Good Morning Taryn,
I wanted to share with you and wondering if you can pass this along to family and friends at the crave team. Our son was diagnosed with a fairly rare form of seizure called Infantile spasms. We are home now on our 3 day of no seizures.
My point of this e-mail is to let others know about this. Our story is a long one and my husband wanted to share with everyone.
Most people brush this type of stuff off with the attitude its not my problem, however when its your baby who is going through this it changes your life. I would love for you to share to help other babies get help in time.
I never post things like this, but this I feel is something that every parent should know.
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. (video on link below)
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 condition 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.