Wednesday, January 27, 2016

What's a Mom to do?

When you have a young "adult," there are certain things you have to let go.  Prophy is one thing.  My 19 year old, Julian, believes prophy is not necessary since he always infuses when he feels something coming on.  I finally had to let that go and accept it.

He asked me to specifically buy him a leather Medic Alert cuff.  I did.  And where does it live, next to his computer.  This is one that I'm not letting go of.  I keep telling him (without too much judgment) that I worry about the other drivers on the road.  One wreck when he has no factor in his system....I don't even want to imagine.

Last Thursday he came home with both knees bothering him.  He said he was going upstairs to treat.  I went to check on him and he looked at me and said, "I don't have any factor."  I can't believe I didn't go ballistic.  Never mind that since December I was dropping hints to remind him that he needed to order before insurance changed.  And here he was without a drop.

We called his pharmacist and she stayed until 8 pm trying to get his factor through.  He got his bleed doses the next day.  I explained to him all of the steps that were involved to get his factor (with new insurance changes) and he actually teared up and said, "Tina is freaking awesome."

I don't think running out of factor will happen again because he saw that the worst case scenario was having to go to the emergency room.

Sometimes you have to let your kids made their own decisions and suffer the consequences.  Some may think I was pretty harsh because he could have had a major bleed.  It would have meant a trip to the emergency room, but this was one that he had to learn on his own.

What can we do for our teens and young adults?

1. They need to order their own factor.  Some pharmacists use email and texts if you child is busy at school.  Encourage them to take responsibility.

2.  They need to keep an insurance card with them.  Explain copays and deductibles.  You'll have to do it over and over, but our kids need to know about insurance now.  It's not like when we learned about insurance as adults or even when our clotting challenged kids came into the world.

3.  When they are at the doctor's office, they need to fill out their own forms.  Have them be responsible for filling out documentation.

4.  Make sure they know what product they take and their dosage (Amicar included).

5.  Do they know the difference between their homecare and pharmaceutical companies?

6.  Make sure they have the names and numbers for their HTC, homecare and nurses in their phones.

I am sure there are many other things, but these are some of the basics.

Transitioning is tough, but we need to help our kids be ready to take control of the health.

What other ideas do you have for transitioning?

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