Infantile Spasms

Our life has been crazy this past month.  Between leaving Bellingham, moving in with Matt's parents, Matt starting a new job and me taking a month leave from work our family has seen more transition than we've ever seen before. We are finally in our new home in Bothell and trying to make this house seem like home again.  But, more on that later.

During my month of off work, which has been wonderful by the way, I've noticed many big changes in the kids.  Carter is now potty trained (woohoo!), Lucy started crawling, climbing stairs, pulling herself up and cruising on furniture and eating lots of yummy solid foods!  It's been so fun to be home and witness each new milestone.

But, along with those changes I also noticed something a little different with Lucy.  About 4 weeks ago she developed a facial and neck spasm.  At first I blew it off, thinking she was stretching a bit funny.  It was always random, lasted anywhere from 30 seconds to 4-5 minutes and she had 2-3 episodes a day.  I mentioned something to Matt and he finally saw it one night too.  After another few days I finally got it on video, started googling (worst decision ever!) and got a hold of her pediatrician.  After showing the video to the doctor, his concerns confirmed my fears.  Possible infantile spasms - a rare, infant form of epilepsy with not-so-great outcomes like autism and mental retardation along with awful side effects from treatment drugs like blindness, hormonal imbalances and high blood pressure.  We were immediately referred to Children's Hospital for an EEG to confirm the diagnosis and follow-up with a neurologist. 

Her appointment with her pediatrician was on Friday, Saturday and Sunday we moved into our house and Monday we found ourselves at Children's - the one place Matt and I never, ever wanted to be with our children. Needless to say it was a long weekend.

The staff at Children's is remarkable.  From the friendly greeter who met me at the door and pointed me in the right direction to the maintence man who personally walked us to the neurology department after we got lost; they all were so caring, kind and comforting....especially during a very emotional day.

Lucy was a champ during the EEG.  She screamed her little lungs out while they made markings all over her head, disinfected each site and then placed over 30 electrodes on her head with a gauze bandage holding it all in place.  Luckily I was able to hold and nurse her immediately which stopped the tears and she drifted off to sleep for a well-deserved nap.  The EEG was 90 minutes and I was the only one allowed in the room.  Poor Matt sat patiently (although his version of the story is probably different) in the waiting room next to the oncology unit, thanking God we weren't visiting that department instead. After a short nap, she played with toys and the test was over.

 We went immediately to meet with the pediatric neurologist, again, thanking God we didn't have to wait hours or even days to hear the results.  The very first thing she told us was.....the EEG was normal. Whew.  Huge sigh of relief and a few (happy) tears shed.  She told us with certainty Lucy did not have infantile spasms.

 But, the next question was, if not infantile spasms, then what?  Well, that is still to be determined.  2 other neurologists came in to meet with us and watch our video.  Unfortunately, they couldn't completely rule out a possible seizure disorder but said it was highly unlikely.  Instead, they think she has habit spasms.  Basically a quirky little thing she does for some unknown reason and will eventually grow out of.  It's hard to not have a true label on what she's been doing but we are so blessed that she is a very healthy baby girl.  Her development is right on track and the doctor's really didn't have any concerns, other than to just monitor her for any changes.

 So, we made it through our first very scary experience as parents.  Probably the most anxious/nervous/terrified we've ever been.  And Lucy, just kept on smiling, just like she always has.