Unexplained Twitching, An EEG And Something About Infantile Spasms
I was hoping to tell you this story after we got the results, sadly we’ve not heard from the doctors about the results of the EEG that John-Michael underwent. For those who don’t know what an EEG is (because I didn’t know until we experienced this one) here is the definition from the Mayo Clinic:
An electroencephalogram (EEG) is a painless procedure that uses small, flat metal discs (electrodes) attached to your scalp to detect electrical activity in your brain. Your brain cells communicate via electrical impulses and are active all the time, even when you’re asleep. This activity shows up as wavy lines on an EEG recording.
Why did John-Michael have to have one?
A couple of months ago we started to notice something odd in his behavior, especially when he was getting tired or just after taking a nap. The best description we could come up with is he twitches, but at the same time his eyes role up; and if he is pushed himself off the floor he loses his muscle control and generally face plants on the floor. It’s really painful to watch.
We were able to capture a portion of it on camera, take a look:
After we showed this video to our Pediatrician, she recommended we have an EEG done to determine the cause.
The Day Of The EEG Test
As you can see it’s kind of SciFi turned Science fact creepy! If they had him in a water tube, you’d think he was being grown instead of born. They stick all these wires around his head that then tape them all down so they can monitor his brain activity while going through various stimuli to engage different parts of his brain (at least that’s how it was explained to me).
At one point there was even a strobe light show which brought back memories of meeting John-Michael’s mommy at a dance club in Guam called “The Onyx”. It also activated the part of my brain that bugs out my eyes (I guess I’m getting younger everyday).
The technician at one point came in and placed his fingers on John-Michael’s eyelids to hold them closed, which he did not appreciate at all and I had to suppress my fatherly instincts over. All in the name of medical science, right?
I was able to capture a bit of video before I realized it wasn’t technically allowed.
We did this test over a week ago and even though I called for the results we still haven’t received them.
I feel like I should be concerned, but I’m truly not. I know that God has a plan for John-Michael’s life and mine in the process. Otherwise, I know that God wouldn’t have allowed me to be his daddy.
In that plan at this moment all I know is that we’re going to highlight how special John-Michael is to us and to everyone who meets him and let God direct this life for us.
Just know that if you’ve been told that your child will be born with Down Syndrome and you’re not sure about the quality of his or her life, may I suggest to you that their life no matter the circumstances will be an awesome one. Every Down Syndrome child we’ve met has made us smile and more importantly made us appreciate the life we’ve been granted and we choose not to waste time wishing for what isn’t and to just enjoy what is!
We hope you’ll come with us on John-Michael’s Journey. Subscribe, Like and then share and together we’ll brighten the world from Down there!
UPDATE: In the late afternoon, ten days after we had the EEG, we received a call from John-Michael’s Pediatrician who told us; the results of the EEG was a diagnosis of “infantile spasms”. Let me be clear, we aren’t saying over him that he has this diagnosis, but the doctors are concluding that he does.
What is it? According to a child neurology foundation website;
Infantile Spasms are an uncommon form of epilepsy. (It goes on to explain)
Infantile Spasms is a neurologic emergency that typically begins in the first 4 to 8 months of life and is characterized by flexion (bending and jerking) of the trunk (torso) or neck and extremities (arms and legs). An episode can range from a subtle head jerk to a flexion that lasts for a few seconds. Most often, the spasms occur in clusters.
And according to multiple sources this is more common in children with Down Syndrome but very often a missed diagnosis. I got this information from a great dad with a little boy with Downs named Noah: You can read his entire post at NoahsDad.com
“3 Symptoms Pediatricians Are Looking For In Order To Diagnose Your Child Infantile Spasms
Infantile spasms have three very specific symptoms for diagnosis.
- You have a brief spasm that looks like a contraction or arching of the torso with stiffening of the extremities. It is often described like a hiccup and that is about how long the spasm lasts. They usually come in clusters, and can appear painful and cause the child to cry.
- They are associated with developmental regression meaning that milestones that your child used to have are no longer there, such as not being able to crawl or sit up anymore. The child is usually less interactive and grumpy with this regression.
- An Electroencephalogram (EEG) shows brain waves called hypsarrythmia.”
What we know and believe is that we are certain to encounter many opinions and diagnosis related to John-Michael and we refuse to label him with any of them. Instead we’ve decided to stay focused on what we want him to be and not what we can see now; so what we do is declare over him the following:
John-Michael is strong!
With a long life God will satisfy him!
He is a high functioning child of God!
He is blessed and can not be cursed!
I could go on, but you get the point. Every label the doctors try to give John-Michael we replace with a label we believe is from God!
Because God is the Master Physician and the only one who can heal him; I certainly can’t remove Infantile Spasms from him and neither can any doctor. So, we put our full faith in Jesus Christ and wait for reality to catch up. And we know in the end God is always in control and He will determine every footstep of John-Michael’s Journey.