Guest guest Posted March 23, 2006 Report Share Posted March 23, 2006 Alia, My daughter and I will be there then, too, but her appt is on the 8th, the day of the pediatric convention. There is a hotel room at the cambridge hyatt for 70 dollars a night still open (i think) if you need a room. It may not be for the ready by the 6th though. You'll be amazed at the evaluation! ', a 10 yrs jra/uveitis Alia.Pranke@... wrote: Hey everyone! We have good news!! We got in to see Dr. in Boston!! For those of you who don't know, he is considered the " best in the biz " for Uveitis/Iritis. We have been struggling with Caroline's iritis for so long and we just want to make sure that all that is being done is being done. We leave for Boston on the 6th - two weeks from today!! We are really hoping that Dr. can come up with something for her eyes... Alia and Caroline, age 4, poly and iritis Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2006 Report Share Posted March 23, 2006 ' - That is amazing!! We are planning on attending the conference as well. It will be great to meet you!! Our appointment is on Friday morning. We can't wait! We have booked our room already, but thanks for the info.. We are staying at the Marriott - Kendall. It's supposedly close to the office... Alia and Caroline, age 4, poly and iritis ________________________________ From: [mailto: ] On Behalf Of ' Taunton Sent: Thursday, March 23, 2006 9:34 AM Subject: Re: Boston Bound Alia, My daughter and I will be there then, too, but her appt is on the 8th, the day of the pediatric convention. There is a hotel room at the cambridge hyatt for 70 dollars a night still open (i think) if you need a room. It may not be for the ready by the 6th though. You'll be amazed at the evaluation! ', a 10 yrs jra/uveitis Alia.Pranke@... wrote: Hey everyone! We have good news!! We got in to see Dr. in Boston!! For those of you who don't know, he is considered the " best in the biz " for Uveitis/Iritis. We have been struggling with Caroline's iritis for so long and we just want to make sure that all that is being done is being done. We leave for Boston on the 6th - two weeks from today!! We are really hoping that Dr. can come up with something for her eyes... Alia and Caroline, age 4, poly and iritis Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2006 Report Share Posted March 23, 2006 I know.... I hope we can get some answers. We are going to be in Boston Thursday-Sunday. My parents and sister and brother are flying up from Florida and meeting us there for the weekend also. They are coming in on Wednesday though... My brother is 15 and is going to be a junior next year so they are going to check out some of the colleges in Boston. They are coming to Georgia also so they can tour some colleges for him there too.... Yup - the whole family is going! It will be little Evan's fourth plane trip and he's only 8 months old! Alia and Caroline, age 4, poly and iritis ________________________________ From: [mailto: ] On Behalf Of hburger64 Sent: Thursday, March 23, 2006 9:36 AM Subject: Re: Boston Bound ---YEAH!!! I hope you get some answers, or at least know you are doing the right things in trying to control Miss C's eyes. Hopefully he will come up with a wonderful new plan that puts her eyes into remission FOR GOOD!!!! How long will you be in Boston, are all 4 of you going?? hugs Helen and (8,systemic) In , <Alia.Pranke@...> wrote: > > Hey everyone! We have good news!! We got in to see Dr. in > Boston!! For those of you who don't know, he is considered the " best in > the biz " for Uveitis/Iritis. We have been struggling with Caroline's > iritis for so long and we just want to make sure that all that is being > done is being done. We leave for Boston on the 6th - two weeks from > today!! > > We are really hoping that Dr. can come up with something for her > eyes... > > Alia and Caroline, age 4, poly and iritis > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2006 Report Share Posted March 23, 2006 Alia, When Aundrea was first ill I took her from one specialist to another. Sometimes I wondered if I would be labled as a hypochondriac mother. The truth that I came to realize was that noone was going to love my daughter more than my husband and myself. Noone was going to invest more of their time in trying to figure out what was wrong. And noone was going to agonize more about the treatment plan that we selected more that us! Caroline and Evan are your #1 priority. Of course you are willing to go to the ends of the earth to make sure you are doing whatever it takes to restore Carolines health and childhood. That doesn't make you obsessed. It just makes you a good mom! :-) Blessings, (Aundrea 10 systemic jra) > > > > Hey everyone! We have good news!! We got in to see Dr. in > > Boston!! For those of you who don't know, he is considered > the " best in > > the biz " for Uveitis/Iritis. We have been struggling with > Caroline's > > iritis for so long and we just want to make sure that all that is > being > > done is being done. We leave for Boston on the 6th - two weeks from > > today!! > > > > We are really hoping that Dr. can come up with something > for her > > eyes... > > > > Alia and Caroline, age 4, poly and iritis > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2006 Report Share Posted March 23, 2006 Alia, DON'T EVER GIVE UP! Your are the voice of Caroline, and she doesn't want you to give up. Too bad if some Dr. thinks your are bugging them.....remember you are their Customer! You keep the Dr. in business! ________________________________ From: [mailto: ] On Behalf Of Alia.Pranke@... Sent: Thursday, March 23, 2006 9:53 AM Subject: RE: Re: Boston Bound Thanks ! I think I am just obsessed! I am sure her doctors are sick of me - but like all of you, I feel like I just have to fight fight fight. Caroline has lived with this stubborn disease for over half her life. I just get frustrated with that, but am relieved that maybe I can help her just a little! Alia and Caroline, age 4, poly and iritis ________________________________ From: [mailto: ] On Behalf Of sonia1md Sent: Thursday, March 23, 2006 9:50 AM Subject: Re: Boston Bound Wonderful news Alia! You are such a great mom. Willing to check out everything to make sure that you are getting the very best care for sweet Caroline! I hope that the trip will be a good one and that an even better game plan for her care will be established! Blessings, (aundrea 10 systemic jra) -- In , <Alia.Pranke@...> wrote: > > Hey everyone! We have good news!! We got in to see Dr. in > Boston!! For those of you who don't know, he is considered the " best in > the biz " for Uveitis/Iritis. We have been struggling with Caroline's > iritis for so long and we just want to make sure that all that is being > done is being done. We leave for Boston on the 6th - two weeks from > today!! > > We are really hoping that Dr. can come up with something for her > eyes... > > Alia and Caroline, age 4, poly and iritis > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2006 Report Share Posted March 23, 2006 As of her last appt, the inflammation was down. Our problem has been that as soon as we taper down to a drop a day or so, it comes back. So we're on that taper, and she's been back on mtx for 5 weeks now. So hopefully, that'll do the trick! Thanks for asking. Let me know how you like Dr. . He's always on my mind as an option if necessary, so I'm curious to hear what he has to say. Diane (, 6, pauci, iritis) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2006 Report Share Posted March 23, 2006 Thanks Diane! We are hoping so!! How are 's eyes now? Are both her doc's still working together?? Alia and Caroline, age 4, poly and iritis ________________________________ From: [mailto: ] On Behalf Of dbornscheu@... Sent: Thursday, March 23, 2006 10:22 AM Subject: Re: Boston Bound Alia- Good for you! I hope Dr. has some ideas for you. Best of luck! Diane (, 6, pauci-in remission, iritis) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2006 Report Share Posted March 23, 2006 Thanks !! I appreciate all the encouragement! We all know how hard it is to be that voice for our little one's. That is soo true about keeping them in business. I just got her bill from her last IVIG - $12,000!!! Eeck... Alia and Caroline, age 4, poly and iritis ________________________________ From: [mailto: ] On Behalf Of Ray Sent: Thursday, March 23, 2006 9:59 AM Subject: RE: Re: Boston Bound Alia, DON'T EVER GIVE UP! Your are the voice of Caroline, and she doesn't want you to give up. Too bad if some Dr. thinks your are bugging them.....remember you are their Customer! You keep the Dr. in business! ________________________________ From: [mailto: ] On Behalf Of Alia.Pranke@... Sent: Thursday, March 23, 2006 9:53 AM Subject: RE: Re: Boston Bound Thanks ! I think I am just obsessed! I am sure her doctors are sick of me - but like all of you, I feel like I just have to fight fight fight. Caroline has lived with this stubborn disease for over half her life. I just get frustrated with that, but am relieved that maybe I can help her just a little! Alia and Caroline, age 4, poly and iritis ________________________________ From: [mailto: ] On Behalf Of sonia1md Sent: Thursday, March 23, 2006 9:50 AM Subject: Re: Boston Bound Wonderful news Alia! You are such a great mom. Willing to check out everything to make sure that you are getting the very best care for sweet Caroline! I hope that the trip will be a good one and that an even better game plan for her care will be established! Blessings, (aundrea 10 systemic jra) -- In , <Alia.Pranke@...> wrote: > > Hey everyone! We have good news!! We got in to see Dr. in > Boston!! For those of you who don't know, he is considered the " best in > the biz " for Uveitis/Iritis. We have been struggling with Caroline's > iritis for so long and we just want to make sure that all that is being > done is being done. We leave for Boston on the 6th - two weeks from > today!! > > We are really hoping that Dr. can come up with something for her > eyes... > > Alia and Caroline, age 4, poly and iritis > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2006 Report Share Posted March 23, 2006 It is close to the office. Have you registered for the conference, yet? I can't wait to meet you, too! If you want any cheap tricks on how to get to your motel without doing the taxi thing let me know. It would be tons easier to do the taxi, but I could get you from the airport to the hotel for $1.25 if you'd like. I have to know all the cheating methods or I wouldn't be able to go to Boston every 3 months. I may graduate up to every 6 months pretty soon. I'm pretty excited about that one! See you soon! ' Alia.Pranke@... wrote: ' - That is amazing!! We are planning on attending the conference as well. It will be great to meet you!! Our appointment is on Friday morning. We can't wait! We have booked our room already, but thanks for the info.. We are staying at the Marriott - Kendall. It's supposedly close to the office... Alia and Caroline, age 4, poly and iritis ________________________________ From: [mailto: ] On Behalf Of ' Taunton Sent: Thursday, March 23, 2006 9:34 AM Subject: Re: Boston Bound Alia, My daughter and I will be there then, too, but her appt is on the 8th, the day of the pediatric convention. There is a hotel room at the cambridge hyatt for 70 dollars a night still open (i think) if you need a room. It may not be for the ready by the 6th though. You'll be amazed at the evaluation! ', a 10 yrs jra/uveitis Alia.Pranke@... wrote: Hey everyone! We have good news!! We got in to see Dr. in Boston!! For those of you who don't know, he is considered the " best in the biz " for Uveitis/Iritis. We have been struggling with Caroline's iritis for so long and we just want to make sure that all that is being done is being done. We leave for Boston on the 6th - two weeks from today!! We are really hoping that Dr. can come up with something for her eyes... Alia and Caroline, age 4, poly and iritis Quote Link to comment Share on other sites More sharing options...
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