Thursday, November 24, 2005
Cameran was born February 7, 2005 weighing in at 9 Pounds and healthy. She has always been the sweetest baby girl and barely even cried. She ate wonderfully and was sleeping through the night at 2 weeks old. She was always ahead of schedule as her development goes rolling over at 3 months, sitting up at 4.5 months, babbling (she would say hi, da, ma, ga), laughing, crawling, pulling up on things and pushing self up to a sit position at 6 months. We never saw anything unusual from her except being startled very easy more than normal we always thought it was a little strange but never thought much of it.
Then on Monday, August 15, 2005 at lunch time she was in her walker playing and her head dropped down like she was tired. She lifted it back up and then she did it again, I then got the worse feeling in my stomach. I thought maybe she was just tired but then she did it again. So I picked her up and rocked her and she went to sleep. I still had it in the back of my mind something was wrong but couldn't be for sure she has always been healthy and never has even had a cold. So when she woke from her nap she was playing in the floor and started doing it again but this time her arms would come up beside her head. So I called her daddy immediately and he rushed home where he saw her do it too and thought maybe it was just something new she was doing. Her head would bob down as though you are tired and her arms would come up she would do this 10-15 times in a row lasting about 3-5 minutes. When she was laying down on her back her knees would crunch up and her shoulders would shrug. The more she started doing it we knew something was wrong so we called the Pediatrician. We took her in at 5:00 they looked at her and of course she didn't do it while we where there. They tested her reflexes, eyes and ears. They thought maybe she was getting sick and was off balance.....WRONG! We new in our hearts that it was more than that. So we went on about the day and she started having them in the carseat where I noticed her eyes cutting to the side when her head would drop down.
So come Tuesday morning, August 16, 2005 we called the Pediatrician back and left a message and described this to him he called back told us to take her to Vanderbilt's ER in Nashville immediately that it sounded like she was having seizures. So we went down and we began the process of describing what she was doing, we probably had 4 nurses and 10 Dr.'s come in for us to describe this over and over again. They would look at us as if we were crazy. We were there 5 hours before she did it again. They had wheeled me and her down to have an EEG done and we were sitting in the hall way and a woman walked by and caught Cameran off guard and it scared her and she went right into the head drops again(arms coming up also)! So they Dr.s stood around watching her and said it was definitely a seizure of some type but that's all they said to me at the time. So they told the EEG tech. to video her during the EEG. The EEG went smoothly they swab places all over her hair to get it clean then they place a glue substance on the swabbed areas then put the electrodes on the glue covered by a small square cloth on each one. Then they rap her head to keep it all in place(she looked like a mummy). This she has to lay very still for. Cameran was very tired from all the excitement and slept through the test which is what they wanted then woke her up at the last part of it to do the flickering light test. So after the test we went back to the ER room(which was really nice very kid friendly, they even had toys and movies for Caleb) The Dr.'s came in about an hour later and said she has Infantile Spasms and described it to us and the outcomes of it. They also told us she had Hypsarrythmia on her EEG which is a way to dx for IS. We were shocked and couldn't believe what we were hearing we had never heard of such a thing. Here we had
a perfectly healthy baby that has been right on track only to be thrown off course by this. They started her on 7mg twice daily of Zonegran and 5ml of Predinsone and that dosage would go down weekly.So this is where it all begins. She was dx with Cryptogenic/Idiopathic Infantile Spasms on August 16, 2005. Meaning that there is no known cause(Idiopathic) and Cryptogenic meaning there can be it just hasn't been found yet. We will keep this updated monthly as time goes on to give you all news on what meds she is on and how she is doing.
Heres are family:Mommy, Daddy, Big Brother Caleb & Little Cam(snoozin)