Wed 11 Nov 2009
VEEG results and heading back to Sacramento
Posted by Webster Family Blog under Grace Health Updates
It took a bit longer than we had hoped, but we’ve received Grace’s VEEG results. After 50+ hrs of being hooked up and us witnessing over 12 *episodes*, the EEG is inconclusive.
The good news is no seizures showed up on the EEG, the bad news is no seizures showed up on the EEG.
No seizures showing up means Grace is not having the complex partial seizures that she had pre-op. This is truly fantastic news, but unfortunately both our local doctor and the neurologist in Phoenix did see the *episodes* while watching the video images. The problem is there was no corresponding seizure activity captured, so as a result the VEEG as a whole is inconclusive. These episodes could be caused by many things, including seizure activity (too deep in the brain to register on the EEG), hypothalamic rages, or a result of the traumatic brain injury as a result of the invasive surgery.
It’s almost as we are back to those initial days after Grace was diagnosed when we were trying to make sense of it all. Once again we don’t have a clear understanding of what is causing these *episodes*. I truly believe Grace has started to have gelastic seizures, but they’ve changed from what we typically saw pre-op. She now simply has moments she ‘checks out’ for a minute or 2 and then is very disoriented afterwards. She’s also having the more aggressive outbursts which bring back memories of the rage attacks.
Grace is now back on Keppra. She’s actually taking more than she did pre-op and it seems to be controlling almost all of the rage episodes, however, she continues to have the other type of episodes when she ‘checks out’. We are hoping right now that the Keppra continues to work, but realize based on our previous experience that we’ll probably have to modify meds at some point.
Tomorrow, we leave for Sacramento so Grace can have the Supprelin Implant put in on Thursday morning. This will eliminate the monthly Lupron injections, which causes Grace so much anxiety and days of leg pain. We have also noticed that Grace has more *episodes” right before and after her injection. We think this is due to shifts in her hormonal balance. The implant should reduce hormonal mood swings associated with the Lupron injection and subsequently we are hoping that Grace will no longer have the increase in episodes she’d experience every 28 days. The procedure is fairly quick but Grace will be sedated. Please keep her in your prayers.








November 11th, 2009 at 2:24 am
Thanks for the update - we’ve been wondering about the test results but disappointed along with you that the results are inconclusive. We’ll pray for an easy procedure on
Thursday. Sounds like Gracie will be much better off with the implant. God bless you all!
November 11th, 2009 at 8:32 am
Thank you for the update. hummmm…. I saw an episode on 60 minutes about the daughter of one of Obama’s cabinet (David Axelrod) members who has an implant that sends an electronic pulse that stops/confuses the seizure activity before it gains momentum. The child had seizures since a young age and no longer has them. After years of meds, she is med and seizure free. I can look for the info if you want to see it. Love you all. Hate, hate, hate those damn seizures.
November 12th, 2009 at 12:18 am
Thank you. You are amazing parents. I will keep Grace in my prayers.
November 13th, 2009 at 1:14 am
You all are in my prayers. May God give the Doctors the knowledge and insight to find out what is really happening with Grace, and the strength to you all as you go through this again. Please keep us updated.
November 13th, 2009 at 3:14 pm
I am so sorry for all the frustrating information and noninformation that you received this past VEEG test. I feel so sad that this continues to be such a struggle to keep Grace at a place of balance. I just want you to know I love you all and send you strength as you continue to work towards Graces recovery. You guys are wonderful parents, Grace is truely blessed to have you:)
xoxo,
Anthea