On February 15, 2009 Brad wrote the following in our Facebook Group called "Research and Information on ALTE (Apparent Life-Threatening Event)":
Friday morning my wife Jo tried to wake up my son and it took almost 2 full minutes to get him to a "normal" state. He was very unresponsive, cold and stiff limbs and didn't do the "startle reflex" that infants do when you wake them up. Once he finally woke up he was his normal happy, gurgling self. To make matters worse, this isn't the first time something like has happened. Total of 3 times in the last month he's had similar "episodes". His pediatrician initially said that the limbs being cold was normal as this happens to many infants when they go into a deep sleep. As far as the other part of it (the unresponsiveness), he thought that could just be my son being in a deep sleep and not necessarily anything serious. However, he said that if it happened again he wanted to know so that they could run some tests. Yesterday was the "it happened again", and Jo took him to the doctor right away. The pediatrician didn't find anything wrong with my son during the exam and referred him to Mayo Clinic for a full workup by the pediatric specialists.
So, we were admitted that night for observation and testing. Met with a couple of doctors and they gave a general diagnosis of "Apparent Life-Threatening Event", which didn't really make us feel any better. They decided they wanted to do an EEG to check for seizures, an EKG to check his heart and blood work to check the rest of his organs - particularly his liver and kidneys.
The EEG was first and the results were "beautiful" according to the doctors. Then they did the EKG and this morning they told us that those results were completely normal as well. They tried TWICE to get a blood draw to check the other stuff, but that didn't go so well. To us it seemed like the people doing the draw didn't really have much experience trying to draw blood from an infant. We actually didn't end up having any successful bloodwork done, but it turns out it's not a huge deal anyways.
The next morning we met with a whole panel of doctors, led by the head of the pediatric department. After reviewing the case and all the details, they've determined that there is nothing wrong with any of my son's major organs and that we most likely will not find an underlying reason for these "ALTEs". That being said, we're going to follow up with our regular pedatrician to check for smaller things like GERD, etc, but on an outpatient basis.
While we're very happy to know that our son is apparently extremely healthy from head to foot (literally), we're still wanting to make sure we cover all the bases of what could be the underlying reasons for these episodes. Doing some research on the 'net hasn't provided us with a lot of additional information, so I decided to create this group as a way to hopefully gather more information from others knowledgeable in this area.
All other posts are updates that I have added to the group.
February 16, 2009
6:34am We are actually looking at getting a sleep monitor for our son. When we we consulted with the specialists, they seemed pretty firm that a monitor would not be effective in our situation but last night I felt I was waking up constantly in a panic to check our baby. When we were at the hospital, I was adamant that I was not coming home without a monitor but then I allowed myself to be talked out of it by the specialists. Today we are consulting with baby's regular doctor and he told me at the beginning of this process when I took him in that I should let him know if I get any grief about getting the monitor. I will be doing that today!
We are also fans of the 'family bed' (I think hubby had to be convinced in the beginning but now is firmly on board...lol) and our son has slept with us since the day he was born - including his birth hospital stay AND the one at the Mayo Clinic! (We use a co-sleeper http://www.learningcurve.com/product/detail/Y3171A2?locale=en_US ) We originally got resistance when we arrived at Mayo via a resident who informed me in a stern and disapproving manner that they do not recommend cosleeping to which my reply was "Quite frankly, I really don't care". She retreated and told us to consult with our nurse, which we did. The nurse immediately removed the crib from the room and replaced it with a bed. When the pediatric specialist came in to consult with us the next morning, he looked at our cosleeper and said (direct quote) "That is a perfect set up". I can now proudly say that we coslept at the Mayo Clinic. Being told we wouldn't be allowed just wasn't an option.
9:06pm Went to the doc today and had blood work done. Good news is that baby boy is apparently VERY healthy. There were a couple of slightly elevated levels (potassium, calcium and a liver enzyme) but the doc was confident that they were not even close to high enough to indicate any health issues. He put in the order for a sleep monitor and we were looking forward to having it delivered this evening. Unfortunately we will have to wait one more day. The company that is delivering the machine called us and told us the one they had on hand wasn't working properly and they had to have one overnighted to them so that we can get it tomorrow. *sigh* I was sooooo looking forward to getting a good night's sleep but I guess that will have to wait one more day. I guess I should not be upset...better a functioning machine then getting it here and having it not work. Still, I'm just exhausted and was really counting on having something here to help monitor baby's breathing so we can get some rest.
February 17, 2009
I think every parent's worst fear is to wake up and find that they've lost a child. I am so grateful that this has not happened to us. The problem is that each of these episodes makes me relive that fear over and over again. The first time it happened I truly thought for a moment that he was gone. After it happened and he became responsive, I convinced myself that I was being paranoid, that he was just a really deep sleeper and talked myself out of doing anything more about it. I didn't want to be that mom that ran screaming to the doctor over every little thing. The second episode was not as severe and to be honest...not as scary. I'd so firmly talked myself into the whole "he's a deep sleeper" bit that I refused to consider that anything was really wrong. People actually started saying things to me like "Wow, I don't remember my child ever doing that. You should have him checked out". I agreed it was weird and scary and said I'd talk to his doc at the next check up. When the third one happened, it was by far the scariest one. He was unresponsive for much longer than the first two episodes and I actually was reaching for the phone to dial 911 when he started to react to me. At this point, I was DONE and we were going to find out WHAT THE HECK was going on. Period.
I just wish that more info was out there that tells parents that this is even a POSSIBILITY! I'd never heard of ALTEs and we've had to do a lot of research on our own to really find out anything about it. We had three episodes before we knew how serious it could be...and if I'd have known of it then I would have taken him to the doctor immediately instead of convincing myself that I was overreacting.
I just want for us to be able to sleep again without waking in a panic that something has happened while we weren't watching.
February 25, 2009
We've ended week one on the sleep monitor and so far all is well! No 'events' and the only time he's set off the monitor is when he's REALLY mad. The monitor is set up to alarm if his heart rate gets below 80 bpm or over 200-something. I can't actually remember if it was 200 or 220. It is also set to alarm if there are no respirations for 20 seconds.
We had to push to get the monitor because we were told that the 'false alarms' tend to upset parents unnecessarily, but speaking for myself AND my husband I'd have to say that we are THRILLED to have it. Sleep happens at our house now. ;)