Daughter

My 11 yr old daughter was diagnosed with svt 18 months ago. She recently had a spate of 3 attacks in 2 weeks with the last one resulting in us going to a & e to have her heart slowed down.

As much as I try to reassure her, she keeps asking me if certain things she is feeling is 'normal'. I don't know how to keep her mind off past events and fear it will interfere with her general wellbeing as well as her svt. One if the things she keeps asking is 'is it normal to feel like something is lodged in her throat'. I can't bear the thought of her worrying about this all the time, it upsets me and wears me down so I can't imagine how she feels. Any response would be very welcome

26 Replies

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  • Hi Julie, it must be difficult for you and your daughter. Is she on medication? Is she seeing an Electrophysiologist? I suffered from SVT for about a year but then it became ST which is far less troublesome but I am in my 60's so no comparison!

  • Thankyou for your reply it is my first post and it's nice to know there's people out there who are bothered about my situation. She is on atenolol but we are waiting to hear from bham children's hospital as to whether they wish to increase it so a bit in limbo. I know she's in the best hands but just had a bit of a wobble myself last night.

  • Any time. Wish I could be more help. Take care.

  • Very tough to be only 11 and having no way of finding out more without looking on Dr Google which is definitely to be discouraged. To support her, perhaps there might be contacts that the paediatric/cardiac department might be able to refer her to, ie other children of similar age with heart difficulties, even if they are not local it would be reassuring on some level. Final suggestion is whether her school is strong in the science area? I teach at a primary school which has its own lab and even a scientist in residence who does all kinds of research and has all manner of contacts. Perhaps if her school is strong in science or has links to schools that are, they might be able to support her. It is about educating her about her condition so she is informed - part of the fear is the not knowing, often more than actually knowing the risks. The kids in my Y4 class are much calmer now they understand why I suddenly collapsed and went off and had a pace maker fitted! They trust the knowledge/facts as it is something tangible.

  • Thankyou for your response. We were briefly explained at the time of diagnosis but it's a lot to take in at the time. I like your suggestion re school supporting her and explaining the process of an episode. Unfortunately she's a bit of an ostrich and sticks her head in the sand! I did suggest her talking to like minded kids but she said she wouldn't want to, the problem is at her age you have to respect her wishes. Anyhow just getting a reply was reassuring for me but I will definately think about involving the school.

  • Glad I could help in some way. Hopefully her school is supportive and have the resources/contacts to do something, it is their job to look after the whole child, not just academic progress and so they definitely should at least try to help if they are able. Good luck.

  • Hi,

    I know where you're coming from! my son is 12, and has SVT also. Currently in a spate of episodes and has spent a bit of time at a&e in the last week. It's scary... and not easy to know what they are feeling. Is your daughter on any medication? We've found that once he's been on a dose for about 6-9 months, he will start having episodes again. The consultant refers to them as 'breakthroughs', and they are an indication that he has grown and is ready to have the dose increased. I've also found that if my son is fighting off a bug or gets a cold he will have an episode or two - and then a day or two later will go down with something. He has never mentioned feeling like his heart is in his throat, but I will ask him when he gets home from school and get back to you. Also happy to ask him if he has any advice he can give your daughter as a fellow svt-er if you think that would help.

    It is a worry, but important to try and remember that this isn't life threatening, and that your daughter should try and do everything she did before. My son is very sporty - and loves playing football. That was tricky, when he had to stop for a while until he got a diagnosis. But now we try and get him to do everything, even if we are standing on the sidelines silently fretting. I think it really helped him to trust in his body again, and to learn that he can carry on as normal. It took a while though, and it's tough when the kids get these things young. (My son was 9 when this all started) We bought a pulse oximeter for about £20 (on amazon) and that has also helped him to know when his heart is playing up. It might out both your minds at rest. Also, important to get school on side, and to teach them how to deal with it. We have a box at school with a syringe in for blowing down to break episodes, and a spare tablet that he can take to slow things down, and I've typed instructions on what to do - as initially they called an ambulance every time! Once they know not to panic, then hopefully your daughter won't either.

    I hope things improve for you both and that the worry subsides for you too. Will be in touch this afternoon about the heart in throat feeling.

    Sending all good wishes,

    Lynn x

  • Hi lynn Thankyou so much for your advice. My daughter does horse riding and the last thing I want is for her to give it up when I know how passionately she loves it but like you I sit on the side lines heart in my mouth so to speak. She is on medication 5ml atenolol twice daily and we are indeed awaiting advice from bham children's hospital as to whether they want to increase her dosage. It most definitely is a case of getting her to have faith in her body after she has these episodes. What medication is your son on? Is he under the care of a specialist hospital? I do my best to reassure my daughter (amber) with her concerns but she is a born worrier anyhow and I think her mind runs away with her! How does your son and yourself feel about ablation? I've read good and bad about results. I hope your son continues to enjoy and play football

    Thanks once again

    Julie

  • Hi Julie,

    My son is on 7.5mg Bisoprolol per day at the moment, it's just been increased due to his last week's wobbles, and is under a consultant in London. I am very nervous about ablation - I have also heard good and bad, but he has always been really keen to have it done - to the point that he got really stroppy with the Dr last year, as he wanted it done "now!" We have been advised to wait until he is older as once he is more adult sized the procedure becomes technically easier for them to carry out. He is finally now getting old enough to appreciate the long view, but in any case I don't think he really knows fully what it entails - and we thought we'd leave the finer details until nearer the time... :0/ We are seeing the Dr again in a couple of weeks so get the results of his last 48 hr tape, and hopefully see what's been going on lately. This past week and a bit has been strange - rather than having an episode which lasts then stops he's been shooting from 60 up to 235 and then straight back down again, and has been doing this for hours/days on end! He's been pulse checking and in the space of 3 hours he had flipped up and down continuously. He is shattered, it really tires him out, and it's been a tough call to decide whether he should be in school or not. (I made him go in on strict instructions to go to the office if he had pain or felt unwell!)

    I spoke to my son about the heart in mouth feeling, and he says he also does feel like this sometimes, and that is does pass off. Does your daughter do all the vagal manoeuvres when she has an episode? (Straining, blowing into a syringe, face into cold water etc?). We've found that in the majority of cases they do stop him, and fortunately he has never had to have the adenosine shot at a&e. His particular favourite is to do a forward roll, which seems to work well, though is a little bit weird when you're out! Normally by the time we make the decision to go in we seem to find that once we get to the hospital his heart rate returns to normal and we sit there for 3 hours on the monitor looking like a pair of frauds! He's also happy to leave her a message in here if you think it would help her to read it. Let me know,

    Have a good, and svt free weekend!

    Lynn

  • Hi lynn I feel for your son, don't know about you but when amber has her episodes it physically and mentally drains me so goodness knows how they feel. My niece had the ablation performed and although not pleasant she was fine she is an adult though, unfortunately it wasn't successful and she experienced another episode but they do say it may not be successful first time around. It looks like the weather has put off any plans of riding today so amber has taken to building an agility course for her guinea pig! Happy days! Hope you have a good weekend too. Let me know how your son gets on.

    Julie x

  • I think the feeling that something is logged in your throat might be caused by worry/anxiety. I used to get it as a youngster.

    Koll

  • Hi - my daughter started her SVTs at 11. She's now 42. During that time there have been hospital visits and she recently paid to have her heart mot'd and all's well. She has learnt over the years to 'control' them herself and goes to A&E when she can't. She holds down a very responsible job (travels all over the world doing it) and also runs a business here and on the Internet. Providing all are aware and she receives support and reassurance, she will go on to accept this.

    On another note - even after all these years - I know when she's experiencing an SVT & it still pulls at my heartstrings.

  • Hi thanks for your reply. I have read it to my daughter and all these positive comments really reassure her and myself

  • You're both very welcome. Help and medication have come such a long way & getting better all the time.

    I've just bought 2 goldfish (today) & called them Peace & Calm !!!!......just as a reminder x

  • I had a sick daughter (not svt). My advice as a parent is trust that God given bond/love for you little girl. Let her be as normal as possible and reassure her that we (you and the doctors) will figure out what to do next. whatever you do... don't doubt yourself.

    BTW... my daughter is fine now.... but needs to be on meds..... the alternative is unacceptable (that's my life quote)... Prayers for you and daughter

  • Hi Julie,

    Just had a check up. It's looking like the bisoprolol is no longer working for our son - and that he has been in svt a lot over the last few weeks, so the plan is now to change him onto a drug called flecainide and get the ablation done asap. Scary much!

    Hope all is well at your end, Lynn x

  • Hi Lynn, Yes Im sure its a worry re ablation but if it ends his problems it will be such a relief for you all. I think the only thing I worry about is the possible disappointment if it isnt successful first time around. Its such a debilitating illness and has such an impact on their lives and ours too for that matter!

    I hope his new medication settles him down. Dare I say, things are good this end at the moment-touch wood although she was complaining of a tight chest the night before last it hasnt materialised to anything. Keep me posted re your son and the best of luck

    Julie x

  • Thanks Julie...you too x

  • Hi Lynn,

    Just thought I'd drop you a quick line to see how things are going for your son on his new medication. All good at this end

    Julie x

  • Hi Julie, Lovely to hear from you, and really pleased to hear all is well with your daughter. James has had a bumpy few weeks, a stay in hospital to start on Flecainaide, and the dosage has already been increased! Think he is starting to settle down a bit now, but currently waiting to hear from the Royal Brompton about seeing an electrophysiologist there to talk about ablation. Sending all best wishes to you, Lynn x

  • What a nightmare for you all. I hope the medication does the trick in the meantime. Your nerves must be shattered. Keep in touch

    Julie x

  • Hi Julie, Hope all is well with you and your daughter, and she is svt free? We have just found out that the ablation is on! He'll have it done at the end of August, which is terrifying personally, but hoping that it gives him the cure that is anticipated. The last couple of months have been fairly stressful - flecainide not working at all, despite 3 dose increases and he's been in SVT almost daily, even tying a shoelace or running up a few stairs has been setting him off. Side effects of the drug also horrid so he's had several days off school this term with dizziness and visual disturbances. It's a real mission getting the meds into him, as he rightly says that they make him feel rotten and they don't work. Ho hum. The summer holidays are going to be interesting, trying to get all the fun stuff done before he goes in - and although he still gets to go to Boys Brigade camp I am stressing about how he'll be while he's there. Bless the leaders for still wanting to take him. Wishing everyone a wonderful summer - I'll keep you posted! Lynn x

  • Hi Lynn, can only imagine the stress you're under I just hope that this procedure works wonders for him, he sounds like a real soldier. Amber has been relatively fine, a couple of incidents but both slowed down by themselves we discovered by pure accident that her bending over seems to help her heart go back into normal rhythm! She went to a theme park for a school trip-i thnk my heart was beating faster than hers! However, as you know, you cant wrap them in cotton wool and in a way it gave her confidence that she could still do normal things without any repercussions. Were off to Portugal on Sunday so fingers crossed all remains well. Keep me posted and I hope James has a fabulous camping trip, just keep reminding yourself it is not a life threatening condition. I know all to well that's easier to say than do but make sure you take care of yourself. Will keep my fingers crossed for the weather............now thats another matter!

    Julie x

  • Hi Julie, Just to say - it's done! James had his ablation on 21st, and, apart from some truly spectacular bruises around the top of his legs, and the pain from them, he is absolutely fine! The surgeon was really pleased with how it all went - and thinks she's got rid of his accessory pathway. He's had quite a few ectopic beats, but other than that he's looking amazing. I can't really believe it!! It was a long and worrying week in the run up to it - a lot of weeping from us, but James was amazing, he didn't really get nervous until we were leaving for the hospital in the morning. Having said all that though, really glad that he had it done, and am finding myself looking at him and thinking 'wow'. If he continues to recover at the speed he currently is he'll be back to school with everyone else on 7th. (He's not so happy about that...) Unbelievable, and hoping now that he can get on with being a rumbustious teenager again.

    I hope Amber continues to feel well, know what you mean about theme parks, (held his hand all the way round on the Vampire ride last year - checked his pulse before the ride had even slowed down!!) but as she seems to have found a great trick in bending over hopefully her and your confidence will improve if she is in charge of her SVT again. Sending you all best wishes x x

  • Hi lynn what a wonderful blog. I'm so pleased for you all ,especially James, it must be a wonderful relief for him. I hope he can do all the things that he thought he never could. It's wonderful news and so reassuring to know it's an option for the future if need be. Happy going back to school tell him he has no excuse now! All the best x

  • Hi Julie. So weird..i was just talking about this to another parent at the school gates today! Her son is only 6 and has SVT. He also keeps asking if 'this is normal' and is having difficulty understanding when it is appropriate for his heart to speed up during exercise and gets anxious about it. My other friend has had SVT since we were in primary school (30 years ago) and she always used to complain of a sensation in her throat. If it helps your daughter, popstars like Jesse J had arrythmias from a very young age and look how it hasn't stopped her living life to the full. Jessie J also had a stroke at 18 though so I don't want to make you or your daughter more anxious with that info but I think Jessie J is a great inspiration:) best wishes for you and your brave wee daughter. I find arrythmias scary as an adult so I feel for any child contending with it as feels like torture sometimes. X

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