Brugada and sleep/rest

There is a definite link between a Brugada event happening during sleep and rest. Ive read so many articles that said its been called the “sleeping death”. Not that Im encouraging insomnia or for people to stay up all night but I had a thought.As I talk to more people, so many say they had a loved one who died during sleep or a nap. Many, many people!And even my doctor told me stay as active as I can because its REST that brings on Brs events. So that gives no excuse to sit around afraid. Being active can save you. Anyhow, of course this brings me back to my fathers death and the mystery of it. As youve read, he was mowing the lawn. Some say it could have been a heart attack, some say he might have felt something that made him sit in the chair he was found dead in. But I thought of something today…whose to say he wasnt taking a nap? I know my father. He worked VERY hard and napped often. Sometimes in the most odd places and could fall asleep in seconds.I always admired that about him…he can fall asleep like a narcoleptic! Not me! So my family and I assumed he was mowing the lawn, felt pain, or dizziness or fluttering and sat down and died. But maybe, being he worked the night before (he started his day at 2 AM) by time he was mowing the lawn he was just tired. Maybe mowing the lawn had nothing to do with it AT ALL! Maybe he mowed a couple of strips of grass, sat down for a rest or a little nap after being up all night and day and THAT triggered Brugada. My step mother who found him always said “he looked like he was taking a nap” meaning how peaceful he looked and his positioning. Maybe he REALLY was asleep and napping like he always did. I can go around and around with it and will never know. Its just a thought…

Advertisements

Our visit at C.H.O.P

Yesterday I took 4 of my kids to Childrens Hospital of Philadelphia, considered one of the best children’s hospitals in the world, possibly THEE best, so Ive been told by other doctors including Dr Brugada.People travel from around the world to go there and Im lucky to be 90 minutes away from it. My 5th child is almost 18 so she will see my EP next week.We saw a highly qualified, highly recommended doctor.Matter of fact, we saw 2. At the hospital TWO highly qualified EPs looked over my children and repeated the exam so the 2 can discuss our family and both agree on the proper treatment. I loved this because its like getting 2 opinions at the same time. For 4 kids it was a 2 hour appointment.It started out with weight, height, a pulse ox and blood pressure. Then we moved to have each child have 2 EKGs. One with the leads in the proper place and then a second where 2 of the leads are moved up. Sometimes moving those 2 leads can make a difference between a normal and abnormal EKG in the young so I was impressed that they did both. That was a total of 8 EKGs. The first doctor examined them, did a family history and had me discuss my story and then left. The second doctor, the head doctor/ head EP/ and professor at the teaching hospital, came in and repeated the whole thing. A nurse came in and had me fill out all the forms to fax right away to the genetic lab that I used to get the tests authorized quickly. Then the lab will mail me the test kits, I take them to the lab to have the blood drawn, mail it back to the genetic lab and wait. The lab calls the doctor who will call me with results. That should be in 4-6 weeks. The visit ended with her putting a 24 hour holter monitor on all the kids to see if any BrS signs show up in the next 24 hours. Brugada signs change day to day, hour to hour, so this assures an even more accurate reading. So where Im at right now is none of my kids are symptomatic (no fainting, black outs, v tach, v fib, abnormal EKG) Unfortunately a normal EKG does not mean you DONT have Brugada. Its a nice base line to see if they have a worse case by it showing up right away like me but in general plenty of people have normal EKGs AND have BrS. So what are we doing now? Their diagnosis will be based on genetics because lucky for me I am one of the few who tested positive.That means the geneticist can zoom right into the mutated gene I have, in my kids. If there is no mutation present on that gene, they dont have Brugada. Specifically for my family, a negative gene test and normal EKG is enough to dismiss them as not a BrS patient. This doesnt happen all the time. Plenty of people test negative for BrS but still have it. Thats because not all BrS genes have been discovered yet.So you can have it, but the gene is still unknown. The ONLY reason its that simple for my family is because they know the EXACT gene that would be passed down. So if they dont have that mutated gene, they dont have it at all. They cant have Brs from me WITHOUT having the same mutated gene as me. Having a positive gene test has simplified diagnosis for my family TREMENDOUSLY. So what happens next? We wait for results and find out through genetics who has it and who doesnt. She is very conservative with putting ICDs in. She doesnt like to give them to children if they dont REALLY need it because she said the risks are too high. Of course, if they develop symptoms , that would be another story. But for now, they are symptom free, and if they are positive, that still isnt enough to give them an ICD. And I agree with that totally. The children that are positive will be monitored by her every couple months to see if anything has gotten worse or changed.She is confident that although BrS DOES happen in children , it is much more rare and the danger zone indeed is the 20s and on. Of course there are children with severe Brugada but its not as common as an adult having it. She did say she would like us to buy an AED, an external defibrillator, for home. We need to treat fevers aggressively, avoid over heating in the warm weather and dehydration to prevent electrolyte imbalance and comply with the drug “do not take” list.We also need to take the kids to the ER for an EKG when they have a fever to see if their EKG switches from normal to abnormal with fever, which is common. I still dont know who has it, and Im still very nervous. But Im happy to have found a specialist with Brugada in children. I get tired of explaining to doctors and nurses and its nice to have a doctor who has plenty of other BrS patients.I know they are in the best care. I guess the good news is whoever has it, at this point, they dont require an ICD.Later in life will they need it? Probably because BrS only gets worse with age.But for now, while they are innocent children they dont need to worry about it. If they get symptoms, that changes the whole game so I will continue to pray for that. Whoever has it, has it. I cant chnage it. But I can at least hope they stay symptom free and if it does progress with age, I pray they have the wisdom to get an ICD to be protected…

Chapter 2 My Children

This isnt a long post.I just want to let you all know today my kids (4 of them, not 5) will see an electrophysiologist in one of the greatest children’s hospitals in the world. They are seeing a HIGHLY recommended EP. I doubt I will find anything out today unless one of their EKGs is abnormal. Most children have a normal EKG even if they have Brugada because its a defect that manifests later in life for the most part. There is always exceptions though. Alot of their diagnosis will come from genetic testing because my test is positive. Unfortunately it takes 6 weeks. I shoukd know more later than sooner.None the less, I will update you all later on what this well known doctor has to say about my 4 youngest. Talk soon!