A Seizure?

So today was the scariest day I have had as a mommy. After playing with Jax all morning and taking a 2.5 hour nap together, he got up refreshed and ready to play some more. We played for about 2 hours together. During that time Grandma Cindy showed up and she played with him too. Right before his next nap I decided to feed him. He breastfed for about 10 minutes before drifting off to sleep. Then it happened. He began to shake. His whole upper body shook and shook. Then it stopped as quickly as it started. I tried to get my mom's attention before it ended but she didn't see it. We decided to watch him a few minutes and a couple of minutes later it began again only worse. He shook from head to toe. I picked him up and he tried to open his eyes but seemingly couldn't. He began to cry but kept shaking. After about 20-25 seconds after it started it stopped again. He stopped crying and was wide awake. I was shaken and scared. I looked at my mom and asked what she thought. We decided to call Jax's pediatrician. She called right back. We took his temperature (he had no fever) and because of the lack of fever she recommended that we go to Children's Hospital to be on the safe side. She didn't think it was serious but to make us all feel better she sent us anyway...just in case.

I called Drew and he came right home from work. We drove straight there. We got there around 3:30 in the afternoon. They checked us pretty quickly as my doctor had called ahead for us. We waited for an hour or so and then several different doctors came in over an hour period to examine him in different ways. The first did a general check of his body and head including a rectal temperature, eyes & ears, and breathing. The next checked his head pretty thoroughly. Then the next did an EKG on him (tough to do since he constantly moves and they need stillness/silence to get an accurate reading). After that the final doctor came in and explained to us what they thought or concurred happened.

This was the diagnosis:Benign Non-Epileptic Myoclonus--Age 4 months to 3 Years--"MYOCLONUS is a brief involuntary muscle jerk originating in the central nervous system. It is a paroxysmal (convulsive) event that may appear as an isolated finding or as a symptom of many diseases. Myoclonus affects all age groups and may be so severe as to be disabling or may be mild and require no treatment." Jaxon's does not appear to be epileptic so he would be classified as Benign Non-Epileptic Myonconus as opposed to the Epileptic version.

Basically they said some babies display seizures at certain points in their brain development and they do not return. They can be mild and do not bother the infant. No other disorder or syndrome seems to be present or to blame. Most babies outgrow them by toddlerhood. All people have some form of Myoclonus especially when going to sleep or waking up (think arm/leg jerking upon relaxation or Rapid Eye Movement). Jaxon's was more pronounced possibly due to increased brain growth or activity at this point in his life or because he is such a highly active baby. Basically we were told it was nothing to be concerned about and that if it happened again to hold him and help him get out of it if possible with stimulation. Due to the fact that it occurred on both sides of his body they do not think it was a true "seizure" (which is a good thing). Apparently babies under one year of age who have seizures should only have them on one side of the body due to their neurons not being fully formed. Since Jax had a total body episode it appears that he was having a severe form of "sleep jerking" kind of like when your leg jerks as you enter light sleep and not an actual seizure. This is good news as it seems that he does not have serious disorder. We were told to monitor him and continue to take him in for regular check-ups. If at anytime we or our doctor feel concerned about them (if it happens again) then we have the number for a neurologist who will perform an EEG (brain wave monitoring) and more focused diagnosis if needed but that is not recommended at this point.

We were relieved by this news though I am still a little concerned (worrying is in my nature). He is my baby and I want him to be happy and healthy. On a positive note the staff and doctors just loved Jaxon. They said he was the most social and happy-go-lucky baby they have seen in awhile (another reason for his positive diagnosis). He flirted and chatted (in baby talk of course) with everyone he came into contact with. He only cried when we had to remove the super sticky EKG wire holders from his chest but he immediately calmed down and was laughing again within seconds. He is such a good baby even when people are poking and prodding him.

Some precautions or advice we were given:
1.Don't leave him unattended in water (duh) as a seizure in the water could lead to drowning. I think at this point is his life being left alone in water in general could lead to drowning.

2.Caregivers of children who have had seizures should obtain CPR training for infants. I think this is true of all parents or caregivers though I haven't gone yet to get certified. I plan to before Jaxon begins solids though.

So that was our scary afternoon today. He hasn't had another episode since those two occurred. He seemed happy and wanted to play the rest of the evening. I am just trying to think of it right now in the best light--he just had a sleep jerking episode and not let myself get caught up in other forms Myoclonus that are epileptic in nature and are more severe/permanent.

Being a parent is hard on days like these. Now I understand how you would do anything for your baby not to hurt or be ill. All I kept thinking was please let it be nothing. I don't know how parents with severely ill children do it. They are so strong and courageous. Drew and I just kept telling each other it was fine until they told us the diagnosis. Thank God I have such an amazing partner to be there with me.

I am thankful everyday for what I have. I love my family. :)