Caught Off Guard

February 9, 2019, 9:40 pm

I was in our office finishing writing our last blog post. Randy was in the family room with Grace watching a T.V. show. Ryan was in his bedroom. After I finished the draft of the blog post, I went to Ryan’s room to tell him that I was done and that I wanted him to preview it. When I opened the door, I noticed Ryan on his bed and I immediately knew he was having a seizure.

This was the first of three seizures that Ryan has had in the last month. Each one lasted longer than 5 minutes and that is considered a medical emergency. The paramedics have come to our home on each occasion and have transported Ryan and me to Cook Children’s Hospital in Fort Worth. His last seizure was this past Thursday.

Many of you may remember that Ryan last had a seizure at DFW airport in September 2017. I felt very strongly that the triggers for that seizure were sleep issues (we had a 7 am flight which warranted a 4 am wake up call) and stress (it was the longest TSA line I have ever been in and I was worried that we might miss the flight). At that time, we trialed medication (again) and after meeting with the Neurologist, decided to stop the medication and just carry rescue medication in the event he had a seizure that lasted over 5 minutes.

This seizure caught me off guard. He had slept fine the night before. He was not sick and was not under any significant stress. I had not looked at the intranasal rescue medication in quite some time. Without practice, it is a bit complicated to administer and Randy and I had trouble trying to figure it out while Ryan was seizing. The paramedics arrived and stopped the seizure with intravenous Versed. We don’t know the duration of this one as Ryan was by himself in his room for quite some time.

I always worry that Ryan will wake up and have lost some or all of skills, like the ability to point on a letter board. While we were in the hospital, after a few hours, Ryan was trying to pull out his IV and the different sensors that were attached to him. I explained to him that he needed to leave the IV in place so that the doctors could give him fluids if he needed it, could draw blood, and give medicine if necessary. I held the board and he spelled: REALLY CAN GIVE MEDICINE IN MY MOUTH! I then knew that he was okay.

From this date on, I was hyper vigilant. I was following him around like a hawk. I was sleeping in his bedroom in a recliner. I told Randy that the only way that I would sleep in our room is if we got at least a baby monitor as a temporary solution. I was researching seizure monitors at the time and trying to determine the best one for Ryan. I was having him practice wearing my different FitBit bands to see if he could tolerate a wristband device.

February 15, 2019, 9:30 pm

I was tired. I decided to get to bed early and I had washed up and gotten my pajamas on. I heard Ryan’s iPhone through the baby monitor (he uses it for watching videos) and I thought that I would check on him one more time before going to bed. When I went into his room, something seemed off. I tried to get him to respond to me and he couldn’t. His eyes deviated upward to the left and I realized that he was having another seizure.

During that ER visit, I made sure that they got blood work and the doctor decided to check for Flu and Strep since I had mentioned that he seemed like he might be starting to have a runny nose (no other symptoms). His Strep test came back positive. He had absolutely none of the classic signs of Strep. I mention this specifically to other parents of kids with autism. If I had bet money about the Strep test, I would have lost. I did not think that there would be any chance that the test would come back positive.  Ryan was given a shot of penicillin in the hospital and some temporary meds for 3 days until we figured out which seizure medication he would start going forward.  

We finally had his neurology appointment on February 27th (which was made after the first seizure but this was the soonest that we could get in). Ryan did great during the visit and we spoke at length with the neurologist.  We talked about getting another EEG for Ryan and I mentioned that I would like to wait (if possible) for Ryan to do it with Brad Levy of EEG to Go.  She thought that this was fine for now.  The hope was that these two were isolated and that with the medication, Ryan would be fine for now.

As I mentioned earlier, during this time, I was researching seizure monitors.  I stumbled upon the Danny Did Foundation website.  This amazing organization provides grants to families to purchase seizure monitoring devices for their children.  Randy and I decided that since I am essentially with Ryan 24/7, with the exception of sleeping, the SAMi Sleep Activity Monitor would be the best fit for our family.  We went ahead and purchased it right after the second seizure and received it pretty quickly.  This camera is constantly running and recording any movement lasting longer than 15 seconds.  When the app is open on your phone, it sounds an alarm for these movements.  Since the camera is continuously running and recording, you can retrieve videos once your phone is connected to the home WiFi.

I spoke with Mary Duffy of the Danny Did Foundation and filled out the grant form.  We had purchased the camera after the second seizure but the Danny Did Foundation was able to reimburse us the cost of the camera.  From their website:  

Founded by Chicagoans Mike and Mariann Stanton after the Sudden Unexpected Death in Epilepsy (SUDEP) of their son Danny just before his fifth birthday, the Danny Did Foundation is dedicated in its mission to prevent deaths caused by seizures. The name of the foundation comes from the last line of Danny’s obituary, written by his dad: Please go and enjoy your life. Danny did.

Danny Did Foundation Website

My fear is that Ryan may be injured or worse as a result of his seizures.  This is exactly why I was sleeping in his room.  By receiving the SAMi camera, I can be alerted to any possible issues.  As I am writing this post, Ryan is resting in his room and I have the SAMi app open on my phone. I want all families of children and people with epilepsy to know about the Danny Did Foundation and the different seizure monitors available.  This was the main reason to share Ryan’s story.

March 7, 2019, 8:00 pm

I was reading to him and he was in his bed and I noticed that he looked like he was chewing on something.  I repeatedly asked him what he was chewing on, and he almost looked like he was trying to respond and then could not.  After a few seconds, I realized that this was the beginning of a seizure.  Randy has said that after seeing one of Ryan’s seizures, it was not what he expected seizures to look like. Ryan’s seizures are focal to bilateral tonic clonic seizures.  I was by myself with Ryan as Grace was at a play with Margaret and Mark and Randy was in Las Vegas for work.  Unfortunately, Ryan’s rescue meds were in my purse and my purse was not in close enough proximity to us for me to safely get it without someone to stay with Ryan (going forward I have a rescue medication located in a drawer under Ryan’s bed as well as one in my purse).

I was able to start timing the seizure and called 911 when it got to the 4 minute mark.  The paramedics arrived and Ryan was still seizing, so they administered a shot of Versed in his thigh.  At this point, it has been 17 minutes.

We went to the hospital and Mark met me there and Margaret took Grace home.  The on call Neurologist wanted to discharge Ryan after a few hours, sending us home with upping his current medication and checking his Trileptal levels, which had to be sent out and we would not have the results for several days.  I was not having that.  I told them that I wanted more blood work done, including sodium levels (as Trileptal can deplete sodium) and that I wanted him admitted to the hospital overnight.  They agreed and we stayed.

The next day, Randy got on an earlier flight and met us at the hospital around lunch time. Ryan seemed almost back to himself, so he was getting a bit stir crazy in the hospital room. We were able to get some books from the hospital library, which included an age appropriate middle grade novel and some baby board books. The reason for this is that Ryan enjoys flipping through the board books that I read to him as a baby. He calls it NOSTALGIC. We were also able to interview a few of the hospital employees, as Ryan loves learning about careers.

I wanted to see if we could get an EEG done in the hospital or possibly get Ryan hooked up with a 24 hr EEG to take home.  We were able to do the short one in the hospital.

March 12, 2019

I have tried to figure out the best way to share these experiences with our readers while respecting Ryan’s privacy. The main reason that I wanted to blog about this is to talk about the SAMi Sleep Activity Monitor that we received as a grant from the Danny Did Foundation.

Ryan does not want empathy towards him, we all just want answers and right now, we don’t have a lot of answers.  The EEG came back as normal. His trileptal levels were not within range, so the medication adjustment is definitely warranted. We may need to increase it again in the future. I am trying to write things down to try and see if we can come up with a pattern or any possible triggers.  I will keep all of you updated.  If you pray, I ask that you pray for Ryan’s seizures to be under control and that they stop happening.

After each time we have been taken by ambulance, our intention was for our family to visit the North Richland Hills Fire Stations who have helped Ryan.  Unfortunately, we have not been able to do so yet.  The NRH firefighters and paramedics arrived at our house timely and were essential to getting Ryan prompt medical attention.  Randy and I are so grateful.

I read this to Ryan and he wanted to add his own thoughts, so we sat down at the table today.

LIKE TO REALLY SAY SEIZURES ARE SCARY. I DON’T LIKE WAKING UP IN THE HOSPITAL AND NOT KNOWING WHAT HAPPENED. ONLY THING TO HELP ME CALM DOWN IS YOU MOM. (At this point I started crying–ugh the stress and lack of sleep and the amazingness of my son.) I AM SORRY IT IS SAD FOR YOU. IT IS HARD TO THINK I STORE SO MUCH LOVE IN MY HEART FOR YOU AND I KNOW IT IS THE SAME FOR YOU. CAN REALLY TOTALLY GEEK OUT AND READ NOW. (So we did.)

I know that this was a long post, so thank you for reading.  I really hope to never have to write a post like this again.  

If you know anyone with epilepsy, please share with them the information about the Danny Did Foundation and the SAMi Sleep Activity Monitor.  By the way, since I was in the room with Ryan, I did not have the app open on my phone, but the camera captured the seizure in its entirety.  What an amazing piece of information for the doctors to take a look at to help figure out what is happening with Ryan!  I am forever grateful to the Danny Did Foundation and the folks at SAMi.