on a serious note… our baby seizures story

By Scott Morris

as most of our customers know, the ro.sham.bo baby team is made up entirely of mom julia, dad scott and baby avery (7 months as of this writing). that’s it, we do it all, despite mom and dad both having full time day jobs. packaging and shipping, design, website, blogs, store visits, you name it. we even put the labels on our packages by hand. our baby girl is our inspiration for not only our baby sunglasses company, but is now our entire world (parents out there, especially first time parents, you know what i am talking about). that’s why we struggled with the idea of writing this particular blog, but also why we decided we should: on the one hand we did not want to label our daughter to the world as a sob story or “broken” in some way (keep reading, she is in no way either…), but on the other, when she started having seizures at 4 months old we scoured the web for stories about baby seizures, hoping for at worst informative but scary, and at best reassuring content, but not always finding it.

more to the point, we never found a story that matched exactly what we were seeing with our daughter, which terrified us. that’s the thing we came to find out with infant seizures: every case is different and terrifying in its own way, so we decided to get our story out there in case there is another parent seeing these symptoms in their baby and not knowing what it is or how to deal with it. our story has a happy ending and our daughter’s seizures were very mild compared to the violent, repetitive, and unpredictable episodes some families cope with. we realize that, are thankful for it, and by no means intend to minimize the much more serious struggles some families live with. the following are excerpts of notes we kept in the days leading up to our stay in the hospital, our 3 day stay in the hospital, and how she has progressed since. just writing this has brought up some of the same intense emotions we went through then; we hope this finds its intended audience and our thoughts go out to parents going through this.  -  scott, julia & baby a

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march 16, 2014, 8 am: i write this as we get settled into rady’s children’s hospital waiting for doctors to take a look at avery. for the record, let me back up and explain what has been going on. about a week ago, we started to notice that avery was having a strange reaction when she was waking up from naps. her eyelids started twitching really quickly and with no apparent control on her part and her face got really flush like she was holding her breath. she would also stare straight ahead without breaking her gaze no matter what we did. we only saw this when she woke up from sleep, no other times and it only seemed to last a few seconds, then it would be over as suddenly as it began. needless to say, we were alarmed, but she showed no ill effects from it so we assumed it was some strange sleep-related issue and would go away.

it did not go away. it got worse. at first it seemed like it only happened after naps occasionally. within a few days, it became clear it was happening after every nap, no matter how short, and the episodes were getting more severe. not only were her eyes fluttering, but now she was pushing her tongue against the side inside of her mouth and sometimes clenching her fists and stretching out her arms and legs. they also go longer, going from mere seconds to minutes in length.no matter what we did while she was in this state; gently blow on her face, snap, sing, clap, she was not coming out of the state from our actions, she just had to work through them and finally, thankfully, she would gently snap out of it and immediately be the happy, smiling girl she always is (note: we have attached videos in the links below of some of her less severe episodes to show what we saw and hopefully give some parents a hint about what they might be seeing. again, we struggled with the idea of including this content, but felt it was important because it would have been helpful for us to see as we struggled to figure out what was going on).

 

 

in our panic, all we could think to do was try to record as many of the episodes as we could so we could show our pediatrician. we were lucky that we were able to catch a few because we knew when they were happening, when she woke up. recording her episodes was the best thing we could have done both for our pediatrician and later for the pediatric neurologist. we called our doctor and explained the symptoms and it was his opinion that it was probably just something sleep related and nothing to be worried about. as it kept happening and once we were able to show the videos, they agreed we should get an overnight eeg. when we called to schedule one, we were told a the next available appointment was 2 weeks out. at that point, that was entirely unacceptable. 2 more weeks of this would have felt like 2 years. we called our pediatrician again in a bit of a panic and explained the situation. she lobbied for us, pulled some strings, and pleaded with the children’s hospital, and by morning, we were admitted. we will forever be thankful to coast pediatrics in del mar, california (shout out!) for doing that for us. that brings us to today.

we got checked in early this morning and went through the standard round of questioning from residents, nurses, etc. baby got all hooked up to her eeg gear (a series of wires that look worse than they are, though she was not happy when they went on), and she thankfully fell asleep somewhat quickly. selfishly, i was praying she would have an episode when she woke up, wouldn’t it be painfully ironic if she woke up perfectly for the first time in over a week while hooked up to all this gear! luckily (?) she had her most pronounced episode the second she woke from an hour nap; arms stiff, eyes rolling. nurses came in to watch and monitors went wild with activity.

  

after a couple anxious hours, the neurologist confirmed that these were, in fact seizures, and epileptic seizures (meaning basically, not an isolated event, but reoccurring). apparently, something like 10% of all children will have a seizure during childhood, but it is repetitive episodes that makes them more worrisome. so, now we need to figure out where in the brain they are coming from and if there is anything obvious on a brain scan that is causing them (scary!). nobody says as much, and we are hesitant to ask but we take that to mean they are checking for abnormalities or tumors. the scan will be tomorrow and we are told we will be here until she is seizure free for 24 hours. unless they intend to keep her awake for 24 hours, that seems like a tall order based on the last week and a half of seizures after every single nap.

somewhere between 2 and 4 am, march 17: everyone knows this, but sleeping in a hospital room is terrible. we have a love seat to share between the two of us, which means dad is sleeping on the floor. avery is not sleeping much because of the stressful environment, all in all, not so comfortable, but still happy to be here. julia is feeding her while she is tethered to her bed with wires, it is so sad. we have had some emotional moments too thinking terrible worst case scenario thoughts about the mri tomorrow and long term issues or impairments. all in all though, we are doing ok and i am so proud of my wife for handling this with the strength she has.

morning, sun barely threatening to come up: the only food accessible quickly is a mcdonald’s in the lobby of rady’s children’s hospital. this seems a clear conflict of interest of a hospital, but i will give them a pass because mcdonald’s sponsors the ronald mcdonald house across the street that houses and feeds families looking after kids staying in the hospital long after we are gone and with much scarier issues. fantastic cause and we are proud to continue giving to them after this experience.

the neurologist has given her a medication called keppra, clinical name levetiracetam. it is supposed to be mild and her hope is it can stop the symptoms immediately. we have some some lessening of the length of the episodes, but they have not stopped entirely. she is going to up the dosage, but it’s a good sign there has been a noticeable effect, and if the mri comes up clear we’ll be feeling pretty good. [note on keppra: it is supposed to have minimal side effects and we have been lucky not to see any noticeable side effects in avery, but we were warned of the possibility of dizziness, drowsiness, throat irritation and some other more severe issues]

2:40 pm, march 17: mri is done and we are back in the room waiting anxiously for results. poor baby has not eaten all morning and still can’t eat until we are given the all clear on the readout. tough day. the mri may have been the worst part of this whole ordeal so far, but only because we could not be there for it. you feel so powerless when you can’t even be there to hold her hand. because infants can’t sit still long enough to run the mri, they had to put avery under for the test. we knew it would go fine and the doctors would take great care of her, but it is terrifying to say goodbye and leave your baby in somebody elses care. that was tough, so glad she is back with us, even though she is very groggy from the sedation.  it will be a couple more hours before we know the results. baby is now down for a nap…

3:20 pm: avery woke up from her nap with no episode! first time in about a week! it is so strange to be so thrilled about something we just took for granted, but we are overwhelmed. called parents and close friends that were on alert to let them know the good news and couldn’t help shedding a little tear. looks like the medicine is working, so mri readout is next…

4:30 pm: mri preliminary readout looks normal! doc needs to confirm with the specialist tomorrow, but we have allowed ourselves to breath a little easier now.

5:15 pm: setback. i was about to call my dad to catch him up as she woke up from her nap after eating for the first time in 13 and a half hours! she looked fine for 10 seconds, then had another small episode. somewhat devastating after the highs of the last two hours and knowing that her dosage has already been increased once. the doctor has told us this means we should plan to stay overnight again.

sunday morning: rough night. slamming doors, hear rate alarms and general hospital noise kept the baby (and us) up most of the night, not that i was going to sleep much on the hospital floor. the otherwise very helpful nurse came in and suggested white noise and one point, turned on internet radio and it was set to extremely loud reggae blasting in the baby’s ear. she felt terrible, but we could not help but laugh a little bit. she was also nice enough to prop open a closet door outside our room that had been slamming all night with a trashcan and a note that read “shhhhh! baby sleeping!” – we saw that in the morning and were so thankful.

sunday, noon: we are officially being released today! she is still not episode free, but they are not after every nap anymore, and they are much less severe and long than they were. we were told the medication can take up to 2 weeks to full kick in at times and she was so impressed with how closely we monitored (and taped!) the episodes, that she had no problem sending us home to watch her.

5 pm: home, in bed by 5:30. there is truly no place like home.


no place like home! minutes after getting back from the hospital baby and momma sound asleep

aftermath: within days of being released from the hospital, avery’s seizures stopped entirely and we have not seen one since (as of this writing in late june, about 4 months later). she still takes her keppra orally twice per day and will continue to do so indefinitely, or until we can confirm that the reaction in her brain is no longer occurring. in about 6 months to a year we will do another eeg and see what’s going on with her little brain. the hope is that she will simply outgrow this and we can take her off the medication. luckily, she does not seem to have any side effects from the drug, so we are more than happy to live with this. we are so thankful for everyone, doctors, nurses, family, friends, that helped us through this, and we truly wish all parents out there seeing symptoms like this the very best of luck finding answers and overcoming what may well be the scariest days of our lives, as it was for us. if you have questions you can find our email address on our website.

oh, and as always:

little people deserve big people shades.