Moving Forward

Deciding that I am a Mom Moving Forward…that many of us are mom’s or dad’s moving forward…has come from a number of years of doing just that. Moving forward…to the next therapy, therapist, research for diagnosis, medication, school. As parents of children with special needs we have no choice. The needs aren’t going to take a break because we need a breather, to collect our thoughts. Our children aren’t going to blossom to their full potential by us sitting idly by. I was reminded of this again this past Friday.

J's EEG Leads

The Good:

We have not pursued 24 hour VEEGs for over two years. It has proven to be too traumatic for J and every other person involved. Between the sensory concerns and developmental delays, trust, etc., laying down to have ice cold leads glued and air dried on his scalp has been less than successful without general anesthesia. However, with his recent success with, and the ease at which he allowed the IVIG infusion to take place, we decided to take a chance. After all, a person can only ‘go under’ so many times before chance is spread too thin.

We went for it this past Thursday. He. Was. Inspiring. The strength it took for him to overcome all of his challenges to do this…the control he enforced upon his overloaded senses…the flexibility he (and

the tech) showed in the way in which he would enable this procedure to be a success….this boy amazed us. He was successful.

Js EEG Screen
Js EEG Screen

The Bad:

I watched the indicators on the screen. Spike Event. XL Event. Whatever those mean. One in red, the other blue. The telltale increase the moment he went to sleep. Every ten-seconds, an event of some sort. Prior to sleep it was every 30-45 seconds…The sleep…well, was disrupted as normal. No REM that night. In fact, he slept 3 hours. Not for being in the hospital, but because this is what he does. This is how ESES effects him.

The next morning, Friday, I was not surprised when the doctor doing rounds burst into the room (energized because that appeared to be his personality more than anything) and told me that there was no change. No change. In fact, it may have increased. Increased. From 95% activity during his last VEEG to 95% – 100% this time. J is in a virtual state of lightning in his brain. A constant state of seizure on the brink. The only thing holding them back is a medication that he is already on too high a dose of.

Yet, I was not surprised.

Clinically, a massive improvement was born one day, three weeks after the infusion and has remained – unlike these improvements in the past. Language, use of language, conversation, focus on and depth of conversation all increased. Clinically, we saw an improvement. Measuring with the EEG, we did not. Surprise was nil as I saw the blue and red telltale indicators on the screen throughout the night.

Which brings me back to Moving Forward….

We move forward because we have to. The next thing. The next chance. We move on. Towards the investigation of the clinical improvements that sprouted. Could it be the EEG is lagging behind? Could it be that with another infusion, a little more time and a follow up EEG we will see the measurable manifestations of the clinical improvements? That’s our plan. That’s where we Move Forward.

And if that doesn’t work, we’ll Move Forward again…to the next level of intervention…to something else…because that’s what we do. We Move Forward.

Gina St. Aubin
Gina St. Aubin is a former Victim’s Advocate who now advocates for those with intellectual and physical challenges. Her eldest son is diagnosed with Cerebral Palsy, Autism, Sensory Processing Disorder, Electrical Status Epilepticus during Sleep / Landau-Kleffner Syndrome (a rare epileptic disorder causing verbal aphasia) and Developmental Delays. In June, 2012, her son also underwent a successful hemispherectomy. Gina is the editor, author and owner of Special Happens, serves as a member of the Board of Directors for the SPD Foundation, and resides in Colorado where she is a mother of 3, wife, blogger, writer and special needs advocate. You can reach Gina through various Special Happens connections on Facebook and Twitter, or email her directly.
Gina St. Aubin
Gina St. Aubin

6 Responses to Moving Forward

  1. I cannot imagine what it must be like to have a constant lightning storm going on in your head. I hate that the doctors didn’t have better news for you.

    Despite that, I think it is wonderful that J handled everything so well. That is worth celebrating. Rock on, J!

    • Thanks so much Grace. I think the same thing…I wish I had a day in his shoes so I could understand better, but I guess we do the best we can with what we can understand…..and he is a TOTAL rockstar!!!!

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