San Francisco Trip #1...

So it has been 4 days since we met with Dr. Sullivan. I am so pleased to say that we really liked him. I was not sure what to expect but thought it would be a little more clinical or stark. We were promptly taken back to have Raegan's vitals done and then what I assumed would be the wait for the Dr. I was wrong and pleasantly surprised when the Dr. himself came to get us for the appointment. Very warm joyful smile with his attention focused only on us. We were able to spend about an hour and a half with him. Very thorough, very detailed. Raegan of course was in RARE form so I  am SO THANKFUL that my sister was able to make the trip and was a great distraction even if with it taking at least four trips out of the room to go for a walk.

Let me say THANK YOU for all of the prayers, kind words and support. This has been quite the journey thus far. SO what did Dr Sullivan think? 

• He agrees with Dr Asaikar's findings. He saw the area of concern and we found out that her first MRI done at 14mons had a "suspicious" area that we can now see is the same area that has been localized. Her brain was just "too immature" to show the FCD back then.
• Her EEG shows ALL of her spikes on the left as well as her spasms. He says this is a good thing and that it was they had hoped for

So where to from here?

• Her medicine. We have now added a second medicine since her first one is considered a fail. Our hopes would be that one or a combination of medicines would stop the seizures
• MEG scan. This scan will be used to measure exactly where her motor functions, speech, vision and everything come from. The hopes will be that none of it come from or too close to the area where the FCD is at

Why would anyone be considered for surgery?

• So many questions. We asked if there was a chance that she could stay on meds and eventually be "healed or outgrow" the seizures. Here is his response:

It is possible that IF medication were to control her seizures she could one day go off meds.  I would say if we were able to get sustained control for a 2 year period AND her EEG was normal, then the probability of coming off meds may be around 10-20% (there actually isn’t very good data about this).  So since there are a lot of things that would need to happen clinically and with her EEG even to get to this relatively low probability, this is why we are considering surgery as an option.

• 10-20% chance that we could achieve the seizure free mark and a clean EEG. We also have to keep in mind all of the side effects that go hand and hand with all of the medicine and weigh the effect of not only her physical body but behaviorally and socially.
• He says that they advise that without all the further testing that surgery success of being seizure free is about 50%

As you can imagine it has been long this week. We just have not been able to truly grasp all of the info. What makes this journey even harder is that after adding the new medicine Monday night and going seizure free for FOUR days we were thrilled that maybe this combo would work. I am so saddened to say that last night I saw the first of two episodes. The first was ONLY TWO chin twitches so I was SURE that it wasn't THAT but just before bed out of the corner of my eye I saw the arm jerk and turned to see the chin twitches this time over the course of a couple of minutes. I.HATE.THIS

Please continue to pray, all our love and blessings to you!