Musings of a Marfan Mom

November 7, 2013
by marfmom
1 Comment

To Medical Professionals: A Plea for Honesty

Today’s post is directed towards all you fabulous pediatric medical professionals. We see a lot of you. We place our kids’ health in your knowledge and skill. Our kids trust you.

Yesterday, I took J to see a new doctor. He’s had a problem with his pinky toe since July and we were learning whether laser surgery would be an appropriate solution. The doctor opted to go another round of a topical acidic treatment, combined with some meds at home. This was all fine, until he got ready to apply the medication and promised J it wouldn’t hurt. He applied it to an open wound, instead of just to dead skin. J screamed for an hour straight.

How do you think J is going to act towards that doctor next time we see him? How willing do you think he’ll be to let us apply the at-home med?

I don’t understand the doctors and nurses who tell a kid the shot/IV/etc. won’t hurt. It might keep the child calm in the immediate, but it erodes trust in the long-term. This is a particular issue for kids with chronic illnesses, who will need many medical procedures over their lives. Not all medical procedures are going to be pain-free, and that is a sad part of life.

Even young children remember what happens at doctor appointments. Before J could talk, anytime I said we were going to the doctor he would point to his arm and make a sad sound to ask if he was getting a shot. If he walks into a room that looks like an OR, he flips out. He’s not going to forget what happened yesterday.

There are many aspects of his environment that my son doesn’t get to control. I want him to feel as in-control as he can when it comes to medical appointments. No, he doesn’t get to choose which procedures happen, but it’s reasonable for him to expect to know what’s going to happen to him and to be given tools to cope with that. Yep, J cries when he knows he’s going to get a shot, and we tell him where he’ll get the pinch. He also knows that he’ll get a sticker after, and that he can squeeze my hand during. I may not tell him far in advance, but I do tell him when he can expect a shot, so that he knows I’m honest when I tell him he’s NOT getting one, too, and doesn’t have to spend the entire visit worried something is going to hurt.

But medical professionals, I need your help too. I may not always be around when something bad happens, or I may not know what to expect from a given test or medication. My kids need to know they can count on you to listen and respect them when they need help. That trusting relationship saves lives down the road, and it starts now, when they’re little.

Thank you.

November 1, 2013
by marfmom
0 comments

Friday Favorites

I’m sorry this is late! I left town for a meeting early this morning and completely forgot to set it to publish before I left and this is the first chance I’ve had to sit down at a computer today. Come on over and link up a favorite post that you wrote this week! Amy and/or I will come over and comment on each of your posts. I hope that you’ll spread the love and visit the blog or two above yours too.


Friday Favorites with Musings of a Marfan Mom & Anktangle

October 28, 2013
by marfmom
6 Comments

The Double-Edged Sword

As a young child, maybe 6 or 7 years old, I used to wake in the middle of the night crying with terrible ankle pain. Read any Marfan forum, and you’ll see parents posting about their children suffering the same ailment. Mom would rub my ankle, put on a very heavy sock or two, and sometimes give me ibprofen. Eventually the pain happened less frequently, though sometimes as an adult – especially if it gets colder suddenly – I’ll wake up and need to grab the special socks out of my drawer.

J, almost 3, has been waking up recently with those familiar tears.

After J was born, I remember writing that I didn’t expect his diagnosis to really impact him (or us) until he was older…maybe 5 or so and going to kindergarden, where we’d have to make decisions about gym class and, perhaps, medication. But here we are, not yet 3, and Marfan has already touched him in so many ways: sleep apnea & oxygen, RSV, asthma, feeding issues, speech problems, motor delays. His first echo after starting medication is coming up in a little over a week. And, by and large, these are all Marfan problems that I have no experience with. I didn’t predict them.

But the other night, when I scooped him from bed to cuddle in the rocking chair while I massaged his ankle…that I knew. While we rocked I whispered to him that I understood. And I realized that although simple, this is one of what will be many manifestations of what it means to have made the decision to open ourselves up to having a child with Marfan…the pain of truly knowing his pain, and the comfort in also knowing the remedy. The double edged sword of being able to say “I’ve been there.”

older days