what.the.hell.....
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My world was rocked today.....We got the results form Nate's last MRI.
From his first MRI right after birth we were told he had Partial Agenesis of the Corpus Callosum and he was missing the rostrum, splenium and posterior portion of the body (all parts of the corpus callosum).
The MRI report from June 8 states: "small corpus callosum with focal decrease in thickness involving the posterior aspect of the body. This may be secondary to to a dysgenic corpus callosum" So he has the entire CC??? It is just small?
This doesn't really change anything. He is still delayed and still had low tone, hearing loss and eye issues. I am now part of the Dysgenesis of the Corpus Callosum crowd, I guess. I really hope we can get some answers from our next neurologist appointment.
This is crazy.....My mom was praying for a miracle and miraculously the last quarter of our baby'e CC "appeared". Hmmm.....Here's a pic of our miracle for those in the DACC crowd...
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Re: what.the.hell.....
awesome news.
He has alot of brain in that MRI!
Makes ya want to see the 1st MRI and see if you can spot the CC.
I have a friend whose son was battling cancer for 9 yrs (he has since passed) one thing they learned is you can't believe all test results, too much human error. They were asked once, when was his righr kidney taken? they were like what? never, after some panic and retesting come to find the tech was just not skilled enough to see the one kidney that had atrophied and shrank (happened yrs prior) it was still there, just harder to see.
I know you said that it does not change anything for now, but I do hope that this will give him a better prognosis in the future.
BTW he is such a freaking cutie!
Max 4-08-08 and Michael 2-03-91 (19 years olds)
Hi,
Did the same dr read both MRIs? I ask b/c we had 2 drs look ot DS's MRI and 1 thought he had hypoplasia of the splenium/ rostrum region & the other though hehad partial agenesis (the splenium/rostrum region).
His first MRI was done at 6 days old and was not sedated (he was just asleep) at the hospital he where he was born. The second MRI was done at 6 months old, sedated and was at a different hospital. The second hospital had a PICU and I am not sure if a pediatric radiologist read the MRI or just a radiologist. From what I hear, this can make a difference as well.
I have the films from the first MRI and now I can see the last thin little portion of the body and a small splenium. The second MRI has a much better resolution. I am not sure if this is because he was sedated or you see more because he has grown and the myelination has started...
We are going to the ACC conference (this Thursday!) and I am very interested in what Dr, Sherr has to say. I guess we still qualify for his study since there is dysgenesis. It is just such a weird feeling. I never even contemplated the possiblity that the first MRI was read incorrectly and what we have been thinking we are dealing with is not exactly the case. Again, it doesn't really change anything....just makes you go "hmmm".
I can imagine you wouldn't have questioned whether the first MRI was wrong; you just assume it is. I made an appt with a specialist (neurologist) to have a look at the films. We see her in August.
What study is Nate in?
Also, how's he doing w/his hearing aids? Does he rip them out? Owen has been lately taking them out and trying to eat them.
Nate is in a study done by the University of California-San Francisco to look for genetic causes of Disorders of the Corpus Callosum. They are also looking at polymircrogyria and dandy-walker malformations. You can find more info here:
https://neurology.ucsf.edu/brain/callosum/
They are also trying to create a research bank of blood & tissue samples(when able) in order for other people to do research.
He has not figured out the hearing aids yet....I think it is just a matter of time. He is not a "mouthy" baby so I am really hoping he doesn't try to eat them. I also hope he doesn't toss them somewhere before we get the lanyards on.
This!!!