Well, we officially have the information on Nolan’s EEG to get his seizure work up and test for Landau Kleffner Syndrome (LKS). Read blog post about our Neurology appointment HERE. The appointment is in 2 weeks, which is actually sooner than we thought, so we are appreciative, but it also brought on a lot of rearranging and planning for the next 2 weeks.
We have since found out that the EEG we will be doing is not only overnight like we thought, but it is a complete 24 hours. 24 hours on video, hooked up to the sensors, in a hospital room—-with a kid who will not leave a band-aid on.
Our first question was: what does an EEG entail? Click HERE for a pretty clear cut site I found to help us understand a bit more.
We discussed our concerns with the scheduler and she mentioned that the placement of the sensors is a timely and tedious process and one thing they do for kids who have sensory issues or ASD is offer sedation for the placement–allowing them to get it done with out a struggle. With the optimism that once they are all placed we can just tell him hat on and keep his hands off and him not seeing them being placed it will go smoother. We decided this was the best option.
This brings in a new factor of not being able to eat until after sedation because of the anesthesia….which will be an interesting experience with a hangry kid. Hoping the sedation itself goes smoothly then.
We planned the appointment for a Tuesday because Alex is off on a Tuesday and doesn’t go in until 2 on a Wednesday. That way one of us would be available to stay with Stella and the other with Nolan. That was until we discovered it was 24 hours. Now we are thinking it is necessary for both of us to be there….Alex is the entertaining can make him smile and distract, I am the soothing cuddler who can help him get calm.
That being said, we now need a sitter for Stella. Alex’s mom is taking Stella on Tuesday, then passing her to my mom who will take her over night and Wednesday. I am so glad she is so easy going!
Alex had a planned flu shot clinic for work so he can’t reschedule that so he has to leave in the morning to go to that…leaving me to meet with the doctor, keep Nolan’s hands off for a couple of hours and such on my own. It also means 2 cars going on the 45 minute drive.
This also means calling into EC at school, speech, and ABA. That is a lot of rearranging and people to call, though it is already done, missing those important therapies is also hard for Nolan and us.
To say mom and dad’s anxiety is high is an understatement. We know we have an amazing neurologist on his case. We are in an amazing pediatric ward of an amazing hospital. We have an amazing kid who continues to surprise us every day. We will make it through, we will work hard to be strong for Nolan. We will report back how it goes (and hopefully some tips for those who may go through the same experience) as well as results when they are in (and what that means for treatment, his future, and prognosis). If you have questions, suggestions, or prayers to send our way, they are more than welcome!