Summer Camp and Anticoagulation - Anything I'm Forgetting?

[TLangston]

Hi all, Our beautiful 17 year old daughter has been on Coumadin for a little over a year now after her aortic valve was replaced with a mechanical one. Perhaps I'm being a bit overprotective, but it's time for her to go to summer camp and I want to make sure I'm covering all my bases. Said daughter is relatively knowledgeable on the precautions surrounding her meds as well as which foods tend to have Vitamin K.

I sent along a medical note to the camp directors stating that she is on Coumadin, that any injuries beyond the very minor might warrant medical attention (and to call us if there is any head or eye injury, no matter how minor), Vitamin K foods are strictly controlled, and no Advil/Aleve, only Tylenol for minor pain. I also asked that if she has any chest pain, we should be called as well as 911 (due to the slight risk of aortic dissection), we should be called if she has any unexplained bruising, or any symptoms of illness. We're sending a list of vitamin K content of foods for her reference and asking the Camp to please not make her eat any particular foods especially Vitamin K ones.

I'm planning to have a one-on-one conversation with the camp nurse about all the particulars; is there anything I'm forgetting, you guys? This is her first time away for any length of time since her heart surgery, so I have exactly no practice at this and of course am a little more paranoid than usual. And yes I realize that soon she will be a legal adult and I probably should reduce the tendency to over-protect her like this - but that hasn't happened yet - baby steps...

 

[geebee]

You are her parent and would worry about her - heart valve or not. It sounds like you have covered all bases (maybe a bit too much on some ends but, again, parental worry).

I would hate to have you make any changes since she seems to be used to things and she doesn't need to worry about alterations for camp. However, the vitamin K thing does bother me. I am saddened that the information regarding avoidance of vitamin K is still so prevalent. I do not avoid any foods. I eat what I want and try not to gorge on anything. This type of eating pattern simply allows my coumadin level to be based on my lifestyle not my lifestyle based on coumadin. You might want to think about this when she is back from camp.

Just tell her to have fun - everything else will fall into place.

 

[terodac]

Good web site to use is ptinr.com/data/pages/vkregistry.aspx, you can look up any food. Ptinr.com look to the bottom left, vitamin k register. And you are a good mother!!

 

[Bina]

It sounds like you have covered all the bases and I would do the same.
My daughter got severe asthma attacks at a very young age, and I knew where all the hospitals were, and I always had her meds ready with lots of instructions. This is part of being a protective Mom.
Hopefully your daughter will have a good time at camp and I know you will worry anyway.

 

[briansmom]

I just wanted to say that I totally understand. My son had his first surgery at 16. He has major health issues and really doesn't listen to me very much so he does a lot of things I'd rather he didn't. My son home tests and manages his coumadin pretty much by himself. He also drives an off-road car and rides a mini-bike off road. (he is not healthy enough to ride his big off-road bike anymore). Letting go of a child who has been sick is absolutely brutal and I won't pretend that I've mastered it. I will say that I think that camp will be pretty safe and you have covered all your bases well. I also would encourage you not to worry about the vitamin K, but it may come in handy if she doesn't like vegetables.

 

[Ross]

People people people, dose the diet, don't diet the dose. Throw those Vit K charts out the window. Eat like you always have, including all the green veggies, and adjust the dose to suit that diet. This Vit K thing has gotten beyond ridiculous. So long as your semi consistent in the amount of greens you eat weekly, it is not an issue. Diet plays a very small, almost insignificant role, in INR management.

 

[AgilityDog]

One of these days we'll have to come up with a "Dose the Diet, Don't Diet the Dose" t-shirt!

To go along with the "I Love My Rat Poison" ones we should also have!

 

[RI Mom]

It sounds to me as if you have covered all of your bases very well. Hand her a cell phone (I'm sure she already has one) and tell her to call so that you will be able to hear that she is fine and having a great time. I hope she has tons of fun and makes memories that she'll treasure for life.

 

[TLangston]

Hi All, Thanks for your replies! I just talked to the on-site camp nurse, a critical care RN, by phone at her home number. I'm a LOT less worried knowing someone with that kind of knowledge is there.

Plus, I know it's time to start accepting that our "little" girl is growing up and is basically an adult at 17-1/2. She just rolls her eyes at any expression of worry from us parental types.

And in reply to the diet/dose issue, aren't consistent diet and exercise habits recommended with Coumadin? (of course we don't know anyone else who uses Coumadin so we have nothing to compare to) We don't have a home tester, so her INR is only tested monthly.

The routine with 2-3 weekly Vitamin K food servings plus fastidiously consistent exercise habits have kept our kid's dosage the same for months (easy to track) and her INR unbelievably consistent. What are other people doing differently, and how does it work for you with a more varied routine? (we can't afford a home tester so that's out for us)

 

[Bina]

I remember when my daughter was 17 and I was watching her drive down the road in my car....it is worrisome and rewarding at the same time. You will be able to let go of her inch by inch. It's hard but it's good for both of you.

If your daughter has her diet and dosing all figured out, that is excellent. In time, she may feel more comfortable to relax the vitamin K concerns, and that will be fine too.
Immediately post op I was very Vitamin K conscious, but I was perfectly in range every month.
Now that I have my own monitor, I don't worry so much about the Vitamin K in everything and have a more relaxed attitude towards food and INR. My INR has never been too low, and that is most important.
The occasional INR of 4.1 is no big deal either.....pass the broccoli.

 

[catwoman]

The routine with 2-3 weekly Vitamin K food servings plus fastidiously consistent exercise habits have kept our kid's dosage the same for months (easy to track) and her INR unbelievably consistent. What are other people doing differently, and how does it work for you with a more varied routine? (we can't afford a home tester so that's out for us)

Will your daughter be going off to college in another year? If so, you may want to check your insurance plan for coverage on a home tester. Some insurance carriers cover rental of DME over outright purchase.

My routine is not as rigid as what I see described for your daughter.
I tested yesterday (Aug. 6) (brought my INRatio to work) and it was 3.2, same as my last test (July 24). I didn't have any green stuff yesterday. I had lots of green stuff last Sunday, again on Monday, a little on Tuesday. None Wednesday or yesterday. I will have something green today, either at lunch or dinner. I am flying to Kansas City today to train at a cat show, and a group is having a special dinner at an Italian restaurant tomorrow night. I know I can get a salad there. Most convention centers' concession stands have sucky menus -- mostly greasy burgers, hotdogs, horrible nachos, and that's about it. So I can't count on a good lunch tomorrow or Sunday.
My exercise this weekend? Hoisting a bunch of heavy longhair cats, and some of them may be up to 25 pounds.

Having my own tester is a godsend, what with vagaries I come across on weekends at cat shows. As your daughter grows up and leaves the nest, whether off to college or off on her own when she gets a job, she will start to relax her regimen.

Good luck!