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Update w results - Would you risk sedation for an MRI in this situation? - Page 2

post #21 of 26
Thread Starter 

Hi, OP here, I thought I would update on how my daughter is doing.

 

She's 8 months now (actual) and just started rolling on her strong side, which is great.  Her head control is pretty darn good, too. 

 

We saw her pediatrician recently and she was concerned that her development is farther behind than it was... DD is not doing the things a 6 month old would be doing (she's about 6.5 months adjusted) and she is falling more and more behind on those milestones.  This really isn't worrying us, because she is progressing.  For example, she tolerates being in a bumbo chair now, whereas a couple months ago you couldn't get her folded enough to put her in the chair (tone issues).  She looks like a big 3 month old. (When strangers guess her age, they always guess 3 months. I tell them "8 months" without explanation at this point.) 

 

We also went in for a followup for her inward turned eye, which the ophtho found to be more marked than before.  She additionally has nystagmus now.  It's so funny that we can't see these things ourselves.  I actually never notice it anymore, she looks like a normal baby to me until I run into another baby at the store or something and see the differences.

 

So, we scheduled the MRI.  I'll post here after we get the results for anyone that is in the situation in the future. 

post #22 of 26

I'm so glad to hear that your little one is progressing in so, so many ways!!! That is awesome!

 

How long before the MRI?
 

post #23 of 26

My DD has a primary dx of hypoxic ischemic encephalopathy.  She has lot of issues stemming from the brin injury including global developmental delays.  We see a Physical Medicine & Rehab doctor who manages all our therapists (OT, PT, and Speech), as well as taking care of the medications she takes for her tone.  As DD has gotten older, she has had more medical needs and our PM&R Doc specializing in making sure we get what we need.  You can PM me with any specific questions, but my biggest piece of advice is to schedule an appt with PM&R doc.

post #24 of 26
I am so happy your taking the steps to get the MRI done. It's truly for the best. I look forward to hearing updates. Stay strong!!
post #25 of 26
Thread Starter 

Hi, I put the outcome in the first post but that probably isn't the best place for it.

 

So, we had the MRI.  The fasting for 4 hours was a worry to me as DD won't drink from a bottle (therefore, no water or juice two hours ahead of time) but everyone in the hospital expected her to be upset, so when she was, no one was surprised.  She woke up from the sedative without incident, only problem was one barf in the carseat.  I've seen bigger messes, no problem really, and she didn't seem bothered particularly. I haven't seen any change in her behavior or mood that I might attribute to the anaesthia.

 

The MRI showed brain abnormalities that may have been from hypoxic-ischemic injury, likely in third trimester.  It's a diffuse injury, not a particular area, rather the whole brain is affected. (She was a 33 weeker.)  The results explain everything she is doing and not doing, so in a way I am happy. It makes it easier to enjoy where she is right now without questioning why she isn't someplace else in development, if you know what I mean. 

post #26 of 26
I am glad you were able to get your dd the MRI. Hopefully the doctors will be able to better treat her situation. Now that you know where she is at, you can keep being her best advocate.
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