Children’s Memorial Hermann Pediatric Epilepsy Reunion at the Houston Zoo (Fall 2013)

Here’s a little video produced at the Children’s Memorial Hermann Pediatric Epilepsy Reunion at the Houston Zoo this past fall (2013).  You can see Zane’s back at around 0:34, and his face at around 1:45.  🙂


2nd Opinion?

You know, with all the doctor’s we saw at our two stays at Texas Children’s, and the fact that we were following up with one of them who was familiar with baby Z’s case, it never really occurred to me to get a second opinion. I mean, we saw multiple fellows, attendings, and of course, tons of residents. Plus, where else was I going to find specialists in pediatric (infant) neurology. I thought we were where we were supposed to be. I thought we had the best of the best.

But, strangely enough, a second opinion just sort of fell in my lap. (Really. It’s a strange story that I’ll share with you soon.)

Anyway, now all the sudden baby Z has a 23-hour EEG scheduled for this week at another hospital with a specialist in pediatric neurology, and who further specializes in infants with epilepsy and Infantile Spasms.

I guess we’ll have our answers soon enough. I don’t want my baby to have IS, because it’s a worse diagnosis. But, if he does have it, the sooner he is diagnosed and treated, the better. If that’s not what it is, at least we’ll confirm it, and know that we need to try something else to help him. I just want him to get the help he needs.

Hmmm. Epilepsy or Infantile Spasms?

Our appointment with the neurologist (Dr. H) is this morning, and since I know that as often as he does have seizures, that he probably won’t have one during the time we are with the neurologist, so I decided to prepare by waiting and watching and getting a good video.  His seizures have changed, so I want to be able to show the doc.  I have also been doing my own research, just trying to understand a little bit of what is happening and trying to figure out how to help my little guy.  I’ve filled a 2-inch binder full of print-outs, notes, etc.  I hope I’m wrong, but I really want her to re-consider her diagnosis.  He isn’t responding to any of the three anti-seizure medications he is on (Trileptal, Clonazepam, & Keppra), and he continues to have more and more seizures.  From the research I’ve read, I’m concerned that he might have Infantile Spasms, rather than just epilepsy.  If you don’t know anything about epilepsy or Infantile Spasms, you might not realize the difference, but it is significant.  Basically, Infantile Spasms can cause the little one to regress (become mentally retarded).  But, if it’s caught and treated early enough, there’s a good chance the baby can progress and develop normally.

Why am I (just a mom) questioning a doctor (a neurologist, no less)?  Well.  I don’t know.  I wish I didn’t feel the need to.  But, I feel like all signs are pointing me toward this diagnosis and she’s just not seeing it.  She’s fixated on the EEG he had 2 weeks ago and the 30-minute worthless repeat.

Okay.  I need to tell you that I have been doing a LOT of research.  I mean, a LOT!  I realize that Infantile Spasms has a very specific pattern on the EEG called Hypsarrhythmia.  But, I’ve also read that an IS diagnosis is based on three criteria, but only 2 of 3 need to be met.  He most definitely meets the other two.

I just want her to watch the video and see the seizure activity.

Here’s the seizure from last night.  It starts about 16 seconds into the video.

I also stumbled upon a youtube video of a baby with IS that had seizures that are almost identical to my little one’s.  So, then I started searching Youtube for Infantile Spasms, and I started seeing LOTS of videos of babies who had seizures like my little guy.  I know that this particular “research” might not sound very reliable, but all these babies had seizures just like my baby’s, and they all had an IS diagnosis.  I just really hope she listens to me and watches the video.