New Appointment

Yesterday was a long day for us.  We spent most of it at Primary.  Bridger and I woke up early and headed in to get another EEG done.  He decided to be difficult today when hooking him up!  It was funny :) he is a strong little boy.  Once he was hooked up he calmed down and went straight to sleep.  What a turkey!  They were really great there and even let us go an extra 15mins just to make sure we got a good EEG session.  Next we hurried over to the library.  I wanted to get as much medical information on Infantile Spasms as I could.  I asked the librarian if she would search up stuff for me in all the books they have while I'm at our next appointment.  She was great. 

Sleepy Boy :)

We rushed on over to the third floor and went to our Ophthalmologist appointment.  If you ever go over there I hope your receptionist is Rick.  He is the nicest guy!  He chatted with me and made me feel right at home.  The eye doc was great too.  They went right to business.  I did feel a little rushed but he explained everything they were doing.  He also typed it all up and gave me a copy of our session.  They dilated his eyes and did little tests with him.  His eyes are doing great still. If you don't remember we go to the Eye Doc because of the vision risks that come with using Vigabatrin.
After this we went back down to the library and read up on all sorts of journal articles and books about Infantile Spasms.  There isn't a whole ton of information but it was enough to confirm everything that I have learned.  I was ready to meet with the Neurologist.
When we met with Dr. Zilenski we also had a social worker, Debbie, who came with us.  It helped to have a mediator with us.  She took great notes and talked with me afterwards.  I'd recommend having a social worker.  We began asking the Doc several questions.  We had both written questions and family members had as well.  He was patient with us, he listened, and explained everything in detail to us.  He even drew us pictures.  However he backed up our Doc that messed up and made the mistake seem minor.  We agreed to disagree.  He felt like everything we had done thus far had not been a waste of time either.
He did show a great amount of concern when we explained his left-sided weakness and that it was coming back again.  He agreed that another MRI should be done soon.  He was also able to take a look at the EEG we had that morning.  He is trained to read those but he wasn't the one reading them today so he couldn't give us a definite answer.  He did say that to him it looked like the hypsarrthmia waves were gone.
To remind everyone the hypsarrthmia waves are the crazy waves going on in Bridger's brain all the time and what defines his seizures as Infantile Spasms.  We were cautiously optimistic to hear this but did not want to get our hopes up.  Jake and I had discussed if the EEG did come back clean we would request a 24hr EEG just to make sure they really are gone.  The Doc didn't see any reason to do it but we insisted it be done.  I'd like it to be done when he gets weened off of the Vigabatrin.  I want to know absolutely sure that they are gone.  Even if they are I can't deny that I won't be paranoid about it for the rest of his Bridger's life.
With concerns towards our old Doc we still wanted a new one regardless of how sorry she was.  We felt more comfortable having someone else see us the rest of the way through.  He wasn't too helpful with this but said he would email the Doc we wanted and see if he'd be willing to work with us.  Hopefully he does.  If not we agreed to see our old Doc as long as she was supervised through out our appointments.  Please new Doc take us!!!
Once this was all said and done we had to go to ANOTHER appointment.  Bridger had an ERG done.  This is where they place a contact in the eye with electrodes hooked up to it.  They then flash lights into the eye to see how it responds.  Normally they like to put kids under for this but the Doc who does this (Dr. Creel) felt confident that he could do it without anesthesia.  He did too!  Bridger was a little ticked off at first but Dr. Creel numbed his eye right up, then stuck the contact in (EW), and did the test.  It seriously took less than 10mins.  It was great, disgusting (I hate eyeballs), but great!  I didn't get a picture of Bridger but this is what it looks like minus the eye patch.  Pretty icky.  Eyeballs.  GROSS.     

Ew.

 

After the ERG we went back and talked to the social worker and she made sure we felt like we were getting the treatment needed.  She also wrote down a list of everything that was said needed to be done and she is going to make sure that it does get done.  We really lucked out.  Get a social worker if you're going to be a frequent flyer at Primary.
Bridger and I finally got to go home.  It was a busy day.  I felt like it went well and we were heard.  I forgot to mention this but we were frustrated with how there is absolutely zero information available about Infantile Spasms and that the Docs never actually sat down and explained to us what it was and how severe it is.  He thought this was a problem too and is going to work on making discharge packets for families to take home with them.  He also wants us to look through the packets they make and let them know if it is helpful information and see if anything is missed.   

The best news is as we were driving home Dr. Zilenski called me and let me know he spoke with the EEG interpreter and she felt the same way as Dr. Zilenski.  Bridger's EEG is hypsarrthmia free as far as we know.  I wish that this was the end of the Infantile Spasm journey but we are still in the middle of the woods.  He could still have breakthrough seizures and they may also come back when we try to wean him off of the Vigabatrin.  We're optimistic and happy but still cautious as we continue this adventure of ours.