I’ve kept a little quiet over the last few months about our sweet little Lucy girl, but I am finally feeling ready to open up and talk more about what we have been dealing with as well as a life update on Lucy. I felt like it would be the easiest to share about everything here, a place that I feel like has turned into a journal for me.
I haven’t been sharing really anything publicly about Lucy and her seizures, because honestly it isn’t easy to talk about. I am not someone good with words and expressing them how I want to. Plus it’s hard to open up about a life update like this when you are so unsure and scared. Especially when it is about your own child who you love so much. But today I finally felt like I could share this life update with you because over the next year this will be our new normal.
Before diving in to Lucy’s life update, I wanted to share the back story for those who are new or maybe those you need a refresher what happened with Lucy a few months ago.
Lucy’s Story and Life Update
Over two months ago I had prepared some chopped bananas like I typically do in the mornings for Lucy and set her in the high chair. After getting Edison his food I walked into the pantry to grab me some breakfast and Edison came in to find me saying that Lucy was making some “tooting nosies” I came out to see and Lucy was hunched over the high chair, eyes rolled back, and looked as if she were struggling breathing. My first thought and reaction was that she was choking. I ran over unclipped her from the high chair. Positioned her onto my knees in a downward position and start to give her back blows. After 6 or 7 blows I checked to see if she was breathing and saw that she was very limp and turning blue in the face. I turn her back and started to give more back blows hoping that she would start to breathe again. Honestly the scariest moment I have ever had as a mother. After flipping her over the second time, I noticed her entire body flopped and was very limp. Still unresponsive with her eyes rolled back but I noticed she was breathing. That’s when I knew she was not choking but instead having a seizure.
I called Brandon quickly to tell him to come home. Hung up and called 911. Spoke with them on the phone and told them what happened. They showed up to the house very quickly. Probably within 5 minute of me getting off the phone.
Once they arrived Lucy started to open her eyes and come to. She was pretty tired and exhausted. They told us that it would still be best for her to be taken by ambulance to get checked at the hospital. Since she seemed to be more alert and back to baseline. We decided we would drive her to the hospital ourselves.
Once arriving to the hospital they ran her vitals and things were looking good. We waited there 5 hours with Lucy being fussy but she seemed to be doing much better. They said that Lucy probably experiences BRUE. which stands for Brief Resolved unexplained event. They say that it happens often but they find that no other thing occurs to the child after running test after test. We were about to be discharged when I noticed Lucy start to become limp and fall forward. I was holding her in my lap and started to say her name. I then start to sit her back up and notice her body start to seize. Her face turns blue/gray and her body starts to spasm. Brandon runs out to grab a nurse and in runs 3 or 4. I hand Lucy to a nurse so I can get off the bed. They lay Lucy down and I had to watch my poor sweet baby just lay there spasming. It was so difficult to watch. But also so scary knowing that we may have a more serious problem. After the seizure Lucy was pretty out of it for about 2 hours. She basically slept as often as she could. The doctored ordered a EEG test. She fell asleep shortly after and stayed asleep while they took all the cords off. They finally had a room available for us so we could leave the ER.
Shortly after getting to the room Lucy became happy and smiling again. As I was holding her I notice her eyes became glazed over and her body became limp. As I start heading for the bed to lay her down her body start to shake and spasm again. I laid her on her side and had to watch her have a seizure again for the 3rd time that day. It broke my heart. Thankfully there was 2 people in the room to witness her seizure.
She came to a little earlier than she did the second time that day. We waited around for another hour before we took her down to get an MRI. She was put under with anesthesia. After the MRI they planned to do a spinal tap on her as well just as an extra way to see if there is any fluid in the brain.
We stayed overnight to monitor her. They gave her some medicine to help treat the seizure. So she should be safe.
The neurologist came to talk to us and really gave us some peace of mind. They said that most likely these seizures are either due to a chemical imbalance in her brain that is quickly developing or Febrile Seizures which are common in children under 5. It happens when a child has recently been sick with a fever. There is still a lot of
Inflammation in her body that can cause this effect. That was something positive to hear. However we have not gotten the results back from the MRI or Spinal Tap.
Since Lucy’s First Seizure
I mentioned over on my Instagram that we started Lucy on a Anti-seizure medication a a couple months ago. That is because she has had 9 additional seizures since March. Her first one since her hospital stay came as a shock to us. We weren’t expecting it at all. It happened on April 20th (almost 2 months since her first seizure) just shortly after I had finished my workout on the peloton. I had come out into our living room to set up the yoga mat to begin stretching. After getting set up, I put Lucy by me which is what I normally do. She generally just plays with toys while trying to climb all over me. I had sat down on the chair because my I got a message from my manager that I needed to redo a video to send to a brand. I was getting up to go get my laptop but was stopped by Edison who was in the dining room crying. I’m not even sure why he was sad, but I’m SO glad I stopped to to sit on the ground to hold him for a brief moment. From where we were sitting I couldn’t see Lucy, because the couch was in the way, but after holding him for a little bit, I heard a strange noise and it sounded like gurgling or Lucy choking. I sat Edison down peaked over the couch and saw that Lucy was laying on her side having a seizure. I ran over, called Brandon’s name and was there to comfort her. My heart ached for her in that moment. It didn’t last long roughly under a minute.
We did as we were told when we left the hospital to contact Lucy’s pediatrician if she were to have another episode. She went ahead and let the neurologist that we saw in the hospital know about Lucy. The neurologist didn’t seem too concerned for Lucy. Which made us feel some kind of relief. The only concern we had is that Lucy hasn’t been sick, no fever, no ear infection that we knew of. So to us it doesn’t seem like the same possible febrile seizure that she had only a couple months prior.
We kept a very close eye on Lucy. I honestly went a bit crazy and became paranoid. Never leaving the room without her, never taking my eyes off of her, I wasn’t sleeping well etc. This is how I was after her first seizure as well. It faded after a couple weeks, but during that time I am constantly worried and living in fear.
A couple weeks later we were finally able to connect with the neurologist that had been on Lucy’s case at the hospital. Because of Covid-19 they felt it would be best if we did a zoom video call verses meeting in person. She discussed that we need to still keep a close eye on Lucy. However because she had a non provoked seizure there is a 25% of her having one again. If it were to happen again, it would likely be within a couple weeks to a couple months of her having another. If she does have another they would want to start her on an anti seizure medication because if she has more than 2 seizures would indicate she has epilepsy.
One week to the day after we spoke with the neurologist Lucy had another seizure. This time I watched the entire thing happen. I was cutting Edison’s hair and looked over to see Lucy slowly start to fall over from a sitting position. Usually she catches herself, but I noticed she wasn’t. I quickly ran over to her and was able to lower her to the ground carefully before her little body started to seize. It lasted one and a half minutes.
As terrifying as it is to see your little one have a seizure, I felt some comfort knowing that Lucy will now be going on the Anti-seizure medication and that we won’t have to live in fear daily wondering “if” she was going to have a seizure that day, in that moment.
2 days later Lucy had her 6th seizure. This time Brandon was watching her and was able to comfort her during this time. We knew that getting Lucy on the medication quickly would be the best thing for her. The next day her doctor called in the prescription and she has been on it ever since.
Lucy has now been on a anti-seizure medication now over 2 months and it was a little tricky figuring out her correct dosage to keep her safe from seizures. We gradually increased her dosage weekly and once we were up to the final dosage, that is when Lucy had 3 seizures in 24 hours. We upped her medication another ml and since then she has only had one more seizure! This medicine and extra dosage seemed to be working perfect with her, until last week. We are still waiting to get direction from her doctor if we need to increase her dosage or switch medication completely. And thankfully we haven’t seen any side-effects. I know side effects can happen but her doctor said that they are pretty uncommon in small babies. We of course will always keep mindful of them and keep an eye on any mood changes.
Lucy will stay on the medication for a year before we start to wean her off of it. Luckily with Lucy’s age and her healthy body her doctor is certain that this is something she will outgrow and not something she will deal with the rest of her life. We are very hopeful in that! Even during our first visit in the hospital with her neurologist she told us that her seizures were likely caused by some brain imbalance since her brain is still rapidly developing. It is common in young babies and children. After the year of medication they will run more tests before taking her off medication to make sure everything is good and clear.
One thing we have some hope in is the free gene testing that our Hospital offers in children under two years old. We opted for Lucy to get the testing done. I look Lucy in to get a blood sample a month ago and we finally got the results back a couple weeks ago. This gene testing will possibly show what is causing her to have seizures and if it is something that is genetic.
Lucy did test positive for a change in the PRRT2 gene. This gene is associated with benign infantile seizures. The seizures tend to resolve by age 2, which is the same time her anti seizure medication may be stopped. So here in a year we will wean her off and hope that the seizures are no longer occurring. This PRRT2 Gene that Lucy carries can possibly have minor effects as Lucy gets older so we will keep a close eye out for those. Things to look for is possible migraines with numbness to one side of her body. Another side effect is her going from sitting to standing her leg or foot may lock up. Even Edison could possibly get these side effects if he carries the same Gene. (which we are unsure of)
Since talking with the neurologist, she suggested that Brandon and I speak with a Genetic Councilor which we have scheduled to possibly see if either one of us carry this gene (even though neither one of us has any of the side effects). But since we plan to have more kids, this is something we are interested in learning.
As scary as it has been the last few months for us, I am honestly beyond grateful of the timing of corona right now (sound ridiculous to say) But, I really consider it a blessing. Being able to stay home to focus my time and energy on Lucy has been the best thing for us. Keeping her safe in the comfort of her own home is truly something that wouldn’t be as easy to do if we weren’t dealing with this virus.
As for what to expect moving forward from this life update, I know I will still be a paranoid mother. It’s not easy! It’s hard to stay positive, stay strong, and mostly stay patient throughout all of this. I am continually trying my best at protecting Lucy and making sure she is okay, just call me that helicopter mom! I normally am not that way, but I am being extra cautious with our Lucy Bear. I know that soon the paranoia will wear off, but right now I can’t help but have 2 baby monitor cameras on her at all times when she is sleeping! Technically 3 if you consider the baby owlet monitor! I shared all 3 of these new cameras that I got HERE.
If I am being completely honest, another huge reason I felt like it has been hard to open up on instagram was all the DM’s I have received about Lucy. People noticing things about Lucy. Her staring in videos, or seeing her zone out, etc. I know these people probably meant well and just overall concerned, but anytime I would receive a DM like this my heart would literally sink. It would automatically put me in a weird funk and worry the rest of the day. I understand people are just trying to let me know of their concerns, but these are all things that I had brought up with her pediatrician. Thankfully non of those mannerisms I mentioned above are non-related to her type of seizures she has. It’s just hard hearing it from people you don’t even know or people that aren’t with Lucy on a regular basis.
If there is one thing I can say though it is this, I honestly am so amazed at the kindness and support that I have from SO many of you through Instagram. Honestly I was completely amazed at how many of you showed up to let me know that you are thinking of us, praying for Lucy, and overall just sending your love. WE APPRECIATE IT more than you know! We felt your love, we still feel it, and we are continually thankful for your overall support. So, thank you friends!
Do you have any other questions about Lucy’s life update? Let me know in a comment below!