Ah, how much can change in a day. Yesterday, it was 65 degrees and Max seemed fine. Today, it is a snowy winter wonderland and I am a little panicky about the possibility that Max is having seizures. I fear them. No, make that, I am terrified of them. Max had seizures at birth and a grand mal at one and a half, and the experience was just as traumatic as those two weeks at the NICU after he was born.
When I was at Max's school last Friday for his birthday, a couple of aides mentioned that they noticed he sometimes stared off into space. I've seen Max do this, but I can snap him out of it by saying "Max!" The underlying fear here is absence seizures.
Here's a video of a girl having absence seizures. They're subtle, but watch how she spaces out and her repetitive jaw movements. I first saw this video over at Fighting Monsters With Rubber Swords; watching it was worse than seeing a horror movie.
The second I left the school, I called the neurologist. Who got back to me and confirmed that they weren't absence seizures if we were able to break him out of the trance by calling his name, by touching him, by giving him a new visual target.
So, I shot off an e-mail to Max's teachers, therapists and the school nurse mentioning the above and saying they should try to break his stare if they see him doing it. Tonight, I came home from a work holiday party to find a form in Max's school book from the nurse. The top of the form says, in all caps, "ASSESSMENT OF SEIZURE ACTIVITY." My heart skipped a few beats. I read down the checklist. She noted he was staring, his arms and hands would stiffen, and that in the "post-seizure state" he would spastically move his arms. And that "this is worth reporting to the neurologist." Nowhere did it mention whether she'd tried to break his stare. Which is why I am sitting here at 12:10 a.m. and worrying.
I know this nurse means well. Yet I am agitated that this Form Whose Name Shall Not Be Spoken was sent home to me, no phone call. Even if she is just making observations and not saying it definitely is seizure activity (and she just chose to make her notes on an unfortunately named form), I tend to be very, very literal about this sort of thing. I also know that I am agitated because I am scared that what she is saying is true. It seems incomprehensible that my sunny little boy could be having seizures in front of my eyes.
I am going to sleep now, it's what I need to do.
5 weeks ago
Oh Ellen...I would demand 24 hour EEG monitoring. Plain and simple. Even if you have to lie and say that you saw rythmic movement. Call his neuro and get that appointment, you will feel better! I am hoping he is fine!
ReplyDeleteI understand the seizure thing...did you ever fear that Sabrina was having them? I still have fears that Jonathan will start, or if he gets a fever, or if he is to bump his head really hard. He hasn't had any since they were finally stopped at about 36 hours old, but it is still a vivid memory, to the point I can still feel it on my body...him having a seizure while I was holding him. I am in tears thinking about him laying on the triage warmer and helplessly watching him seize. And he seized for HOURS! UGH!
Jacob did and Victoria is doing this yucky thing that we had Jonathan get 24 hour EEG monitoring for. His never proved anything, they said he had 'myoclonic movements' which if you look up the definition and see what they were doing you would wonder why they said it was that. Jacob didn't do it much, but Victoria does it all the time, and it involves arching of the back, stiffening of the limbs and tightening of all the facial muscles with a tounge thrust. Sometimes it is repetative, other times it only lasts for mere seconds.
PTSD...I so have it. They do say it is completely possible from a traumatic birth. I just wish all of these worries would disappear...I know they never will though. Puberty is coming sooner than I would like, and that is the next big hurdle with Jonathan. Sheesh.
Hang in there Ellen. Whenever in doubt err on the side of caution. These kids are so precious, and we are their best advocates. Get him in, get 24 hour monitoring...an hour EEG just won't do it, and put your mind (and possibly his) at ease.
Hi there,
ReplyDeleteI just came across this blog and wanted to comment. I have C.P. too, and was looking to see what I could find blog-wise about someone in a similar situation to myself (I'm in my 20's with Spastic Diplegia, but living on my own, etc.) I didn't find that, but am happy to read about your sweet son :)
Anyway, I am also a special education teacher. I think it is possible that he might be having absence seizures. BUT, there is also something I "affectionately" call the CP Stare. Sometimes, kids with CP, (myself included, back then) tend to stare off into space..... I remember people telling me I was doing it, but I never realized it. I would catch myself just a few times out of the many times it happened. I'm not sure why it happens to us. But maybe. just maybe, that is all it is. Like I said, it might be the seizures, but hopefully, it is just that CP stare.
24 hour EEG will hopefully prove it's nothing and if not you will have a plan of action!
ReplyDeleteThat being said- I hate even seeing the word "seizure". Noah's "seizures" as a 5 hour old newborn were apnea episodes, he would just stop breathing, turn greyish, and then "snap" out of it... thank god he never had any more episodes after his second day of life.
I am SO scared he will have a seizure, everyday I work I think about it throughout the say. I have even delayed vaccinations out of fear it will trigger one. When he was a baby and did something 'weird" I was always freaked out that it was seizure. God, did I say how much I hate that word??
Anyhow, best of luck, hope the EEG proves it's just a staring thing he does!!!!
They are so difficult...my daughter does both just spacing out...and absence seizures. We always just thought she did spacing out episodes until other type of seizures started.
ReplyDeleteMy thoughts and prayers are with you...it is such an emotional rollercoaster with our kids!
I don't have any experience with seizures...but I'm hoping and praying it isn't so. (((HUGS)))
ReplyDeletewow thanks for sharing! check out my blog www.themessymonkey.blogspot.com
ReplyDeleteI'm going to sound like a complete freak on here, but IF Max is having seizures then it sounds like a best possible scenario. I'm not saying that you WANT your child to have seizures, but these sound mild and unlikely to cause him any harm.
ReplyDeleteDo whatever kind of EEG you want--I've never wanted a 24 hour one. I feel like if it isn't bothering me and it isn't bothering him then it odesn't really matter one way or the other.
Freak, see?
Oh, boy. What parent WOULDN'T take this sort of form literally? I'd say the nurse could use some work on her bedside manner...
ReplyDeleteI hope you get the answers you need.
xo
I'm sorry you are dealing with this. I watched the video. Crew use to have those seizures hundreds of times a day. The neuro said that sometimes the meds are worse than those little seizures. This sounds horrible but we didn't medicate until they turned into grand mals which scared the heck out of us. I'm wondering if his med levels are low now because I saw him doing the CP stare a couple times a day. Its hard to know if they are seizures or not but I plan to do the blood work to check out his levels. The grand mals do scare me... the absence seizures not so much.
ReplyDeleteI hope you get it figured out with Max! Best wishes.
((Ellen)) you seem to getting good advice here. Take care of yourself so you can be strong for your little ones.
ReplyDeletehugs and drive-by chocolates.
Hi Ellen,
ReplyDeleteI'm sorry you are going through all this and while your husband is out of town. I wish you the best and I'll be crossing my fingers for you that Max is not having seizures.
Christine
Thanks, everyone, for the incredible support. The neuro doesn't think it was a seizure, more on that in a post after kids are asleep. Bird, I do not think you are the LEAST bit crazy, you are right, in the scheme of seizures absence aren't the worst (we lived through a grand mal, the worst). Still, I think that when any kind of seizure keeps happening and goes unchecked, it can do damage You should check out the blog I linked to in yesterday's post, Fighting Monster's With Rubber Swords, Rob talks about how he and his wife were saying they would be relieved to find out their daughter was having absence seizures since it would mean a diagnosis, as opposed to just worrying. Anonymous special-ed teacher, welcome, I am thrilled you found us! E-mail me me at lovethatmax@gmail.com, maybe you can do a guest post?
ReplyDeleteEllen~ Again, late on my comment. But, I've actually had this up for some time, trying to get through videos throughout the day. I even solicited my husband to read and watch.
ReplyDeleteFirst, I am very, very sorry that you even have to consider that this is a possibility. I pray for you and for Max that this is not so. Maybe it is the "CP stare". I don't know.
I am also sorry that the nurse may not have indicated everything that happened well? I'm hoping that she "forgot" to mention trying to break the stare. I'm hoping. But even then, you're not getting clear information and it's a time that clear information is needed. I wish I could lightly slap her hands and tell her "no, no". She should know better.
Get an EEG/Sleep study, whatever you want to call it...get it. I agree with Sarah H. Lie if you have to, or stretch the truth, or just be unsure. The docs will want to err on the side of caution, just as you do.
On a personal note, I'm glad you posted this. I just read something in a forum about this today and will go back and link that person to your post. But I'm also thankful because we went through the videos...and now, I'm wondering if what keeps my Alex up at night is seizures.
He is has Spastic Diplesia, as anonymous has, along with autism, yadda, yadda, yadda. But he often is up at night doing 'strange' stare off into space things, strange eye movements, strange jaw movements...but he's ringing as well. You can try to break it, but he goes right back into this position. We've said things about it before, but it continues. He's on meds for seizures but...now I wonder. His other seizures have always been at night.
Now I'm worried for my Alex as your Max. I'm going to do research and get with our neurologist again (we just saw him) and go from there.
One missed seizure is too many.
Please let me know what happens from here for you all.
Re the sleep study, its the wrong test. A sleep study is meant to determine whether you have a breathing problem not seizures.
DeleteSeizures are the bogeymen in my back garden late at night.
ReplyDeleteThey are the reason why we all still sleep in the same room.
BC had quite a few at birth and none ever since, but just knowing that there's that risk, that the wiring has been skewed a little and could send a spark in the wrong direction one day, always stays with me.
I know the risk reduces over time and I also know now that I have quite a few friends whose kids have seizures that they aren't as terrifying as they seem, but still, it's another diagnosis, another thing to learn about, to manage, to have to keep checks on.
I am not impressed with the nurse's medium of communication. VERY poor. I'd be writing a tactful letter encouraging a change in the protocol in such situations. DEFINITELY a phone call.
AND I really am glad to have seen from your next post (yep, sneakily read the next page) that the neuro has given you the all clear xo
I understand what you mean. Jude has up to 6 seizures a day and fighting a monster with a rubber sword is the best way to describe it. His smile is gone, he won't roll over anymore, etc. You have so much in Max though so i don't think he is having seizures. Jude's seizures affect his entire brain so they are very difficult to control.
ReplyDeleteAbby has so many seizures I've lost count now. In the beginning I thought they weren't yet her neurologist said they were. Seizures don't scare me as Abby only has minor yet frequent seizures.
ReplyDeleteClara