Welcome to The Apnea Kid! A site dedicated to Joshua, my son who is only a few months old and suffering from hypotonia and unexplained episodes of apnea and seizures. I hope that you find something useful here, be it a link to some other site or piece of information or some comfort reading our blogs if you are sharing a similar journey to ours. Please comment or contact us if you want to. It’d be good to hear other peoples stories and advice from those going through it is always valuable.
Unexplained apneas and seizures affect many newborn children and the number of tests and wait for the test results can be agonizing. We know how you feel and this is one of our ways of dealing with it, please share with us yours. When researching the possible causes of all this we quickly realized that there is no central resource for parents to get information that’s easy to understand (not medical speak) and discusses the situation from the families side. What is it like living with someone who can stop breathing or have a seizure at any moment? How do siblings cope? How can you take vacations? What’s the best car seat to buy and on and on…? While we may not be able to answer all (or any) of these questions, we can tell you how we approached things, what worked and what didn’t and what we’d do differently if we could do it all over again.
The information here is all curated/created by us and is a reflection of our experience and how we see things. We’re not always right and are happy to be corrected or informed if we get something wrong, please don’t be shy in coming forward.
Stay strong, stay hopeful, stay positive.