First the swallowing study....Here's a pic:
The good news is that all is well on the swallowing front. Nate still can only handle pureed food. Looks like we may have to talk to a SLP or feeding specialist about that. In general eating is going better. He is eating 3 meals now!
Also - the EEG came back, "relatively normal" - however, the doc still recommended that we follow-up with a neurologist. I should note that at first we thought we would just wait to see a neuro. But over the last few weeks, Nate's odd behavior continues to increase -and not just when he is eating. He also is doing some weird eye-rolling-in the back of his head stuff. Not sure what to make of it, but are thinking we really do need to see someone.
Ahh - the sleepless nights. It's still so funny to me how many times I heard that Down syndrome babies sleep well. Ha! Last night was our hardest night yet. I am not sure how any of us will function today. I think Nate was up every 30-45 minutes last night. At this point we just want something to show for all of our hours awake. A tooth would be nice.
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Something I came across:
ReplyDelete"Children may frequently present with recurrent spells, which are often thought to be seizures. However, there are several benign non-epileptic conditions that mimic seizures. A group of 8 children is described who were diagnosed with otitis media and presented with recurrent, stereotypic spells suggestive of seizures. A paroxysmal phenomenon, in association with otitis media, resembling seizures, has not been previously described. These paroxysmal phenomena resembling seizures may be related to acute otitis media and should be included in the differential diagnosis of paroxysmal non-epileptic events in infants and young children."
I remember that seat!Does Kayli have her name carved into it? Saw that you are on the T21 afghan list- woohoo!
ReplyDeleteoooooh! I was going to tell you about starrlife, but you already know her!!! I am glad she gave you that quote too! Sounds SO much like what G used to/still does do.
ReplyDeleteThere is a great site by Barbara, a PT/OT and she has a series going right now on eating issues! Really good! Really. www.therextras.com/therextras/
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