My 11 week old daughter was born 5 weeks early. She is just coming out of a second week long stay in the hospital (first because she would turn blue suddenly during her first cold and most recently due to RSV complications). During the first 11 day stay, she started exhibiting seizure like behavior - suddenly dropping into a dreamlike state - eyes rolled back into head, sometimes her hands or feet would move rythmically, a couple of times her O2 sats fell into the high 70's (O2 blow-by was used and immediately she returned to 100). During that stay, she had a CT scan (results were normal), spinal tap (normal), both 30 minute and 24 hour EEG's (both normal - and there were some of these episodes during that 24 hour one), an EKG, and a 24 hour channel test to determine if GERD could be causing this seizure like activity. The channel test was very revealing - she had 12 episodes of acid rising for more than 5 minutes at a time (she only had to have 1 to diagnose), 12% of the time of the study she had acid in her esophagus (only 5% would have diagnosed), and there were 98 instances of acid rising. Obviously she has a serious problem with GERD. The channel test also revealed that the GERD causes obstructive apnea (explaining the blue spells and why it appeared she was breathing through them - her muscles were moving to breathe, but she was not passing any air through her nose).
Since that time, she is being treated by a pediatric gastroenterologist and we believe that we've controlled her GERD because of behavior change. She also has colic and a suspected milk protein allergy. However, the seizure like activity has gotten worse - more frequent, more activity, and more significant changes. At first, the seizure like activity was diagnosed as Sandifier's Syndrome, but due to what she is doing, the gastroenterologist was concerned that it is not Sandifiers after all and recommended we have her re-evaluated by a neurologist again. Her episodes happen all times of day - during sleep, during awake periods, after nursing, hours after eating - there does not seem to be any connection with eating / being too hungry, etc. During these periods, her eyes roll back or shift very quickly right to left, she smiles very quickly on and off or has a twitch on her cheek, her breathing starts a very distinct pattern. At times, one hand, one foot will tic. There have been a couple of episodes where her entire chin has moved - shaking for 10+ seconds. In most of these, her tongue rests against the top of her mouth and moves very quickly making a smacking sound. In some, her tongue comes out always going down toward her chin on to the left. When she comes out of it, she immediately becomes lucid again (if it happens when she is awake she completely "checks out" and it is as though she looks right through me) and becomes fussy. It wakes her up out of her sleep to become fussy and then goes to sleep quickly again.
During our most recent hospital stay, she experienced the longest episode to date - at 10 minutes long. Thankfully, the attending doctor and her residents happened to come in during the middle of it and witness it for herself. She was very concerned because my daughter's eyes were completely fixed (it had happened in an episode the day before that the nurse had witnessed also) and her eyes kept going up looking right. The attending physician said that really was not consistent with Sandifiers and immeidately called in neurology (we have another appointment with another neurologist next week).
The neurologist came in and did an assessment - ran another long EEG (around 14 hours). Of course, my daughter did not have one of these episodes during this particular one. He recommended that we consider doing a five day long EEG, but really felt that this is just "weird baby behavior".
My questions are - what should I do? I don't want to put her through a lot more testing, but I have a gut instinct -(I have been asking about this behavior since she was born in the hospital!) that something is not right - and I have two other children age 2 and 3 so it is not as if she is my first. Is there any way that a seizure would not pick up on an EEG for an infant? If these are not Sandifiers and not seizures, what else could they be? What should I look into?
Wow I am really sorry to hear that you are going through this. I just said a prayer for your family and your baby. I was always told that seizure activity would show up on an EEG. I also seen an episode of Mystery Diagnosis where their child was seizing constanly and then would cry a lot and the doctors said nothing was wrong. I can not remember the name of the disease but I know it is not good if not diagnosed early on. Oh I wish I could remember....this sounds so familiar to their case and (not to scare you) but their daughter started having strokes at about 15 months old. They did however figure it out and she lived. So dont worry about that. I should not have even told you that. But like I said this sounds so familiar....let me look....I can't find it but here is a listing of diseases found on the show...
I breast feed and have cut out all dairy from my diet (including anything that has milk or milk protein products in it) -- it made a tremendous change in her, but unfortunately did not reduce the seizure like activity.
Thank you SO much for posting this. I did some research - I believe the episode that you must have been mentioning was for Moyamoya disease. I was able to find a brief snip of the video (unfortunately the Discovery Health website only has episodes starting in season 3 and that episode was season 2) and what I heard is eerily similar to what my daughter is doing - her eyes have done what that little girl did. Apparently that is caused by a narrowing of the vessels - my husband has hydrocephelus (sp?) that suddenly occured without explanation at 26 and his brother has issues with blood flowing to his kidneys for a similar reason - so this is definitely something that I am going to address with the neurologist when we go next week. The activity is getting worse, which makes me doubly concerned. Thanks for your input!!!
My son started having seizures when he was four months old(Feb. 2000) with no warning. Eyes rolled back in the head, legs/arms jerking. He had actually been to the doctor the day before and received his shots and was given a clean bill of health. He was transported by ambulance to the hospital and they almost sent him home until he started having another one in the ER. They transported him to Vanderbilt Hospital and they did every test you could imagine on him. All came back completely normal. They put him on phenobarbital and the seizures stopped. They said that he had a Grand Mal seizure. Then in July he had another episode with seizures, they upped his meds and they stopped again. They could never give me an answer as to why he had the seizures in the first place. They have no idea why he had them. His neuerologist took him off the meds when he was 2. No more episodes. He is happy and healthly to this day and has only had minor side effects from taking the phenobarb for so long.(he is in speech) but other than that we have had few problems. I know how scary this is because I was scared to death when it happened to my son. Everything in the world ran through my mind. I do hope that they can help your child because I know how hard it is to see your child going through that and seeing them in the hospital is the worst thing ever.
Oh my goodness! I am so glad I have happened across this site. My daughter does exact same thing! Her MRI normal, 24 hour video eeg she did those things with the eye movements, smiling and tongue!! Neurologist said, "funny baby stuff." I can't accejpt it. I see it and know what happens and it isn't normal. One nurse actually did see and thought was seizure also. Have you gotten any further answers. I'm going to keep trying. If i find out anything I'll let you know right away. I have also had difficulties with her formulas and lactose and she poops like every 3 days. I use similac sensitive, have tried many. What do you use? My daughter was born 6 wks early and is now 2 months old. I've noticed this stuff since she was 14 days old. She did have one 1 hr long eeg that was abnormal very early on, but neurologist says "preemie thing." Find a good pediatric neurologist who will want to figure this out. Mine sucked and I'm looking into others.
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