We just got home from All Children's Hospital in St. Petersburg, and wanted to just make a note of what happened and the doctor's notes before I forget. We checked in at about 1 pm yesterday, waited another hour for our room to become available, and Max got hooked up on the EEG machine. They attached a bunch of sensors to his head, then wrapped his head with bandaging material to keep it put. The wires all went to a little pack...looked like a little black purse, which was then attached by a grey cord that went to the EEG monitoring machine. So he was able to move about the room, followed closely by his pack, but couldn't leave the room. He had to stay connected the entire time. We were video recorded the entire time as well. Whenever he had an episode, we pushed the alarm button which alerted the nurses, but also made a note on the video of when one happened, so the person reviewing the tapes didn't have to filter through the whole video. They could just jump to where the episodes actually occured.
So by evening, we had recorded 19 episodes. I knew that they had enough material to diagnose him, and that there was no reason to stay there, but when I asked the nurse about it (I wanted to unattach the wires for bedtime) she denied me, and said that the 'doctors' wanted them to stay on, just in case something new happened. Of course, we hadn't even seen a doctor yet, then they all went home so we had to stay there until the next day.
So he slept with it on. We were just settling down when Max started coughing and then vomited ALL OVER himself, me, our blankets, the chair bed, and the floor. Ugh! I showered, we gave him a quick bath, waited for housekeeping, and soaked all our vomit stained clothes and toys (sorry Elmo!) in the bathtub before heading back to bed.
I think Max slept the best out of all of us. Those sorry excuses for beds were absolutely terrible, and the blankets were scratchy. My right hand kept going numb from pregnancy induced carpal tunnel, so I had to keep moving around, but Max seemed to sleep just fine, thankfully.
Just as a funny side note, I have to tell you, when we woke up this morning, Craig said he felt really complimented, like he had really done something well. What do you mean Craig? He said, "Didn't you hear the nurses that kept coming in, saying things like 'Good sleeping!' 'Look at that posture!' 'He's in a great position! Look at that alignment.' etc etc... I said I didn't remember, but I guess the nurses came in, saw Max and I sleeping side by side (he had a hospital crib he didn't use for sleeping) and were impressed with how he was sleeping? I don't even know. Maybe they don't see a lot of co-sleeping and were surprised that he slept so well? Apparently Craig heard it all and it made him wake up in a good mood, like he had really accomplished something during the night! Oh Craig!
Later this morning we were able to see our doctor. Dr. Black. She told us a few things. She concluded that they were in fact seizures. His official diagnosis is Generalized Myoclonic Seizures. Generalized means they affect the whole brain, as opposed to coming from one specific place. She said this is a good thing, meaning there isn't something wrong with a certain part of his brain. She said that neurology isn't advanced enough yet that they know what causes seizures like these, but that they think its a genetic thing, and that the kids who have them usually grow out of them. She said if we knew what was causing them, ie his blood, a certain lobe, an injury, etc, then they tend to be much more severe, so even though we don't know WHY, we are okay with that. As far as it being genetic goes, we'll just have to see if baby #2 does it. There's not genetic testing for it yet. And Myoclonic, which means he jerks, as opposed to stiffens up (tonic), dropping to the floor (atonic) or staring into space (absence).
The treatment options she gave us are Keppra and Lamictal, both medications that help regulate and decrease his seizure activity, and he would be on these until he hasn't had a seizure for 2 years. So if we put him on medication, he stopped his seizures immediately, he'd take it for 2 years. Thats a long time! Keppra, which she recommends to try first acts very quickly on the seizures because its assimilated through the kidneys, is extremely safe, you can not overdose on it, etc, but in 10-20% of cases it causes (temporary) personality changes, which would make him irritable and cranky, in which case we'd take him off and try something Lamictal, which she recommends if the Keppra doesn't work. It works much slower on the seizures, is assimilated in the liver, and he'd have to have labs to check the progress of it every once in awhile to make sure he isn't getting too much, or overdosing, which I think would affect his liver and other organs.
I'm going to call a few naturopathic doctors in the area and see if they have any experience with seizures like these, and see if there is a more natural remedy for him. I figure that they aren't putting him in danger, they aren't hurting him, and they aren't negatively affecting his life at the moment, that we have the time to try something natural that might work without giving him drugs. Then if that doesn't seem to help, or we can't find a naturopath with experience, we'll go with the Keppra and hope it doesn't make him irritable.
So Max got his turban off...he sobbed when they were attaching them because they had to hold him down for 20 minutes, and this I think reminded him of that because he started to cry. But then it started feeling really good when they were washing his head with the shampoo and massaging it, his eyes started getting droopy and he got really quiet. It must have felt so nice getting all that off his head!
We were discharged and just got home an hour or so ago. Max slept all the way home, so we can't wait for him to nap again so we can all lay down. We are beat!
No comments:
Post a Comment