Pots Crash For 13th Birthday

[Kyler]

I just need to vent and maybe get some pointers for my poor baby boy. He had 3 good months and now he is not doing so well. He started growing again - he is 5'11.7 now - He turned 13 at the end of January and it was all downhill from there - we had to postpone his bd party due to copius amts. of snow and when his party came around he couldn't even eat his bd cake because he was so nauseated - I cried9not in front of him). It's not fair. He is missing his teenage years because of this stupid, annoying, REDICULOUS,#!$@&%* illness!!!!!!! I'm so sad for him. He has every POTS symptom except for migraines THANK GOD - he just has annoying position change headaches every day but not severe. The chest pain and GI symtoms have been the most difficult to deal with.

We are supposed to fly from VA to CA for his spring break and I am so scared that he will get worse and feel bad but he is so excited to go. I read several old posts on flying and it scared me even more. It's a 7 hr flight with 1 stop and no plane change. We already told him that he will need to wear his pressure hose and stay in a wheel chair thru the airport and he is very unhappy about that - he is afraid that people will stare at him and say things when he stands up and walks. He was doing so well 3 weeks ago and now he can't even do a wal mart trip without several breaks and then he is sore the next day. We already do copious amts. of salt and fluid.

Flying Questions : Will a doctors note allow him to carry gatorade thru airport security? How can we get extra oxygen on the plane that some people talked about in the old posts? What works best for you (people with POTS) who have flown to reduce your symptoms during and after flying?

Am I a careless Mom for not cancelling our flight plans even though Kyler has recently taken a downward turn? Should I cancel our trip or should I let him be a kid even though he might get sicker? ( he is very excited to see my sister and to go to lego land - it would crush him if we don't go)

He almost passed out in the shower today. He got severe chest pain and he said that he felt like someone sucked the life out of him - he had to lay down for 30 minutes after and then asked to go to bed very early. He was very suprised and he said that he is afraid to take a shower again (not just in a boy way like before - lol). This has never happened before. His doctor is trying to get him feeling better but it's not working. He increased his midodrine to 10mg every 2 hours up to 6/day. His hands and feet turn barney purple in about 30 seconds whe he stands - the pooling has gotten a little bit better with the midpdrine. I can't figure out how he stays upright when I see his purpleness. I feel like he is getting closer to sycope. I'm so scared for him. I just want to make it stop:(

Thank you for listening and for your advice in advance.

Sincerely, Serena

[Lenna]

I'm so sorry about everything that is happening to your son. My son is now 18 and it breaks my heart that his teenage/high school years have been lost and can never be regained, so I understand how you feel.

But on to a practical solution...instead of trying to get permission to bring Gatorade on the plane, get some Nuun. Nuun comes in tablets that dissolve when dropped into water, so you can get bottled water from the flight attendant and then just drop a tablet into it. It's such a handy thing to have when you travel, and it has about twice as much sodium as gatorade. My son like the lemon/lime flavor. The challenge will be finding a place to buy it. You can order it online http://www.nuun.com. They also sell it at REI. I think there are some REI stores in VA.

Good luck and have a great trip!

Lenna

[dakota]

I'm sorry your son has been having a rough time.

I don't have any ideas about the airplane flight, although Lenna's suggestion is good. I have been wondering the same for my daughter, even though a flight is not in the near future.

My daughter (nearly 16) has the same issues with blood pooling and trouble in the shower. She didn't want to use a shower chair until the day she actually fainted, thankfully it was just outside the shower and not in it. Now she uses a shower chair and this has seemed to help a lot. She also leaves the door open when she showers so that it doesn't get so hot in the room. I think the combination of standing and heat can be just too much.

I hope it goes well for your son and that you all have a great time in California!!

[Christy_D]

I feel your pain. My son turned 15 in February, and spent the whole day in bed, practically the whole month. We are in Cleveland right now(3rd trip) getting more tests done. His main symptoms are mainly GI , always nauseated. It is so unfair that they loose their childhood. My son has not been to school in a year, and this should be his freshman year.

Hopefully, these tests help us with something. Theses doctors have been great and are always trying to help, this helps us stay positive. My son also just grew again and seems to be worse. He is now 6'1". They keep teasing him in the hospital, since we go to the pediatric units, his feet hang off the bed. They said he has the record this month for being the biggest.

Keep your head up, just keep trying to get him some relief.