Emma's Grace

Today, at 8pm, it will have been 2 years ago that our precious Emma Grace was born.

Happy Birthday my sweet angel!  You are a blessing in so many ways.  Each day we look forward to every little thing you do.  Your smile is beautiful and automatically spreads to everyone around.  You mean so much to all of us and to so many more.  We love you dearly!

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It’s been a crazy week.  Emma has been cutting a huge amount of teeth … 3 molars & 2 eye teeth on the bottom.  She has spent many days in pain.  We’ve been trying to make her as comfortable as we can.  It’s been difficult since the only things she likes to put into her mouth are food, her cup, and her hand.  We’re hoping that this will pass quickly since it would be horrible to feel so bad on such a special day.

Because of how Emma’s been feeling, we’re not sure how we will celebrate this weekend.  But Matthew is very excited to bake Emma a cake and to help decorate it.

Please feel free to leave comments.  I’m sure Emma would love to hear from everyone.

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We had an appointment with Dr. Chugani today.  Or as my friend, Danielle, calls him, Dr. Rockstar.  This was our follow-up appointment after Emma’s MRI and PET scan.

The MRI showed that Emma’s white matter in her brain is not as mature as a normal 2-year old child.  She doesn’t seem to have any obvious defects of her brain.

The EEG that was done with the PET scan showed the hypsarrhythmia pattern during the time that she was sleeping.  Other than that, there were no seizures.

The PET scan didn’t show a focal point.  Her entire brain didn’t process the radioactive glucose correctly.  Because of this, she isn’t a surgical candidate.

Dr. Chugani didn’t have a whole lot to say today.  Emma’s obviously not a surgical candidate because of the PET scan.  Because Emma’s not having any seizures, he wouldn’t mess around with her medication at the moment.  He didn’t think there was really any genetic testing that we’d be able to do.  So, right now, we’re just waiting and treating the seizures.  He has a sample of Emma’s DNA, that will eventually be sent off to do a bunch of genetic testing on it.  If they find anything, they will let us know.  But we don’t know when that will be done.  Maybe next week….maybe next year.

Here is what the actual reports say…

MRI of the brain without contrast
There is evidence of diffusely increased T2 signal throughout the deep white matter bilaterally, most evident within the right parietal and both temporal lobes.  The degree of increased T2 signal is out of proportion for the expected amount of myelination at this age.

There is no evidence of focal mass, mass effect, hydrocephalus, or extraaxial fluid collection.  There is no brain herniation seen.

No obvious cortical dysplasia or neuronal migration anomaly is identified.  The abnormal T2 signal is best seen on image 12 of series 2.

The corpus callosum is also of diminutive size.

Ventricular size and overall brain volume, however, is within normal limits.  The globes and both optic nerve sheath compleses appear symmetric.

Impression:
1.  Diffusely increased T2 signal within the deep white matter as described which is bilateral.  Possibilities could include various causes of delayed myelination or dysmyalination.  An underlying metabolic disorder is also not completely excluded.  Clinical correlation is recommended, a short-term followup in 6 months is also recommended to further evaluate.
2.  There is no evidence of acute ischemia on the diffusion-weighted images.

EEG (done with the PET)
The patient was awake and asleep during the recordings.  The background activity during awake was disorganized and consisted of a mixture of delta and and theta activity ranging from 2 to 4 Hz.  During sleep, hypsarrhythmia pattern was noted and no well formed sleep architecture was noted on either side.  Very frequent multi-focal interictal epileptiform discharge was seen in the left and right anterior as well as posterior quadrant which was slightly dominant in the left hemisphere.  No ongoing seizures were captured.

Impression:
This was an abnormal EEG recording.  Disorganized background activity with hypsarrhythmia pattern during sleep and absence of well formed sleep architecture suggested diffuse neuronal dysfunction.  The presence of very frequent interictal epileptiform discharge in the left and right anterior as well as posterior quadrant suggested increased risk of epileptic seizure with multi-focal onset.

PET scan
The EEG performed during the PET scan showed background slowing with hypsarrhythmia in some of the sleep EEG segents.  There were also very frequent multifocal spike and wave activity from the left and right hemisphere, perhaps more dominant on the left side.

The PET scan showed severe hypometabolism of the parietal, temporal cortex bilaterally, more pronounced onthe right side.  There is a milder hypometabolism of the frntal cortex bilaterally.  The occipital cortex appears to be also less affected but is nevertheless hypometabolic.  The basal ganglia appear very prominent because of the surounding hypometabolism.  The thalamus, brainstem, and cerebellum appear normal.  The medial temporal lobe structures appear symmetric.

Impression:
This is an abnormal cerebral glucose metabolism study showing bilateral hypometabolism affecting virtually the entire cerebral cortex but most pronounced in the parietal and temporal cortex on the right side.  This finding is most consistent with an underlying genetic or metabolic condition.  We suggest further testing in this regard.  Based on this scan, it is unlikely that this child would be a surgical candidate.

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Well, since I’m sure most of you have noticed, posts have been a little lacking lately. Ok, a lot lacking.

Since I have such a problem with 2 blogs, I’m going to stop posting at A Magic Mommy and just post here, on Emma’s Grace. So, if I ever get around to it, you’ll not only get posts on Emma and how she’s doing. You’ll be getting posts on Matthew, our family outings, recipes, and other various things I may post on.

I hope you all don’t mind the intermingling, but I feel bad each time I post something on Magic Mommy because it should go there and then Emma’s blog doesn’t get seen, which is what I really want. And maybe I’ll actually manage to post more often.

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