I can't believe it has taken so long to get somewhere with Miss K's migraine research! I've patiently waited for her Pediatrician to get back to me but last week my patience ran out. Since July's little episode Miss K has experienced at least one day a week complaining of a headache, and at least twice a month of a full day of being so very pale, listless and quick to tears. Last week she had a headache every day, and one day of pure miserableness :(. So I called the Pediatrician and told him what was going on, he called all the medical colleges he had been trying to get a hold of and told them he needed their journals right that minute, they all responded amazingly! And he sent me all that they sent him then he read through them all and explained them to me in lamen's terms. Apparently this Spontaneous Hypothermia condition has many causes and many outcomes. So the kiddos with this that had MRI's and EEG's done were found to either be missing a core part of the brain that regulates temperature, having extra or missing electrical pathways in the part of the brain that controls temperature, having seizures that are causing a mix up in the brain, or have nothing wrong with the brain at all and are unexplained. The ones with the first 3 findings had no symptoms between Hypothermia episodes and were having the episodes quite often, some weekly and some daily. The ones with nothing wrong were having headaches and other symptoms between the Hypothermia episodes and the episodes were few and far between. Our Pediatrician feels Miss K falls in the last group since she is having headaches and symptoms since her episode and it's been months since that episode without us catching another one. This means we likely won't be doing any MRI's or EEG's on Miss K. But it does mean that we may need to put her on a migraine preventative, preventative that is taken daily because she's too young for us to give her a medication that is only given at the first signs of a migraine. He said it will be trial and error, we will have to try one medication at a time until one ends up seeming to work on keeping her migraines away.
Over the weekend I had a thought. When this all began we were told by our Pediatrician that the medication Propranolol that Miss K takes daily for her PJRT is also used as a Migraine suppressant, he was curious as to why Miss K was suddenly having Migraines while taking this medication. So I wondered if maybe she's in need of a higher dose of Propranolol OR maybe we need to go back to giving the Propranolol strictly every 8 hours rather than just 3 times a day (making sure to keep at least 6 hours between doses), I wonder if the long stretch at night and the short stretches during the day are confusing her brain with the Propranolol and maybe she needs it more consistently. I called the Pharmacist and ask her about it, she said "It's
a bit likely this could be the reason for her migraine breakthroughs,
it's definitely worth a try and just might be a part of the problem", I then called our Electrophysiologist and asked his nurse about it and she said "it certainly won't hurt but I can't say it will help at all". So starting tonight we will be giving Miss K her Propranolol every 8 hours, I'm not looking forward to the middle of the night doses but I'm more than willing to do it if it ends up helping!
This week we see a Pediatric Neurologist to talk about these migraines. I will be asking her about the Propranolol, hoping that this next few days might be enough for me to see if it makes a difference.