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Flying off to see Dr L on Sunday!


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I can't believe I'm actually flying my kiddo on a plane this weekend!. It's weird to have this "virtual" experience on this forum come to life. I am both excited and NERVOUS! Trying to keep my own anxieties under control....Not sure if I'm ready to hear "this doesn't look like PANDAS" or "This looks like PANDAS". EIther way, I know there's a long, long road ahead. He's been sick for so long, I know there's no easy fix. I just want to know his treatment is the appropriate kind. I'm as prepared as I know I can be with my timeline and lab work...We weren't able to get the CAMkinase done before the appointment because somehow FedEx lost our kit in transit, but the UofOk folks were so awesome about it and called Dr. L's office to request they do the blood draw there and they will send it in for me. So nice to have helpful people on my side for once!!! If I can keep my son undercontrol at the airport (he's usually find till we land in the strange airport and then the anxieties take over), the rest should be ok. On the bright side, I was able to get passes from our Congressman for a Capitol tour for Monday, so if he's rested and recovered enough from the flight that should be cool for him. Wish me luck, strength and faith!!

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I can't believe I'm actually flying my kiddo on a plane this weekend!. It's weird to have this "virtual" experience on this forum come to life. I am both excited and NERVOUS! Trying to keep my own anxieties under control....Not sure if I'm ready to hear "this doesn't look like PANDAS" or "This looks like PANDAS". EIther way, I know there's a long, long road ahead. He's been sick for so long, I know there's no easy fix. I just want to know his treatment is the appropriate kind. I'm as prepared as I know I can be with my timeline and lab work...We weren't able to get the CAMkinase done before the appointment because somehow FedEx lost our kit in transit, but the UofOk folks were so awesome about it and called Dr. L's office to request they do the blood draw there and they will send it in for me. So nice to have helpful people on my side for once!!! If I can keep my son undercontrol at the airport (he's usually find till we land in the strange airport and then the anxieties take over), the rest should be ok. On the bright side, I was able to get passes from our Congressman for a Capitol tour for Monday, so if he's rested and recovered enough from the flight that should be cool for him. Wish me luck, strength and faith!!

 

Wow! I'd call that a turning point! Good for you and your family! Wishing you all the luck, strength and faith needed and hoping this leads to giant step on your kiddos path to recovery. Safe travels to you.

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Best of luck and have a great trip!

 

I can't believe I'm actually flying my kiddo on a plane this weekend!. It's weird to have this "virtual" experience on this forum come to life. I am both excited and NERVOUS! Trying to keep my own anxieties under control....Not sure if I'm ready to hear "this doesn't look like PANDAS" or "This looks like PANDAS". EIther way, I know there's a long, long road ahead. He's been sick for so long, I know there's no easy fix. I just want to know his treatment is the appropriate kind. I'm as prepared as I know I can be with my timeline and lab work...We weren't able to get the CAMkinase done before the appointment because somehow FedEx lost our kit in transit, but the UofOk folks were so awesome about it and called Dr. L's office to request they do the blood draw there and they will send it in for me. So nice to have helpful people on my side for once!!! If I can keep my son undercontrol at the airport (he's usually find till we land in the strange airport and then the anxieties take over), the rest should be ok. On the bright side, I was able to get passes from our Congressman for a Capitol tour for Monday, so if he's rested and recovered enough from the flight that should be cool for him. Wish me luck, strength and faith!!
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How exciting! We will also be in DC , for the better part of next week, doing IVIG at Georgetown. Dr. Latimer is WONDERFUL! Make a plan, write down questions, as the appointment goes sooooo quickly! Good luck traveling!

 

I never thought about hitting my congressman up for passes although we did have to hit him up for a letter to expedite our passports a few months ago, and it worked like a charm!

 

Do the tour of the mint if you can, it's very interesting...I'm glad you're planning something fun into this all!

 

Lynn

 

I can't believe I'm actually flying my kiddo on a plane this weekend!. It's weird to have this "virtual" experience on this forum come to life. I am both excited and NERVOUS! Trying to keep my own anxieties under control....Not sure if I'm ready to hear "this doesn't look like PANDAS" or "This looks like PANDAS". EIther way, I know there's a long, long road ahead. He's been sick for so long, I know there's no easy fix. I just want to know his treatment is the appropriate kind. I'm as prepared as I know I can be with my timeline and lab work...We weren't able to get the CAMkinase done before the appointment because somehow FedEx lost our kit in transit, but the UofOk folks were so awesome about it and called Dr. L's office to request they do the blood draw there and they will send it in for me. So nice to have helpful people on my side for once!!! If I can keep my son undercontrol at the airport (he's usually find till we land in the strange airport and then the anxieties take over), the rest should be ok. On the bright side, I was able to get passes from our Congressman for a Capitol tour for Monday, so if he's rested and recovered enough from the flight that should be cool for him. Wish me luck, strength and faith!!
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I can't believe I'm actually flying my kiddo on a plane this weekend!. It's weird to have this "virtual" experience on this forum come to life. I am both excited and NERVOUS! Trying to keep my own anxieties under control....Not sure if I'm ready to hear "this doesn't look like PANDAS" or "This looks like PANDAS". EIther way, I know there's a long, long road ahead. He's been sick for so long, I know there's no easy fix. I just want to know his treatment is the appropriate kind. I'm as prepared as I know I can be with my timeline and lab work...We weren't able to get the CAMkinase done before the appointment because somehow FedEx lost our kit in transit, but the UofOk folks were so awesome about it and called Dr. L's office to request they do the blood draw there and they will send it in for me. So nice to have helpful people on my side for once!!! If I can keep my son undercontrol at the airport (he's usually find till we land in the strange airport and then the anxieties take over), the rest should be ok. On the bright side, I was able to get passes from our Congressman for a Capitol tour for Monday, so if he's rested and recovered enough from the flight that should be cool for him. Wish me luck, strength and faith!!

 

Wow! I'd call that a turning point! Good for you and your family! Wishing you all the luck, strength and faith needed and hoping this leads to giant step on your kiddos path to recovery. Safe travels to you.

 

Thanks for the well wishes - I need them!! I think of you and your son often, as mine is 14 and we have been on this road a long time, as you have. For me, the older he gets, the scarier it gets that we are still living this nightmare. I am holding out hope that we can finally get some true guidance on the best way to help him. Keep me posted on how your son is doing with the new abx over time...

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How exciting! We will also be in DC , for the better part of next week, doing IVIG at Georgetown. Dr. Latimer is WONDERFUL! Make a plan, write down questions, as the appointment goes sooooo quickly! Good luck traveling!

 

I never thought about hitting my congressman up for passes although we did have to hit him up for a letter to expedite our passports a few months ago, and it worked like a charm!

 

Do the tour of the mint if you can, it's very interesting...I'm glad you're planning something fun into this all!

 

Lynn

 

I can't believe I'm actually flying my kiddo on a plane this weekend!. It's weird to have this "virtual" experience on this forum come to life. I am both excited and NERVOUS! Trying to keep my own anxieties under control....Not sure if I'm ready to hear "this doesn't look like PANDAS" or "This looks like PANDAS". EIther way, I know there's a long, long road ahead. He's been sick for so long, I know there's no easy fix. I just want to know his treatment is the appropriate kind. I'm as prepared as I know I can be with my timeline and lab work...We weren't able to get the CAMkinase done before the appointment because somehow FedEx lost our kit in transit, but the UofOk folks were so awesome about it and called Dr. L's office to request they do the blood draw there and they will send it in for me. So nice to have helpful people on my side for once!!! If I can keep my son undercontrol at the airport (he's usually find till we land in the strange airport and then the anxieties take over), the rest should be ok. On the bright side, I was able to get passes from our Congressman for a Capitol tour for Monday, so if he's rested and recovered enough from the flight that should be cool for him. Wish me luck, strength and faith!!

 

 

Lynn:

 

I can't imagine covering 10 years in 2 hours, but I am armed with my pre-appointment questions and plan to bring a notebook with. Does she spend any time with just the parents or is it pretty much both of us in there the whole time? I am wondering because I have a video (whcih my son would be mortified if he knew I had) of one of his milder meltdowns, but I'd like to show it to her because it illustrates what he goes through so much better than I can explain it.

 

Did you do a tour of the Mint in D.C.? That is actually what my son most wanted to do, but when I went online to check it out, it looked like they only did the tours in Philly? If we could do that while there he would LOVE it. I actually asked our congressman for a White House tour, and despite the fact it usually takes 3-6 months to get a pass, the staffer told me she can sometimes get a spot if she has at least 7 days. But she only got back with me with 6 days left :) Hence, the Capital tour. She told me to call her back if we schedule a follow up visit with Dr. L and she will get us in then. Best of luck with the IVIG. How is Lauren feeling about it?

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It's actually called the Beureu of Engraving & Printing because thwy print money/don't make coins there. Here is the link and information. Lauren is ok with the IVIG, we are cautiously optomistic! How long do you plan on being in D.C? We spent the entire 2 hour appointment together with Lauren, so I would either slide her a little note to Faith, her secretary when you check in or try to email her the video in advance or both!

 

Lynn

 

http://www.moneyfactory.gov/tours/washingtondctours.html

 

Washington, DC Tours

 

 

Located in the heart of the Nation's Capital, the BEP's Washington, DC Tour and Visitor Center is a great place to learn all about U.S. paper currency. You can see millions of dollars being printed as you walk along the gallery overlooking the production floor! The free 40-minute experience includes an introductory film and gallery tour of the production process. The visitor center includes exhibits and currency products for sale.

 

 

 

The Tour and Visitor Center is closed on weekends, Federal holidays, and the week between Christmas and New Years Day.

 

 

 

Policies

 

Cameras are allowed in the facility, but their use in the tour gallery is prohibited.

 

Visitors must pass through a metal detector and belongings will be screened before entering the building.

 

 

 

Strollers are allowed in the facility, but may not be taken on the tour.

 

Anyone found in violation of BEP policies as written or explained by the tour guides, will be escorted off the premises by a police officer. Visitors must follow the direction of the BEP Police while on BEP property.

 

 

Non-Peak Season Hours

 

September - February

 

No tickets required

 

Space is given on a first-come, first-served basis with the line forming at the Visitor Entrance on 14th Street.

 

 

 

The Visitor Center is open daily from 8:30 a.m. to 3:30 p.m.

 

Tours run every 15 minutes from 9 a.m. to 2 p.m. with advance reservations held for large groups between 11 a.m. and 12:15 p.m.

 

 

 

 

How exciting! We will also be in DC , for the better part of next week, doing IVIG at Georgetown. Dr. Latimer is WONDERFUL! Make a plan, write down questions, as the appointment goes sooooo quickly! Good luck traveling!

 

I never thought about hitting my congressman up for passes although we did have to hit him up for a letter to expedite our passports a few months ago, and it worked like a charm!

 

Do the tour of the mint if you can, it's very interesting...I'm glad you're planning something fun into this all!

 

Lynn

 

I can't believe I'm actually flying my kiddo on a plane this weekend!. It's weird to have this "virtual" experience on this forum come to life. I am both excited and NERVOUS! Trying to keep my own anxieties under control....Not sure if I'm ready to hear "this doesn't look like PANDAS" or "This looks like PANDAS". EIther way, I know there's a long, long road ahead. He's been sick for so long, I know there's no easy fix. I just want to know his treatment is the appropriate kind. I'm as prepared as I know I can be with my timeline and lab work...We weren't able to get the CAMkinase done before the appointment because somehow FedEx lost our kit in transit, but the UofOk folks were so awesome about it and called Dr. L's office to request they do the blood draw there and they will send it in for me. So nice to have helpful people on my side for once!!! If I can keep my son undercontrol at the airport (he's usually find till we land in the strange airport and then the anxieties take over), the rest should be ok. On the bright side, I was able to get passes from our Congressman for a Capitol tour for Monday, so if he's rested and recovered enough from the flight that should be cool for him. Wish me luck, strength and faith!!

 

 

Lynn:

 

I can't imagine covering 10 years in 2 hours, but I am armed with my pre-appointment questions and plan to bring a notebook with. Does she spend any time with just the parents or is it pretty much both of us in there the whole time? I am wondering because I have a video (whcih my son would be mortified if he knew I had) of one of his milder meltdowns, but I'd like to show it to her because it illustrates what he goes through so much better than I can explain it.

 

Did you do a tour of the Mint in D.C.? That is actually what my son most wanted to do, but when I went online to check it out, it looked like they only did the tours in Philly? If we could do that while there he would LOVE it. I actually asked our congressman for a White House tour, and despite the fact it usually takes 3-6 months to get a pass, the staffer told me she can sometimes get a spot if she has at least 7 days. But she only got back with me with 6 days left :) Hence, the Capital tour. She told me to call her back if we schedule a follow up visit with Dr. L and she will get us in then. Best of luck with the IVIG. How is Lauren feeling about it?

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wornoutmom-

 

I have 2 dds with pandas. They are young 6 and 9. I ALWAYS go in to see Dr L first, by myself. This is my choice- but she is fine with it. I can talk much more freely about their symptoms, then. After her first appt with a doc, dd6 (5 at the time) got REALLY tired of hearing me list all of the horrible symptoms. I decided not to make her go through that anymore. I go in, discuss what is going on, then she examines and talks to them on their level, and then we meet again without the kids.

 

I forget how old your child is- and don't know how they would feel. Mine are relieved to spend less time in the docs office- and talking about ocd symptoms is difficult.

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Keep sending all those positive thoughts our way...My son had a huge panic episode this morning and couldn't make it to school. Everytime he'd start to calm down he'd ramp back up. We made it as far as the car after an hour, but as soon as I left the driveway he freaked and started screaming and hitting the windows and thrashing all over the place and saying he wanted to jump out of the car or find a knife to kill himself. Needless to say, we drove home. My wonderful husband was able to talk him through it via phone enough to help him calm enough to the point he fell asleep eventually. He mustered enough guts to try and make it to the 2nd half of the day - but boy what he went through this morning! He said he didn't even really know what was wrong except he didn't feel good and his brain wasn't working right no matter how he tried. Sigh...so sad.. Here's keeping my fingers crossed this doesn't happen on the plane Sunday or we'll end up on CNN and in a holding tank somewhere!

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