Adventures in.... What the heck is going on here seizures?

We rushed to Children's Hosptial Boston on Friday Morning because Keira is starting to not meet milestones and her seizures are increasing and evolving.  These symptoms all pointed to Infantile Spasms. If they are infantile spasms time is of the essence and you DO NOT fool around. They admitted her to do a 24 hour EEG.  I have been told this is the #1 hospital for child neurology/ epilepsy in the country if not in the entire world.  People come from all over the globe to go there for an opinion. 
We left the next day with good news and bad news.  We were told that her seizures were clonic (not myoclonic), but the Epilepsy specialist did not seem convincing. The major problem with Keira's seizures is that they are very rare. The other problem is that Neurology is not an exact science and every Epilepsy specialist will have a different opinion on what track to take. I think he wants to wait for the MD with more experience to give more info and decide the course of medication.  He was convinced they were not Infantile Spasms (which is a good thing), but also told us that other seizures can cause delays.   He said to start services locally, call our regular Neurologist to get med changes and to work with the other Children's Hospital Epilepsy Specialist to come up with a plan.  He did not want to step on anyones toes and add meds that may change in a month. We meet with the other specialist in Boston on Nov 9.  So close, yet so far away.
Our local pediatrician called this am and has already called in a referral for an eating clinic at Maine Medical Center. Keira will chew now, but now swallow. She is not gaining weight and has lost a little bit.  She also made a  referral to a Physical Therapy and Occupational Therapy clinic for an evaluation.
I feel good that we are doing all that we can to make sure that she can develop normally.  Anxious to hear what Mr. Expert has to say.
Thrilled that Keira is still the happy go lucky, easiest baby in the world. (besides seizures ;) ) 
Here are a few pics of our stay in Boston and video of what her seizures look like now are on youtube. Let me know if you would like the link.

Daddy Reading Pat the Bunny

The EEG machine with Audio and Video recording. You can see the little picture of her in the upper right hand corner. The squiggles are the activity being recorded in her brain.

Our view of Boston if you looked left.

The sign that says not to swear Daddy.  I also was recorded because I ended up crawling into the crib and slept with her because the cot was like sleeping on the floor.