Closing the Gap: The First Two Weeks on Carbamazepine

We are now at the end of the second week on Andy’s new medicine, Carbamazepine (Tegratol), and so far, we have had no adverse side effects.  We started him on a small dose of 2.5 ml (50 mg) twice per day for the first week and then increased it up to 5 ml (100 mg) twice per day for the second week.  We will continue to increase up to 10 ml (200 mg) twice per day and then get some blood work done to see how he is doing.

No Adverse Side Effects

Our doctor prepared us for the worst by telling us all of the bad reactions to look for; bad rash, grand mal seizures, and discolored urine, etc. We even received a prescription for ??? to have on hand in case of a seizure lasting longer than 5 minutes. That was the one side effect, out of all of them, that scared me the worst. Just thinking about what I would have to do if that happened, insert a medicine in a place I DO NOT want to see on my 12 year old son, sent me into near panic attacks the days leading up to Day 1.

Not only did I have a prescription in case of emergency, I armed myself with support too. As the kids were off school on that Friday and Monday (Easter Holiday), Dan and I both opted to take a day off work and asked one of our babysitters to come as backup. That Friday, as nervous as I was, we tried to make the day as normal as possible for the kids. We played with the kids, building Lego houses and watching videos. Then because Andy wanted stars, we took a trip to the store. We went to Walmart for his favorite foam stars, then Good Will for some much needed shorts, and an Easter dress for Katie. All the while, I was watching him like a hawk and looking for any sign of a new twitch or an unexpected behavior. Thankfully, it never happened.

Improvements Already?

The rest of the weekend and into the next week, Dan and I watched and waited. We were rewarded, not only with no negative events, but, dare I say, improved behaviors? I know it is way to early to tell, but we almost immediately saw Andy be more calm and less aggressive. He even started talking more and his words were more understandable. At least, that’s what we think we have seen.

The hardest part of hope as a parent, is to have an unbiased opinion. In order to make sure we were getting the most accurate data, Andy underwent some baseline testing on the Thursday morning prior to starting the medicine. We will do some follow up testing in 3-6 months. In addition, only his school director knows he is on the medicine, but we are not telling his teachers yet. That way, we can get some unbiased data from them, similar to a “blind study” in the research arena.

Some of the other areas of improvement I’ve personally seen is cooperation with nighttime routines (taking medicine, brushing teeth, going to bed), cooperation with checking blood sugars, calmer behavior in the afternoons, and even less aggression toward me like pinching and hitting. I did see a little increase in the aggression a couple of days this week, but I was also down with the flu. Sometimes, when mom is down, the kids will try to get away with what they can. But isn’t that just a typical childhood behavior in general? LOL

Affect on Blood Sugar

One side effect we did experience, but were really expecting, was a decrease in blood sugars. The question of, if this medicine is closing the potassium channels in the brain, will it, by default, also close potassium channels in the pancreas, was answered pretty quickly. We checked his blood sugars before every meal, when he got home from school, and any other time he seemed to be acting low just in case. The lowest we have seen so far was a 54. That one happened on the first weekend on Sunday night. We were at the end of a long day, from church in the morning, to lunch and and Easter Egg hunt with the neighbors, to playing outside most of the afternoon. It was after 8:00 when I finally started preparing dinner and Andy started rummaging in the kitchen and trying to grab food from the cabinets, the fridge and even right out from my hands. He kept saying he was hungry and needed to eat dinner. Finally I stopped and realized what must be happening and checked him. He was at 54 so I quickly threw together a sandwich and some grapes so he could eat.

Since then, we have seen a couple of 60’s and 70’s, so we lowered his dose of glyburide by a pill in the morning and in the evening. He has stabilized for now, but we will continue to keep a close eye on that until we are sure he is in a better range. I guess the advantage to him being so stable for the last several years is that he is fully hypo-aware and can tell us he needs to eat when he starts to feel it. That was something we never experienced when he was a baby and on insulin.

Going Forward

We still have two more weeks of increasing and waiting to see if there are any issues. There is still a small possibility that seizures can occur, so we are not out of the woods yet. But with each passing day, I get more convinced this was the right move. We still have a long road ahead of us, but with time, hopefully, Andy can start to learn more skills and have a better future. Isn’t that what any parent wants for their child?

Towers of Pillows

Anybody who has a child on the spectrum or with SPD probably took one peak at that title and shook their head in understanding.  “Yep, my kid does that too” you’re saying.  Sometimes I look at Andy and just think, if only he could talk like a normal kid, he would probably be a genius!  He is such a little scientist.  I love to watch him work sometimes and try to see things from his perspective.

It was maybe just a year or two ago that I started really trying to notice what he was doing. What the autism community calls stimming (repeated self-stimulating behavior), I call him being a mini research scientist!  Having that in my bones (and wanted to act on that someday in the future), I started approaching my view through the lens of a researcher. What is he thinking?  What is he trying to figure out? What scientific phenomenon is he discovering today?

I think it started with the tower of pillows.  Now, he’s been doing this off and on for YEARS! In fact, I remember when he was around 5, we were creating a PECS system of cards for him and the therapist asked what some reward activities might be and building towers of pillows was definitely one he enjoyed.  It got its own picture card.  He loves piling the pillows up on top of each other as high as he can possibly go, climbing up to the top of the tower and then crashing down to the couch and burying himself in between the pillows. This is what we call in the Sensory world, a seeking behavior.  He is seeking heavy input. At times like these, he is in need of the pressure of the pillows around him. Maybe because he is having a hard time feeling where his body is, so crashing into a pile of pillows gives him that input he so desperately needs.

Eventually, he got hurt one time as he grew taller (seriously, what are we feeding this boy? He’s going to turn into the Green Giant!). We put a stop to the towers of pillows because it was getting dangerous.  But then he discovered BOXES.  Towers and towers of boxes. Now I know that most kids can build towers with boxes and you may be saying what is so special about that?  What is amazing to me is that, when the boxes have been played with so much that they start falling apart, he still has some uncanny ability to layer them on top of one another, move them ever so slightly, getting them to balance precariously, just so. And voila, he has a tower of 6 or 7 boxes that would make an architect proud!  I mean, sometimes, the towers he makes would put the Leaning Tower of Pisa to shame.  Of course, the whole point of the tower is to make it crash, which gives him that “controlled” loud noise that has always brought him so much joy.  I love hearing that boy laugh.  He has always been such a happy child.

Lately he has been back to doing the towers of pillows again, which is fine by me because I know he is just needing to get some input on his body.  He is having trouble with being aware of his body so he needs that to help him feel his muscles and feel where his body is in relation to the world around him.  So we let him and just take it with a side of caution, making sure he’s not hurting himself.  Maybe it’s because he is growing so quickly right now.  We haven’t quite hit puberty yet, but by the way he’s eating, we must be getting close to the raging hormones so maybe he’s feeling a little unorganized or unsure of himself.  So the towers are back and he’s as happy as ever with the building and crashing. Hey, at least it helps him sleep at night!

What do your children to for proprioceptive input?

I Can Do It Myself!

As Katie has grown up we have had both moments of clarity where we are absolutely sure she is displaying behavior that is typical for her age and moments if confusion where we are just not sure what’s normal. This morning was a moment of clarity as my daughter showed her true 3-year-old character. Stepping on the bus this morning, the bus driver, as usual, offered his hand to help her up. I, as usual, put my hands on her back to give her a little boost. With all her little personality, Katie looks up at the bus driver, shakes her little blind pony tail and demands “NO HELP UP!”

Her bus driver and I had a hard time trying not to laugh. She was so cute. This little bitty girl, barely 3 feet tall, trying to climb stairs that start almost at her waist. Holding onto the rail, she valiantly moved up each one to the top. The smile on her face when she reached the top and turned around to say good-bye made my heart sing! My little girl is growing up and she can do it all on her own.

I guess it sounds silly if you have never had to deal with the heartbreak of a special needs child. But those of you who have will understand how significant this little victory is for our family. Up until very recently, Andy has been content to just let the adults in his life just do things for him. I guess we’ve been enabling his helplessness a little by underestimating his ability.

But lately, Andy has started to take control of his world in small steps. For instance, tonight at shower time, he demonstrated a desire to wash his own hair and body. Then he wouldn’t let me dry him with the towel. Instead, he yanked the towel out of my hands and declared “Andy Do It”.

I am starting to see my babies grow in independence and have a desire to do things on their own. It gives me hope that they will be able to live independent lives some day in the distant future. Isn’t that what we all want for our kids?

(Side note: this post was actually written back in April or May and I just forgot to post it. However, I felt it was a good testament to their learning progress so I wanted to post it anyway.)