Darnit! I had decided that Nicky's Grand Mal seizure last June, was a one time event, brought on by his pneumonia and I let it go. But I was WRONG! Nicky had another full blown episode last week.
When I knew he was okay, I cried. I cried like I have not cried in a long time. It was the grief that keeps on giving cry. The cry of disappontment that screams out "What's next? Please Stop! Enough Already". When I finished crying, I had let go of the pain and disappointment and made room for acceptance. From there I knew;
The good news: this time I knew what was happening to him and it was really helpful to know that he wasn’t dying.
The bad news: he had another seizure, which means we have to add seizures to our life, officially. Never thought I would be grateful that Nicky has been diagnosed with an abnormal” EEG or long for the days of absent seizures. But I do.
The Ugly: As if the ASD bucket was not enough. We now have two separate buckets, two separate spheres of care: the Autism Bucket, and our new Siezure Disorder bucket. Two totally different buckets to live with and to manage. Two totally different life long challengers for a really terrific little man.
The Reality: We have handled everything else and we will handle this.
A little history: When Nicholas was 4 his developmental pediatrician noticed that he would freeze for a few seconds with a totally blank stare. She said she believed that Nicky was experiencing “absent seizures” and recommended that we get a 24 hour EEG which would gather more details than the 2hour we had already done.
We did the EEG, it was determined that he had abnormal activity. This EEG showed the the abnormal activity was happening at the same time, Nicky typically woke up at night. It was helpful to know that his sleep challenges were related to his abnormal activity.
He began taking a low dose of valporic acid/depakene to keep things under control, as it is not a given that an abnormal EEG will result in break through seizures. We all hoped that it would not go any further for Nicky, but it did. I wish we didn’t have this to contend with, but we do and that said I’m glad we have been treating it for years, because lord know’s where Nicky might have been if his abnormal activity had gone undetected.
A thought, if your kiddo is having sleep problems it might be worth it to get a 24hr EEG. If all is well...fantastic, if there is an issue better to know now.
More later.
I've read that seizures in ASD kids come with the onset of puberty. The percentage of ASD kids who have seizures is much higher than in the general population. Best of luck to you getting it all under control, Donna. Your burdens are many, but your beautiful attitude shines through your pain and makes us all work a little harder at being as good a parent to our kids as you are to yours. Luv, yr VT pal.
ReplyDelete"Anonymous" said it best, Donna. Reading the posts you provide - even if our kids are not in the same situation as Nicholas - makes us want to work harder to be half the parent you are...you are an inspiration to us all, and every time I finish reading a new post, think about what I can do today to be a better Dad. I almost always get on the phone and ask my son what I can do, how I can help, what does he need (he's in his second year of college). You get the picture. It's not likely Damek will ever meet you, but he does owe a debt of gratitude to one Donna Ross Jones, super-Mom and super human being. Thank you.
ReplyDeleteDean
Dang! You're totally right, Donna that it feels like another bucket for a great kid and family. My child's seizures came back at the onset of adolescence. Nonverbal. Autism. Seizures. Yep. What's next? While I'm an effective advocate for my child in education, I had to learn a whole new style and area of advocacy for an extended hospitalization from complications from a seizure. Because we've been unsuccessful at controlling seizures with medication, my child's being evaluated for Vagus nerve stimulation (VNS) at Lucile Packard Children's Hospital. We have to keep at it until its resolved. I get up and work at the Mom Job daily. You're right that you can handle this; you can be brave and do it daily. I know this for certain simply because I can. Tamera Leighton
ReplyDelete"Oh, Donna. I am so sorry that Nicky and your family has to go through all of this. Was he aware/scared? I sure hope not. Thank G-d you knew what was happening. Cry all you want....and then move on. You continue to be my hero."
ReplyDeleteRobin Howell
Aaron says he looked for Nick at church a few times. This explains what has been going on. Your posts are so powerful, it makes mothers like myself grateful to just have a pinch of this and that with both my boys.
ReplyDeleteYou are always so happy, so calm, and such an inspiration. You are an amazing woman, with such inner strength.
I am so proud to say I know you, We love you, Evyn and Nicky. He has come a long way.
Just wanted you to let you know that you wear many hats and you look great in everyone of them xo