Stop Logan's Infantile Spasms
.....A little over a week ago my son started making some movements that weren't normal to his demeanor almost like a hiccup or being startled. We went to Urgent Care and they pretty much said it's nothing to worry about kids do weird things as they grow and he'll stop saying it's Myoclonic Jerking. We made an appointment with our pediatrician and he said just about the same thing, but thought that it would be good for us to see a Neurologist. We attempted to make an appointment being told that it would be 5 weeks till we could be seen. We felt that was an extreme time frame and contacted our pediatrician again asking if there was anything else we could do. We were told that if his condition got worse or if we had any concerns to go to the ER (typical cover your ass statement). Being the parents that we are and knowing that something wasn't right and not settling for anything but the best we took our son to the ER at our local Children's Hospital this past Saturday. Immediately Logan was diagnosed with something called Infantile Spasms, a rare form of seizures, only about 2000 cases are diagnosed every year. Most cases aren't diagnosed for weeks or even months due to lack of knowledge of this confition in the medical field. Logan is undergoing an extreme medical treatment and testing. All signs look like we caught this early and our actions could of saved any long term effects from occurring, only time will tell. We will be in the hospital for some time, but Logan is a trooper and being tougher than his parents right now....lol.
I'm not looking for the typical Facebook post " Oh my God I'm so sorry what can I do to help" etc. that isn't the point of this post. But what Logan would like for you to do is share and like this post in hopes that he could help your child be diagnosed early if he or she has the same symptoms. And please all parents out there fight for your child and don't settle for mediocrity, you know your child the best, be their voice and act on your parental instincts and get the care and answers you deserve whatever your case may be.
Since he has been home he has started scooting across the floors. We give it probably another week before they have a mobile 7 month old. Please continue sharing Logan's story and wishing Brion and Tia positvie news when they meet with Logan's doctors and specialists in the next few weeks.
All of us would love to thank everyone that has helped Logan out towards the expense of his medication and hospital/doctors bills. It is greatly appreciated! There will be more uupdates on what is going on with his seizures in the next few days.