momtocole1 Posted December 10, 2009 Report Share Posted December 10, 2009 We are taking our son with PANDAS on an airplane next week to Colorado for IVIG. He has never been on a plane before and I am nervous. Has anyone tried a sedative type of medication. I can't use the "standard" type of med. like benadryl, because it revs him up vs. calming. I have close friend that has a son who is on ativan and that calms him quite a bit. This child has cerebral palsey and siezures so I don't know if the doc would prescribe. If anyone has any tips, I would really appreciate it. Thanks, Link to comment Share on other sites More sharing options...
peglem Posted December 10, 2009 Report Share Posted December 10, 2009 We have a trip in January from Phoenix to Maryland. (to see dr. Latimer). We just saw the psychiatrist yesterday and she prescribed diazepam (valium) for the flight. Well sort of, my daughter already had an "as needed" prescription for the 5mg tablets- but this prescription amount was for when she was about 1/2 the size she is now, so we let her know that the 5 mg. wasn't gonna cut it! When my daughter goes to the dentist the dentist prescribes 30mg, 20 for before the appointment, and another ten to use in case the 20 isn't working well enough. So we know already the effects of the higher dose for her. So the psychiatrist made the new script for 10mg tablets and told us to experiment on the weekends with dosage to make sure it will be effective the day of the flight. If we lived closer, I'd drive...Anyway, talk to the doctor about it. Link to comment Share on other sites More sharing options...
Worried_Dad Posted December 10, 2009 Report Share Posted December 10, 2009 You may already be planning on this... but if you haven't tried them already, I'd make sure to "test out" the med at home before the plane trip. Benzos (valium, klonopin, ativan) are supposed to reduce anxiety, but they had the opposite effect on our son. We tried 'em all. They made him hyper, and the ativan (in the midst of exacerbation) completely put him over the edge. Dr. K told us he's seen this happen with many PANDAS children on these meds. I know the meds help some kids. It's just hard to know what will work for any one child. One psychiatrist mentioned to us that "after a brain injury, it's impossible to predict the effects of any given psych med." Best of luck. Travel is so stressful with a PANDAS child! Link to comment Share on other sites More sharing options...
peglem Posted December 10, 2009 Report Share Posted December 10, 2009 You may already be planning on this... but if you haven't tried them already, I'd make sure to "test out" the med at home before the plane trip. Benzos (valium, klonopin, ativan) are supposed to reduce anxiety, but they had the opposite effect on our son. We tried 'em all. They made him hyper, and the ativan (in the midst of exacerbation) completely put him over the edge. Dr. K told us he's seen this happen with many PANDAS children on these meds. I know the meds help some kids. It's just hard to know what will work for any one child. One psychiatrist mentioned to us that "after a brain injury, it's impossible to predict the effects of any given psych med." Best of luck. Travel is so stressful with a PANDAS child! Oh, yes! I wouldn't try this w/o any idea what the effect would be. Good point, WD! Link to comment Share on other sites More sharing options...
mom md Posted December 10, 2009 Report Share Posted December 10, 2009 Before we knew we had PANDAS we found Neurontin to be somewhat calming for our son. He would take it at night to wind him down when he had awlful insomnia. It is pretty safe and may be worth asking about. Link to comment Share on other sites More sharing options...
Kinsella Posted December 10, 2009 Report Share Posted December 10, 2009 First, I just noticed another post of yours re different brands of generics and effectiveness. I've noticed a difference, too, and your pharmacy will order the brand you prefer. You'll have to double check when you pick the prescription up to make sure it's correct, but it's worth the extra trouble. Re this topic, we tried homeopathic things first (like Rescue Remedy) with no success. Valium worked best. Also, it might seem obvious, but try to smooth the way as much as you can for him with the different employees and prepare him for situations he'll encounter. I don't know how much stranger anxiety your son might have, or how strict and busy your airport is, but some employees can be hugely stress inducing even for a jaded adult traveler! We fly a lot, and fortunately we have a small airport so the security employees don't feel the need to bark at people like they sometimes do at some hubs where they're overwhelmed. We DO very occasionally encounter unpleasant flight attendants, though. Talk to the gate employee and explain there's a medical situation so you can preboard, get him settled into a window seat if it's possible, make sure you have a favorite snack for him and get a drink when you're through security, bring along some noise-cancelling headphones and a small blanket, etc. Good luck! Link to comment Share on other sites More sharing options...
faith Posted December 10, 2009 Report Share Posted December 10, 2009 Judy, wow, you're finally on your way... This is the childrens hospital you were speaking of? How about a little visit to the airport terminal this weekend to kind of get him prepared, so that when he goes next week, he'll be familiar with the surroundings. you won't be able to go into the gate area or by the planes, but at least you can get the feel of things and show him the big planes and talk about how fun and relaxing it will be........ Good luck and blessings my friend,..... Faith Link to comment Share on other sites More sharing options...
peglem Posted December 10, 2009 Report Share Posted December 10, 2009 U.S. Department of Transportation Reminder The Toll Free Hotline for air travelers with disabilities has been in operation since August 2002 and is available for callers from 7 a.m. to 11 p.m. Eastern Time, seven days a week. It is currently not being fully utilized. The Hotline serves two main purposes: (1) education, and (2) assistance in resolving disability-related air travel problems. * Many air travelers with disabilities are not aware of their rights and the Hotline, in part, exists as an educational service to inform air travelers with disabilities about their rights under the Air Carrier Access Act and the Department's implementing regulations 14 CFR Part 382 (Part 382). Hotline operators are well versed in the ACAA and Part 382 and can provide callers with on the spot general information about the rights of air travelers with disabilities. The Hotline operators also respond to requests for printed consumer information about air travel rights for people with disabilities. * The Hotline can also assist air travelers with disabilities in resolving real time or upcoming issues with air carriers. The purpose of "real-time" assistance is to facilitate airline compliance with DOT's rules by suggesting to the passenger and the airline involved alternative customer-service solutions to the problem. The airline remains responsible for deciding what action will be taken to resolve the issue in accordance with the ACAA and Part 382. Generally, if a caller has a real time problem or an upcoming issue with an air carrier, a Hotline Duty Officer will contact that air carrier and attempt to resolve the issue. For example, there have been a number of incidents in which Hotline Duty Officers have contacted air carriers and convinced them to accept service animals and electric wheelchairs on board flights, to stow folding wheelchairs in the cabin, and to provide requested wheelchair assistance. Air travelers who want information about the rights of persons with disabilities in air travel or who experience disability-related air travel service problems may call the Hotline to obtain assistance at: 1-800-778-4838 (voice) or 1-800-455-9880 (TTY). I called these people this morning and they were very nice and helpful! I explained that my child has an anxiety disorder, and although she would be on a sedative, we still were not certain that she would not freak out mid flight. One of the things they said (because my daughter is apt to look drunk and disoriented w/ the sedative) is to get a note from her doctor stating that she will be able to complete the flight without needing medical intervention. Apparently the airlines can use their own discretion in deciding if a person is unfit for travel, and if they feel a traveler may become a medical emergency in air, they can refuse to transport. I'm not sure what kind of a reaction you get from your son when he is distressed, or how your son may appear to others when sedated- but this might be something you want to do. My biggest fear is that my daughter will freak out and they'll land at the nearest airport and put us off the plane... Link to comment Share on other sites More sharing options...
momtocole1 Posted December 10, 2009 Author Report Share Posted December 10, 2009 Thanks Faith, We are planning to take him to the airport and other things to get him ready... Thanks for the sweet note. I can't wait to get this done! Love, Judy... Judy,wow, you're finally on your way... This is the childrens hospital you were speaking of? How about a little visit to the airport terminal this weekend to kind of get him prepared, so that when he goes next week, he'll be familiar with the surroundings. you won't be able to go into the gate area or by the planes, but at least you can get the feel of things and show him the big planes and talk about how fun and relaxing it will be........ Good luck and blessings my friend,..... Faith Link to comment Share on other sites More sharing options...
momtocole1 Posted December 11, 2009 Author Report Share Posted December 11, 2009 Dear Peglem, Thank you so much for forwarding this. You may have mentioned it elsewhere, but what have you been using to sedate your daughter on the airline? Thanks, U.S. Department of Transportation Reminder The Toll Free Hotline for air travelers with disabilities has been in operation since August 2002 and is available for callers from 7 a.m. to 11 p.m. Eastern Time, seven days a week. It is currently not being fully utilized. The Hotline serves two main purposes: (1) education, and (2) assistance in resolving disability-related air travel problems. * Many air travelers with disabilities are not aware of their rights and the Hotline, in part, exists as an educational service to inform air travelers with disabilities about their rights under the Air Carrier Access Act and the Department's implementing regulations 14 CFR Part 382 (Part 382). Hotline operators are well versed in the ACAA and Part 382 and can provide callers with on the spot general information about the rights of air travelers with disabilities. The Hotline operators also respond to requests for printed consumer information about air travel rights for people with disabilities. * The Hotline can also assist air travelers with disabilities in resolving real time or upcoming issues with air carriers. The purpose of "real-time" assistance is to facilitate airline compliance with DOT's rules by suggesting to the passenger and the airline involved alternative customer-service solutions to the problem. The airline remains responsible for deciding what action will be taken to resolve the issue in accordance with the ACAA and Part 382. Generally, if a caller has a real time problem or an upcoming issue with an air carrier, a Hotline Duty Officer will contact that air carrier and attempt to resolve the issue. For example, there have been a number of incidents in which Hotline Duty Officers have contacted air carriers and convinced them to accept service animals and electric wheelchairs on board flights, to stow folding wheelchairs in the cabin, and to provide requested wheelchair assistance. Air travelers who want information about the rights of persons with disabilities in air travel or who experience disability-related air travel service problems may call the Hotline to obtain assistance at: 1-800-778-4838 (voice) or 1-800-455-9880 (TTY). I called these people this morning and they were very nice and helpful! I explained that my child has an anxiety disorder, and although she would be on a sedative, we still were not certain that she would not freak out mid flight. One of the things they said (because my daughter is apt to look drunk and disoriented w/ the sedative) is to get a note from her doctor stating that she will be able to complete the flight without needing medical intervention. Apparently the airlines can use their own discretion in deciding if a person is unfit for travel, and if they feel a traveler may become a medical emergency in air, they can refuse to transport. I'm not sure what kind of a reaction you get from your son when he is distressed, or how your son may appear to others when sedated- but this might be something you want to do. My biggest fear is that my daughter will freak out and they'll land at the nearest airport and put us off the plane... Link to comment Share on other sites More sharing options...
peglem Posted December 11, 2009 Report Share Posted December 11, 2009 Dear Peglem, Thank you so much for forwarding this. You may have mentioned it elsewhere, but what have you been using to sedate your daughter on the airline? We've never flown before, but what we are going to use is diazepam, which we have used for dental appointments and presurgery (T&A). So we know somewhat, what dose she can tolerate and how high we can go. She also has had an "as needed" script for this for several years now, only at a lower dose. I believe diazepam is the generic of valium. Link to comment Share on other sites More sharing options...
momtocole1 Posted December 15, 2009 Author Report Share Posted December 15, 2009 Dear Peglem, Does the valium calm her? Do you notice that it works to help her be less reactive? Can you share her weight and the doses you have used? Thanks, Judy... Dear Peglem, Thank you so much for forwarding this. You may have mentioned it elsewhere, but what have you been using to sedate your daughter on the airline? We've never flown before, but what we are going to use is diazepam, which we have used for dental appointments and presurgery (T&A). So we know somewhat, what dose she can tolerate and how high we can go. She also has had an "as needed" script for this for several years now, only at a lower dose. I believe diazepam is the generic of valium. Link to comment Share on other sites More sharing options...
peglem Posted December 15, 2009 Report Share Posted December 15, 2009 Dear Peglem, Does the valium calm her? Do you notice that it works to help her be less reactive? Can you share her weight and the doses you have used? Thanks, Judy... Allie weighs right @ 100 lbs. Since @ 60 lbs we have been using 5mg on an "as needed" basis. So when she's having a lot of problems, or we're taking her into a stressful situation, we've been giving her that. Been using 10 mg for blood draws (which still are quite the ordeal, but impossible w/o the valium). When she has dental work, the dentist prescribes 30mg- 20 before the appointment, and keep ten in reserve in case we see it wearing off a little and she needs a booster. When she had T&A surgery, they gave her 15, for starters, then another 15 when that didn't seem to slow her down- they expected it to make her sleepy enough that they could get the IV in...it didn't, but made her muscles sloppy enough that she couldn't fight that hard. The psychiatrist, last week, bumped her "as needed" dose up to 10 mg. What she suggested (based on our sharing previous experiences) for the flight, was to start at 20mg, give 10 more every 2 hours. But she did say to experiment with it before the flight so that we would have a better idea what to expect. And yes, it does calm her, but still, sometimes she gets so much adrenaline that it kinda breaks through, especially at the lower doses. Link to comment Share on other sites More sharing options...
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