momaine Posted April 13, 2010 Report Share Posted April 13, 2010 We traveled to Ct today to see Dr. Bouboulis. He was very thorough and very kind. He listened to our story and looked into my dd's nose and said she has a sinus infection. (assumed to be strep in the sinuses) She has no symptoms of a sinus infection other than PANDAS symptoms. He continued her on Azith and Augmentin, did a steroid taper, and gave us stuff to rinse her sinuses with. One is called a hypertonic spray to spray in her nose 3 to 4 times per day and the other is a sinus rinse to be done twice per day. He also did some allergy testing on her which she had a few positives to which we will address with allergy meds (singulair) and trying to remove allergens from our home. The allergies contribute to swelling in the sinuses which make it a great place for bacteria to grow. (one of her allergies is dust mites which can be killed in sheets by washing in very hot water or putting 1 tsp of euclalyptis oil in the water.) He also put her on Diflucan for the duration of the time she is on antibiotics to keep yeast at bay. He also ordered a host of blood tests to see how her immune system is working. He felt she was a good candidate for IVIG since her symptoms are so severe and she has had this for so long. (almost 4 years) Overall, it was a VERY positive experience. He was caring and kind and extremely knowledgable. I am looking forward to working with him to make our dd well. He felt that she WILL get well. I'm still on the road and don't know if I'll have time to respond much till Friday but I'll answer any questions when I get home and have a few minutes. Angela Link to comment Share on other sites More sharing options...
kimballot Posted April 13, 2010 Report Share Posted April 13, 2010 Thanks for posting! Sounds very positive! Link to comment Share on other sites More sharing options...
sf_mom Posted April 13, 2010 Report Share Posted April 13, 2010 Yeah.... you are in good hands. I look forward to hearing of your daughter's recovery. Link to comment Share on other sites More sharing options...
Fixit Posted April 13, 2010 Report Share Posted April 13, 2010 are you seeing dr B... Yeah.... you are in good hands. I look forward to hearing of your daughter's recovery. Link to comment Share on other sites More sharing options...
bronxmom2 Posted April 14, 2010 Report Share Posted April 14, 2010 I am so glad you made the effort to see him. He and his staff are really wonderful. If there is anything in the blood work to justify the IVIG, you will get it! And quickly, too. AND he seems really good at getting insurance to cover it. AND he was humble enough to confer with Dr. K on the best way to treat PANDAS. He is a good person! Best of luck. Link to comment Share on other sites More sharing options...
thereishope Posted April 14, 2010 Report Share Posted April 14, 2010 Good to hear you had a good appt. However...be watchful on Singulair. Some PANDAS kids do not react well to it. Link to comment Share on other sites More sharing options...
Fixit Posted April 14, 2010 Report Share Posted April 14, 2010 i guess you are using dr B did you do ivig.... did you get it covered by ins I am so glad you made the effort to see him. He and his staff are really wonderful. If there is anything in the blood work to justify the IVIG, you will get it! And quickly, too. AND he seems really good at getting insurance to cover it. AND he was humble enough to confer with Dr. K on the best way to treat PANDAS. He is a good person! Best of luck. Link to comment Share on other sites More sharing options...
momaine Posted April 14, 2010 Author Report Share Posted April 14, 2010 fixit,if you read the title and first post in this thread, you will see the anwers to your questions. Hoping for ivig, depends on test results whether insurance will pay for it. it'll take about a month to find out with a couple of blood tests done two weeks apart. will have it done either way since he is confident it will help her. we will see Dr. B again in the middle of may. i guess you are using dr Bdid you do ivig.... did you get it covered by ins I am so glad you made the effort to see him. He and his staff are really wonderful. If there is anything in the blood work to justify the IVIG, you will get it! And quickly, too. AND he seems really good at getting insurance to cover it. AND he was humble enough to confer with Dr. K on the best way to treat PANDAS. He is a good person! Best of luck. Link to comment Share on other sites More sharing options...
Joan Pandas Mom Posted April 14, 2010 Report Share Posted April 14, 2010 In previous posts there were ?'s about whether or not Dr. B. actually orders the IVIG or takes the orders from other docs. Does he order them too? Link to comment Share on other sites More sharing options...
coco Posted April 14, 2010 Report Share Posted April 14, 2010 In previous posts there were ?'s about whether or not Dr. B. actually orders the IVIG or takes the orders from other docs. Does he order them too? Yes, he orders them based on his own exam/tests, etc. Link to comment Share on other sites More sharing options...
momaine Posted April 14, 2010 Author Report Share Posted April 14, 2010 can you be more specifi as to what i should be on the lookout for? ty angela Good to hear you had a good appt. However...be watchful on Singulair. Some PANDAS kids do not react well to it. Link to comment Share on other sites More sharing options...
thereishope Posted April 14, 2010 Report Share Posted April 14, 2010 (edited) It sounds like it might spark rages.If you go to the main forum page and type "Singulair" in keyword, threads will pop up. Here's one for example... http://www.latitudes.org/forums/index.php?...mp;hl=singulair I saw some posts warning about it dating as far back as 2008. Edited April 14, 2010 by Vickie Link to comment Share on other sites More sharing options...
Fixit Posted April 14, 2010 Report Share Posted April 14, 2010 Thanks Momaine for replying... i was inquiring on bronxmom and sfmom......it gets difficult to keep everyones story straight.... i see on bronx other posts...that she started with doc K, ithink and moved over to doc b....for montly ivigs... was more curious if people's replies were word mouth or a personal experience.... fixit,if you read the title and first post in this thread, you will see the anwers to your questions.Hoping for ivig, depends on test results whether insurance will pay for it. it'll take about a month to find out with a couple of blood tests done two weeks apart. will have it done either way since he is confident it will help her. we will see Dr. B again in the middle of may. i guess you are using dr Bdid you do ivig.... did you get it covered by ins I am so glad you made the effort to see him. He and his staff are really wonderful. If there is anything in the blood work to justify the IVIG, you will get it! And quickly, too. AND he seems really good at getting insurance to cover it. AND he was humble enough to confer with Dr. K on the best way to treat PANDAS. He is a good person! Best of luck. Link to comment Share on other sites More sharing options...
faith Posted April 14, 2010 Report Share Posted April 14, 2010 We traveled to Ct today to see Dr. Bouboulis. He was very thorough and very kind. He listened to our story and looked into my dd's nose and said she has a sinus infection. (assumed to be strep in the sinuses) She has no symptoms of a sinus infection other than PANDAS symptoms. He continued her on Azith and Augmentin, did a steroid taper, and gave us stuff to rinse her sinuses with. One is called a hypertonic spray to spray in her nose 3 to 4 times per day and the other is a sinus rinse to be done twice per day. He also did some allergy testing on her which she had a few positives to which we will address with allergy meds (singulair) and trying to remove allergens from our home. The allergies contribute to swelling in the sinuses which make it a great place for bacteria to grow. (one of her allergies is dust mites which can be killed in sheets by washing in very hot water or putting 1 tsp of euclalyptis oil in the water.) He also put her on Diflucan for the duration of the time she is on antibiotics to keep yeast at bay. He also ordered a host of blood tests to see how her immune system is working. He felt she was a good candidate for IVIG since her symptoms are so severe and she has had this for so long. (almost 4 years) Overall, it was a VERY positive experience. He was caring and kind and extremely knowledgable. I am looking forward to working with him to make our dd well. He felt that she WILL get well. I'm still on the road and don't know if I'll have time to respond much till Friday but I'll answer any questions when I get home and have a few minutes. Angela Angela, You say the doc thinks your son has a sinus infection, or that he definitely does? he could tell just by looking in there? And he has no symptoms tho, sinsus pressure, mucious, nasal talk, whatever? If your son has this, I would go to an ENT to check it out. I would also like to warn against the Singular, last year there was an article that came out about kids having psychotic symptoms while on it, .. if I find it, I'll post it, but you could do a search on the TS side, pretty sure its there. Faith Link to comment Share on other sites More sharing options...
sf_mom Posted April 14, 2010 Report Share Posted April 14, 2010 We are being treated by Dr. K. A friend's daughter is being treated by Dr. B....... So, my knowledge of him is base on my conversations with my friend. -Wendy Link to comment Share on other sites More sharing options...
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