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Another hospital visit and some difficult news

post #1 of 43
Thread Starter 
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!


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.
post #2 of 43
DiD, wow, I am so sorry to hear all of that. Glad to hear he recovered well from the RSV. I imagine it must be extremely difficult to not really have any answers. I hope that you are able to get some answers, and that they are all what you want to hear.
post #3 of 43
post #4 of 43
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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Edited by Just1More - 3/9/12 at 11:21am
post #8 of 43
Oh my gosh, I wish I could say something that would help but I know I can't. DiD your in our prayers.
post #9 of 43
Oh, I'm so sorry. The RSV is scary enough with out the rest to worry about. I hope it all turbs out fine and you get some answers and peace of mind soon. I'll be thinking of you.
post #10 of 43
and :
post #11 of 43
Many, many hugs to you DiD and your family. I am so glad he recovered well from the RSV and I will pray that you have the grace and strength to deal with what lies ahead.
post #12 of 43
You kicked that RSV butt! Way to go, Lucius!
Hang in there, little one and mama ... this will all get sorted out.

ps. Lucius, you have the best mama to be handling all this ... she rocks !
post #13 of 43
post #14 of 43
Oh mama I'm so sorry you are having to go through this with your precious baby boy...we are here for you, please remember to take care of yourself too!!!

post #15 of 43
Thread Starter 
We have appointments for an MRI, an EEG and to see a pediatric neurologist this week. Hopefully I will have an update soon. I did speak with the pediatrician and the tentative diagnosis for his cranial abnormality is called dolichocephaly. Basically they think his sagittal sutures fused in utero or were never open in the first place. It is a form of craniosynostosis and probably will require surgery to open the sutures so his brain can grow normally.

He seems to be doing great today as far as the RSV goes, at least.

Thanks for all of your support and everything. It means a lot to me.
post #16 of 43
Oh Dreams, I'm so sorry that you are dealing with this. I hope that you get answers soon. I'm so glad that he is feeling better from the RSV. He's a strong little guy! I'll be thinking of you and your family.
post #17 of 43
that is so much for a little baby and mama to take on, i'm sorry to hear its happening to your family. make sure you take some time for yourself - even if its just a nice hot shower or a cup of tea or something.
post #18 of 43
so sorry to hear you are going through this. Your little guy has already shown he has such strength and he will continue to show it. Take care of yourself. Sending healing and comfort vibes your way.
post #19 of 43

You are so strong, mama. Your baby is lucky to have you on his side. Remember to take care of yourself as you go through these challenges. My thoughts go out to you.

post #20 of 43
Praying for you and your family. Hugs to you and a kiss to little Lucius. He's a strong little guy with a wonderful mama.
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