My daughter is 21 had KD age 2 all heart scans was clear and she was discharged...

My daughter is 21 had KD age 2 all heart scans was clear and she was discharged 18 year ago she still gets pains in her chest passes out and is tired all the time app the doctor said I'm over reacting paranoid and don't put my fears on her

  • Problem is that most have never heard of it. Print off a description with symptoms and prognosis and carry it with you so you can give it to them. Might help xx

  • I am 35 and had it twice. 4&11 I still have issues. I also have the same symptoms. They get better with good sleep, lots of water, and as little stress as possible. I go in for checkups since the ambulance had to come get me. My heart rate was over 200 (they thought I was having a mild heart attack).

    Go with your gut and keep a journal. Don't take no for an answer if you don't feel right about it.

  • It's crazy I have something wrong with my heart and I'm waiting for open heart surgery any day to replace a valve app they say I had rheumatic fever as a child my mum said I did not and its been pick up now lol had they picked it up when I was a child I would not now be waiting for major surgery so who takes the blame ? X

  • I had kd when I was 2 and even now I get signs especially when I'm ill hope she's okay. X

  • Hi Kim, one of the recommendations that has recently been made for adult survivors is to have a Calcium CT score done. Start there, and then demand a treadmill test.

    Three years ago, I had what turned out to be a probable heart attack. Three different cardiology practices did EKGs and Echoes and saw nothing wrong. The KD Foundation sent me a study showing a link between long term blockages and aneurysms. My cardiologist set me up with a treadmill stress test after I shared that with him. This was the first indication of a problem. I had a cath the following week that found the right, front and rear arteries almost totally blocked. This was likely from scar tissue building up after the body tried to heal the aneurysms. I ended up with quad bypass surgery, then had a stent placed three months later in another blockage the surgery could not address.

    So please DEMAND that your cardiologist keeps checking to make sure you're not experiencing anything similar. In many of us who had aneurysms as kids, there are no signs or symptoms until it's too late. I know that I am extremely lucky that I had a study to convince the doc to keep checking. A number of our fellow survivors with cardiac complications have not been.

  • Thank you so much for all your messages that's really given me something to go at and lots to think about you just take what doctors say as gospel because they are the professional xx

  • Kim, you will find that with KD, they don't know much. Especially adult practices. This is why I started the KD Survivors group, to help us share information and educate the medical community when we can. Your ability to do a little research can be the difference!

  • Very true I do research most things it's my daughter who had KD when she was 2 now 21 and is having lots of chest pain passing out tiredness just saying before I'm waiting for open heart surgery to replace a valve any day I've been told I had rheumatic fever as a child I'm now 49 no one ever diagnosed me with that ever my mum said I never had it and it damages the heart like KD just seems strange I had that and she had KD pretty similar

  • get checked...mother intuition > doctors opinion!

  • I'm 41 had KD at age 2. I ended up having double bipass at age 20. I was not diagnosed at 2. Leading up to the bipass I had an angiogram and the dr who did it told my mum that with what he saw and what she told him about my illness he though I had had KD. When I had the angiogram it showed that I had 2 anurisms. I had all the classic heart attack symptoms, pain down the left arm up the neck into the jaw. The only reason I didn't have a heart attack is because I developed colatorals the LAD artery was filling from the bottom up. I'm very lucky my family Dr took me seriously and referred me to the cardiologist or I may not be here today. I have since had 2 children, and see a cardiologist every other year. I would definitely suggest seeing another dr for a different opinion.

  • I agree. The told me for years I was having panic attacks....Problem is that is not what it was. I have a heart condition they thought was anxiety.

  • Wow I still have the same pain in my neck into jaw and shoulder to arm pain. I already had a minor heart attack(they think). They still argue about the tests I ask for. Keep us posted and keep pushing.

  • They tried to tell me that too, when mine was elevated between the surgery and the stent. Total BS!

  • Share this with your cardiologists. It should help. Foundation/posts/1382121151817 784