IS

Hi everyone! I am Jocelyn's mom, Amy. I was inspired to write a blog to educate others about Infantile Spasms. Let's start with Jocelyn's Journey. She was born at 38 weeks. I had an uneventful pregnancy, great delivery, and wonderful 4 months enjoying my new baby. At about 4 months I began noticing Jocelyn withdrawing a little bit, not laughing anymore, not smiling and no longer focusing on objects or people. When we went for her 4 month shots and check up the doctor had noted that Jocelyn had a slight head lag and slowed in meeting her milestones. They wanted us to keep an eye on it and maybe talk about getting early intervention involved. Otherwise, Jocelyn showed no other symptoms. On November 19, 2010, I was feeding Jocelyn in her high chair and she rolled her eyes 6-7 times in a 20 minute period. I thought this was weird but she didn't do it again so I let it slide. Later that day we went to the mall to get her first pictures with Santa, (yes we have an adorable picture to remember the event lol) again she wouldn't look at us nor would she smile for the camera. We went to eat lunch and she did this cluster AGAIN. I was uncomfortable and knew in my gut that something was up. My husband, Mike, said, "You think something is up don't you? Want to call the dr?" I said YES! So, I called the pediatrician who had us come straight over to them to make sure this wasn't a seizure. The pediatrician did a thorough exam and said she didn't think it was and it was probably nothing but it might be a good idea to get an EEG done. She said we didn't need to go to the ER or STAT but definitely not 4 months from now. I told her if she could get in tomorrow we would go! She called me first thing in the am with an appointment at Children's Hospital of Philadelphia (CHOP). Again, she said she didn't think this was anything, nor did the neurologist she spoke with but better safe than sorry. BOY DID WE PUT THAT SAYING TO THE TEST! We had a 20 minute EEG and the EEG tech said "do you have an appointment with Neuro after this?" Well we all know this could never be good. She called the neurology resident to come and meet us up in the EEG. He said he suspects Jocelyn had something called Infantile Spasms and wanted to admit her immediately. WHAT?!? Panic hits! (Although panic set in, I was a little relieved because I KNEW something was up. Gut mom feelings is what I call it.)
We were admitted and stayed for 5 days. They did genetic testing and an MRI. MRI was negative (thank God) and the genetic testing ended up negative too. So what does this mean? It means she has an idiopathic diagnosis- no underlying cause. So we were told that this is the best type of IS to have because it seems to be the easiest to cure. SO they started us on a steroid/hormone ACTH. It was HORRIBLE! It turned my baby into a cranky, sleepless, STARVING, puffy baby. She ate twice as much as normal!! Anyway, she was on the high dose for 4 weeks and then wean for 6 weeks. At 2 weeks on the high dose they did a follow-up EEG that was better but still showing what are called hypsarrhythmias. So they opted for continuing for the next two weeks and did a follow up EEG on December 23. This one was clean of the hyps but showed left temporal lobe sharps (which were weak and unremarkable). She has been seizure free since DECEMBER 18 (which coincidently is my sister's birthday). We had a scare on January 22, and were admitted for a 12 hour video EEG. This one was clean of the hyps but showed right temporal lobe sharps (which were weak and unremarkable). They had moved?! The dr. said that this was a good sign because it probably means no focal point (or a malformation of the brain). We had our last dose of ACTH on February 1, 2011. THAT WAS A WONDERFUL DAY!! We went today February 15, 2011 for our post ACTH followup EEG today and this one was clean of the hyps but showed left temporal lobe sharps (which were weak and unremarkable). YAY!!! Two weeks off of ACTH and no return of seizures...GREAT GREAT GREAT NEWS!!! Of course we will be following up until the end of time but I'll take it!!

Every day I wait for a spasm, and watch her every move. I hope one day I can just enjoy but I am sure there will always be that thought. I hope to raise awareness. Jocelyn and my family have been VERY fortunate that everything has worked out! There are other's who aren't as lucky and I pray and wish for their recovery every day. My husband and I opted to join in a case study to hopefully help other babies!! I pray that this helps!

<3 Amy