This post is hard to write and I have started it many times but I just haven't been emotionally ready.
Yesterday we saw the pediatric neurologist and Emmie was diagnosed with absence seizures.
Absence seizures (previously known as petit-mal seizures) are generally short (Emmie's are 5-15 seconds) and are often mistaken for staring spells. This was the case for us at first where we thought she was just zoning out. Since mid June we have been seeing more of her eyes going back or deviating to the side and rapid eyelid fluttering.
As you can imagine, life has been a bit of a rollercoaster lately. At the end of May we realized that Emmie might be having seizures. We think they started mid April (she definitely was having them by the beginning of May). We saw the pediatrician at the end of May and I showed her a video we had of Emmie just doing something "odd". She referred us to peds neuro to get checked out.
June 10 we got back from the beach and for the first time Paul and I saw Emmie have what we both knew immediately was a seizure. She stopped talking mid sentence, her eyes rolled back, and her eyelids fluttered rapidly.
Up until this point I think we had both been holding out hope that we were wrong and that she was just spacing out. It was sickening to lose that hope.
We've continued to see seizures almost daily. My stomach would bottom out and I would feel sick every time I saw her have one. There were many times I had to hold back tears when I would see her have a seizure. I didn't want my child to have to go through this. I didn't want to have to explain to my 7 year old what a seizure was or an EEG. Honestly for a few weeks there life was really tough and I was really sad.
We weren't supposed to see the neurologist until the end of July but I have a friend who worked in peds neuro for many years and she was so helpful in giving me ideas for ways we could move forward faster. We were able to get in for an EEG at the end of June (on my birthday...might go down as the worst way I have ever spent my birthday). Then that EEG was normal which was so upsetting as by that point we were seeing what were clearly seizures. Not long after the EEG I got two really good videos of her seizures. My friend looked at the videos (as an aside...I bugged her a lot during the month of June and she was always so kind and helpful) and encouraged me to get them to the pediatrician and the neurologist in hopes that someone would order further EEG testing that we could do before seeing the neurologist at the end of July. I made LOTS of phone calls to and from the pediatrician's office and then to and from the neurologist's office. My big concern was really that we would see the neurologist at the end of July, he would want more testing which would get done in August and then we'd be starting school while she was starting on her medicine. In the end, the neurologist's office said I could come in this week and show the doctor the video and he'd let us know if he wanted any other tests done. The neurologist looked at the video, talked to me for a few minutes, and decided to work Emmie in for an appointment 20 minutes later to get a full history and physical and start her on medicine.
I thought it would be emotionally hard when we finally got the official diagnosis but honestly, it didn't feel much different and was maybe even a bit of a relief. I think over the past few weeks I have grieved and come to terms with her diagnosis. Let me tell you, the grieving process was awful. There were many, many tears. I would sit and watch the video of her seizing over and over. And then I'd cry some more.
Having to fight for your child is absolutely draining. No sooner had we finally gotten Ruthie's tonsils taken out (after a week long battle with the insurance company back in April) then we started worrying about Emmie. My mama's heart just couldn't handle the weight.
Emmie had a lot of questions about the EEG and was pretty nervous about it but after the EEG she didn't say anything else about it. She doesn't ever realize that she's having seizures so I think once the EEG was over she just thought all of it was over. After we saw the neurologist and picked up her medicine from the pharmacy she had a few questions about why she needed medicine and what exactly a seizure was. I tried to explain it as best I could and she seemed satisfied with my explanation. I told someone that the good thing is that because she's so young she has no negative connotations when I say "seizures". To her it's no different than me saying she has strep throat or an ear infection.
Through the dark moments there have also been good moments. There were times when things would get a little better. I mentioned Emmie having seizures to a friend and she put me in touch with another mom (we actually have a lot of mutual friends) who's daughter is Emmie age and was diagnosed a little over a year ago with absence seizures. She was so sweet and talked to me for over an hour one night. She understood how I felt and that was a huge comfort. She was able to answer many of my questions about what to expect at doctor's appointments and what questions I might need to ask. Talking with someone who had walked this path recently was definitely a bright spot in the middle of feeling so dark.
One of the biggest blessings, as we deal with this new diagnosis, is Emmie's teacher. I wrote about it in an earlier post, but Emmie's 1st grade teacher is looping up to 2nd grade with her class. We were SO excited when we found out (because we just love her) but now I'm even MORE excited. To start the year with a teacher who already knows Emmie and what is "normal" for her is just an amazing blessing.
As we start this journey we hope that Emmie will outgrow her seizures. We hope the medicine will quickly control them so that when school starts she will be seizure free. We hope it doesn't affect her friendships or her school work or her extracurricular activities. Most of all we hope she always remembers that, while she has seizures, they do not define who she is. She is still our loud, vibrant, loving Emmie!