Category: Stuggles

Thoughts on a Bad Day

by James, posted in Stuggles

Today was a rough day for Super D. He spent a large portion of the day sleeping or just laying around. If he was awake today, he looked to be in a trance. No expression, no emotion, nothing. His day was plagued by seizures. He had an above average number of them today.

Days like today make me wonder about many things. The big one is what caused it. It is possible the ADD medicine did it. Of course, he could be getting sick. That always brings on more seizures. This is one of our biggest frustrations. While we have not found any external triggers for Super D’s seizures, the internal ones we can not control reek havoc on his seizure threshold.

It also makes me wonder what goes through his little mind during these periods. Certainly some of the medicine can cause depression, but how do you know if a nonverbal child is depressed from time to time. Does he wonder why this is happening to him? Is he even aware of time and what is going on during these periods?

These are just the things that go through my mind when Super D has a bad day. I wish I had the answers, but of course my finite mind may not be able to handle the answers.

“Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more than food, and the body more than clothes?  Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they?  Can any one of you by worrying add a single hour to your life?” – Matthew 6:25‭-‬27

Our Story

by James, posted in Stuggles, Uncategorized, Victories

Daniel, affectionately known as Super D, is the third of our four boys. Our older boys developed normally and are healthy. Everything started out just fine with Super D. As time went on he got a little behind on milestones and was late walking and talking. It was not enough that we or the doctors were really concerned. Looking back, we can see the trouble starting as early as 10 months.

Then when Super D was 15 months old he was diagnosed with infantile spasms. Infantile spasms are a form of epilepsy which typically affects children under the age one, but a few, as in Daniel’s case, as late as two years old. The typical onset age of I.S. is around 4 months. The effects of the seizures on a developing brain are astronomical.

In Super D’s case, the activity is all over his brain. For him, the activity manifests itself in the form of a drop seizure. At the worst he was having 30 or more seizures a day. His were violent enough, one day I saw him flip head over heals from a seizure.

Now, 4 1/2 years later his seizures are better. We are down to a couple a day on average. When he has good days, we don’t have any major seizures, even though he will have 4 or 5 minor ones. When he has bad days, we have 5 or 6 major seizures and a few minor ones. We have exhausted all the “safe” drugs and are now on to the ones that have more side effects. This has led us to add more medicine to control the side affects of the seizure medicine. Crazy, right? But that is life with I.S.

Developmentally, Super D is at a 2-3 year old level in most things. Communication is the one exception. He is non-verbal and has limited signs. The seizures affect his short-term memory, making learning difficult. We also think the worst of the seizures are concentrated in the speech area of the brain, although the EEG shows activity over all of his brain.

Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light. –  Matthew 11:28-30