Saturday, November 10, 2012

Where Do I Begin? Where Will This End?

Today was a hard day, a very hard day. And while I realize that it wasn't hard related to families with children in their last days or inpatient, or who have lost their young ones to Heaven very early, for me, it was a relatively VERY hard day.

For a couple months, Garrett has struggled more emotionally with more ticks, more "spacing out" episodes that we now think are seizures, increased anxiety, behaviors and outbursts. Today was the worst to date. He is suddenly scared to use the toilet, wash his hands, and take his meds. When I have to leave home or leave a place where he is, besides school or church, he loses it. And I mean frothing at the mouth, trembling, screaming, hanging on me, spitting at his caregiver the other day, even. He no longer can use "yes" and "no" independently. Everything is "yes-no," leading to some sticky situations as I though it was him being sassy, so I allowed his sister to pinch him when he would ask to be pinched and she would ask back and he would say "yes-no" and I advised her to pinch if he said yes or yes-no......didn't work. I learned he wasn't meaning to say both. He now dumps bottles of water upside down for no reason. He cannot answer why. He is once more dumping out his whole bowl of cereal more frequently and gets very upset about it when it "happens," and then he cannot answer as to why he did it. I though these were "behavioral issues" in the sense he needed reprimand, perhaps increased supervision at critical points like eating and drinking, and would be a "quick phase." But I know it is not the case. He is slipping. His mind is changing.

Good news is that we see the wizzard, the developmental pediatrician, in a week. This man is brilliant, yet very overworked/overbooked, maybe because his office is closed Fridays, and I HATE this situation because communication is very sparse until an appointment. Boy does he have a mother bear coming in next Monday morning ready to pounce on and rip into this disease!! I have typed out the med list and my concerns and observations. I have added even since I made the sheets today. Garrett's developmental therapist is accompanying us, and his new dog may come as well (COOL POST COMING ABOUT HIS NEW DOG!!!!) I think his DT has some great info to share as well, and she helps me see I am not crazy, but we both may be soon caring for Garrett!!! I believe it is time to wean him from his 3 mental meds and get a good baseline, then start over with treatment. What I am seeing in Garrett's interaction with Grouchy, his DT and me is classic Obsessive Defiant Disorder, or ODD, but I will punch the doctor who gives me the classic treatment protocol of family therapy and counseling. I mean it!!! This isn't stemming from any of the simpler problems like home life. This is his precious body being totally wrecked by Mito, starting with the brain. I so long to have my "developmental delayed, failure to thrive" baby back when the mental stuff was merely delay and not this terror. No joke, my son's mind is so twisted up in his little head, and he is miserable. No kid would CHOOSE to act out like Garrett is doing to this extent by choice. And yes, I have read the parenting books....tons of them. And yes, I have tried all of the possible strategies.

Most concerning is that Grouchy and I are certain we are seeing seizure activity, and if I think back through Garrett's seven years with us, and research seizures and watch more example videos, I believe now that Garrett has had seizures since very young. They have never been caught on camera that we know....although old videos of him as an infant may hold some clues. I am certain we are seeing them now, but they are not the classic Grand Mal seizures that most people imagine. They are times when he just loses his ability to be in the moment or takes an "absence." Sometimes they are more like jerking of the arms and facial expressions that do not match the mood or situation. So then the questions remains: Is this new, or are we just only now realizing they are happening. I will try to catch them on film.

So after the worst behavioral day to date, I felt bad asking his DT to stay later so I could go with my husband and daughters to hear Lee Strobel, author of The Case For Christ and other books, at our church. I decided to brave it with Garrett and let Oscar just take the girls and enjoy. That way I could leave if I needed to. I never in a million years expected Garrett to be able to sit still in the sanctuary and listen to a speaker. OH MY WORD. He did it!!! Besides the obsessed whispers "Okay, goodnight" over and over and over as he apparently associates goodnight to quiet, he did it!! I enjoyed hearing Mr. Strobel's testimony, and I found it rather telling that my son could reach such behavioral greatness in church, no less!! God has a brilliant sense of humor and grace-giving capacity!! Just when I had almost lost all hope!

As far as the future and that outlook in my sights, I am trying not to go there at all. While some people in our lives love to encourage us to the point of insinuating that Garrett will get better and better, I am no longer in that camp. Yes, he is learning letter sounds and seems like he will someday read, but with the behaviors evolving into larger monsters like his touching his DT on the boobs and now offering to hurt people, I just cannot bank on the odds the future is going to be anything wonderful. I truly pray for my baby to be back. I miss him!!  Mito sucks.

Goodnight and Godspeed.


  1. It sounds so tough! I'm so sorry you guys and sweet Garrett are going through all of this. I pray that one of his doctors will have insight into how to help him through this a bit better. It is so complicated when nothing is "simply" what it is, but instead it is a side effect of the few docs understand what that even means! Hang in there.

  2. Sometimes we need to say to God WITH BOTH BARRELLS: HE'S YOUR SON,TOO!!!!

  3. I am so sorry. As you know, I know the ferocious, ugly seizure monster all too well. Mito does suck, and it also sucks to have to see things changing in a negative direction. I will certainly keep you guys in my prayers with all this new behavior and the possibility of seizures.

    Xoxoxo Deb