Were seizure like episodes actually captured on EEG? Did he do the weird stuff while the leads were actually on? It's possible to have seizures, but have a normal EEG if you're not actively seizing.However, not all abnormal movements are seizures.
My son is 5 weeks old, I am not sure of his height right now but he weighs 9lbs 4oz. his medical history is complex and I believe it is valuable information so I will start with that..When my son was exactly 1 week old we went to his first pediatrician appointment, they noticed he was looking a bit yellow so they did a bilirubin test the levels came back critically high (21). We were immediately brought back to the hospital and they started him on bili lights however they never tested his bilirubin before we discharged from the hospital I had him at, so we truly dont know how long his levels were that bad. We are RH incompatible so I am certain thats probably what caused the really high biliWhile hospitalized for the bilirubin, we quickly noticed our son was having problems breathing. He was holding his breath for pretty long periods of time. A nurse told us at one point that his respiration rate was only 14.. he was having desaturations and bradycardia with this so he was quickly life flighted to a hospital that was better equipped for this situation. Our son spent 1 night in the NICU and then 9 days in the special care unit. It took him EXACTLY 48 hours to have another breathing episode at this hospital. He was life flighted at 10 pm and then 48 hours later at exactly 10 pm he started having issues again. They did a 1 hour EEG and told us there was nothing substantial And that they didnt find it necessary to do a 24 hour EEG. they decided to try Pepcid 0.2mg because they started to think this was reflux related. At the same time they started the Pepcid he stopped having these breathing episodes. They did not run any further testing and just stated that he was having reflux and was holding his breath because of the acid coming up.My son is now 5 weeks old. We were home for less than 2 weeks and we are now hospitalized again. On Wednesday around 3:30pm our son had what looked to be seizures. His eyes were looking to the left, they were sort of vibrating rhythmically in small side to side movements (not across the entire eye. They stayed looking to the left but kind of vibrated??), and he was unresponsive. We snapped in his face and tapped on him, talked to him and everything and he just was not responsive. He ended up doing this 3 times back to back. Each episode would last about 30 seconds with a 1-3 minute break between each of them. We took a video of it and showed it to our pediatrician who immediately told us with certainty that our son was having seizures. He was admitted to the hospital that night.. they did blood work and did find his electrolytes slightly out of normal ranges, however just a few hours later when they repeated the labs he was back to a healthy range and I was told that couldve happened because of the IV fluids he was on..Once again, our pediatrician made the call to send him out to a better equipped hospital. They sent him to a childrens mercy he was there for 24 hours on an EEG which they did not find anything on.. they told me hes not having seizures and that this movement is normal Im sorry but I truly dont think this is normal. Ive never seen a baby do this and our pediatrician found it alarming enough to send him out to childrens.. our pediatrician has 30 years of experience. Hes a smart guyChildrens mercy discharged us with no answers. We begged them to run more tests or consult with a neonatologist and they refused we left that hospital and went to another one in the area that is well known for their high quality PICU & NICU. we went in and showed them the video.. the nurologist that watched the video said he also does not think this is seizures, however he doesnt think its normal.. right now the plan is to do an MRI tomorrow. In the past he has only had CT scans done, but nothing was found on them..I am absolutely desperate. Our kid is being life flighted twice in his first month of life, and hes spent nearly half of his life in the hospital at this point something is wrong, and no one knows what direction to point us in I asked about the eye movement possibly being related to a balance issue or an issue with his ears and they told me no.. Ive asked if reflux could cause it and theyve told me no Ive asked what could cause it and they give me broad answers I need a direction to go with this. Neurologists dont seem to be finding anything. Could this be a cardiac problem?? Does anyone have any advice on what to ask for if the MRI Comes back normal? Our son needs help. He is miserable. He doesnt sleep, hes not eating very well he gets hungry every two hours and I dont even think hes getting enough milk because he falls asleep every time hes eating and wakes up so upset because hes starving he doesnt let me put him down. I am not being dramatic when I say I have to hold him all day and all night. He will not sleep unless someone is holding him, and usually that someone has to be me. I need help something is wrong and I cant keep doing this. I dont have the energy in me to keep fighting with these doctors.. please help