Friday, May 6, 2016

Botox....It's Not Just for Wrinkles Anymore


So...you know Botox? No you don't! Okay....maybe it's just me. Maybe,I don't didn't know Botox, but I am learning.

This has been an interesting week. Interesting in the fact that I have felt awful. I think it is the change of seasons along with maybe having a bit of a bug, but it has made me wish I could crawl into bed and stay there until I feel better. Unfortunately, life is not as accommodating as I would like it to be, so.....I lay down when I can and carry on with life as best I can. Yes, I will survive, but it hasn't made this screwy week any easier to deal with.

Monday, David had Botox injections. They are likely to be the first of many in the next couple of years. Yes, I said Botox. I know....crazy right? If anyone in this family needs Botox...... I will not even finish that sentence.

Botox is something that was brought up to me about a year ago. The neurologist originally brought it up and thought that somewhere down the line David could benefit from the procedure. Not knowing for sure how David could possibly benefit from Botox, it was one of those things that as a special needs mom, you kind of let drift out of your brain or file it somewhere in the back of your mind under "I'll think about it later."

Later came, when David started going to Heartsprings for physical therapy(PT). The PT loved the things that David was accomplishing but she felt he could do more with a little help. That help she felt could come in the form of Botox. So I unfiled the topic and asked her more about it.

David already has a device implanted in his abdomen which is called a Baclofen pump. Baclofen is a muscle relaxant that is often used in kids with cerebral palsy, as their condition causes their muscles to be very tight which makes, walking, using their legs, feet, arms or hands very difficult if not impossible. In kids like David, if the Baclofen pump is implanted, then they get a steady and constant dose of Baclofen which helps to loosen the muscles. David's upper body is pretty good, but his lower body had been very tight which made PT difficult and walking almost impossible. Once the pump was implanted his muscles became much easier to work with. The problem with the pump though, is that it is kind of an all over agent. It can't really target specific muscles. which means some muscles get looser than others and then that can be a problem. This is what we found with David.

If you see the videos I post of David riding his bike or walking with his walker and you notice that he looks awkward or seems to be dragging his legs a bit, it is because his hamstrings are very tight and can't carry the load of his body properly. They are making his other looser muscles pick up the slack for what they should be doing. Valerie, his PT felt that if he got Botox in his hamstrings then this might loosen up only those muscles, thus making it easier for him to strengthen them. We went back to the neurologist and he felt that she was right and so Botox it would be.

To be given the injections, David had to be admitted for outpatient sedation at the hospital. It really was much easier than other outpatient "surgeries" David has had. They bring him to a hospital room and everything is done right there from start to finish. I haven't decided yet if it is an upside or a downside that I was allowed to stay in the room the whole time or not.

The procedure was a little rough for David as they had to put an IV in and his love of IV's went out the door many many hospital stays ago. It takes a crew of 3-4 of us to hold him down as he just freaks when he knows they are going to do it. It doesn't help that his veins fold, roll and run away every time a needle comes near them. A dose of oral Versed and 3 wildly uncomfortable sticks (for all involved) later, and he was good to go.

They then put him under, where he was in a half awake, half asleep stupor. They need his muscles reactive, but his body feeling or more likely remembering nothing. In the room at all times are the neurologist, the anesthesiologist, nurses, students (it's always a teaching moment with David) and me. The doctor then injected David in each hamstrings with the Botox. He used a long needle attached to a machine that I believe was showing waves of his muscle activity.

The actual procedure only took about 10 minutes and they said he should come out of the anesthesia within an hour. Two and a half hours later, we were still waiting for David to wake up as he slept a deep, snoring sleep.  Once he was awake though, he seemed fine and they said he was good to go to school the next day and there should be no side effects or issues. You would think by now.....we would all know David better than that.

So what is the end game using Botox? The way the Botox works is that every day we will see more and more looseness in his muscles. By about the 6-8 week mark he will hit the peak. During this time we will work those muscles, stretching them and making him ride his bike and walk as much as possible. In about 4 months, we will then do the procedure again. The goal is that each time, less and less Botox is injected and more and more hamstring muscle is built and strengthened. In the end, we want his hamstrings to be strong and do what they are suppose to without any Botox intervention.

After we got home, it was obvious Davids legs were very shaky. The looseness apparently begins right away. That night, he had a tiny seizure. It was so tiny in fact, that I wasn't even sure it happened, but with the stress his body had been under that day.....I wasn't surprised.

The next day he went to school and when he came home, he was a little monster. Yes, I can say that....he's my child. I put him in the stander and he refused to get out after an hour and a half. He went into full on hit mode every time I tried to take him down. I am thinking that maybe that stretch made his hamstrings feel good. His circulation though wasn't liking it as much as his hamstrings were, so in the end, Mom won out. That night, David had another seizure. This time it was evident.

Over the course of the next 36 hours, he had three more. In the process of all of this, the neurologist and I were in close contact. Why was he having seizures? It could have been the stress of the procedure, out growing meds, the wind blowing the wrong way.....who knows?! Whatever it was though, we needed to get them under control, so he upped the dosage of one of his night time meds. Yesterday morning I kept him home from school because of his seizures and his less than sunny disposition. It had been a long night for all of us and quite frankly I didn't figure he would be any good at school. I was right.

He got up and played until about 11 a.m. at which time he crawled in bed and fell asleep. You remember that post procedure sleep I was talking about on Monday? Well, that is how he slept yesterday until 8 p.m. He woke up long enough to eat and then fell back asleep. He didn't move until I forced him to get up at 9 a.m. this morning. This is so not David. So, the neurologist and I had another talk. Apparently David is not handling the added dose of the med well. The doctor is however hoping that he was on it long enough to have handled the seizures. So as of tonight, we are back to our regular dosages and we will see what happens. We may have to play with meds for awhile, but Zombie David with the nasty attitude is not acceptable.

Today, David went to PT and his therapist had him riding his bike. His muscles aren't strong enough yet to pedal by himself like he was doing, but he was riding with assistance and with every pedal he was stretching and strengthening those little legs. So for now, my job is to put him in the stander daily. Schools job will be to make him walk and ride his bike as much as his strength will allow. The bike will likely be easier but the walker is still necessary. And finally....Davids job is just to keep pushing forward like he always does.

Oh....and a little update to project Fatten David Up. The 5-6 meals per day along with protein and good fats seems to be working. When he was at the hospital Monday, they weighed him. Since February, he has gone from weighing 74 lbs to now he weighs........87 lbs!!!! I am very pleased and so was the doctor. Way to go David!!!!

So there you have it. David's getting Botox and Mom's gray hair and wrinkles.....well.....they remain the same. Stay tuned!

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