Hi everyone, just a wee update on what's happening here. We got word from my daughter's cardio yesterday that even he is unsure about the need for the device. He has talked extensively with specialists in Australia, and they don't know the answer. We will go ahead with the implant as it would be terrible if she doesn't get it and doesn't abort during her next episode. Leah is on Sotalol and has been since 2003 and hasn't had an episode since then, although our Brugada seems to flare up during fevers, and she hasn't really had a fever since 2003, just slightly raised temperatures that I have controlled by giving Pamol.
We found out about the Brugada because Leah had a fever in March of 2003, and her heart was racing. My husband and I got her to hospital and told them in the emergency area that her heart was going really fast, you could see it fluttering in her chest as she was a small 21 month old. They pretty much ignored us at first but we made a nuisance of ourselves and they finally looked at her and hurried up with getting her checked up. The nurses hooked her up and found her pulse was over 300, and that's probably why she was so limp and sleepy. I am so amazed she didn't suffer any brain damage as she was not given any oxygen at any time, which I didn't know to ask about. Now I know. She was given some meds to try to get her out of VT and all three times it didn't work, they tried ice in water and dunking her into that. That didn't work. Then she coughed and came out of VT, sat up and started to get her colour back and talked to us again. Poor girl. We ended up flying up to Greenlane where they did heaps of tests and because her illness went away, we ended up going back home again. About three months later we got a call that an ECG that had been misplaced showed typical signs of the Brugada Syndrome.
This got really long and I'll post more of the story at another time. Thanks for the email Cyndie, once my computer lets me, I'll respond to you too.
Thanks for reading, Rowena.
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