Let’s just call this week the one with the updates. Since Channing took some time on Monday to update you with what is going on with her heart, I thought it was only fair that I take some time to share what exactly is going on with me, and why I too have been distracted the last few weeks.
If you follow us on Instagram, then you know that on Monday, Megan (my 5 year old) had an MRI at Texas Children’s. What lots of you have asked though, is WHY?
For the last several months, Megan has been having “episodes” as we call them. Essentially they are little staring spells in where she pretty much just spaces out for several seconds. Recently she had two that were fairly long, and so that sparked our pediatrician to really push for us to meet with a Neurologist.
If you have been following us for awhile, then you know that Megan had these same episodes back in the fall that we followed up with an EEG. Nothing really ever came from that, and to be honest I just didn’t think that much of it because our old pediatrician didn’t seem to think it was anything. Then of course lately they have become more frequent and thus have us revisiting these episodes.
Last week we met with a Neurologist, and as she walked into the room, she looked at me and said “You look really familiar”. I thought the same, but could not place her. We began talking and going over Megan’s symptoms and history. As we chatted, Madisyn’s name was brought up and immediately our Dr exclaimed “That’s how I know you….You are Madisyn’s mom”. Turns out Megan’s neurologist is Madisyn’s friends mom and both our girls were on their Spring Break Trip to Washington DC. It was something simple, but it really did help to put me at ease. Talking with Dr’s always stresses me out….don’t ask me why.
I will fully admit that I carry a lot of guilt with Megan and these episodes. When I am filling out the paper work and talking with the Dr’s and they are asking me questions I find myself emotionally kicking myself for not paying better attention and being more on top of things.That I didn’t notice them earlier. That I didn’t follow up in the fall after her EEG. I can’t beat myself up for forever though I suppose, and we are getting answers now so that’s the best I can do.
After our meeting with our Neurologist, it’s been determined that Megan has been having what is called Absent Seizures. We had the MRI this past Monday to make sure that they aren’t being caused by anything structural. We don’t yet have those results, but we feel fairly confident that it will all be ok.
So what is next for our sweet girl?
Up next Megan will have another EEG. If that doesn’t work, we may have to do an extended EEG either in the hospital or at home. It’s ironic I suppose that I never wish for her to have a seizure, but I find myself during the testing praying that she would just have one that would easily show what is going on.
So far Will and I have seen them. Her teachers at both school and dance. My brother, Channing and our pediatrician have all witnessed them. They are very different than what one would think when you think of a seizure, or at least to me anyways. She doesn’t lose control of her body. She simply spaces out. Her eyes get kind of glassy and she stares off and you can tell she is just no longer present with you. The scary part of it all I guess is that she doesn’t seem to know or remember when they happen. Sometimes she is startled when she comes back out of it all because her surroundings have changed. For example the one she had in front of my brother she was sitting across our kitchen table from him eating a snack and talking with him. In mid sentence she stopped and just kind of spaced out. My brother looked at her and started to say her name over and over and eventually got up and walked over to her and touched her. The first time she did not respond, but the second time he called her name she snapped out of it and then looked confused and startled as to why he was now standing next to her instead of right across from her. When he asked her what happened she had no clue what he was talking about or that anything out of the ordinary had happened. They are crazy and a little scary but we are glad we have some direction and somewhat of an idea of what we are dealing with and are on top of things now and moving forward.
So that is what is going on with our sweet girl. I apologize if that was all over the place. I am pretty much all over the place so that’s about the best I could do.
We thank all you sweet mamas for your continued prayers for both of our families. We are so thankful for your understanding and support while we take some time to get our lives in order and figured out. We aren’t leaving 100% as Channing said, we love this little space we have built too much but for now it may look a little different.
We will pray fervently!! Ainsley asks about Megan weekly – she misses her sweet friend so much! Praying lots of peace, wisdom, and healing!
Oh that’s so scary, just because they’re not the full blown grand mal seizures doesn’t mean it’s not scary! I will be praying everything is ok with your sweet gal 🙂 xo
Andrea Lenio says
Love, love, love that sweet girl & so grateful that I’ve been her Pre-K teacher this year! She brings great joy to our class & she is always in my prayers. She’s a little cutie-pa-tootie!
poor baby and poor mama. She will be in my prayers.
In June of ’13, I was woken up by my teen telling me that my son (6) was having a seizure. Um.WHAT???!!! Sure enough, he was. I realized after he woke up from a nap following his seizure, that his behavior then was something I had seen many times and not understood. He had been having seizures for at least a year, we just never saw it happen. I felt horrible. Devastated. Like someone would be showing up with a van, flowers, and photographers to congratulate me on winning “Worst Mom of the Year” instead of the well known sweepstakes. There had been mornings that I had literally drug my son out of bed, dressed him (while he tried in vain to fall asleep), carried him to the car and dropped him off at school. All the while not knowing that his extreme tiredness was from having a seizure in his sleep. WORST.MOM.EVER. Ugh! My poor baby! But, I have only seen him have ONE absent seizure. I terrified me, we already knew he was having seizures and we had no idea what to expect. He just zoned out while walking from the front gate to the house. Just stood there. The only difference was that he knew/felt it coming on. He grabbed my hand and stopped me in the yard. Then just stood there as if transfixed. It lasted about 15-20 seconds or so. Then he finally answered me calling his name. It was weird. He took a short nap afterwards. He’s on medicine that he takes 2x a day and has been seizure free for about two years!! Yay! I pray your daughter will be blessed with great doctors and become seizure free!! Love and prayers from Tennessee!!