Information Overload

Yesterday was Beau's neurology visit at the University of Iowa Children's Specialty Clinic.  It was such a cold day with sub-zero temperatures, but the sun was shining so that seemed to help!  I knew it would be an appointment with lots of questions and tons of information, but I didn't realize how much information I would be receiving.  I was so exhausted by the time I got home last night and I felt like it was information overload.

Here's what needed to be addressed at the appointment yesterday:

1) Beau is a very sweet and very loving little boy.  Many of you may (or may not) be surprised to know that Beau can throw some of the nastiest fits; screaming, crying, hitting himself in the head, throwing himself down, throwing items, etc.  Most of the time I am the lucky recipient of seeing these fits - as well as anyone else out in public when he decides to throw himself down in the middle of the store (making taking him to public places sometimes very difficult, especially if I have Delaney as well).  He does it some for Andy as well.  We aren't sure many times what is triggering the outburst.  Is it because he can't talk - literally stuck inside his own body?  Is it an over-reaction caused by the drugs that he is taking?  We have tried all methods to help calm him down, most times to no avail.  I love my little boy so much, but a family can only take so many nights of angry, frustrated outbursts.  Beau has been on the drug Keppra for several years now and I was warned of "Keppra rage" early on and also remembered families telling me their child had to be taken off of Keppra due to the tantrums and outbursts especially around the age of 5 (Beau is almost 6).  Beau is maxed out on 2 drugs currently - Keppra and Depakote - and they have been a good combination for him and have kept his seizures under fairly good control, which is what concerned me about even suggesting moving to another drug.  He has about 2 episodes per month where he wakes up screaming in the middle of the night and when I try to get him to walk, his right leg doesn't work.  This indicates to Dr. Joshi that he had a small seizure in his sleep and the pain from the muscle tightness wakes him up and then he experiences Todd's Paralysis.  They also indicate that his seizures aren't under COMPLETE control.  Those that are close to me know that my nights are not always calming and relaxing and full of sleep.  Dr. Joshi fully feels that Keppra is the cause for the behavior outbursts and says she has seen it many times.  Our next step now is to slowly start putting Beau on Lamictal with his Depakote.  Lamictal has to be introduced extremely slow and will take almost 8 weeks to get up to his dose.  Once that drug has worked its way into his body, the Keppra will be weaned away.  I really liked when Dr. Joshi reassured me and said, "Amanda, you have to do what is right for the whole family, not just for Beau".  Right now, I want my old Beau back that doesn't get so angry. 

2) Beau has always drooled a lot but lately it seems even more excessive, especially when he is concentrating or focusing hard on something.  This time of year it chaps his face and he can go through at least 2 shirts if not more a day.  We have tried scopolamine patches previously and he would pull them off no sooner than I got them on him.  She had mentioned over a year ago trying a medication to help dry him up but I kept saying no more medicine.  Yesterday I said, let's try it.  So, he has been prescribed glycopyrrolate to help control the excessive drooling.

3) Dr. Joshi has been wanting an MRI for about 6 months now.  She forgot to have it scheduled in October, so now she is wanting an MRI as soon as possible to compare to his MRI from 2009.  It will be a sedated MRI and I just learned it will be done on December 30th.  Praying that the sedation goes smoothly.  The last time Beau was sedated for a test, he went into a seizure. 

4)  Dr. Joshi brought up the topic of VNS during this visit.  VNS stands for Vagal Nerve Stimulation.  Here is a definition from epilepsy.com:

Vagus nerve stimulation (VNS) is designed to prevent seizures by sending regular, mild pulses of electrical energy to the brain via the vagus nerve. These pulses are supplied by a device something like a pacemaker.

The VNS device is sometimes referred to as a "pacemaker for the brain." It is placed under the skin on the chest wall and a wire runs from it to the vagus nerve in the neck.  The vagus nerve is part of the autonomic nervous system, which controls functions of the body that are not under voluntary control, such as the heart rate. The vagus nerve passes through the neck as it travels between the chest and abdomen and the lower part of the brain.

She had also mentioned it at his last visit but we decided to just keep pushing forward with what we were currently doing.  Yesterday she made it clear that her opinion is that we need to have the VNS implanted.   She states that Beau will always require medications to keep his epilepsy under control and we are starting to run out of options.  Rather than waiting until we are really at the end of the medication list, she wants us to start the process now.  She told me that there is a 50/50 shot that it will work for Beau and control his seizures.  She stated that that statistic was better than any drug since it can never be predicted how the body will react to the drug.  If the device works to stop the small episodes, we could look at slowly weaning him off of drugs or maybe having him on a lower dosage or lessor amount of medication.  The VNS would do the work of the drugs. 

Like any surgery, there are risks, but not like the risks of brain surgery.  We are talking very minimal risks.  She doesn't feel that Beau would necessarily be a good candidate for brain surgery to eliminate the seizures because the trigger spot seems to be located right near mid-line and the activity is then on both sides opposed to just one side.  With involvement on both sides, you can't do brain surgery.  To be honest - it's almost a relief that he isn't a candidate because I don't think Andy or I could agree to it.  This is her answer to helping Beau and being pro-active.  She knows we are running out of options with drugs and she wants to stay one step ahead.  I trust this woman completely.  She is referring us to a neurosurgeon there at the U of I and they will get the ball rolling for the implementation of a VNS. 

So there are the highlights of yesterday's visit.  He also had his blood drawn to check his levels and as always, he was tougher than I am when it comes to blood draws.  Life is going to be throwing him some changes the next couple of months and I pray for guidance and peace as we move forward.  Just another little bump in the road to make his life that much better and more manageable.  He's my little superman, so I know he can do this!