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Hi Steph, thanks so much for responding to me! So glad to hear your little girl is doing well, but that sounds like such a journey. How soon was she put on the propananol? That does seem to have really started working for our little man and the flecainide less effective. We have an Owlet, and that has been how we found out about the 2 episodes Louis has had… scary, but so glad we have it. In the early days, how did you manage when you were out and about?
It took a long time and many repeated admissions for Propanolol to be added 😅 but as soon as the Propanolol was added she had no more episodes! In terms of getting out and about, it never really stopped me to be honest! We were given a stethoscope by the hospital so we always had that in her bag, so if we were worried at all we would just spot check her. You can usually feel it in their chest when they are in an episode though! We just take her meds out with us if it’s around medication time and we use disposable syringes - she has her meds at 7:30am, 14:30pm and 21:30pm so it’s not too bad! The hospital said we could do that ☺️
You kind of just find your feet and a routine. It was SO hard to begin with - I really really struggled but slowly and surely everything got better and easier to deal with. It’s still super new for you and it’s scary! But these babies have to be in SVT for a LONG time for it to cause any damage - and that’s what I always told myself. We would just get her to the hospital as soon as we could when she was in an episode!
Glad to hear things got resolved in the end - did they just increase flecainide doses before they added propananol? We’re struggling a bit with the 6x daily meds (leaving an hour between flec and prop and making sure no milk 1 hour either side of the flec). But I hope slowly we will get into a routine…..
Thanks Steph - that’s so reassuring to hear. Both episodes we have been at the hospital within 30 mins and had adenosine administered
Do you think you’ll slowly ween your little girl off the medications? Or have they spoken to you about the operation? I was told they couldn’t do it until 5yrs?
@Katherine it’s worth asking if you can give the meds at the same time? We’ve never been told to leave a gap! We’ve always given our daughter Propanolol at the same time as Flec, and we were also told half an hour either side for no milk! It made life a hell of a lot easier!
And yes, she will be starting the weaning process in a few months I think! They want to do another 24 hour ECG first and then begin letting her outgrow her dose.
That’s interesting…. We’ve been told to leave an hour either side and the hour gap for feeding. It’s really difficult!!
How do you feel?
Hiya! I hope you’re ok - I know exactly how you’re feeling - it’s really scary but I promise it will all get better. My daughter was diagnosed when I was 31 weeks pregnant, I was started on Flecainide and she had multiple episodes post birth which resulted in 10+ hospital admissions. She is almost two now and still taking Propanolol and Flecainide. But she is episode free (as far as we know) for well over a year now, and she is a super healthy and happy little girl! It’s so hard juggling medications and feeds, and also the anxiety too! I would 100% recommend buying an owlet so that you can keep an eye on his heart rate ☺️ it definitely helps with the anxiety! If you do need a chat about anything at all, please do reach out! She is under Birmingham Children’s Hospital and they are honestly brilliant!