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Trip to Bethesda


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We're flying out Wednesday morning for our Friday appointment. The airport/flight preparations are very stressful....please pray (if you believe in that sort of thing) for us, that getting through security and on the flight goes smoothly for us! I'm so nervous, but feel like finally we'll be able to start really treating and healing! I just don't want to make national headlines: "Autistic girl and family put off plane for unruly behavior!"

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Best wishes!!! Hey, if you make the news make sure that while they are escorting you out that you at least shout out PANDAS.... might as well get it out there any way we can :unsure: All jokes aside I hope this is the answer for you and your dd that you have been searching for.

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Best wishes!!! Hey, if you make the news make sure that while they are escorting you out that you at least shout out PANDAS.... might as well get it out there any way we can :unsure: All jokes aside I hope this is the answer for you and your dd that you have been searching for.

Maybe I can influence the reporters to write it up as "PANDAS girl and family get put off plane for unruly behavior!" Then I'll do the talk show circuit- we'll show everybody what PANDAS looks like when a child's had it most of their life!

 

Okay...THAT IS NOT HAPPENING!!!!

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Peg- I wish you the best with your trip. It will all be okay, and will be worth it if you can get some help for your daughter. Since she has had it so long- I would push Dr L to consider something like: IVIG, then PEX, then maybe a term of monthly IVIG. Just a thought...

 

I will be thinking of you! Where are you staying? Will you be able to do any sightseeing?

 

Eileen

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Good luck on your upcoming trip! We are just outside of Bethesda and it is VERY cold here so pack warm clothes. We are to get more snow late Friday to Sat. which could affect your return flights. I am eager to hear about your appt. w/Dr. Latimer b/c our appt is next month...

 

Now about flying....I am not sure where you are flying from but we just flew cross country w/our two boys and I got two new lego sets for my boys; I had them gift wrapped and had the airline attendant give them to our boys since we flew on Christmas day. It took them most of the flight to put the new lego set together and the flight went awesome. On our connecting flight the boys got a Rubics 360 and a Rubics Twist again the new items kept them busy and entertained for hours. I don't know what your child is interested in but for us something new always helps us travel better. Also, I packed lots of approved (feingold diet) snacks for my boys so we had plenty to munch on which helped keep them regulated. We also always bought water bottles at the terminal to take on the flight and pre-purchased some approved gum so my boys ears didn't hurt on take-off and landing.

 

Well, good luck on your trip and please keep us posted on your appt!

Take care,

Jen

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That would be one way to get PANDAS back in the media spot light! Keep optimistic. I think all will go well for you.

 

 

We're flying out Wednesday morning for our Friday appointment. The airport/flight preparations are very stressful....please pray (if you believe in that sort of thing) for us, that getting through security and on the flight goes smoothly for us! I'm so nervous, but feel like finally we'll be able to start really treating and healing! I just don't want to make national headlines: "Autistic girl and family put off plane for unruly behavior!"
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Peglem, you can do it!!! We did the trip from Seattle twice. And both times were in the middle of a pretty horrible exacerbation. I know that you will be able to pull it off.

 

One of our trips happened just after one of the airlines did kick a child off the plane for unruly behavior. I told DD about that while we were in the terminal. I felt REALLY bad for telling her, but it actually worked. Each time she would start to lose it, I would remind her about the child who had a hard time and wasn't allowed to fly. Her eyes would get really big and it was enough to redirect her. Mine was only 3 (just turned 4) but you could consider this. I do still feel really bad for having to resort to this, but it did help us.

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We're flying out Wednesday morning for our Friday appointment. The airport/flight preparations are very stressful....please pray (if you believe in that sort of thing) for us, that getting through security and on the flight goes smoothly for us! I'm so nervous, but feel like finally we'll be able to start really treating and healing! I just don't want to make national headlines: "Autistic girl and family put off plane for unruly behavior!"

 

 

Contact the airlines ahead of time, and tell them that you have a disabled child. They will help you board ahead of time, and help you make everything smoother. Dr. Latimer is fantastic. I know how you feel. Both my boys have PANDAS, and both are getting tremendously better, because of Dr. Latimer. It's been a very long haul...took 5 years to get diagnosed, and 6 to get treated (Dr. Latimer came on the scene!) I wish you lots of luck, and know that you can finally start breathing easier.

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Peglem, you can do it!!! We did the trip from Seattle twice. And both times were in the middle of a pretty horrible exacerbation. I know that you will be able to pull it off.

 

One of our trips happened just after one of the airlines did kick a child off the plane for unruly behavior. I told DD about that while we were in the terminal. I felt REALLY bad for telling her, but it actually worked. Each time she would start to lose it, I would remind her about the child who had a hard time and wasn't allowed to fly. Her eyes would get really big and it was enough to redirect her. Mine was only 3 (just turned 4) but you could consider this. I do still feel really bad for having to resort to this, but it did help us.

 

When Allie was about 7, we went to a restaurant- she wanted to go....but when we got there her anxiety was thru the roof. I bent down and whispered that if she didn't settle down, we would have to leave. Boy, did that backfire on me! At that point she really wanted to leave...What she seemed to have heard me say is, "If you don't calm down then we CAN leave. I learned my lesson...no more ultimatums! Glad that worked for your daughter!

 

This is really weird, but Allie is stuck on this MADTV version of Conjunction Junction: Dysfunction Junction. Her favorite line (or the one she's stuck on) is "I'm doping up kids with behavioral problems!" I KNOW its horrible, but singing that line can instantly snap her back from panic to happy. I'll be using that... :blink:

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Peg- I wish you the best with your trip. It will all be okay, and will be worth it if you can get some help for your daughter. Since she has had it so long- I would push Dr L to consider something like: IVIG, then PEX, then maybe a term of monthly IVIG. Just a thought...

 

I will be thinking of you! Where are you staying? Will you be able to do any sightseeing?

 

Eileen

 

We're staying in a hotel in Gaithersburg (something like that) about 8 miles from Latimer's office (near as I can tell from the internet). I don't know if we'll get in any sightseeing. Hard to bring Allie on anything like that, but we're bringing her older sister too, who is her paid habilitation/respite worker. My hub LOVES history stuff, so sure would be nice for him to get to do some of that. Most likely scenario is somebody stays with Allie at the hotel while we go out 2 at a time to do stuff.

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Good luck on your upcoming trip! We are just outside of Bethesda and it is VERY cold here so pack warm clothes. We are to get more snow late Friday to Sat. which could affect your return flights. I am eager to hear about your appt. w/Dr. Latimer b/c our appt is next month...

 

Now about flying....I am not sure where you are flying from but we just flew cross country w/our two boys and I got two new lego sets for my boys; I had them gift wrapped and had the airline attendant give them to our boys since we flew on Christmas day. It took them most of the flight to put the new lego set together and the flight went awesome. On our connecting flight the boys got a Rubics 360 and a Rubics Twist again the new items kept them busy and entertained for hours. I don't know what your child is interested in but for us something new always helps us travel better. Also, I packed lots of approved (feingold diet) snacks for my boys so we had plenty to munch on which helped keep them regulated. We also always bought water bottles at the terminal to take on the flight and pre-purchased some approved gum so my boys ears didn't hurt on take-off and landing.

 

Well, good luck on your trip and please keep us posted on your appt!

Take care,

Jen

We're coming from Phoenix. I looked at thrift shops (I do not want to buy a new winter coat that I'll only need for a week) but cannot find a warm coat. I'll look some more tomorrow. Our return flight will not be until the 14th...so not sure what that weather will be like. We'll have lots of Allie's favorite activities and snacks along with us. I think everything will be fine once we are airborne. Cute idea, having the flight attendants give presents!

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