My 16 yo son had a heart murmur at birth.We were told that it closed before his 1st birthday. 3years ago he fainted and then began to get migraine headaches after strenuous exercise. He also got lightheaded occasionally when standing. This past spring he really increased his exercise regime and got more migraines. An EKG was done but was read as normal. This fall he really increased his exercise and began to be extremely fatigued. In early October, he got a migraine and took Axert. He had been taking Doxycycline at this time for a year for acne. He developed blurred vision, eyes crossing and lightheadedness.The docs felt the new symptoms were an intractable migraine variant and told him to take a double dose of Axert. He got worse. He had a short cardio appointment where the doctor told him to drink more and he was fine..The doc did say the murmur was still there. He tried out for basketball and all throughout the two hour very strenuous tryout, he had tunnel vision with lightheadedness and then at the end his vision whited out and he was extremely lightheaded. I took him to the ER where they ran some tests - carotid ultrasound and chest xray. The next day he had an echocardiogram and he did a cardio stress test and went far into the 5th level and then got lightheaded and they stopped the test. At that point after 5 mins of rest they got a reading of 240/60. The cardiologist called me the next day and said that it was completely normal. We then saw a migraine specialist who said this is not migraine and who then said we should go back to cardio. He is orthostatic on rising for this whole 3 months. He is too lightheaded to go to school, gets very fatigued with any activity. It is very hard to rouse him in the morning and he has some cognitive issues with this related to language and speaking. Could his murmur have "reopened" or something? Could the Axert have triggered something? We have another cardio appt with a new doc, in 3 weeks.
There are several things going on here, including a heart murmur, exercise associated headaches and dizziness, fatigue, and difficulty concentrating. Except for the murmur, these sound like they could be associated with postural orthostatic tachycardia syndrome, or POTS. If he has a normal echcoardiogram, the murmur is likely an innocent murmur (assuming that the study was performed by a pediatric cardiologist). You may want to look at two websites, www.dynakids.org, and www.dinet.org, to see if your son has more symptoms consistent with this. Either way, exercise-associated dizziness may be due to some decreased blood pressure at the time of the exercise; unfortunately, a BP was not obtained at the time of the event. I would recomend that you return to your cardiologist and discuss POTS as a possible etiology, or try to find a practitioner who is more familiar with it to help with possible diagnosis.
I just got a copy of my son's ECG performed when he was 9 days old. It was stated that it was normal in the report, but the text at the top has all sorts of phrases like Abnormal ECG, supra ventricular tachycardia, left posterior fascullar block, acute pericarditis, inflected t wave, sinus tachicardia, st and t wave abnormalities, possible anterclateral ischemia I-C, 1 + Mv T wave in lead. I guess I should just wait to see our cardiologist since no one is answering this, but I would like to have some questions to pose to her and would like to get on track to find a diagnosis to be able to get my son well.
Thank you for the reply. I will discuss POTS with the pediatric cardiologist at his appt next week. An adult friend of mine said that he has very similar symptoms and he had a TEE as the regular echo did not show anything and the TEE showed the valve where his murmur was had torn and he had to have surgery to repair it. Another friend told me to ask about Marfans as my son had an inguinal hernia at birth, needed a palate extender as a child, has a long arm span, has scoliosis, stretch marks and very flexible joints, along with a paternal cousin who had a lung collapse at age 17. Yet another friend said that his daughter had the same exercise intolerance symptoms and it was a-fib and they had to perform surgery to fix the electrical "branching". Based on the stress test that my son did after the basketball near-syncope episode - his BP was 240/60 after 5 minutes of rest at the end, so I do not think the exercise lightheadedness is due to low bp. Do you think a Holter monitor would be of some value at this point? He has issues at night as he wakes up sweaty most nights - we live in Vermont and we keep it cool in the upstairs bedrooms and he does not have too many blankets on. So many strange symptoms...
A 24 hour Holter monitor is used when there are symptoms on a daily (or more frequent basis) that are specifically associated with abnormal heart rhythms. Prior to getting testing, it would be better for your cardiologist to obtain a complete and appropriate history to see if one is indicated. Doing testing just to test for things is expensive and very low yield.
Obviously, you've gotten lots of input from a lot of people who have their own experiences but not a lot of ability to put your son's symptoms in context. Therefore, hopefully your cardiologist will be able to put these in some kind of a framework that seems to fit together. If you are not satisfied with the information or evaluation that you are getting from your cardiologist, you should consider a second opinion, especially in light of this constellation of findings.
Thanks for the speedy reply. I agree that just testing for the sake of testing is ridiculous, but so is being sick for 3 months, missing school, sitting on the bench for your varsity basketball team (missing playing the game you love and have played since you were 6 years old!). The reason I asked about Holter monitoring is that it is non-invasive and could maybe capture what is going on at night as to why he is dizzy as soon as he opens his eyes in the morning before he even tries to get up. His ECG done at 9 days old mentions atrial flutter and perhaps the triptans that he took so many of that seemed to trigger all these symptoms triggered some episodic cardiac problem in conjunction with his increased exercise regime. This next cardiology appointment is our second opinion. The first one told us that my son was fine, but dehydrated - he averages 70-100 fl ozs per day! After telling us that, he shooed us out of the office without even trying to answer our questions. He is the same doctor that told us that a bp of 240/60 after more than 5 minutes of rest on a stress test was normal, even though the techs were acting upset when they could not get a reading for those 5 minutes and his cardiac nurse sternly lectured my son about not exercising to that point of lightheadedness/tunnel vision. When he tried out for basketball and fought through all the tunnel vision and lightheadedness he ended up on the floor, white as a ghost, clammy, unable to speak clearly, unable to see. I thought he was having a heart attack or a stroke and took him straight to the ER. I appreciate your responses and I know that we just need to wait for our appointment and ask this new cardiologist our questions but it is hard to sit by and watch your previously healthy boy struggle with just getting up in the morning. Some days he crawls to the bathroom!
I just wanted to write to you as well after reading these posts. My husband and I have been through the ringer, not in the same way as you, but through the ringer, none the less. Heart disease destroyed my daughter's childhood as well as her teens. She finally had a heart transplant at 22. There are some things we have learned along the way and they are things perhaps you should consider. Allowing your son to stay home from school is never a good idea, based solely on what you have written here. Teens do not deal with friends who have heart problems of any sort because they know heart disease kills. Teens live forever, if you get my drift; they begin to disappear. Your son is risking losing many of his friends by keeping him home from school. It is very rare for any pediatric cardiologist to agree to keeping kids home from school even when they suffer from severe forms of heart disease. Even many of the children, including my own daughter, could not stand the idea of staying home and at one point we had to shorten her school day as it was, for her own good. In the end she ended up having one friend left out of high school. Another thing you really need to be honest about and consider (and understand I am NOT saying this is the case with your son) is whether or not your son is playing you for your concerns (understandable) and sympathy. I have seen this happen many times when my daughter was in the hospital; I watched a teenage boy play his parents to the hilt. He had a pacemaker (even as my own daughter also had), he would be running up and down the corridors visiting everyone else of the unit, but when his parents showed up, he took to his bed and looked like he was on death's door, literally. It's pretty hard to believe your son is 'crawling to the bathroom'. Your son's BP should have been normal after 5 minutes of rest after a stress test and I'm not saying there is not something going on here, just keep some of the things in mind that I have written on here. We've lived this life for a LOT of years. Take care
Thank you for your post and your attempt to help. I understand that you are merely telling us what you have seen and trying to be helpful, but your post was mostly not helpful and really disrespectful. It is bad enough when we have doctors ask my son questions about "Is your mind getting in the way of you getting well?", but to also have "peers" such as yourself question what I have written. Have you ever been so dizzy that you could not stand? Then how do you know what that feels like or whether or not you can make it to the bathroom without keeling over. Have you ever had an episode at school in class where your head "floated away" and when you came to you saw you had written scribbles all over your page. Have you ever fainted at school? Yes it is not right not to go to school, but it is also not a positive school experience to be known as the boy who fainted! I teach high school math so I know all sides of this whole situation. He has not been going for several reasons - (1) he feels too lightheaded and dizzy in the morning when most of his classes are, and (2) he is having cognitive issues and cannot understand or do much of the work. When he does go to school, he is so exhausted that he sleeps for 12 hours. Last week after being at school for 3 hours he was slowly walking down the hall to my room and was extremely pale and lightheaded. It was all he could do to make it to my room without just sitting down on the floor of the hallway to be able to make the next few steps. He has already had to drop his Pre-calc and language class. Do you think he wants to do schoolwork all summer or maybe repeat this year? Do you think he wants to not play varsity basketball - something he has been working toward since he was in 1st grade!
My son is not playing me to get something out of this. He wants to be well to get his life back and does not fake symptoms to get my support or sympathy.
I know you feel you are speaking from your vast experience with this kind of thing and I am sorry your daughter had to go through so much, but please do not tell me what you think is going on when you are not in my shoes, nor in my son's. I wrote on this forum to get support and ideas about what condition he might have and your post did not help in that regard.
I'm very sorry that you took what I wrote in such a negative way; it was not meant to offend you in any way whatsoever; I was simply trying to get you to think about the things I wrote. Sometimes when people are on the outside looking in, it helps to have their input. Sometimes they will say or write something that will trigger a new thought in the parents. As I wrote above: I am not saying that there may be something going on with your son. I have worked in the cardiology field; a BP as you described is not normal after 5 minutes of resting. I used to run those stress tests; hundreds of them in a major medical center. Fainting in teens is not that uncommon, the reasons for that are numerous; just because a teen faints does not mean there is anything going on, that does not mean they should not be evaluated. Have you considered asking his doctor about him going to a shortened school day? I did not understand why you classified me as being a peer to you? Is it because we are both mothers? If that is the reason why, than we should both understand each other. Your son is taking medicines, those medicines themselves may be the cause of his fatigue, dizziness and lightheadedness. Meds can also cause cognitive issues. Have you seen a neurologist? Has he had an EEG? Have you had him taken for neuropsychological testing? Has he had a Tilt Table Test to test his blood pressure responses? These are all things you can do to help your son. Has he had a Glucose Tolerance Testing done (a 6 hour GTT)? The doctors may tell him to stay well hydrated but most fail to mention that you also need to eat a lot of protein as well, as it is the protein in the body which helps to 'hold onto the fluids' in the body. ALL babies the world over are born with a hole in the heart and have 'functional' heart murmurs; almost all holes close by the time the baby turns a year of age. Those holes sometimes take longer to close in some people, some holes never close and for the most part do not cause problems for those people; if they do then those patients tend to develop some degree of heart failure. The hole would have to be a bad one for that to happen. Sometimes when a person has a fever and is sick, the murmur can be heard, even if in the past it was not heard. A murmur is simply a sound heard as blood flows through the valves. The 'type' of murmur heard is what tells the cardiologist if there is structural problem with the heart. You asked me several questions about things that have happened in my own life with health issues, I am not going to get into that except to say that as I have not walked in your shoes, neither have you walked in mine. Again, I am sorry if you took my post the wrong way. Maybe someone else here on the forum may gain something from this post. take care.
Thank you for the new reply and for the clarification. Maybe I was overly sensitive to your original statements. My son is not taking any medications at this point in time. Our "regular" neurologist took him off the doxycycline in early November when all of this started to come to a head. He has seen three neurologists and had both an MRI and an EEG and repeated neurologic exams. Axert, as well as other triptans, are only taken during a migraine episode, not daily. He has not taken any migraine drugs since mid-November. The last neurologist we saw said to go back to cardiology. He has had some blood work done, but no glucose tolerance testing - I asked and was told there was no need. No neuro-physiolgoy exam, no conversation about protein or any other diet concerns. This is not just a matter of a simple faint as he is still exercise-intolerant - we had a PT come to the house and work with him on a few things to keep him in good muscle tone - had to stop due to lightheadedness - which then caused extreme fatigue. Thank you for the ideas. I will try to pursue them with the new ped cardiologist or his pediatrician.
Lucy, I am SO GLAD you wrote back! :) You wrote earlier that your son was lightheaded and dizzy in the morning, that is when they do GTTs, first thing in the morning before anything is eaten. Consider having this test done. People who have sugar issues have weakness, lightheadedness, dizziness, and can definitely have cognitive issues, mentally they can be in a fog. They can feel weak. They can certainly pass out. You can talk to them and they may appear pale, sweaty and 'not totally there'. Why on earth the doctor would not test him for sugar issues is beyond me; it may be because having your blood drawn several times over several hours is a lot for him to go through? Another cause of severe dizziness, or vertigo, is due to problems in the inner ear. Has he been seen by a Ear, Nose and Throat Specialist? When the neurologists saw him, did anyone ever mention doing a Testibular Testing? This is a major testing which involves checking reactions of the eye to movement, checking hearing as well as doing several testings of balance while on a moving platform. What were the results of his neurologic exam? Also the test was a neuropsych testing; it is not a physiology testing. It is a test which lasts for several hours (6-8) given by a specialist in neuropsychology. They do cognitive testing, not physical testing. If your son is having cognitive issues, that test might give some light to what is going on. Some children who have problems getting blood to the brain can have their brain function altered, I'm not saying that in your son's case, just that it can happen. Realize that you are not only his mother, you are also his advocate. Sometimes, it's the mother who figures out what is really going on and it is she who needs to get the doctor to 'think outside the box'. Just because something is rare, does not mean it is does not exist. I wish you well.
We met with the new ped. cardiologist. She was very thorough and answered our many questions. Her thoughts are possible a dysautonomia type condition. They used a pulse oximeter on him and saw he was in tachycardia for most of the time the was upright. So, he wore a holter monitor for the next 24 hours. The doctor was also going to look at the echocardiogram data itself and make her own conclusions not just read the report. She was going to pay special attention to the aorta as my son does have numerous Marfans indicators. We are awaiting her call with all of this information together.She recommended cognitive testing to check on his issues in this area. We are awaiting word from our insurance company on this.
I will keep you posted. Thanks for your input and help.
Hello again, how are things going at this point? Is he feeling any better? I'm glad you got in to see a new pediatric cardiologist with him and that she is a thorough doctor. Keep us posted on how you are all doing. Going through something like this can cause a lot of stress on you. While I am saying that, there is also a Pediatric Cardiology Forum on MedHelp as well. As the Community Leader for that forum, I try and get on there at least once a day. Take care
Things are about the same with my son. He is able to be more upright and active (walking, standing some) but pays the price with fatigue. I am very upset and confused though by the behavior of this new doc and her staff. I had a very strange phone call from the nurse on Friday who told me there was nothing wrong with my son, he was being discharged from their office, no follow up was necessary...I asked about the diagnosis given at the appt - was told I would have to talk to the doctor - left a number for her to call me on. She called a different number and left a brief message that did not address my questions, I called back, no return call yet...Of course all of this was late on Friday, so we spent the whole weekend wondering about this new "information." The nurse was so rude and mean spirited! .I know my son is not an emergency case and he is not dying, but I am just frustrated as I want to know about follow up - if she is going to refer us to someone else - that will take forever to get in. This has been going on for 4 months - 3 neurologists, 2 pediatricians, 2 ped cardilogists 1 psychologist... The new ped cardiologist said to talk to the psychologist about cognitive testing, he asks what kind of testing - we go around in circles daily and get nowhere! The ped card agrees with us that there can be cognitive deficits with dysautonomia, the pediatrician says no. I work full time as does my husband and all these calls and appointments take up so much time - I have a generous sick leave policy, but the work still needs to get done. I am just tired, physically, and tired of seeing my son be ill and getting nowhere. Sorry to just go on and on, but I am so upset.
We are still struggling with symptoms and issues. My son is having some good days, but then he gets very fatigued and that causes bad days. He is less lightheaded when he sticks to the large volumes of fluid and gets tons of sleep, but when he only gets 8 or so hours of sleep, many symptoms come back. His bp and heart rate are all over the place. At times he is orthostatic and others not. Last week we did a 10 min rest bp and hr, followed by 3 mins of standing measurements and then 7 more minutes. Bp dropped and then rose again, but hr rose both standing readings to 100 bpm for just standing there. It often goes higher than that, but ped cardiologist does not want to call this POTS, but vasovagal instead, but his hr does not drop. We are trying to get in to see an ANS specialist but our only local specialist usually does not see ped patients, so he is deciding whether or not to take my son's case.
I was going over his echocardiogram results and had some questions. I am sorry to take up more of your time, I was just hoping you could help.
The results show trivial and minor tricuspid, pulmonary and mitral regurgitation. Since this test was done at rest, would strenuous exercise increase this regurgitation to higher levels and thus cause the exercise near syncope and resulting fatigue? Also, the report states "high great arterial laminar flow velocities consistent with hyperdynamic circulation." I looked this up, but the terms do not make sense to me. Could you explain this and tell me how it is connected to his lightheadedness, fatigue, cognitive deficits, and near-syncope?
Just got a copy of the stress test ECG. It is labeled as "Abnormal ECG" It states Long QT interval and also Non-specific ST and T wave abnormality. The handwritten notes also make reference to tachy pnea and pvcs, and t wave inversion during recovery.
For the past 2-3 weeks my son's bp has been hovering around 149/90. This is a new "high" level. Over the past 4 1/2 months it has fluctuated greatly, but at much lower levels.
Any input you could give me would be much appreciated.
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