When we started this journey, we like others took video. I never posted it however, because quite frankly, this was a very short part of her journey. And everything happened so quickly, I just never dwelled on this media until recently. And lately, I have had numerous requests for “what did it look like for Savanna?”
She presented classically as do some infants with FCD (focal cortical dysplasia), meaning a severe structural problem in one are of the brain that affected her brain globally.
She did have “hyps” (hypsarrhythmia), a specific kind of chaotic brain wave pattern, diagnosed only with EEG (electroencephalography equipment, i.e. all those electrodes glued to her head). She had the clinical presentation of the Infantile Spasms, as seen in these videos. Rebecca had noticed the regression.
It was emotional for me to look back and watch these videos with my current level of knowledge of what it really meant. We knew nothing of what we didn’t know.
You can hear this in Rebecca’s voice in the first video, as Savanna was experiencing a cluster of IS (Infantile Spasms) before we knew it was IS, (or West Syndrome).
These videos are just a few days before diagnosis. You can see in the first one, where capture begins in the middle of a cluster, that the spasms were rather violent as she was very healthy at this stage.
The second video starts mid IS cluster, and ends with a complex partial seizure. During the IS cluster, you can see the momentary collection of wits in Savanna as she cries, then it just all goes away, and “Boom!”, a seizure. She experienced a classic ‘salaam’ seizure pattern (in clusters of about 8), where her head and arms flew outward and then immediately contracted inward in the matter of a second or so. She always had a right to left roll of her head as well which I think was indicative of the FCD.
At about 49 seconds the complex partial seizure starts. It is not a cluster, but just one seizure that lasts about 25-30 seconds. There are no words to describe my feelings when I hear her single sneeze at about 10 seconds into the complex partial seizure. This would become a trademark I could count on later in her life.
The third video is another collection of Infantile Spasms. She is more tired in this video, as the seizure are taking their toll.
The final video is in the hospital after an unnecessary ordeal in the pediatric ER and several hours of VEEG monitoring. This was one of many events caught during our first VEEG, which went for nearly 36 hours.
Pediatricians and PA’s are the first to see a child presenting in this manner. Parents don’t know the emergent nature of the situation, they just know something is wrong. Many doctors might mistake this for reflux, Sandifer’s syndrome, or the Moro reflex.
If you suspect your child has this condition, I would recommend the following action:
- Take a lot of video. Try to get the entire body in frame.
- See your pediatrician first, with video in hand.
- Email the pediatrician videos.
- Be as pushy a necessary to get to the doctor, but a good video seen on the doctor’s phone between clinic visits will drive action quicker than just being a pain in the ass on the phone.
- The pediatricians consultation with a neurologist can streamline your experience in the emergency room. While this is an emergent matter, it is not immediately life threatening, and therefore not a condition properly handled by most Emergency Rooms. This is not judgement of emergency rooms or their staff. Rather, it is recognition that they are not staffed, equipped, or trained to diagnose and treat this condition with authority. They will initially go down a path of eliminating possibilities of what might be provoking the seizures, which is noble and correct, but an endeavor best addressed in an in-patient setting. Unfortunately, one must typically penetrate the membrane of the ER to access help in this scenario.
- Get informed. See the Links and Resources section of this blog for a start on where to go for information and help.
Those videos bring back so many memmoreis. And look so much like Colbey Raye’s first seizures. I have a million videos on my phone as well. I think about you and your family often. You are in my prayers.
These videos by themselves are disturbing, but to the experienced parent they can really be emotional. I know I shed a few tears as I watched them, seeing all the future events flashing through my memory….
Really glad to see Colbey Raye doing so well after her recent second surgery. She is such a miracle.
Thank you for sharing these.
God Bless you!!!
Thank you God for making her so much better. Ken, hopefully other parents who see this will be able to get help too
Gotta be honest, I read the post, very informative, I liked it. I didn’t click a single video link. No offense. They get to be painful for me to watch. I do VERY much appreciate you posting them.
Sometimes I wish that I could reconfigure my Google account linkage with YouTube and so forth, because my IS videos are in there as uploads, and a couple have a lot of views. They are informative, and it’s good we share the experience, but when I stumble on one by accident it rips me up.
But the solution would seem to be to have to create an entire new Google identity, and to do that? Ergh…major….pain….
This post wasn’t for you, well, you know what I mean – so no offense taken in any way. Thank you for reading the rest and commenting. I expect most in our shoes see these posts and more or less look away.
Ugh…technology. Such a pain sometimes.
Thank you for sharing. Information is power, even as it is painful. Savanna has come so far. You and your wife are amazing parents.