I called the neurologist's office yesterday and got a response in record time for them (under one hour). Natalie's EEG was negative! Whew! Even though I had feeling that it would be, it was still a relief to hear the nurse say those words. She will just have her regular annual neurology follow up with Dr Franz in June and hopefully no further seizures in the meantime (or ever again)! More updates to come soon about the cool stuff Natalie has been learning lately and about an advocacy training series that I've been lucky to be a part of recently.
Since I last posted, Natalie has been diagnosed with Strep two more times, most recently today. Yuck! The first time she had it in March it seems that the Bicillin shot she was given did not totally kick the bug so she ended up having to get three days of Rocephin shots in her legs (one in each leg, 3 days in a row). Poor Natalie, she was not a happy girl. After the Strep seemed to be a thing of the past, she developed a cold which lasted about a week and a half. Just as she seemed to be getting over the cold last week, her coughing started up again this weekend and she was having trouble sleeping because she was coughing so much. Last night she had a fever and we both slept poorly because she was up constantly during the night crying and wiggling around like she was in pain. She finally slept fairly soundly from about 4am to 9am. No school or work today and we visited the Pediatrician who did a rapid strep test which turned out positive. He said the only two shot options are Bicillin or Rocephin again so we went ahead with the Bicillin (it's only one shot). Hope it works this time. I told Natalie that I don't want to go back there until her 5 year well child visit in September. Hopefully, she will stay healthy until then!
A few weeks ago, we went to her Neurology appointment and saw the Nurse Practicioner who was very nice. She said that from the description provided, it did sound like Natalie had a seizure at school last month. However, before they diagnose a seizure disorder or put kids on ongoing seizure meds, there must be two "unprovoked" seizures, meaning two that are not related to illness/fever. Since hers occurred the day before the first Strep diagnosis it would be considered a "provoked" one. So, nothing changes now other than she was given a prescription for Diastat which is a drug to be administered should she ever have a seizure that lasts more than 5 minutes. She will have one with her all the time and a dose will also be kept at school, like with her Epipen. However, they do want her to have a sleep-deprived EEG and this will be done on Friday. For this test, she is to go to bed at her normal bedtime and will have to then wake up at 2 am and stay up until the test is done at 7am! Sound like fun? If it does, feel free to come over and help me keep her awake from 2am until 7am on Friday morning! I'll blog about how it goes afterward. Hopefully they will not find anything abnormal.
I am mom to Natalie Elizabeth, a strong and feisty 8 year old born, along with her twin brother Andrew John, nearly 17 weeks early on 9/2/06. Andrew passed away on 9/4/06 and Natalie spent 110 days in the NICU. As a result of her premature birth she has Cerebral Palsy. Despite her challenges, she is constantly doing new and amazing things and surprising everyone!