Mystery Lane

Mystery Lane

Thursday, April 21, 2011


It has been another crazy week for me and one that had a lot of something I don’t like – change.  I don’t deal well with change.  Even if it is good change, I don’t like it.  I’m a change resistor.  When Monday, Tuesday and Wednesday this week brought major changes into my life, Thursday was my day of just barely hanging on. 
We had an appointment with Jackson’s neurologist on Monday.  We were meeting to discuss some of the things that came out of the Seattle Children’s Hospital visit.  I had gotten a call on Friday from the nurse coordinator and she gave me a little bit of information that came out of the meeting to review the results of Jackson’s tests.  The gist of it is that Jackson is not a candidate for brain surgery.  His seizure activity is generalized, meaning it is coming from all over the brain and not just one area.  So there is no way to go in and “fix” the bad area causing the seizures.  I knew this was probably going to be the result but I still had a glimmer of hope that they might discover a part of his brain that could be “fixed”.  Hopes crushed, again.  I had the weekend to adjust to that news and was anxious to hear what Dr. Reggin had to say on Monday.  Unfortunately, he didn’t have the MRI or PET scan results.  But he had spoken with the lead doctor over in Seattle and had some options for us.  None that were good.  Basically our options were (1) new medications and/or (2) Vagus Nerve Stimulation.  We are going with both.  As Kevin reminded me, we have to get aggressive.  We have tried numerous things to get Jackson’s seizures and nothing has worked.  It’s time to stop dilly dallying around and take some chances for Jackson’s sake.  We are adding a new seizure medication called Sabril.  It’s not without risks.  Sabril has been known to cause permanent vision loss so Jackson will have to have regular eye exams.  The vision loss hasn’t shown up in patients until they have been taking the medication for at least 6 months.  We agreed to try Sabril for two months.  After that amount of time we will know if works.  If it does work and his seizures stop then we will have a choice to make.  An incredibly difficult choice.  Do we risk vision loss or risk the seizures coming back?  At this point I should mention Dr. Reggin and the Seattle doctors have clarified the type of seizures Jackson is having.  They are infantile spasms.  Do some research on them and you will find out these are the worst kind of seizures in children.  They can cause major damage to the brain and lead to significant mental retardation.  These are the kind of seizures that require aggressiveness.  In addition to the new medication we are going to move forward with the Vagus Nerve Stimulation.  I still need to do some research on this for my own comfort level though.  The VNS is a small implantation, kind of like a pacemaker, under the skin in the chest and in the neck.  It is programmed to stimulate the vagus nerve, which is in the neck, to reduce the frequency of seizures.  It works in about 50% of children.  It seems to be a fairly simple procedure at the hospital and would be turned on slowly about two weeks after surgery.  It may take a while to see any change in seizures.  Both of these things are a big step and a little scary to me.  But I have to get to a point as a mother where I am able to put my fears aside and do the things I am uncomfortable with in an effort to give my son a better life. 
Tuesday was Jackson’s last day at the Guild School.  It was crushing.  The Guild School and Jackson’s therapists have become a huge part of our life.  To leave a place where my whole family is comfortable and has gotten such great care and support is indescribable.  I know on some level Jackson is going to miss his “girls” and wonder where they went.  I will still be involved with the school, and think I always will, by being on the Board of Directors.  The Guild School is one of those places you just never stop supporting.  Even if your child isn’t going there anymore, there are other children like your child going there and getting the services they need.  That kind of thing is in your heart, you just have to stay involved for all the little kids out there that need that extra help.  Plus I have told the school’s director that someday I will work there.  And I will, so get ready for me Dick!
Wednesday we toured Jackson’s new school (Roosevelt Elementary) and had our first IEP meeting.  The tour did not go as I thought it would.  Quite frankly I was scared at what I saw.  The preschool classroom Jackson will be in has more children in it than we were told and they were all higher functioning than we were told.  As we observed circle time it was apparent that Jackson cannot, and isn’t anywhere near being able to, do the things his peers are able to do.  They are all walking, mostly talking, answering questions, etc., etc.  Then we watched the physical therapy time and we were able to observe a child in another classroom who is more at Jackson’s level.  That went better and we really liked the ideas the physical therapist had for addressing Jackson’s specific needs.  The reasoning for putting Jackson in a classroom with other children who are functioning on a much higher level was twofold.  One was that by having Jackson observe other students who are higher functioning and seeing how they behave and communication, it will motivate him to progress.  The other (and I think the main reason) was that the classrooms with kids who function around the same level as Jackson are all full.  The IEP meeting went fairly well and put some of my concerns at ease.  I am still fairly nervous and scared about this big change and how Jackson is going to deal with it.  It is going to be a lot for him to go from 1.5 hour therapy twice a week to school 4 days a week, 2.5 hours a day.  Hopefully it will all work out and if it doesn’t, we only have about a month left before school is out. 
As I said, change is upon us, some already here and some coming up in the very near future.  New medication, a new surgery, leaving a very loved place and entering a new unknown one is a lot to adjust to in the span of 3 days.  This week has reminded me of a quote/saying my mom lived by.  She was a recovering alcoholic and this was her AA mantra.  I’m not a religious person, but it seems fitting. 
God grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.

1 comment:

  1. I am so sorry to hear Jackson's seizure type is IS! That is what Callie had. Sabril was our next drug and we began making preparations for it... she had her baseline exam and we were ready to schedule her OCT study as soon as she had her next seizure. Thankfully they have not returned yet, but we will still go with this plan if her IS return. It is scary because of the vision risk, but the risk is much lower with short term use and I am sure they will monitor him closely. Sabril is supposed to be very effective with IS and we will be praying it will work with for Jackson! ((hugs))