We've all been sick with a horrible cold for weeks. Lucius got sick on Wednesday and started coughing a bit. Thursday he started sleeping a lot more, not feeding well and towards the evening showed signs of respiratory distress. Friday I took him to the doctor and she sent us to the ER. They admitted him with a diagnosis of RSV. But we are home from the hospital now. He kicked RSV's ass and stole its lunch money. He is home 2 days sooner than any of the doctors expected. Go Lucius!
However...
God this is so hard to write.
There's something wrong with his brain. And his skull. And his eyes.
First, the brain:
Since he was born he's had these myoclonic seizures in his legs, but while he was sick the first time it got so much worse that I could finally show it to doctors. They seemed to feel it was in response to the illness and sure enough it settled down once he was better. He still had the tremors, just not as badly or as often so they said they were because of his immature nervous system and it would stop after a while. Just to be sure they did a CT of his head and it came back fine.
They came back really badly during this illness, to the point where it scared the shit out of me. So the doctors started really looking at it, and it turns out they can induce the tremors any time by pushing up on his toes. Normal newborn myoclonus is usually just a couple beats. They were able to induce up to 15 beats. They think he might have a seizure disorder or other neurological issue.
Also, he opens his eyes and looks around a lot in a twitchy, creepy way while he is sleeping, which could be nothing or it could be related to all of this and could be a sign of a serious neurological problem.
Second, his skull:
His skull is abnormally shaped and on the small side. His anterior fontanelle is very small and his posterior fontanelle cannot be felt by any of the doctors that have tried. It could possibly be related to the brain issues, it could be nothing or it could be another issue in and of itself.
Third, his eyes:
He probably has strabismus, more specifically congenital estropia, which means his eye turns inward abnormally. He may need surgery to fix it. My husband has it so it probably is genetic.
He is recovering fine from the RSV but my heart may not recover from all of this.
However...
God this is so hard to write.
There's something wrong with his brain. And his skull. And his eyes.
First, the brain:
Since he was born he's had these myoclonic seizures in his legs, but while he was sick the first time it got so much worse that I could finally show it to doctors. They seemed to feel it was in response to the illness and sure enough it settled down once he was better. He still had the tremors, just not as badly or as often so they said they were because of his immature nervous system and it would stop after a while. Just to be sure they did a CT of his head and it came back fine.
They came back really badly during this illness, to the point where it scared the shit out of me. So the doctors started really looking at it, and it turns out they can induce the tremors any time by pushing up on his toes. Normal newborn myoclonus is usually just a couple beats. They were able to induce up to 15 beats. They think he might have a seizure disorder or other neurological issue.
Also, he opens his eyes and looks around a lot in a twitchy, creepy way while he is sleeping, which could be nothing or it could be related to all of this and could be a sign of a serious neurological problem.
Second, his skull:
His skull is abnormally shaped and on the small side. His anterior fontanelle is very small and his posterior fontanelle cannot be felt by any of the doctors that have tried. It could possibly be related to the brain issues, it could be nothing or it could be another issue in and of itself.
Third, his eyes:
He probably has strabismus, more specifically congenital estropia, which means his eye turns inward abnormally. He may need surgery to fix it. My husband has it so it probably is genetic.
He is recovering fine from the RSV but my heart may not recover from all of this.
to you! I'm was with you in the Feb07 ddc and my ds2, Joe has a seizure d/o. it's scary but there's lots of good new meds out there now which make it much easier to handle. I hope they are able to find answers soon. many healing vibes headed your way.
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