Son and tests

[Karlynn]

My son called today from his college's health services. He has been having shortness of breath for 2 weeks. It's the kind where he finds it difficult to take in a full breath. He had this problem back in high school and it was diagnosed as stress and he was under a great deal of stress with swimming and college apps. He claims now that he's not under any stress. They did an EKG (normal) and gave him a nebulizer dose to see if that helped. It didn't, so they ruled out asthma. They are doing a blood work up for blood sugar and thyroid. He said he told them that his mother has an artificial valve and he said the doctor just said "Your EKG is fine." I told him that until I started having arrhythmia from my prolapse, my EKG was fine too. I didn't think that there was anything on an EKG that could identify a valve problem if rhythm is normal. Am I wrong?

I'm still thinking that his issue is stress. But I'm also thinking that they really need to do an echo to check out his valves. Both my Mom and my sister had/have MVP, though neither had/have trouble with it. My Mom did die from an aortic disection at the age of 73. My card. says that it probably was genetic, but that her life-long smoking most likely did the worst damage.

My son has a follow-up appointment on Friday to get the results of his lab work. If it shows nothing, they will do a chest x-ray (not quite sure why they didn't do it today.) I'm thinking that I'd really like them to do an echo if the tests show nothing. I don't want to scare my son into panicing. He's pretty sensitive (which is why I think it's stress), but I still think it should be considered.

Any pieces of wisdom appreciated.

 

[LUVMyBirman]

Hi Karlynn,

Sorry to hear your son is not feeling well.

To air on the side of caution...try to get that echo. Espcially with multiple family members involved. Even if they find a little something....it does not mean it will progress into anything.

Take care. Try not to worry too much Mom Please keep us posted.

 

[bvdr]

Karlynn, I'm so sorry to hear your son is not feeling so well. It is so hard when health issues affect our kids. Needless to say I hope all turns out well for him. You mentioned diagnosing valve problems via an EKG. Sometimes valve problems may cause some changes in the tracings but not always. Valve problems can not be excluded based on a normal EKG.

Please keep us up to date, OK? How is your son's mom doing during this?
Your family is in my thoughts and prayers.

 

[Harpoon]

Definitely ask about an echo.

It's the best test short of a visit to the cath lab for diagnosing possible valve problems and it's a piece of cake to do. Nothing else will really indicate a valve problem short of an audible "murmor" or related symptoms like fluid retention.


Even an x-ray may not show much unless his heart is enlarged and if THAT is the case the next step out to be an echo, hands down.


Stress with his doctors that there's a family history of valve issues and that this isn't a new thing for him, that the symptoms he's been experiencing have been there for years.

 

[Rain]

stress is sneaky

stress is sneaky

Karlyn,

I?m so sorry to hear about your son. It?s so scary when you don?t know what?s wrong with them. I?d have the echo done, if I were you. With all those heart problems in the family, he probably needs one anyway.

Hopefully, you?ll find out it?s only stress. College kids can be under stress and not even really realize it. Once Eric had a knot under his ear, there was swelling and he was beginning to have headaches... of course I finally started to freak and made him see my doctor. (This is my kid who?s never known a health problem in his life.) The doctor said it was stress, that the same thing had happened to him in college. He said it was from Eric grinding his teeth at night. Of course Eric didn?t think he had stress either... But he started wearing a thing in his mouth at night during the testing weeks... and it went away. He hasn?t wore it since he graduated from college almost two years ago......... and hasn?t had a problem once.

After putting two kids through college.... my first instinct would be to blame it on stress. But being a Mom... my next instinct would be to get the echo.

Best wishes, Karlyn. Take care of yourself too.

 

[Karlynn]

How does this sound?

How does this sound?

I too think it is most likely stress, but I also sent Derek an email that he is going to give the doctor when he sees her on Friday to get lab results. I'm hoping this will spur her to get the echo done. I inserted it below.

Thanks to all for your concern. It's hard not being there to "manage" this for him. But I keep telling myself that he's a big boy and needs to take it in hand. I knew when he called yesterday that something was up. I've always been able to tell his feelings by the sound of his first Hello. Darn kids!

<<Derek's family history on my (his Mother) side of the family has important valve defect components. I have a St. Jude mechanical mitral valve which was installed as a result of severe Mitral Valve Prolapse with Regurgitation. I was diagnosed at the age of 22 through an echocardiogram and my valve was replaced at the age of 32. I now, at the age of 45, also have a diagnosis of an aortic valve leak.

Derek's maternal grandmother and maternal aunt also had/have a diagnosis of Mitral Valve Prolapse with Regurgitation. Derek's maternal grandmother died at the age of 73 from an Ascending Aortic Dissection. Neither my mother's, my sister's, or my own MVP were diagnosed through an EKG. We all presented with normal EKGs.

It is my belief that if the cause of Derek's SOB cannot be identified through EKG, blood work and chest x-ray, that an echocardiogram needs to be performed in order to rule out a valvular cause. I do not believe that, should no other cause be found, Derek should be released from care without ruling out valve defect by way of an echocardiogram. I believe this is a necessary diagnostic step, given his significant family history and given the fact that no other family member diagnosed with a valve defect presented with an abnormal EKG prior to echo diagnosis.

If I can be of any further assistance, please feel free to contact me.>>

 

[Marguerite53]

Yes.

Yes.

Good Job Mom!! I think the note was particularly appropriate. I hope he actually gives it to her! (children can be shy even at that age -- a little white coat syndrome).

I have 2 boys in college. All 3 kids have had their physician's alerted to my heart condition (BAV diagnosed at age 27 after murmur detected and echo performed. BVR due anytime with advancing stenosis). No murmur is present in any of them, and they have been told to have any doctor they ever visit to listen carefully to their heart, so I'm not pushing for echoes. If any of them would develop any symptoms that even resemble mine I would insist on an echo. You can, of course, obtain an echo anytime but would likely have to pay for it unless the doctor saw it as a necessity. I've been tempted with my youngest, my daugher, since she has experienced some dizzy spells while playing strenuous volleyball. As she will not be entering a Division 1 college next year and her level of play and practice will diminish greatly, I'm just keeping my eyes and ears open on her. Had she made a Pac10 or D1 team I most certainly would have had her evaluated had it been on my nickel or not.

Both of my boys have exhibited stress to the point of needing a doctor's look-see just to be sure there was nothing really wrong (we're talking headaches and brain MRI's, repeated fears of bumps being tumors, gastro intestinal/reflux disturbances, the list goes on). These kids put so much pressure on themselves. It seems to find a different release valve on each of them. Your son's SOB could very well be stess related or a mild panic attack. But. When all is said and done, if you are uncomfortable with that diagnosis then you need to pursue more definitive answers. What do they call it mother's intuition for anyway, if we don't actually use it!!

Keep up the good work. I would think he would feel safer and better if the obvious possibility were investigaed.

Let us know.

Marguerite

 

[tobagotwo]

Count me in on the echo, too. An EKG will not show most valve problems.

Your note is super!

Best wishes,

 

[Christina]

Normal ECG?

Normal ECG?

Karlynn,

My ECG also came back "normal" but in reality I was only 2-6 months away from sudden death. This is what the surgeon told my husband and daughter the day he replaced my Aortic valve. If I hadn't been assertive with my doctor and hadn't stood my ground he wouldn't have written the necessary HMO referral for me to see a cardiologist. That was the day when I heard that I needed surgery PRONTO and that my valve was in bad shape. Thank God I didn't let myself be intimidated by this doctor and went to see the cardiologist in time to have this life saving surgery.

Good Luck to your son.

 

[skimomck]

Karlynn,
So sorry to here what was going on with Derek. Boy can I relate to knowing something is wrong when you here their voice, I have been there too, I think its a Mom thing. Teddy throughout most of his life has had a fairly normal EKG, even though his heart was far from normal. I read your letter and thought it was perfect. I can't imagine after reading that with all your family history they wouldn't do an echo. You are in my thoughts and prayers and I hope everything is fine with Derek. Take care,
Cindy

 

[Harrybaby666]

Morning Karlynn....

Morning Karlynn....

I sure do sympathize with what your son Derek is going through...with me, they kept telling me it was anxiety, or acid reflux disease or esophogial spasms....I guess I showed them...LOL But anyway, I would most certainly demand that he have an echo done, ( I actually had to go to my lawyer and ask him if my family could sue if something happened to me...he said yes...failure to diagnose) I hope it don't get to that point with you and your son, but I will tell you it took quite a long time for them to finally tell me that I have heart failure and Cardiomyopathy and Valve Regurgitation (All 4 Valves) What I don't like either is how the doctor's try and minimize things instead of playing it cautiously, as I have always believed in preventative measures instead of letting the illness get to the point of killing a person before anything is done...I hope things get done and your son gets to feeling better soon. Harrybaby666

 

[Karlynn]

Thanks to all for all your support. Derek goes in this afternoon (with my letter to the doctor in hand hopefully) to find out the results of all the blood tests. His girlfriends father is a doctor and mother a nurse, and they said they thought it sounded like a thyroid issue. That had been my thought too. When we went to see him a few weeks ago I thought one of his eyes looked a little bulgie. So we'll see.

I told him to MAKE SURE he gives my email to the doctor and to ask for copies of his lab reports.

I'll let you all know what he finds out. But I'm still thinking it's stress.

 

[Dee]

Karlynn,

I'm sorry to hear that you and your son are going through this. I have been through a similiar situation with my daughter. I finally asked my Dr. to do an Echo on her, to ease her mind and mine too. Her heart was racing alot and also skipping beats, and she would feel like she was going to pass out. Her EKG normal, (but so was mine and 3 days later I was having OHS) . Sometimes I wonder why they even bother with the EKG's. Anyway, we did the Echo and it came back normal, so it put our minds at ease. She is a very anxious girl and can getted stressed easy, so it's easier for us to say now that it's just anxiety and not worry so much about it being her heart.

She's a senior this year and pretty stressed.....I can't imagine what she's going to be like in college

How far away is your son's college from where you are?? It's got to be hard not to be there for him!! I feel for you!! I'll be anxious to hear the results of the tests today and if they're going to do an Echo. Our Dr. had no problem ordering an Echo for my daughter, so I hope that's the way it goes for you guys too.

Hang in there!!!

 

[pegne]

My nephew started college this fall and he is also a football player. He has had problems with shortness of breath and dizziness for about the last month or two. He finally brought it to my sisters attention and after going to the ER they went to his doctor. The doctor put him on a halter monitor did and EKG and a series of other tests. The athletic dept. wanted a clean bill of health before he was to start practice again (he had a mild separation of his shoulder which kept him out a few weeks). I do not know how old your son is but my sister was told that alot of freshman (especially athletes) go through a period of stress related panic attacks. I do know how you feel though. My daughter was a softball player at DePaul University. She went for her first physical right before her freshman year and they told her they heard a murmur. I was in a panic and took her for an echo. I was always told that my problems were idiopathic (nobody knew why I had this heart defect) and they did not know if it was hereditary. I do know that this was my worst fear. Everything did turn out and she got a clean bill of health but those days were very scary for me. My thoughts are with you.

 

[ALCapshaw2]

That is a well written memo Karlynn! I hope he passes it along to his doctor.

I concur with everyone else that an echo is a good idea at this point. It will provide a MUCH BETTER picture of his 'plumbing' than an EKG. Due to it's non-invasive nature, the risks and costs should be minimal. If for no other reason, it will provide a baseline in the event that he does develop valve issues later in life.

I hope he gets a conclusive diagnosis.

'AL'

 

[Karlynn]

Well, blood tests didn't show anything. And, true to character, Derek forgot to take the letter I sent. He said the doctor said to forward it to her. He goes in Monday again, for I don't know what. I told him to take the email then, as well as forwarding it to her.

I called the boy 3 times to remind him to take the email. I knew he wouldn't.

 

[Rebecca]

Hi Karlyn,

I have a freshman away at school this year. Both my daughters had mini echo done at their high school and their hearts look fine. I no longer have to worry if they feel faint or light headed. I give your son credit for going to the college health clinic. Your letter is very well written. On Monday you may want to call the clinic and fax them your letter. Your son is most likely cover under your health insurance and it is your right to know what is going on.

Last weekend I had eight GSU equestrian team members staying with us for two shows. On Saturday evening one of the girls had been bitten by a horse. She cleaned the bite and hopefully took my advice to visit the health clinic on Monday. Late the same evening another girl had a bad headache, was vomiting and crying that she just wanted to go home (she was dehydrated). Her parents drove one and half hours to our house to get her and her truck.

 

[Karlynn]

Now I'm starting to get a bit irritated. Derek's doctor told him that men don't usually get MVP and she doesn't hear a murmur, so she doesn't think there's reason to do an echo. However, she is doing a lung scan today because one of her colleages said his symptoms could mean small blood clots in the lungs. My sister's MVP isn't heard, it was diagnosed because of SOB!!!!!!! My parents' male minister had his mitral valve replaced because he got endocarditis after dental surgery. He had no clue he had MVP and he had yearly check-ups, so a murmur was apparently not heard there either.

I still think it's stress - but it's getting very annoying that she feels there's cause for a lung scan, but not for an echo - even after knowing his family Hx.

 

[Marguerite53]

How frustrating!

How frustrating!

Karlynn. I would be frustrated too. How about this for an idea. Call that doctor's office and ask them for their fax number. Tell them that you had a note to the doctor which your son forgot to deliver and you want to fax it immediately. Then ask to have the doctor's nurse give you a call. Tell the nurse that you are faxing over the note and you want to be sure the nurse understands why this is so important to you. At that point, hopefully you will find out whether your son has given permission for them to disucuss his condition with you. Once they are 18, and are signing their own stuff, you may actually have to have him sign a form allowing them to let you in on any information. Please be sure that those forms have been signed, if need be, so that you can have closer access to the situation and be a part of the dialogue.

Frankly, if your son can't remember to take in the note, or accurately summarize what was in it to the doctor (did he get a chance to?) then perhaps he has not had enough experience yet to be given sole responsibilty for his well-being, and you should feel completely justified to assist him in this very important situation. (that's just my mom-ness talking, mind you )

Rebecca -- what's a mini-echo? Where are those available?

Keep at it, Karlynn. I'm still reading your frustration as instinctual concern, so please persist.

Good luck!

Marguerite

 

[Janine]

Karylynn- I agree with Marguerite. Try to take some control with this doctor. Even though most don't like it when we have any useful knowledge. And if you still dont get anywhere, I would get my son to the doctor you trust! If he indeed has some mvp undiscovered for years, he could now be having some pulmonary hypertension. I had shortness of breath or the sensation of not having a full breath right before I found out my mvp regurg was causing some biatrial enlargement and pulmonary hypertension. My doctors pushed it off because I was only 33. I got myself to the best surgeon, and had mvp repair. I couldn't believe how long I had been pushed aside and told dont worry, you are young. Maybe its stress. You just cant afford to take a back seat. I hope you get some answers. I pray it is stress related. Be strong!
Janine