My 5 year old has recently had LQTS confirmed through genetic testing and is on beta blockers. He never had any symptoms before the test came back but in the last two weeks he has described "fluttering" in his chest, no pain. We took him to the emergency room (his cardiologist was out of town), and they did an ECG and holter monitor which looked ok. Now, again, he is describing a painless "sparking" in his chest. Again, the cardiologist is out of town so we are taking him in to see our family dr. We do have an appointment with the cardiologist at the end of the month, but i am going a little nuts waiting for the appointment. Is it normal for children to descibe these symptoms? So far no one in our family has shown any symptoms, LQTS was caught by chance when a family member had an ECG done, What should I expect the cardiologist to do? How seriously should we take these "flutterings"? I hate to rush him into the emergency room every week, but I want to be careful. Any info would be helpful. Thanks.
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symptoms in children
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- By Longqtoo
- Posted November 8, 2007 at 10:32 am
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Meghan,
What type Long QT did the genetic testing find? Has your son been seen by a pediatric electrophysiologist?
"Fluttering" is a good word to describe palpitations. Is he active (running, jumping, etc), when these occur? The fluttering could be nothing or something. Best way to know is to have him wear an "event monitor", usually 30 days, which will catch the ECG of any palpitations. The holter isn't enough as it's only 24-hours during which no palpitations may occur.
If your son's cardiologist can't see him until month end, ask if there isn't someone else in the practice who can, at least to get the event monitor going.
- By Trisha2
- Posted November 9, 2007 at 12:19 pm
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As I read MeghanDA's comment I felt as if I had written it myself! I also have a 5 year old boy (diagnosed 1 year ago with Long QT--Type 1) and the symptoms her son describes "hits the nail on the head" of what my son describes! I too have contemplated the ER visits...but of course you do not want to over-react but fear of the worst happening always lies in your mind. I did take him in once--at the advice of the Mayo Cardiologist I spoke with--but, of course, the ekg's didn't show anything by the time we were done.....frustrating.
Last October he started with "just feeling like he couldn't catch his breath" and telling me that "his heart jumps". He has also explained the "flicking" in his chest. He is Nadolol and that seemed to help--at least he wasn't complaining the shortness of breath as much. Lately though it has seemed to almost "flare up" again? Not sure if it's the change in temperature (coldness seems to bother him more) or if his dose needs to be increased since he has grown? We will be following up at Mayo in 2 weeks...so we will await their recommendations.
My son did wear a 24 hr holter and a 30 day event recorder---none of which could SHOW when his symptoms were happening...although I could SEE him experiencing them. We only were able to confirm the diagnosis through genetic testing---which we have now found out it also positive in myself (age 32--fainted twice as a child (no dx) & experienced very erratic palpitations a few years back--dx'd as "stress" and my daughter who is 9 (she has never experienced any symptoms.
I guess we just have to be thankful that the kids are responsible and mature enough to let us know when they have these symptoms....and be more than thankful we found this diagnosis before it was "too late & unexplained".
Take care Meghan!
- By MeghanDA
- Posted November 9, 2007 at 5:54 pm
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Hello,
Thank you both for your comments. Jack was diagnosed with LQTS 1after finding a mutation on the KCNQ1? gene ( I think I got that name right). When he had the palpitations he was not doing much of anything physically, which is why I suspect it to be unrelated. I don't want to frighten him into not telling me when he has these feelings, but I don't want to ignore them either. I just spoke to his cardiologist who is reviewing the holter monitor now and I guess we will take it from there.
Trisha, our experiences do seem similar. I am also 32 and have just been diagnosed with LQTS only because my father and son both clearly have it through genetic tests. No one in the family has had any symptoms and I am not convinced that Jack's "sparking" feeling is related for sure-however, I will treat them as though they are. What is the event recorder like? Is it similar to the holter? Jack didn't mind it, although he hates to have it taken off.
Thanks again for your reply!
Meghan
- By Trisha2
- Posted November 9, 2007 at 6:33 pm
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Hi Meghan--
The Event Recorder is very similar to the holter. Quinten was the same....taking it off was NOT his favorite part (thank goodness for adhesive tape remover!!). He wore it 24hr/day for 30 days and when he had symptoms, we pushed the record button and then you sent the recording via telephone and it printed out an ekg strip at the monitoring office. You can store up to 3 recordings before you have to transmit it...at least on the type Q had. Unfortunately even when he did have "symptoms"--or at least what are symptoms in Q's case--they did not show up when we sent the transmissions. He also seems to experience symptoms when he is at rest--or at least that is when he is more aware of them. When I experienced my palpitations a few years back, I also noticed them more while at rest. Strange! So whether or not they are related to Long QT....I guess we don't know but there sure doesn't seem to be any other "explainable" reason for these symptoms.
Being in all day kindergarten posed a bit of a challenge since he would push the button early in the day...I would pick him up in the afternoon & see he recorded 2 times...but to get him to remember 1)what he was doing at the time he pushed the button and 2) what he was feeling at the time...was sometimes tricky. It was also quite the "hot" show and tell item for the first few days..but it grew old and now he brings his AED and the kids treat it as common as a lunch box.
Best of luck to you...hopefully we can keep in touch! Trisha
- By katiesoftball26
- Posted November 9, 2007 at 6:53 pm
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Hey I was reading about what you were saying that you had been expieriencing about being almost completely at rest when you feel the palpatations, the same thing has been happening to me. Also, when I had both the 30 day event and the 24 hour holter moniter, whenever I said that I felt something it showed up as nothing on the ekg strip, which I found extremely odd. I don't know if that is a coincidence between the two of us and is completely unrelated or if it actually the qt and we just don;t have the technology yet to be able to read into it. Now I am hearing more and more people say that they are expierencing the same thing with the monitors and such. So good luck with everything.
We are also looking into going to the mayo clinic to see Dr. Ackermann. Is that who you have been seeing?
katie
- By meg12col
- Posted November 9, 2007 at 7:38 pm
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Hey, i've been reading what everybody has been saying.
I get the same feelings as well, including it with pain and the ones where it's hard to catch my breath. I have also had holter and event monitors to try to figure out what was going on, but nothing showed up at the times I had them. My parents did take me to the emergency room for this a couple of times, but all ekgs were normal by the time I had an ekg done. It was passed off as panic/anxiety or have no reason behind it. i am still working with my doctor today to see what's up when I do have these feelings, but the ones in which it's hard to catch my breath is more recent and I haven't had a chance to tell my doc yet. By the way, I also get them at rest as well and I am also on nadolol. My cardiologist did tell me that the longer you have it, whether it be pain or fluttering, whatever, the more likely that it's not related to the heart at all. Rhythm disturbances in the heart tend to come and go quickly which was what he also told me. Hope it helps nad hang in there.
- By Trisha2
- Posted November 12, 2007 at 11:19 am
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Hi Katie!
Yes, we see Dr.Ackerman at Mayo---he is WONDERFUL!! I also just went to a Cardiology Conference last month regarding Sudden Death in Athletics & Cardiac Arrhythmias etc. and many of the speakers "quoted" the studies of Dr.Ackerman so is definetly a leading expert in the field. We have also been in touch with Mary Jo Gordon at the C.A.R.E. Foundation--she is a wealth of information and support (their website is also excellent!!).
It sure is frustrating to have symptoms that are "unrelated"...not sure what to really think about that?
Take care, Trisha
- By katiesoftball26
- Posted November 12, 2007 at 8:40 pm
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Hey Trisha-
We are trying to set up an appointment with Dr. Ackerman asap. I don't know if youve read about my story or not on the "sports" thing or not but my cardiologist kinda messed up our situation by telling us he was going to be in touch with dr. ackerman and send all of my test results and stuff and just talk with him over the phone and such so we woulnd;t have to make a trip all the way up to mayo. evidently he never did that and is know suggesting that we go up and see him but i really don;t know if that will work or not beings that it is so close to the end of the year and all.. but we are trying because softball starts soon and we really need some answers. could you let me know a little more about that conference you said that you went to that mentioned dr. ackerman..... if you could that would be really great. thanks for all of your help!
katie
- By Trisha2
- Posted November 17, 2007 at 4:57 pm
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Hey Katie!
Well, I will definetly say Dr.Ackerman is worth the trip. He has very helpful literature that he has authored to. I believe Mary Jo Gordon mentioned there is also another excellent MD for Long QT at the UW Hospital in Madison, WI--which sounds like it might be a little closer to you??
The conference I attended was very interesting. The intended participants were Cardiologists & medical staff etc & the focus was pretty much on the importantce of screening ALL athletes from grade school and up. There were numerous case studies presented....scary case studies..as a mom of two children w/ long qt and long qt myself....it was sort of "chilling". They did mention the Bethesda Guidelines...which I found on the internet..and those deal with sports participation & I found them to be helpful (and interesting). I would be happy to make copies of the information I received (and my Dr.Ackerman articles) and share them with you--just send me your mailing address (my personal email is "trohloff@riversidemedical.org").
Every case is so patient specific that the guidelines are just that....guidelines. I can't imagine telling my 6 year old and my 9 year old that they could "never participate in sports" yet I don't want to take unnecessary risks. I was just diagnosed with Long QT (at 32) and I played softball, basketball, volleyball throughout my school years, fainted once--diagnosed as "nothing" --, & actually I never had any more symptoms (palpitations) until about 5 years ago. Go figure huh?
Take care! Trisha
- By katiesoftball26
- Posted December 3, 2007 at 7:00 pm
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hey
well we are in the process of figuring out if we are going to/need to go to see dr. ackerman right know. what was the name of the other doctor that you mentioned out of madison, wisconsin? (which is closer. thanks!) and what are the Bethesda Guidelines? i've never heard of those. but my email is catherineg26@msn.com and if you could send me the info from the seminar that would be very helpful thank you!
haha well funny story, i was assymptamatic until monday. haha. in the morning i ended up passing out/had a seizure and they just passed it off as simple fainting so we don;t really know what went on there. when i went to the er my heart rate was really low though (51) and he said i was "neurologically fine" (according to litterally two hits on my knees but this doc was like a whackjob so i don;t know if anything he said is worth listening to haha) so i don;t know what going on anymroe. tomarrow i am getting another holter monitor on so that should be interesting to wear to school for two days.. good luck with everything and thanks for all of your help. =]
katie
- By Trisha2
- Posted December 3, 2007 at 7:17 pm
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Hey Katie!
The MD's name in Madison, WI is Dr.Craig January at UW Madison Medical Center (that information is from Mary Jo Gordon at CARE Foundation)--she said he is "highly respected in the Long QT Field."
The Bethesda Guidelines are basically just "that"--guidelines which help MD's determine what restrictions to place on patients in regards to different sports & activities. You can search for them online and get tons of information!
Sorry to hear about your recent event...hopefully it all turns out ok!! Just remember...only YOU know how you are feeling and if something doesn't seem right...find out for sure!!!
Take care, Trisha
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