Toddler absence seizure?
My son is currently 19 months old. He had open-heart surgery with cardiopulmonary bypass as a newborn.
As soon as he started more dense solid foods at about 10 months old (rotisserie chicken, small chunks of pears, toast, avocado chunks, etc), he began having these episodes while he was eating: he would suddenly stiffen, and his head would drop back. He would stare blankly for 15-30 seconds, not responding, not looking around, not interacting normally at all. He is a very active, very alert, constantly engaged baby so this was extremely abnormal. After these episodes he would sometimes do some weird back arching movements, get very sleepy, and slump his head forward onto his high chair tray. He started crying and screaming after these episodes would happen, and I even tried feeding him standing up and he immediately fell to the ground multiple times trying this.
I am concerned it might be some sort of eating-induced absence seizure versus an allergic reaction? I have many non-ige-mediated allergies so I get atypical reactions, and he does see an allergist but they don’t do full panel testing at this age typically.
I took him to his pediatrician, and we ended up seeing GI. We finally got in to see Neuro and were admitted to the hospital for a 24-hour eeg. However, the neurologist was extremely arrogant and dismissive, and didn’t want to do the eeg while he was eating: the one thing that triggered his symptoms. They put the eeg on in the evening and the hospital provided no food until the morning: we gave him snacks but nothing had triggered an event overnight. First thing in the morning when breakfast got there he had multiple episodes in a row of head drop, no response to shaking and talking and just totally checked out for 20 seconds or so, followed by screaming and crying. We told the neurologist when he came in that morning and he told us he had shut off the eeg early that morning because no seizures were seen while he slept.
I tried to show him the videos and I’m not even sure if he really watched them and just said “oh he’s probably just daydreaming.” He actually refused to even see us in his clinic for a follow-up appointment and said no one is allowed to see another doctor in the clinic if they’ve already been seen by one of them. My insurance won’t cover any other clinic. We tried sending additional videos to Neuro and they refused to watch them. Finally our GI doc sent him one and he said he’d look at the overnight eeg from a sleep study we were having done for him: however, the sleep study tech said he didn’t know how to put the eeg leads on a toddler who moves around too much, so they just didn’t do it. I let Neuro know and they didn’t seem to even care.
We were referred back to SLP, PT, OT, GI, cardiology, and my pediatrician. Everyone cleared him of any concerns from their specialties and we were told Neuro would be the best bet for answers: but he was so confident my son is “just daydreaming.” The episodes got so extreme that my son now refuses to eat any real solid food and will only take purees/mostly just smoothies and melty baby teething crackers. We have had to supplement with formula because his diet has regressed to less than it was at 8 months old.
Can anyone tell me if this sounds like a neuro issue or what we should do?