Tuesday, December 28, 2010

Day 1: Nothin' But Net

Today was a getting-to-know you and filling-out-forms sort of day. We went over Simon's medical and educational history about four or five times, and met the folks who will primarily be working with him - an OT, a PT, a Speech Pathologist, and a Nurse. Everyone seems really great. Very professional, pleasant, and patient with a little guy who was not on his best game today. We had at least four melt downs during the 2 hour evaluation, and no, they weren't because he lost at basketball.. or because he got his hands tangled in the net (oops...).

Behaviorally, we've been having some issues for the past six weeks, since Simon had the "status epilepticus" seizure (for about 2 hours) that necessitated his hospital stay, and the subsequent seizures that diagnosed epilepsy. The best drug to treat him with is Kepra, it is the safest and most effective medicine, and with it he hasn't had any seizure activity -- something we are truly grateful for, since it is nothing short of a miracle that Simon is still with us after what his little body went through. To be honest, we're terrified of a recurrence. The best analogy I have is that it feels like living on a fault line AFTER already having been through "The Big One." If I could move back to stable ground I would, but we can't, so bring on the seismic loading!

The fact that the Kepra is working is wonderful. The side effects are not. Because of the way the drug is metabolized, it causes a drop in serotonin, a "feel good" chemical in the brain. In adults, this causes depression. In kids, it causes increased irritability and defiant behavior... So, our once easy-going little guy now has a hairline trigger for full-on meltdowns. The first one he had after his release from the hospital was so terrifyingly intense I packed him into the car and took him to the pediatrician; I was convinced something was horribly wrong. We've been told that this may get better. We have seen some improvement, and it has also been suggested that enough B6 could help, so, I've ordered some (will let you know how that works!). In the meantime, we're working on helping Simon cope with his frustration and find ways to express himself without, well, screaming at us.

Anyone with a toddler knows about tantrums. They really do boil down to the child's ability (or inability) to communicate and feel understood under stress. The best tactic I've found (in case you need one), is to get on eye-level with the little maniac and use the simplest emphatic language possible to identify their emotion. For example: "Simon is MAD, Simon is SO MAD." After a while, they get that what they are feeling is called MAD and that you get that they are REALLY MAD. Then, they feel a little better. That's when you start with, "But you are OKAY. You can CALM DOWN. Let's take a DEEP BREATH." and  you demonstrate said breathing technique until  you are both in a better place. [For more on techniques like this check out "Happiest Toddler on the Block" by Dr. Harvey Karp. I found it pretty helpful (if a little silly in parts)]

For a kid with a communication disability this is really, really hard, but it was working! We'd been tantrum-free for months and when Simon got upset he would tell us how he felt, say that he "wanted to calm down" and started deep breaths on his own. Now, add the chemical imbalance and this has become damn near impossible. Tomorrow, add the casting and I'm talking about mommy going through a lot of wine...


Well, two steps forward and three (or four) back is how parenting sometimes goes, even under the best circumstances. Here's toasting a giant step forward into the unknown. Until tomorrow (the big casting day!).. thanks for coming with!

1 comment:

  1. Oy vey! I wish I was there to share in the bottle(s) of wine that you will be going through. Billy is on Kepra and I am grateful for it. Not any meltdowns with my 51 year old, but I have seen an increase in anger (for no apparent reason) and some depression. Hang in there - we all love you!