Tag Archives: corpus callosum

Special or Spoiled?

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I often wonder what people think of our family when we are out in public and Josephine has one of her wonderful meltdowns. Do they think, “What a spoiled brat” or “Why aren’t those parents doing anything” or “Poor parents! Maybe they need a break”? Most of the time, by the look on their faces, it’s 1 or 2. In fact, I think 3 is a near impossibility!

And I don’t mind the stares or the opinions or the sympathies. I take it all in stride. Just part of being a parent of a special needs kid.

But when Josephine gets so out of control that our own favorite therapist is at his wits end during a session (last night’s session, in fact), I have to question myself and ask, “What can I DO?” and “What am I NOT doing?”.

When Josephine wakes up from a nap, or from a good night’s sleep for that matter, she is upset, cranky and many times, unruly and inconsolable. Yesterday was no different. This afternoon was no different.

Often I try to calm her down by cuddling, offering her a drink or snack, giving her the favorite stuffed fish or perhaps the absolute best of the best, her socks. Forget the cuddling – AIN’T HAPPENIN’! She shoves the drink/snack and fish back in my face. And just when I think the socks are the answer, more hair comes out…more spit to clean up…more screams…more biting (not me, thankfully)…more frustrations. So I let her cry and freak until she calms down, which generally takes at least 1 hour. I don’t know what else to do.

I know part of her frustration and anger comes out of not being able to tell me what she wants or needs. I can only hope as she gets older, these meltdowns decrease. But I have to live in today and figure out how to handle the now.

So, is it spoiling or survival? Call it what you will. I call it my life.

MRI and Ambulatory EEG Results

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After a great amount of waiting patiently and many phone calls to the neurologist, we have some new information regarding Josephine’s brain.

MRI RESULTS:  As we suspected, Josephine has complete agenesis of the corpus callosum.  What does this mean?  No idea.  It depends who you ask and what research you do on what site.  What we do know is the connective tissue/fibers between the left and right brain is nonexistent.  Normally developed within the first 6-12 weeks of conception, the corpus callosum allows the right and left brain to communicate through as many as 200 million fibers.  There is another pathway this communication can occur, but there are only 50,000 fibers available in that connection.  Check out www.nodcc.org for more detailed information on disorders of the corpus callosum.  Again, what does this mean for Josephine?  She may need more therapy to help build new ways for the left and right brain to communicate.  The good news is that we have started Early Intervention already, so only improvements can be made.

AMBULATORY EEG RESULTS:  These results are less severe than the MRI, but still concerning.  Josephine has a tendency toward seizures, but did not experience a full blown seizure while hooked up to the EEG.  The neurologist, Dr. Aviva Bojko, is not prescribing any medication at this time because the EEG just showed spikes in the activity in the right and left frontal portions of the brain.  If we see any signs of seizures such as blank staring and twitching of any kind, we are asked to call the Dr. Bojko immediately.  Are these seizures connected to the agenesis?  Your answers are as good as ours.  I read that seizures are increased with complete agenesis and when having conversations with other medical professionals (a P.A. and a nutritionist), if there is no corpus callosum, seizure activity should cease.  More conflicting information…no surprise here.

Josephine and the Ambulatory EEG

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On the medical side of Tetrasomy 8p (Genetic Disorder)

josephine EEG 3josephine EEG 2josephine EEG

Josephine took a trip to the neurologist on July 26.  The neurologist wanted to monitor her brain activity for a 48 hour period.  The process of attaching the 26 electrodes was less than wonderful, both for Josephine and Mom and Dad.

But after the procedure, Josephine became our little cosmonaut (see pictures above)!

No results yet from that test.  Next up is the brain MRI, which is scheduled for August 6.  This is another big test to give us some big answers – does Josephine have a corpus callosum (arched bridge of nervous tissue that connects the two cerebral hemispheres, allowing communication between the right and left sides of the brain) and does she have hydrocephalus  (water on the brain)?

Josephine has been experiencing, what I think to be petit mal seizures – vacant stares for a few seconds and head twitching in repetition of 2-4 movements.

This MRI will give us a better idea of her prognosis.  Every test leads to a new piece of the puzzle.  We may not always get the answers we want to hear, but it’s better to deal with what’s coming head on.  Denial is not our friend at this point.