Tag: infantile spasms

The Next Line of Defense

by James, posted in Victories

Three weeks ago we finally made it to Denver for Daniel’s VNS surgery. We have been trying to get this done for months now. He was either sick or had been exposed to Covid the three previous times we tried to get it done.

You may be wondering what exactly is a VNS? VNS stands for Vagus Nerve Simulator. The VNS consists of two parts; a generator and a wire lead. The generator is a small battery powered box that is very similar to a pacemaker. it is approximately 1 1/2″ long, 1″ wide and 1/4″ long. A incision is make in the left chest above the nipple and a “pocket” is created under the skin to hold the generator.

Chest incision 24 hours after

The lead is a 18-24″ long wire that plugs into the generator. It has a coil of wire on one end similar to a corkscrew. An incision is made in the neck and then the lead is fished up to the incision in the neck. The corkscrew is wrapped around the Vagus nerve in the neck.

Neck incision 24 hours after surgery

The thought behind the VNS is to disrupt the electrical signals in the brain in an attempt to teach it to “forget” how to seize. It works by sending a small electrical pulse from the generator to the Vagus nerve. Initially it sends a 0.25 mA shock to there nerve every five minutes for a total of 30 seconds each time. By the end of April it will be at full strength which is 1.5 mA shock every five minutes for the 30 second duration.

There are two more functions of the VNS. Starting with the first ramp up, it will sense Daniel’s heart rate. When his heart rate takes a sudden jump, the box will sense that and send an additional shock to the Vagus nerve to counteract what it perceives as seizure activity. It also comes with a magnet that can activate the generator. When he has a seizure, we are able to swipe the magnet across the box and send pulse to the verve that acts as a rescue med.

Three weeks in we are hopeful. He had a seizure Thursday night. When I swiped the magnet, the seizure immediately stopped. Normally it takes a little time for a seizure to end. They normally look like a hill, with a peak in strength and then slowing to a stop. This went form full seizure to nothing withing seconds of swiping the box.

For us, this brings a lot of hope, hope we have not had in years. The medicines are working very well to control the seizures. Perhaps this will be the thing that brings them to a stop, or at least minimizes the frequency to a manageable state.

The Christmas Conundrum

by James, posted in Stuggles, Victories

December is here. Christmas is only five days away as I am writing this. My hope is you all have your shopping done and everything wrapped. We are officially done, well almost. A car that would not start took over the garage so one final gift could not be finished until today. I am a procrastinator, so I am usually finishing up right about now. Not exactly a good plan for someone whose sensory issues are triggered by crowds!

Christmas is an interesting time for us. This year Darlene and I had to have a discussion I never thought about. What do we do with Santa? I know, in the church world this is a topic that often creates disagreement and tension. My thought is to let kids be kids. Children need to have a good imagination and a sense of wonder. I also see how we can take the myth of Santa Clause and turn it around to create an opportunity to talk about the gift of Christ. So in our house we have run with the Santa thing.

This year we had the realization that Ben is old enough to recognize that Daniel does not have a “Santa” gift. Now, Super D has been the exception once the older boys realized the truth. I am not sure he understands the who thing, and even if he does, unwrapping presents is not his thing. Christmas gifts are too much sensory input for him. I am going on the idea that Ben will not notice what Daniel gets.

This year also brought on something I had not thought through before. We were shopping on Black Friday when my mom found a gift for Daniel, but was worried it looked too much like a baby toy. In the end she found the exact thing she wanted, but it made me think about age vs developmentally appropriate gifts. In reality this is an easy one, it is better to get developmentally appropriate gifts that he will play with, enjoy and understand.

If only it was that simple. I’ll admit, while it is best for Super D, buying a gift intended for a five year old for a eleven year old creates a little struggle inside. It is not a bad thing. It is, however, a gentle reminder he is not like his peers, or his siblings. Perhaps it is harder this year because middle school is eight months away. Maybe my subconscious has just suppressed it until now.

These realizations are not a bad thing. Daniel is not like every other child his age, and that is a wonderful thing. One of the buddies at church described him as a big teddy bear. He is super lovable and sweet. He also has an ornery streak a mile wide that can send me over the edge in the blink of an eye. The reality is, that is very normal behavior for a fifth grade boy! Moments like the gift realization are blessings that put the “normal” behavior into perspective which creates joy and not just frustration or anger. I wouldn’t have it any other way.

Consider it a great joy, my brothers and sisters, whenever you experience various trials, because you know that the testing of your faith produces endurance. And let endurance have its full effect, so that you may be mature and complete, lacking nothing.
James 1:2-4

Accepting the Unacceptable

by James, posted in Stuggles

We had a pastor who liked to ask, “Do we want a God we can control, or one who is in control?” For Christians, the answer should be simple. We want a God who is in control. Or do we really? Do we really understand what it means to have a Divine Being in control of all aspects of our life? That is something every person has to struggle with in life. That question is, at least on the surface, essential to coming to Christ. I did not really understand this until after Daniel was diagnosed.

For those who do not believe as I do, bear with me. This is about our life with Super D.

The first few weeks after after we realized something was wrong are a little bit of a blur. There was an ER visit and an appointment with a very old school neurologist. It all came to a terrible conclusion one Friday afternoon in the EEG wing at Children’s Mercy here in Kansas City. What should have been a hour long EEG ended up taking three hours.

At the end of it all the neurologist came into the waiting room to tell us how bad things were. The doctor stood in the door way of the waiting room. “Your son has a rare and very serious form of epilepsy. We can give him one of these three medicines,” he told us. All I remember from his talk is one was safer, one would only work for a while, and the third could cause permanent vision loss. His next statement shook me to the core. “There is a high risk of death by seizure with his condition.” And with that he left the room.

Yes, those were his exact words. This is bad. It was bad enough he wanted to hospitalize Super D over the weekend, even though they would not start treatment until Monday.

Talk about a stellar bedside manner!

This is something no parent wants to face. It is not fair. In fact, it is straight up crap. But that is life. We are not promised a life of ease or one without trials. Man screwed that up thousands of years ago. 

But, every day is a little easier than the one before.

There are moments of panic and days when it is not easy. Bad seizure days bring the reality that we may outlive Daniel back into my mind. We went through a period where Super D would stop breathing during seizures. Every seizure left me wondering, is this the one? The rare occasions where Super D sleeps in make me nervous, afraid of what I might find.

This is not something you come to terms with overnight. I struggled with the idea I could outlive my child for close to two years before I came to terms with it.

That brings us back to my opening paragraph. See, I wanted a God who was in control, until it came to Daniel’s life. Then I wanted to be in control. I wanted to fix it. The parent in me said it can not be this way, there must be some other solution.

Only, it is not in my control. There is absolutely nothing I can do to change the outcome.

It was only through Divine intervention that I came to terms with it. One day the LORD reminded me “He is more my son than yours and I will take him when I want”. I’ll admit, I still struggle with it. Some days are harder than others. Stories where children die are always brutal.

Regardless of how we view it, this trial is not in vain. God is in control. He knew Super D before he was born. As a good father, I want what is best for my kids. God, as a good father, wants the same thing for us. He is walking through this with us and is actively working on our behalf. He lifts us up during the bad times and celebrates with us during the good times. 

We may not understand it, for we are not meant to understand everything. We have hope and hope, at times, is all there is. 

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? But seek first his kingdom and his righteousness, and all these things will be given to you as well.  Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own. – Matthew 6:25‭-‬27‭, ‬33‭-‬34

Play Time

by James, posted in Victories

Super D has never really played with toys. Even early on he was not terribly interested in them. Looking back, we realize this should have been a red flag. However, his brothers were not into cars and trucks as much when Daniel was ready to play with them, so it doesn’t seem too odd. Every little brother wants to be like his older brothers and do what they do.

So flash forward 6 years. Now we have Benjamin. There is about the same number of years between Ben and Super D as there are between Super D and Aaron. Baby Ben was not our idea, but thankfully God knew we needed him and blessed us with a fourth. My grandfather was insistent the baby would help Daniel.

IMG_20160819_145525.010-1We had seen little signs of this. Daniel started showing interest in everything Ben had. Recently, we had a major breakthrough. Super D got a truck out of the toy box and sat down on the floor to play trucks with Ben. Not only was he playing with toys, and the correct way, he was intentionally interacting with another child.

This is a huge milestone for Daniel. Proper interaction with others is a critical life skill, one that we often take for granted. While it might be a minor step forward, in our world any step forward which is not followed by three back is a big deal. In our world, progress is always met with praise and celebration.

Shout for joy to the Lord , all the earth. Worship the Lord with gladness; come before him with joyful songs. Know that the Lord is God. It is he who made us, and we are his ; we are his people, the sheep of his pasture. Enter his gates with thanksgiving and his courts with praise; give thanks to him and praise his name. For the Lord is good and his love endures forever; his faithfulness continues through all generations. – Psalm 100:1‭-‬5

Tips and Tricks: Limiting the Wandering – Part Two

by James, posted in Tips and Tricks

The garage is a big temptation for Super D. I guess I should refine that statement. The tractor in the garage is a big temptation for Super D. He loves tractors. If the garage door is open, he is likely to be sitting on it. It was a great blessing to see him get excited over something until the day he discovered he could open the door to the garage and have access to the tractor anytime he wanted.

His new found “freedom” created new challenges for us. For a while a security chain worked. It was not long before he was tall enough to reach it. The big problem we have is, if I raise the chain up to where he can not reach it, my 10 year old will not be able to reach it either. Super D is almost as tall as he is.

The solution hit me one night when the janitorial closet door closed behind me at work. A storage room autolock knob would allow us to have access to the garage from inside the house while keeping Daniel out. The new knob replaced the existing knob without any modification to the door. We keep the key hanging on a cup hook across from the door. It is within Super D’s reach, but he does not show any interest in it at this point. Even if he did, he does not have the fine motor skills to get the key into the lock.

I also installed one on our downstairs bathroom to keep him from playing in there. The best part, each lock has a number on the package. If you buy locks with the same number, they will be keyed the same. In our case, the bathroom is across from the garage door. One key opens either door. The next door to get one will be the door to the basement.

One caveat, I would not use this method if your garage is one of the main emergency exits in your house. We have two other exits, so there is little concern about lost keys in an emergency situation.

What methods do you use to limit access to areas of your home which could be dangerous to a child with special needs?

The Power of Respite

by James, posted in Victories

When Super D graduated from the Britain Center, I made a promise to the ladies there. I promised them I would take advantage of the various respite nights around the city. I’ll admit, I did not want to follow through. I was not comfortable leaving him with a bunch of strangers. I figured I would take him once and then I had kept my promise.

I knew we needed some time away. Just a few weeks before, Darlene and I admitted to each other we were falling apart. It was not a go our separate ways falling apart. We just fought as much as we talked. I was stressed and very irritable. For some reason she does not like me that way. Go figure.

To make this easier, we chose the church where his former teacher attends. She said she would be his buddy for the night. Even knowing she was watching him did not ease my nerves.

Once I got over my nervousness, I was able to realize why the ladies at the Britain Center had been so insistent we take advantage of some respite. We left the baby with some friends and took the older boys out. We were able to relax and focus on Josh and Aaron. That is something which does not happen as often as it should.

It was great for Super D also. He was able to run and play in a setting tailored to children with special needs. He even made a friend he played with throughout the three hours he was there. That in itself is worth a fortune, as he normally does not play with others.

If you have the chance to take advantage of a local respite night, I would encourage you to do so. If your church is looking for a way to reach the world around you, a respite night could be the answer.

Carry each others burdens, and in this way you will fulfill the law of Christ – Galatians 6:2

Tips and Tricks: Limiting the Wandering – Part One

by James, posted in Tips and Tricks

One of the biggest safety concerns we face with Super D is his wandering. This is a concern with a lot of special needs children, especially those on the spectrum. Controlling the wandering while still providing a safe and pleasant environment is crucial. Yet this is often easier said than done.

Sometimes it takes a little creativity and, in my case, a little redneck ingenuity.

Our first wandering issue we had to handle was at bedtime. All kids like to fight sleep. However, with Super D, fighting sleep means running out of his room. He also wakes up in the night. It is vary rare for him to stay in bed all night long. If he wakes up in the night, he will run the house and possibly the neighborhood. We took a trip to Branson, Missouri, after the baby was born. At one point Super D woke up in the night, went to the kitchen in the condo, got some chips and then turned the tv on.

There are special beds out there which are basically large cribs, but for a 5-year-old who is the size of a 8-year-old and loves to climb, this would not have worked. I thought about turning the door knob around and locking it from the hall. However, I could not stand the idea of the closed room where he couldn’t see us and we couldn’t see him.

20160814_130324My solution, a modified dutch door. For those who may not be familiar with a dutch door, it is two half doors instead of one full door. In our case, I built one which is a little bigger than half out of four 2×4’s, a 2×6 and a piece of drywall left over from a renovation project. I built it large enough to use the existing bottom and middle hinge. That way the original door can be quickly reinstalled. A simple eye bolt holds it closed. Super D can’t climb it, he can see out and we can see him. While it isn’t the best looking door ever, it serves the purpose. In the event he would kick it or throw something at it, the drywall can easily be replaced. If he should fall against it, the drywall will give way and without seriously injuring him. If he was prone to fits or was violent at times, I would replace the drywall with a sheet of plywood.

How do you keep you roaming child in bed at night?

First Day of Kindergarten

by James, posted in Stuggles, Victories

Daniel started kindergarten this week. For him, it brings some much needed routine and structure. For me it brings some needed rest, but it is also bittersweet.

Kindergarten is a big milestone for Super D. Thirty percent of children diagnosed with I.S. do not live past the age of 3 and many who do develop Lennox-Gastaut Syndrome, which is a devastating, untreatable form of epilepsy. While he shows signs of LGS, many of the typical signs are not there. It is a cause for celebration.

Even though we are celebrating the milestone, there is still some sadness which comes from it. We have always taken the boys to school for the first day of grade school. This has been so important to me that when I had jury duty, I convinced a federal judge to delay court so I could take Aaron to his first day of kindergarten. This year was different. This year we walked Super D to the bus when it pulled up at the end of the drive.

So, why the change? The answer is simple, we felt it was best for him.

Life, to a large extent, revolves around Super D. My tradition of taking the kids to school on the first day needed to be put aside to make the transition easier for Daniel. In reality, it is more than that. It is a subtle reminder that there is no “normal”.

The first day was a win. Daniel did really well. He really likes his teacher and para. So do we. This is the beginning of a new chapter in the story of Super D’s life, a new and great adventure in the making.

When I said, “My foot is slipping,” your unfailing love, Lord, supported me. When anxiety was great within me, your consolation brought me joy. – Psalm 94:18-19

The Kindergarten Haircut

by James, posted in Victories

One of the things we had to accomplish before Super D’s first day in kindergarten was to get a hair cut. For any child this can be a challenge, but for a child with autism it can be a horrifying experience. I never know what a trip for a haircut will bring.

We have been very fortunate. In the last 4 years I can count the number of bad haircuts we have had on one hand. The worst one we ever had happened when I attempted to save some money and cut his hair at home. We managed to get it cut, however, it ended up being a bad experience. Lets just say, I learned my lesson.

Early on, we would take Super D to a chain that specialized in children’s cuts. They had pedal cars and power wheels on pedestals for the kids to sit in while getting their hair cut. For a child like Super D who loves steering wheels, this was heaven. At first it worked well to distract him from what was going on. As time went on, the novelty wore off.

We have been lucky enough to find stylists who have worked with special needs children before. This makes a huge difference in the experience. Having someone who has an idea of what it takes to beat the sensory overload is critical.

This trip went very well. The lady who cut his hair had previous experience with children, which helped. She also had a very quiet pair of clippers, which is a prerequisite for cutting Super D’s hair. She was trying so hard to get it perfect. Finally I let her know it was ok if it wasn’t perfect. In the grand scheme of things, a haircut that isn’t perfectly balanced is a minor issue.

I’m not sure she really understood the situation, but like most she didn’t ask. I hate that. I wish more people would ask those questions. When people ask about him, I have a chance to share our story, and more importantly, God’s story for Super D.

 “For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.” – Jeremiah 29:11

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