Advice for flying?

[peglem]

So we have an appointment with Dr. Latimer in January. After checking out all the transportation options, flying really seems like the only option. The trip is 2500 miles one way! The psychiatrist has prescribed valium for sedation, but we are still afraid of "breakthrough" panic attacks-fight or flight episodes. We do not want a nationally advertised flight incident! Any ideas for this? Anyone done this?

[faith]

peg,

yes.... Bloody Mary's work very well for me..........

 

 

 

j/k, sorry, can't think of anything except distractons, like cd player, reading/writing, etc., maybe some benedryl beforehand if she can take it.

 

good luck,

Faith

[peglem]

Benedril would almost guarantee a meltdown! A bloody mary would be great for me!

 

I've talked with the very nice people at the US Dept. of Transportation, disability rights unit- They said i should bring a note from her physician stating that she is capable of completing the flight w/o medical assistance and explaining the effects of the sedative.

[dcmom]

peg- I don't envy you the trip- but am so glad you will see Dr L. Are you hoping to have plasma pheresis done while you are here? Did Andrea arrange everything? The pheresis team typically does an exam and lots of bloodwork, prior to the patient being able to make a "reservation" at the picu. Do you know for sure they are fast tracking all this for you. Would it be possible to have the exam and bloodwork done for you by a local HemOnc doctor so you could skip that step while here? How old is your daughter- is she full grown? The kids need to have a central line done for pex, but I think the attending mentioned to me that adults can typically have it done through a normal large catheter. I would inquire about that- it would eliminate that big first step, and the need for sedation.

 

Eileen

[peglem]

I talked to Faith (I think that was her name, not Andrea anyway) and asked if we would be able to do plasmapheresis during the same trip, if Dr. L recommended that treatment. She said we'd have to return for that because arrangements would have to be made at the treating facility. But, my daughter's ped. is contacting Latimer to find out what bloodwork she wants done in advance so we can have that all done before we get there. The local immunologist said he will do IVIG for us on Dr. Latimer's recommendation, and he also said he thought my pediatrician has people he can work with to get the plasmapheresis done locally as well. I haven't talked to the pediatrician yet this week, so not sure if that's true or not. (the immuno had been discussing with the ped, so possible!)

 

I don't know anything about "fast tracking" this, and the person i spoke with at Dr. L's office seemed to not be especially appreciative of the distance we are traveling just to get there for this...but maybe I read her wrong. I don't want to call and bug them again with questions, but I do really need to know- if we're making airplane reservations, it'll be really hard to change plans once that happens.

[dcmom]

Peg- Here are some random thoughts- I think you should try to push to have it done while you are here- another trip is so much $ and stress.

 

Andrea at Dr Latimer's is really nice- I would talk with her. Maybe you should try to have a phone consult with Dr Latimer to give her your story. She is very compassionate (albeit very busy). Fax her any blood tests, including Cunningham's prior to the phone consult. Have your ped talk to her or send her a letter saying that he recommends pex. At the same time contact the Pediatric Hem Onc group at Georgetown University Hospital. Tell them the situation, and that you would like to have the bloodwork done locally if possible. Don't give up, be extremely nice, but keep calling until you get what you need. Andrea schedules the pex procedures, one patient per week, usually Mondays or Tuesdays. Maybe have a Friday appt- and ask her if she could book you for that following week at the hospital.

 

The other possibility- any top notch hospital that does organ transplants on kids will have an experienced pheresis team. They may not do it for pandas, but they do the procedure. See if you can find anything locally.

 

I am exhausted just writing this

[peglem]

Peg- Here are some random thoughts- I think you should try to push to have it done while you are here- another trip is so much $ and stress.

 

Andrea at Dr Latimer's is really nice- I would talk with her. Maybe you should try to have a phone consult with Dr Latimer to give her your story. She is very compassionate (albeit very busy). Fax her any blood tests, including Cunningham's prior to the phone consult. Have your ped talk to her or send her a letter saying that he recommends pex. At the same time contact the Pediatric Hem Onc group at Georgetown University Hospital. Tell them the situation, and that you would like to have the bloodwork done locally if possible. Don't give up, be extremely nice, but keep calling until you get what you need. Andrea schedules the pex procedures, one patient per week, usually Mondays or Tuesdays. Maybe have a Friday appt- and ask her if she could book you for that following week at the hospital.

 

The other possibility- any top notch hospital that does organ transplants on kids will have an experienced pheresis team. They may not do it for pandas, but they do the procedure. See if you can find anything locally.

 

I am exhausted just writing this

Thanks, part of my problem is that I really don't know how things work and what can be done. Both Allie's pediatrician and the referring rheumatologist have spoken to Dr. Latimer, particularly about her Cunningham results. Per the rheumatologist, she found my daughter's score to be "very impressive". My daughter's pediatrician is completely cooperative- well he goes beyond cooperative, so that helps. But, I don't see how I can insist that they schedule a procedure before Dr. Latimer has examined my daughter to determine if she needs it or not.

Faith told me that Dr. Latimer no longer does phone consults because they became too much to deal with. I think she may make an exception for Allie's doctor, because of the high CamK - 242%, which actually puts my daughter in the SC range.

[mom md]

I would have your doctor there see if they can do plasmaphoresis in your PICU. My PICU offered to do it here in Charlotte but I felt it might be better at Georgetown because getting there was not a huge deal. Often PICUs will treat local sickle cell kids one day a week with plasmaphoresis . The local red cross often supplies the machine and team. To do it three days in a row is not a huge deal it just means the team shows up three days in a row. My son weighs 62 lbs and the whole procedure only took 90 minutes a day. I would trust any plasmaphoresis team that does it every day if my child was in the PICU. Also ask if your hospital will accept an order form Dr. Latimer which some will do if the intensivist is the admitting doctor. Then the two can talk on the phone and make it happen. Also, that way if you need follow-up IVIG the local hospital is familiar with her and your case. My local peds hem/onc doctors were willing to do IVIG here if Latimer faxed an order. Just a thought but definitely worth investigating.

[Rebecca_H]

Hey.

 

I suffered from panic attacks for many, many years. I was also afraid of flying, like you talk about in your message.

 

I would like to recommend a natural cure for anxiety and panic attacks that I myself used to overcome panic.

 

So if you want to check it out, just go to this website.

 

Natural cure for panic attacks and anxiety

 

I know it will help you feel better...

 

Good luck, and I wish you all the best.

 

/Rebecca