A not so good day

The day started pretty rough...

We knew the waters would be a little choppy with all the Dr visits and travelling and such. We were hoping that Dawson would be in a good mood and maybe the come apart he would inevitably have at the Doctors office wouldn't be all that bad.

So much for that plan A

Dawson woke up screaming and crying ( which isn't unusual) and we were waiting for the
" Ok, Im good and awake now and in a better mood; sorry Mom and Dad for being grumpy yet again" but that never came. He was all sideways and not doing well at all while we were all trying to get ready for the 1 1/2 hour drive.

We figured once in the car, with the Backyardigans DVD going, all would be well....

Wrong again!!

He pretty much screamed and cried all the way to Huntsville, screamed and cried and threw fits while in the waiting room ( oh how fun) and things didn't get any better when we went back to be hooked up to the EEG. Once hooked up he did manage to cry himself to sleep for about 10 minutes. So we got 10 min sleeping and 20 min screaming and crying. Not a good ratio.

Now on to the good stuff...

His EEG looks a lot like it did while at UAB a couple of months ago. While awake, it looks good but when he falls asleep........ CHAOS

We were supposed to find out about what all was said about his case that was recently conferenced and guess what?? It wasn't conferenced on the date we were told it was going to be. She is not sure when that will take place but will let us know..... Ok that is a little frustrating. A simple phone call to let us know that the conference didn't go down would have been pretty beneficial to me.

We were also supposed see the Speech Therapist for a full evaluation and she called in sick today. That's strike two!! But to be honest, the way Dawson was acting, I am so glad she wasn't there. There was no way that was going to be productive today.

We asked Dr Bebin " Ok, outside of his case being presented at conference, what is YOUR opinion about surgery based on what you know and have seen?" to sum up her words in a nutshell because there was a LONG conversation about this.. At his age, if your going to do brain surgery you gotta KNOW exactly what your dealing with and she just doesn't feel we are there yet. She gave example after example of some of her patients that were in uncertain waters as children but as they got older, and the testing became more sophisticated, and the dust settled a little bit, and the brain matured, it was then that a very clear picture emerged and surgery became a very viable and successful option. She thinks that at this point in time,there is just too much unknown and would not recommend him for surgery.

Then there was a long conversation about the Vagus Nerve Stimulator. http://en.wikipedia.org/wiki/Vagus_nerve_stimulation

She feels that his seizure type makes him a good candidate for this surgical procedure to gain better control of seizurs.

The plan for now?? We are going to continue on the med road we are on for right now. We are very very slowly going to continue to reduce Keppra. She feels that he is very sensitive to the side effects of this drug and is a major contributing factor to his behavior problems. BUT...

She also feels that Keppra is playing a considerate role in controlling those big seizures ( Grand mal and tonic) that we saw several months ago... So as much as we would love to kick this drug to the curb, we kinda never want to see another one of those seizures ever again. So were balancing a fine line between nasty drug side effects and controlling seizures.. BLAH!!

We also talked about starting Depakote. She is going to talk to a metabolic specialist tomorrow and get a second opinion. She said the reason for the caution is she doesn't want this drug to unmask some metabolic issue that hasn't been discovered..... Not real sure what shes talking about here but the possibility of us using the drug is down the road a piece.

The ride home wasn't quite as bad as the ride there but geeze, we were glad to be back home. I think he knew where we were going to begin with. He understands everything we say. He heard us talking about it this week and I think he just didn't want to go, and he sure didnt want to be there once we got there either.

So kinda mixed emotions about the day. Didn't get everything accomplished that we wanted to but hey when is that ever not the case right??

This evening little buddy has been in a better mood, managed a trip to the pet store and drive thru at Mcdonalds, and is contently snuggled up next to mommy. I'm going to go ask him if he minds if I cut in..

Thanks to all that were praying for us today. Feel free to weigh in on Vagus Nerve Stimulator, Depakote, or anything else for that matter.

Love to you all

Jeff and Allison