Lemonade

Oh, where to begin.
I cannot sleep tonight, and I'm not looking forward to the anticipated questions and phone calls that will begin occurring, and I am not enjoying the game of trying to wrap my head around the situation. I figured the combination of all those feelings make for a perfect time to write it all out, answer people's questions while simultaneously working it all out in my head. So here goes.

I still don't like talking about Camden's seizure that occurred right before he was three months old. I'm honestly not sure as to why this is. Besides the fact it was all traumatic.  I'm also sure part of it is the choice to forget, and the other part was that no one was positive what happened.. so there was always a part of me that questioned if I really saw what I saw-- and I know others did too.
So here's just  a little snippet:
For days I told people Camden's movements were off. Understandably, people told me I was just a first time mom who was naturally concerned for her child. He had a couple of what I called "episodes" of just weird movements then screaming then sleeping. I took him to two doctors. Then he went limp and his eyes rolled in my arms and I could not get him to come back to for several seconds.
We did several tests. EEG, CT scan, Bloodwork... all were normal. They attributed it to a breath holding spell and told me some things to watch for and be aware of. More would not likely occur, but we could cross that bridge if we got there.
I spent the next few months just forgetting. I didn't want to worry and watch and wonder all the time. Eventually I got to a point where I could almost laugh at myself and how worked up I was that month, but mostly I just pushed it all out of my mind.

On to present day:
The past few weeks Camden has done some silly things. Mainly involving his head. The first time I saw his head fall while on his belly I thought "Aw he is so tired".
The second and third time I remember it happening was in Arizona. I didn't see it but I remember twice Garth getting food in Camden's eye because right when Camden went to take a bite from the spoon he "nose dived" instead as Garth put it. I laughed and thought that Garth just isn't used to feeding our little boy his solids!
Well yesterday morning I had Camden in his high chair while I was cutting up some fruit. I looked over to see his head fall, raise, fall, raise, fall. I was at an angle that allowed me to see his eyes when his head fell, which I had never seen before. I realized his eyes were basically rolling up. Not totally back, but looking way way up.
Of course I instantly panicked.
I sat in front of him and talked to him and he looked at me, smiled and babbled right back. I tried to just brush it off, but it happened again.
I knew that because of Camden's previous seizure that I was extra sensitive to little tiny things and I didn't want to make a big deal of nothing.
I took a video and sent it to my older sister and asked her to watch his eyes. At first she said it was normal. Then she texted me and said she watched again and it was a little freaky when you see his eyes. So then I sent it to a friend with a child my son's age. And this process continued for a little while as I debated and struggled to process what I saw.
I watched Camden continue to have weird twitches and head bobbing moments but he always came right back to smiling and interacting with me. I debated and I told myself I was a freak for worrying.
Eventually, I broke down and texted Garth telling him he needed to come home. Whether or not something was wrong I was too scared to be alone.
Garth called, I sent the first video, and he wasn't sure (its really hard to see his eyes in it).
He called the doctor for me though and left a message asking him to call.
I put Camden down for a nap and I could just not shake what I saw. I hadn't captured a big one on video but I knew something was off. The only thing comforting me was that it only seemed to occur in his high chair ... so maybe Camden just makes weird faces and movements while eating right?

When Camden woke I immediately set up my phone to record and my camera. He had a couple more small ones while eating again and I sent them to Garth. Garth called and said based on the video something was wrong and he was coming home.

The doctor then called and told me he was 90% sure they were seizures. He said they could be benign or they could be caused by something going on so that I needed to go in right away to have the tests done. He then said, "I know this is crazy sounding, but do you by any chance have them on video? This will give the doctors a greater point of reference. I know it seems like a weird question."
I responded with, "I know this is crazy, but I have three on video."
Brilliant.

So we headed to the ER at Children's Hospital here in Denver.
We waited for hours. Finally met with a doctor who watched the videos and described them as suspicious, watched Camden for 10 minutes but all was normal, then left to discuss options for an EEG appt with the neurologists.

my boys playing waiting for doctor

After she left Camden began having the episodes one after another uncontrollably. We tried and tried to calm him or stop them but we couldn't. I paged a nurse and no one came as Camden's head continued to bob and his eyes roll and dart about. We tried to wait but at one point Camden's head began bobbing so fast he was hitting it against Garth's shoulder but completely unaware. This made us both lose it. At that point I ran into the hall and said (..or yelled..) that something is wrong with my son and we need someone now. Possibly I was a little dramatic. I don't know, I was pretty emotional so what can ya do. The doctor and nurses ran in and were fortunately able to witness a few more episodes. They decided Camden needed to be admitted to stay over night for an immediate EEG.

So we found ourselves once again watching as Camden's head was drawn on and then connected to many many wires.

The EEG specialist asked if Camden was okay wearing hats and we laughed and said he has one on all the time. So luckily Camden really didn't mind having them on his head. He babbled and played as they just glued things to his little head. It was way past his bed time but he was such a trooper, just loved all the attention and smiled at all the new people he met.

The EEG monitors brain activity. It can detect seizure activity and where it occurs, but it also checks for age appropriate brain functions to make sure he is neurologically on point with his age. There was also a video camera with this one so they can watch what occurs on the outside when anything abnormal happens with the brain readings.
After the hour it takes to connect all the wires Camden went to sleep easily and we were told to get some rest too.

I think I slept maybe 2 hours and I can say with confidence there are 33 ceiling tiles in room 839 of Children's, all annoyingly different sizes. I checked Camden, watched all the squiggly lines on the monitor wishing I knew how to read an EEG, and googled and you-tubed all that I could about infant seizures/spasms/etc. (Which really they tell you not to do, but I wanted to make sure I was prepared with all the questions I needed to be). Plus.. what else was I going to do ? I even tried googling how to read an EEG. Yeah, no one knows. [:

The nurse came in to check vitals at 4am. Camden woke and smiled at her while she worked and then fell right back to sleep after she left.

The nurse practitioner came by and told me the "plan" and the possible outcomes. Camden could still end up being entirely normal and we could just go home. Or if they were spasms we would sit down with a team of neurologists to make a plan for Camden's treatment.

I sat there listening to both my boys sleep thinking that yesterday either changed my life forever, or marked a really terrible but not significant day of my existence. It was hard to have no answers.

Today Camden woke at 8am. He was bright eyed and smiley.

He did well through his morning interval. He played and enjoyed the new surroundings, but it was hard not to be able to take him out of his crib.  It was also really hard waiting and watching for episodes. We didn't want him to have anymore, but we also wanted the EEG to catch them so if he was going to have more we wanted them to happen while hooked up.

He did end up having one or two episodes which were really hard on Garth and I. I think we were somehow hoping they would just never happen again and that we were really just crazy.

Eventually after his first nap I took a shower. When I came out Garth had witnessed several episodes. When an episode occurs we were told to push a button which makes a time stamp on the reading so they know to review that location and watch the footage. After pressing the button we are then to describe out-loud what we see Camden doing. Garth and I traded places and I witnessed several more episodes while he was gone.
We both became emotional watching him and letting the feeling sink in that truly something was not right.

Because he had so many episodes today, they had a significant amount of data and we were able to meet a neurologist today instead of waiting for tomorrow. The neurologist began by telling us that when they watched the footage of the times we marked they were very concerned. They really thought it was infant spasms, a serious disorder. However, when they checked the EEG it was completely normal. Even throughout an episode all activity remained normal.
This left them a little unsure of a diagnoses at first. They told us what they were leaning toward but wanted him to be monitored for a few more hours and requested the videos we had from home. When he watched the video I took at home my heart sank. He looked so concerned and said he was going to show his boss right away.

So we waited.

Eventually the bitter sweet news came. At this time they are confident to diagnose Camden with Benign Myoclonic spasms or Benign Myoclonus of Early Infancy. The good news is that his brain activity is normal and his development is healthy and great. He should continue to develop and progress as any normal baby would. The unfortunate news is that Camden is indeed not in control when the spasms occur. There is no treatment necessary but as a result no prevention. He will continue to have them, but will someday outgrow them. For some reason these types of spasms do in fact occur most frequently at meal times. Scientists do not know why.

I took this out of a book titled "Movement Disorders in Childhood" By several MD's to give a little more specific information:

"Benign myoclonus of early infancy (BMEI) is characterized by episodes of myoclonic spasms involving flexion of the trunk, neck, and extremities in a manner resembling the infantile spasms of West syndrome. The myoclonic spasms typically occur in clusters. In some cases they involve a shuddering movement of the head and shoulders, and in others the movements of the trunk and limbs are extensor. There is no change in consciousness during the spells. Unlike benign neonatal sleep myoclonus, the movements in BMEI only occur in the waking state. The onset of these spells is usually between ages 3 and 9 months, but they may begin in the first month of life. The spells usually cease within 2 weeks to 8 months of onset  but may persist for 1 to 2 years. Both ictal and interictal EEGs are normal, distinguishing this entity from infantile spasms. Treatment is not required. Development and neurologic outcome are normal."

We were told that the neurologist who specializes in epilepsy was concerned just by watching the footage alone and despite the normal activity and would like to do one more repeat EEG in two weeks to ensure that we are cautious and all really is normal.
We were then discharged and able to finally take our baby boy out of that blasted crib. With him hooked to so many wires and needing to be on camera we couldn't really hold him or take him out of the crib and he was beginning to make extreme sad faces every time we sat him back down on his bum.

Camden has had 4 episodes in my arms since returning home. It is really, really hard to wrap my head around the fact that he is OKAY during them. They are not easy to watch.
I know many people post their videos of the spasms to Youtube in order to help others who are struggling to diagnose. I do not plan to post videos, I would be willing to share with someone with legitimate concern for their child looking for a point of reference.
However, the videos hurt my heart so I don't really want to put them anywhere so please don't ask just out of curiosity. I don't want him to be a spectacle. Camden has so much more to offer than that.

We are lucky to have a baby boy who has had some hiccups along his road of life but is always otherwise healthy and thriving. Camden has not had the most simple life but he has probably spent more time smiling than most 90 year olds. All the nurses told us they didn't want him to leave. He did so well and just trudged on with whatever was thrown at him.
I have learned time and time again as I have struggled, debated, and wondered about my little boy that the spirit does guide. I have learned that no matter what diagnoses would have come my way today, be it life long, or life altering, or nothing at all I know without a doubt I would love my Camden the exact same way as I did the day before.

I am an over-analytical, constantly worried person. Part of that is personality, part of it comes from circumstances I have encountered. However, I have to believe that God knew this about me and so confidently sent me a precious spirit who would need me to be more watchful and to notice. Camden's episodes are very short. They are easily easily missed, and quite honestly I do not know how long we missed them.
Now that they have been identified I have had family members say they have seen him do it, but he's back to normal so fast you instantly think oh he was just being silly.

I am grateful for God's trust in Garth and I. I look forward with still a lot of fear. There are still so many possible things to come with all of this. However, I am grateful for the experiences I have had due to the fact that they have taught me that even when everything seems wrong, somehow someway I always know we are going to be okay. God knows how I work, and he knows the way I think. I have received comfort and promptings in ways that I personally can understand and cannot deny.

I am also grateful to my parents. They came to offer support and bring us the necessities for the over-night stay. Garth and my dad were able to give Camden a blessing and my rockstar mother deep cleaned my apartment today so we came home to absolutely no work.

Here's to adjusting to our new little adventure.
Time will be the only judge.