Diagnostic Dilemmas and Testing
Hey everyone. I could really use some advice on what to do for my two-year-old son. It’s a long story, so here we go: a couple months ago my son got an ear infection and was put on antibiotics, around that same time he began doing this squinting with his right eye, randomly, but nothing else unusual. Fast forward 2 1/2 weeks ago and my son had his first “absent-seizure like” spell (he had a cold for a little over a week before this happen but no fever and COMPLETELY his wild, fun, happy self). So none of these episodes or spells can be febrile. Anyways, so the first spell happened on a Wednesday which also coincided with the start of a very runny nose (before his cold simply consisted of stuffy nose and sneezing), but My husband said he’s just messing with you because he snapped out of it pretty fast, maybe 10 seconds and returned to his normal feeling great self. Thursday comes along and now my son after acting totally normal most of the day, around 4 pm had another “absence seizure like” episode for just a couple seconds this time, but I knew something was wrong and the blank stare and limp ness in his body told me he couldn’t be messing with me, so I took him to the ER immediately, where he had several more episodes. The hospital near my house sent us to MUSC in downtown Charleston, only about a 20 minute drive, to be admitted to the pediatric unit and be evaluated for absence seizures. We arrived at about 11 pm, and they did an EKG, an EEG, and a fast MRI (which involved me hold my son still, very traumatic for the both of us) and of course bloodwork. Side note: the EEG was put on at about 5 am, my son was extremely exhausted and slept almost the entire time wearing it, until they removed it at about 2 pm. It’s now Friday late afternoon, and the doctors come back to us and say everything came back normal although your son has the enterovirus and rhinovirus, but these aren’t seizures and he has no fever and was acting pretty normal, so we left and I felt reassured that my baby would be just fine. We get home Friday evening and my son is running around playing, and as the night goes on he becomes very disoriented and confused, started walking strange, walking on tippy toes, and stumbling very uncoordinated, it was as if he was on some kind of heavy duty drugs but they gave him nothing but fluids at the hospital and I hadn’t given him anything since he’s been acting like he feels good apart from these episodes: so nothing in his system for him to act this way. I have NEVER seen my baby act this way, not on his most sleep deprived nights. Anyways, after about an hour maybe a little less of this strange behavior my son had another “absent like seizure” episode where went limp with blank stare unresponsive no blink for a few seconds. After this he was very tired and fell asleep immediately, no rocking necessary. And throughout the night he was completely unresponsive, I mean like a rag doll. He would not wake up for me, the most I got was him to roll on his side but that was it, and the only reason I tried nudging him to begin was because he had stopped breathing for about 15 seconds soon after falling asleep. ** side note: I have coslept with my son his whole life, having breastfed for 1 1/2 it just made sense, so I know how this little boy sleeps, and how he wakes at the slightest movement I make. So for him to be a rag doll and not budge except for ONCE ALL NIGHT with the small roll to side, it was very scary for me** another side note: I have the owlet monitor so I had that on him for piece of mind and his heart rate and oxygen were normal** anyways, so my husband calms me down and says he is exhausted and has this virus and everything was normal just let him sleep, so I did. Saturday morning rolls around and my son, is still sleeping at about 9:30am so I tell my husband it is time to wake him up, we finally get him awake, or open his eyes and look around but when we brought him in the living room no matter how hard we tried he was completely limp and in that blank stare unresponsive eyes open, and wouldn’t come to after minutes of trying. My husband and I had all his favorite toys out everything trying to snap him out of it, so we both decided we are going back to the Er right now because something more is happening here, my son, still no fever, is getting much worse. The entire way to the ER downtown at the children’s hospital, he was going in and out of these “absent-like seizure” episodes that were beginning to have another symptom where he’d lose control of his tongue and hand ,and in between he was in a haze. The ER doctor notices my son in a hazy state and he can’t grab sticker she is trying to give him no matter how hard he tried, he was also off balance. So, Saturday around 12 pm he is admitted again to be observed overnight, however the only thing they had attached to him was an EKG while he slept and fluids. **sidenote: my mother-in-law just so happened to be coming into town that weekend so she met us at the ER right when she got into town, and she saw my son still hazy but not having seen an episode, anyways she mentioned maybe he’s dehydrated and the doctors for some reason listened to her over me his mother with him 24/7 and ran with that idea (which not only was he on fluids the entire time at the hospital two nights before but he was drinking plenty while at home Friday night, which I showed the doctors video of him drinking from his soppy cup Friday night). Anyways, around 2pm on Saturday, my son woke up from his nap crying very hard, eyes wide open looking at me somewhat responsive for a few minutes and then within seconds he went completely limp, blank stare still blinking and then completely unresponsive to blinking or anything, he was a rag doll limp, eyes wide open but completely blank stare no blinking no movement FOR TWENTY MINUTES! TWENTY MINUTES! and a nurse was in the room for the entire thing trying to help me get him to respond but nothing so she called the doctors and by the time they got there from the other building he was starting to blink and move his eyes around although completely limp still. **sidenote: his heart rate and oxygen were fine ( from what I remember, i was kinda panicking) but the nurse didn’t say anything about it, and he was awake when this started and I was holding him, so he didn’t jump up too fast or anything of that nature that resembles fainting, and again no fever. After this my son was very out of it the rest of the night, very unlike him, he has been described by doctors, strangers, everyone as being so alert from the moment he came into the world. ** I had never seen my son do anything like this before, not when he’s had a 104 degree fever, I mean not even close. Believe it or not but the only thing the doctors did was come back later that evening and check his balance, and sure enough he was very very wobbly and couldn’t stand without help. The doctor seemed concerned, and wanted to see how he was Sunday, but did ZERO further testing on his brain, NONE. The only thing they did was repeat blood work and he wore the ekg on his heart while he slept Saturday night. That’s it. Sunday morning comes and I can’t tell my son is off in a little haze, but trying and wanting to play. But, I started noticing very subtle changes in his mannerisms and coordination, that may be insignificant to someone who doesn’t know him, but I just KNEW something was up and told the doctor all of my concerns, which he came in and basically said well everything is normal his white blood cell count is really low but it came up a couple points & he has that virus but the heart monitor he slept with was normal. I felt as if I was talking to a brick wall, and the doctor basically told me, sometimes mother’s see things before everyone else until it progresses. That’s what he told me, and he discharged us from the hospital telling us it’s just the virus and kids act strange sometimes when they’re sick, but I’m sorry, he has not had a fever this entire time and he has been playing normal in between these episodes and now his balance is off this isn’t right, I have a gut feeling. So, we go home, and Sunday night another episode and in a haze almost all night, Tuesday and Wednesday we meet with his pediatrician and he sees everything I’ve been noticing, the subtle changes, and advises if you think it gets worse go back to the ER, because the neurologist he referred us to could take 2-3 weeks to get an appointment. Since we left the hospital, my son is having more “absence seizure like episodes” every day, more and more and the haziness and disoriented behavior is becoming longer, it’s just not getting better along with added symptoms of lip smacking, eye rolling, rapid blinking, looking up nd to right with head down, so many things just keep happening and he has never done anything like this before not once. So from what I am seeing is these episodes are connected the the haze and the strange behavior and mannerisms and the time during the day that my son is himself is getting shorter. So, Thursday comes around and I take him back to the ER and the doctors and nurses experienced the completely limp unresponsive episode, we got there right in time for them to finally see (despite the one nurse with me for the 20 minute long one), so the neurologist ordered and EEG, his first brain test of any kind since his 20 min long episode on Saturday now Thursday, which of course was applied while he was in a haze after having the episodes with the ER doctors, and left on for only 25 minutes in which he fell asleep, and took it off while he was asleep, he was out that cold. The neurologist came in, extremely rude and basically attacking me, he says “ the eeg is normal for a drowsy toddler” and there is “ZERO percent chance these are seizures” while throwing his hand in my face. I was not heard at all, and because my son was going in and out of these hazey disoriented spells, which were now being followed with EXTREME spastic hyper spells where my son would start licking things and run everywhere and then out of nowhere snap back into a haze and having a staring episode and the cycle repeats, the neurologist didn’t listen to me ( as he came in, of course, for maybe five minutes while my son was acting very spastic and he said that’s “normal for a toddler”. Again, this behavior and everything going along in conjunction is NOT normal for my toddler, in any way and in any circumstance and the doctors at the ER saw that, and the neurologist response to the doctors concern was “somethings going on but we aren’t sure” so I was given a urgent neurology follow up with the same neurologist at MUSC. Friday, Saturday, and Sunday were awful for me because my son just kept getting worse, nearly all day on Sunday he was having these staring episodes at least 50 times that day if not more and basically in a constant haze, it took everything inside me not to rush back to that ER, but frankly I felt like they weren’t going to listen to me again unless I came in with my son not breathing, blue, or convulsing violently. To me, these were emergencies, they still are in my mind. Because I still don’t have answers. The following Monday, we had our neurology appointment and my son wasn’t doing great that morning, the nurses saw the staring episodes and I brought a list of every thing that had happened since we left that hospital, and where I felt the doctors went wrong. And that was not investigating that 20 minute unresponsive blank stare, rag doll limp episode that not only I, but a nurse, witnessed and she was just as concerned and desperately trying to get him to respond as I was. She told the doctors everything and made a note in the computer she said. ** sidenote: this nurse made sure to come to our room before she left and she said advocate for your son, I’ll be back on Wednesday** anyways, so the nurses at the neurologist saw a couple staring episodes and he was in a haze and oh, I forgot to mention he has also become very irritable and if I try to keep him from doing anything dangerous he FREAKS OUT I mean where I have to gentle lower him to the ground because I’m scared he will smack his head on the ground. Which, again, although I now very much the terrible twos for most toddlers, he has never acted that way before this and has always been a very easy going, easy to console, happy, alert, agile little boy. I have been so blessed, and I still am even with all of this, he is my world. So, the neurologist FINALLY listened to me, and his nurses, and I’m sure realized that enough EEG monitoring hasn’t been done for him, and so they ordered a 72 hour ambulatory EEG. That was Monday, November 5th and his appointment is Monday the 12th (earliest available) and my insurance still hasn’t approved it. After his appointment, a couple of days I saw him improving and getting better, the first time I had felt him connecting with me and making eye contact in forever, but then on Thursday my husband told me not to let our son nap since he has slept in a little, so I made the mistake of skipping his nap and then it all began again. I do not know what to do but I know I cannot continue just waiting around for a test to be done, when nearly 3 weeks have gone by and my son has only gotten worse, and I’m not a doctor but I have my degree in Psychology so I’m familiar with childhood development and abnormal and normal behavior and I’ve been researching and learning as much as I can, and everything is pointing to this being seizures, what kind I don’t know anymore because they seem to be a couple different ones possibly. My instinct is telling me something is wrong here, and sitting back waiting for them to get EEG proof or so bad that he is having convulsive seizures is the hardest thing I have ever dealt with. Any suggestions or opinions would be greatly appreciated.
My husbands uncle has epilepsy
My son has had no fever whatsoever the entire time, normal vitals- sometimes a high heart rate but they didn’t say much about it and just said he was crying that’s why
- over the last 2 1/2 weeks my son has only had 9 1/2 hours total of EEG, the first 9 were on his first eeg our very first stay at the Hospital and while he was mostly asleep and before things progressed (same with the fast MRI ) and his second EEG only 25 minutes long after an episode middle of haze and fell asleep. Mostly asleep with it again and this is 6 days after that 20 minute long episode.
- Could Saturday’s 20 min long episode have been a nonconvulsive status epilepticus? Or have somehow caused this to keep getting worse?
What else could these things point to? The episodic nature, the abrupt onset with illness, the hazey spells in between, the behavior the mannerisms and motor skills..
If I cannot get my insurance to approve his 72 eeg by Monday, should I get him admitted and stay at the hospital for the test? Or just wait?
What if it’s deep in his brain and the eeg doesn’t pick it up?
Or could this be something else?
I’m desperate here, any advice would be awesome! Pray for my son! Thanks!