wonderful. He was so helpful in picking us up from the train station and helping us find food and getting back to the hotel. Thank you Dr. T! He is passionate about PANDAS and has so much experience.

 

The kids had a great time at the appt. We were so tired from the trip but they had fun playing in his play room that had toys and other things to entertain them. Dr. T and I talked over the kids history and then there was a fun exam for the kids (fun meaning they got to show off their reading and writing skills and motor skills). I am lucky that the kids were in a really good space which helped so much with managing the trip but I was wishing Dr. T could see they're PANDAS behavior although he got to see some anxiety and OCD poking through.

 

It was great to be at a dr. appt where the doc totally got what you were saying and understood what you are going through. He agreed that we are on the right path and that PANDAS is the correct diagnosis. He wrote a script for some other immune workups which we need to get now that we are back. After he gets those test results, there may be a antibiotic change, possibly steroid trial in the future. He said dd8 seemed to be antibiotic dependent and if that continues, then switching out the antiboitics and trying the steriods may help.

IVIG would be a possibility in the future but he would like to wait and see on that and I agree that I don't think we need it right now but I'm glad to know we can talk to him about it if things fall apart.

 

The girls gave him hugs when we left and have only good things to say about him. I think that the trip was worth it to have an expert on our team. He would like me to see Dr. Bobolus (sp?) if things get worse, but maybe our immunologist would consult with him. He said it does look like there is something going on with dd8's immune system with her lowish numbers but not sure what.

 

He is testing (re-testing for dd8) IgE, IgA, IgM, IgG and subclasses but also IgA subclasses and a couple of other things but I need to find our script and then I'll post the others. Regarding Allergy Shots, he said although it was not his area of expertise, for my girls, he would be very afraid to try them since we don't want to excite the entire immune system and they seem so sensitive (I hope I got that reasoning right Dr. T), so my plan is to not do them.

 

Susan

 

Edit - Oh yeah, regarding dd8's pain, especially the pain where she can't walk. He said he's seen that before and the way I describe it, it sounds totally related to strep. He does not feel like she has rheumatic fever and it's a reaction (can't remember what he called it) to the strep bacteria.

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I'm glad you had a ggod trip and experience. He sounds so nice! I do have a question. What is antibiotic dependent?

 

He means that if she goes off her current dose of antibiotics, her symptoms come back. I think he means that if you get rid of the strep, you should be able to go to a lower dose to just keep the strep away but when we lower her dose, her symptoms come back. It may be that she has hidden strep that we can't get rid of or.... I don't remember the other possibilities now.....

 

Susan

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Hello my PANDAS family! We are back from NJ/NYC and our trip to see Dr. Trifiletti. It was a great trip all around. The girls handled the trip very well. DD8 is no longer afraid of trains and she had a great time at the top of the Empire State Building. It's possible she's no longer afraid of heights! Everything we did was scary for her and by the end of the trip, she felt comfortable in busy, crowded NY (except for the cigarette smoking, drunk Santa Clauses and grafitti which all make her very uncomfortable :) ).

Our trip went as planned and on schedule. I could go on about the things we did, but I'll try to keep it short and about our dr. visit.

 

Dr. T is wonderful. He was so helpful in picking us up from the train station and helping us find food and getting back to the hotel. Thank you Dr. T! He is passionate about PANDAS and has so much experience.

 

The kids had a great time at the appt. We were so tired from the trip but they had fun playing in his play room that had toys and other things to entertain them. Dr. T and I talked over the kids history and then there was a fun exam for the kids (fun meaning they got to show off their reading and writing skills and motor skills). I am lucky that the kids were in a really good space which helped so much with managing the trip but I was wishing Dr. T could see they're PANDAS behavior although he got to see some anxiety and OCD poking through.

 

It was great to be at a dr. appt where the doc totally got what you were saying and understood what you are going through. He agreed that we are on the right path and that PANDAS is the correct diagnosis. He wrote a script for some other immune workups which we need to get now that we are back. After he gets those test results, there may be a antibiotic change, possibly steroid trial in the future. He said dd8 seemed to be antibiotic dependent and if that continues, then switching out the antiboitics and trying the steriods may help.

IVIG would be a possibility in the future but he would like to wait and see on that and I agree that I don't think we need it right now but I'm glad to know we can talk to him about it if things fall apart.

 

The girls gave him hugs when we left and have only good things to say about him. I think that the trip was worth it to have an expert on our team. He would like me to see Dr. Bobolus (sp?) if things get worse, but maybe our immunologist would consult with him. He said it does look like there is something going on with dd8's immune system with her lowish numbers but not sure what.

 

He is testing (re-testing for dd8) IgE, IgA, IgM, IgG and subclasses but also IgA subclasses and a couple of other things but I need to find our script and then I'll post the others. Regarding Allergy Shots, he said although it was not his area of expertise, for my girls, he would be very afraid to try them since we don't want to excite the entire immune system and they seem so sensitive (I hope I got that reasoning right Dr. T), so my plan is to not do them.

 

Susan

 

Edit - Oh yeah, regarding dd8's pain, especially the pain where she can't walk. He said he's seen that before and the way I describe it, it sounds totally related to strep. He does not feel like she has rheumatic fever and it's a reaction (can't remember what he called it) to the strep bacteria.

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Hello my PANDAS family! We are back from NJ/NYC and our trip to see Dr. Trifiletti. It was a great trip all around. The girls handled the trip very well. DD8 is no longer afraid of trains and she had a great time at the top of the Empire State Building. It's possible she's no longer afraid of heights! Everything we did was scary for her and by the end of the trip, she felt comfortable in busy, crowded NY (except for the cigarette smoking, drunk Santa Clauses and grafitti which all make her very uncomfortable :) ).

Our trip went as planned and on schedule. I could go on about the things we did, but I'll try to keep it short and about our dr. visit.

 

Dr. T is wonderful. He was so helpful in picking us up from the train station and helping us find food and getting back to the hotel. Thank you Dr. T! He is passionate about PANDAS and has so much experience.

 

The kids had a great time at the appt. We were so tired from the trip but they had fun playing in his play room that had toys and other things to entertain them. Dr. T and I talked over the kids history and then there was a fun exam for the kids (fun meaning they got to show off their reading and writing skills and motor skills). I am lucky that the kids were in a really good space which helped so much with managing the trip but I was wishing Dr. T could see they're PANDAS behavior although he got to see some anxiety and OCD poking through.

 

It was great to be at a dr. appt where the doc totally got what you were saying and understood what you are going through. He agreed that we are on the right path and that PANDAS is the correct diagnosis. He wrote a script for some other immune workups which we need to get now that we are back. After he gets those test results, there may be a antibiotic change, possibly steroid trial in the future. He said dd8 seemed to be antibiotic dependent and if that continues, then switching out the antiboitics and trying the steriods may help.

IVIG would be a possibility in the future but he would like to wait and see on that and I agree that I don't think we need it right now but I'm glad to know we can talk to him about it if things fall apart.

 

The girls gave him hugs when we left and have only good things to say about him. I think that the trip was worth it to have an expert on our team. He would like me to see Dr. Bobolus (sp?) if things get worse, but maybe our immunologist would consult with him. He said it does look like there is something going on with dd8's immune system with her lowish numbers but not sure what.

 

He is testing (re-testing for dd8) IgE, IgA, IgM, IgG and subclasses but also IgA subclasses and a couple of other things but I need to find our script and then I'll post the others. Regarding Allergy Shots, he said although it was not his area of expertise, for my girls, he would be very afraid to try them since we don't want to excite the entire immune system and they seem so sensitive (I hope I got that reasoning right Dr. T), so my plan is to not do them.

 

Susan

 

Edit - Oh yeah, regarding dd8's pain, especially the pain where she can't walk. He said he's seen that before and the way I describe it, it sounds totally related to strep. He does not feel like she has rheumatic fever and it's a reaction (can't remember what he called it) to the strep bacteria.

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Hi. I am brand new to posting so hope I am doing it right.

How hard is it to get an appointment with Dr. T?

Thanks

 

Hi, right now, I don't think it's hard to get an appt. but he is receiving so many calls and emails that I know this takes a lot of his time so if you call and don't hear from him, be sure to keep trying.

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(except for the cigarette smoking, drunk Santa Clauses and grafitti which all make her very uncomfortable ).

 

eh, ya get used to it...... what's Christmas without a drunken Santa Claus, I say!...... :lol: ..... :blink:

 

 

 

susan, why did you travel to see Dr. T.? was this for second opinion? what abx are your girls taking presently? and they are doing well you said? so whatever you talked about was for future? do you want to persue anything else, or are your girls doing well enough for now? what will these tests he wants you to get reveal? if he gives you any change in abx, will you have to go back to him, or do you have another doctor in your area that you work with? was the office crowded, or is he just getting alot of phone and e-mail inquiries?

 

thanks.

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she felt comfortable in busy, crowded NY (except for the cigarette smoking, drunk Santa Clauses and grafitti which all make her very uncomfortable :blink: ).

 

 

susan - so glad to hear it went well. and all that makes me uncomfortable as well!

 

are you planning to go back to dr t or is he going to consult with your ped? i had e-mailed him to ask about his consultation policies with other drs but haven't heard back - i'll have to send it again. happy to hear the positiveness in your post!

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susan, why did you travel to see Dr. T.? was this for second opinion? what abx are your girls taking presently? and they are doing well you said? so whatever you talked about was for future? do you want to persue anything else, or are your girls doing well enough for now? what will these tests he wants you to get reveal? if he gives you any change in abx, will you have to go back to him, or do you have another doctor in your area that you work with? was the office crowded, or is he just getting alot of phone and e-mail inquiries?

 

thanks.

 

Hi Faith! When we made the appt, dd8 was a wreck, worse than I've seen her in a while. I was desperate and worried about our local support. But between then and our appt, I upped her antibiotics and she started doing really well. But I decided we needed to keep the appt to get a specialist oppinion on how we were doing. He can now assist our local immunologist since he's met and assessed them. I felt like we were flying blind here with our current doc and this way I feel like we have some real, experienced help and in the event that we need IVIG in the future, we can have him assist. After he reviews our blood work, he can give his recommendation to our local doc and hopefully she will try what he suggests. Otherwise, I think he will write a prescription for it without us having to travel again. Right now, I feel like both girls are teetering on the edge and i'm not sure which way they will go.

 

His office was not crowded, it was just us and him. Very casual and easy. I think he is mostly getting phone and emails right now and getting everything going.

 

I found our blood draw order.... dd7 has not had any of these done but for dd8, some are repeat tests.

 

ASO

AntiDNASE B

Quantitive Immunoglobulins (IgA, IgM, IgE, IgG)

IgG Sugclasses

IgA Subclasses

EBV Panel (epstein bar blood panel/mono)

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