Scaring the teenager, or Don't you dare die on me.

Miscellaneous and Personal Stuff I Must Share
1

My daughter, who’s fifteen, had her annual physical last week, and informed the doctor that she still has regular dizzy spells, pretty much every morning when she gets up, and a few other times. The doctor had diagnosed this as orthostatic hypotension, and had said that she would probably grow out of it. She also said that dehydration was a contributing factor and that daughter should make sure she was getting enough to drink. The kid had not told me that this was still going on this much.

Anyway, discussion ensued as to what to do about it, and we had pretty much decided that medication wasn’t the way to go right now, when I brought up the question of Marfan’s Syndrome. I felt kind of foolish, kind of like one of those classic hypochondriac things, “Doctor, I read about this disease and I’m sure I have it,” but I asked anyway. My mother had most of the physical characteristics of Marfan’s, and my daughter has some of them, sort of, so I figured it was better to look foolish than to be sorry later.

Well, the doctor took it seriously enough to check some things on daughter and ask some more questions, and then she had an EKG done there in the office. Doc also ordered an echocardiogram for next week. She doesn’t seem to think we really need to worry, but she does think it would be better to check than not.

Well, the big problem now is that my daughter came home and told her boyfriend that evening all about the adventures of her day. Then she had to explain what the tests might be looking for. And ever since then she has had to reassure him often that she’s not going to die. This boy has lost three family members in the past few years, two of them by suicide, and he’s terrified at the thought of losing her, too. I really didn’t mean to do that to him. If I’d been thinking, I probably would have suggested that she make less of the situation, or not tell him much at all. There’s that hindsight thing again.

The thing is, now I have one terrified boy to consider, and one girl who needs a little more reassurance than she might otherwise have needed. I’d really appreciate it if you could spare a few good thoughts for the two of them. I’ll let you know how things come out.

2

Damn, that sounds rough. Good luck.

3

I really hope everything works out and I will have your daughter and her boyfriend in my thoughts.

4

I worked in a pediatric cardiology office for 6 years as the division coordinator; we covered not only young children but also adolescents or adults who had congenital heart defects, or damage from childhood diseases like rheumatic fever. I am not a doctor or nurse, but one of our physicians there was a specialist in Marfan’s syndrome, and I can say that not only did none of our Marfan’s syndrome patients die during my time there, but also only a very few of any of our regular patients died. My impression of the syndrome was that it was certainly very survivable and not that bad as heart ailments go.

I looked up the syndrome at the Mayo Clinic website. The relevant quote for this instance is probably, “With early diagnosis and appropriate management, the life expectancy for a person with Marfan syndrome is normal.”

People often suspect that Abraham Lincoln was one person who had this disease, and until his assassination he lived an active life. Best of luck on the testing, and with everyone’s emotions.

5

I’m offering a little prayer for the two teens. Ferret Herder’s post sounds very reassuring.

6

Thank you all for your encouragement. I have done some reading about Marfan’s and I’m not really worried about this. My biggest worry is getting the kids not to be too scared. I feel badly that I didn’t think sooner about the boy’s reaction, because he is kind of insecure (with some good reason). I’m sorry that he has to deal with this, and I don’t want him to make her worry. We’ll just keep telling them the truth, I guess, and being encouraging.

7

Go hug the boy. He will be tremendously embarrassed and will forget to worry for a minute or two.

8

Hubby DeathLlama has been diagnosed with “probable Marfan’s syndrome.” It isn’t definitive simply because the only two diagnosing characteristics of the disease–dislocated eye lenses and/or a dilating aorta–are not present. He has multiple secondary characteristics–in fact, physically, he’s an archetype of what to look for in physical features–but, most fortunately, none of the scary (read: lethal) characteristics.

It was five years ago that we were first looking into it, and it was in fact a very, very scary time. It was mostly terrifying because we had no idea what condition his aorta was in, and whether he could essentially drop dead. His echo came out normal, though, and has every year for the last 5.

Just letting you know (and to pass on to the others) that we’ve been there, and in some respects will always be there. It is very survivable; hubby leads a completely normal life. Let her friend know that this is increasingly becoming the case with Marfan patients. :slight_smile:

9

Ruffian,
It was your post about it that first made me aware of the existence of Marfan’s. I read the list you posted and most of them described my mom. She never had the bad parts of it, or maybe I should say, the dangerous parts, and I never brought it up to her, because she was about 80 at the time. Had other things to worry about.

The four of her children and all but this one of her grands don’t show any signs. I will pass on this reassurance. Thank you.

10

One of my relatives has Marfan’s syndrome and I have yet to hear of any medical difficulty he’s had. He’s either my age or about 20 years older (I don’t remember if it’s a cousin or an uncle). From what I know it is nothing overly difficult to deal with and certainly nothing (again, from what I know) that will cause death even if you don’t keep it totally under wraps.

Then there is the chance (at this point very real, I think) that there is nothing to worry about re: Marfan’s Syndrome.

11

Just thought I’d say thanks again for the help and good thoughts. And let you all know that the echocardiogram results were totally normal. So, everybody gets to breathe a sigh of relief.

12

That’s good to hear. :slight_smile: I do have to say that yes, that kind of passing out did seem to be common among our teenage patients when I worked in a pediatric cardiology office, but it’s a good thing you got it checked out.

13

Wonderful to hear, thirdwarning! Did they say when the echo will be repeated? They originally told DeathLlama to come back in 5 years, but a lot can happen in that time so he goes yearly.

I know how scary it was waiting for that first echocardiogram…hopefully that will remain the worst part of Marfans for your daughter as well. :slight_smile:

14

They didn’t say anything about repeating it. I will ask next time she has a physical. We’re just glad this one came out okay. At least I don’t have to tell her she can’t play any of her sports any more.
Thanks again for your help.