Thursday, March 29, 2012


You may think this is a silly title, but it is exactly what went through my head after talking with the Neurologist Tuesday.  You see Alina has been struggling in school for a few reasons.  The biggest is that she can't maintain focus.  She will just stare off into space.  She hardly gets any work done in class and what she does get done has been modified. 

Alina is aware she's not getting the work done and not one person felt it was a work ethic thing. Her teacher felt she might have some processing disorder.  Considering family history some sort of learning disability would not be strange at all.   We had the school SST meeting and I found out that she is zoned 60-70% of the time.  It's more than zoned because she is hard to get back to reality.  Her teacher had mentioned that she would gently call her name 4-5 times and when Alina "came to" she would be startled.  Almost like a "where did you come from?" reaction.

At home we were having some of those types of spells, I don't think as frequent, but still present.  The school psychologist requested a neurological exam to rule out anything medical.

So Tuesday I took her to see Dr. Carter.  Dr. Carter did a full work up and said she can tell Alina is super smart.  Well yes, if she is missing 70% of her day because she's zoned out, yet she still grasps the concepts?  That's pretty good.  Interestingly, Alina's patellar reflexes were almost as difficult to get as Jasz'.  The rest were normal but that one was difficult.  Alina showed signs of poor balance as well.  Also, in school she has difficulty with her fine motor skills.

After an hour Dr. Carter said, "you know what let's do an eeg and I can do it right here."  So Alina got the cap on, which was quite a process.  They had her lay down and do several things, talk, hyperventilate and relax while lights were flashing at her.  Eventually Alina got so comfortable she fell asleep.  Then we woke her up and Dr. Carter read the print out.  She told me that during that sleep time, when Alina should have consistently calm brain waves, she had two seizure like episodes.  So my reaction, "what!?!"  She believes Alina is having Absent Seizures.  She has prescribed her Depikote.  She also prescribed her Carnitine.  Here is the interesting part, that the scientist in me finds fascinating...Alina is showing "soft signs" of Mitochondrial disease.  Siblings and relatives of Mitochondrial patients will often show these types of signs.  In other words, they don't have the full blown effects, but they have some of them.  Seizures, learning disabilities, diabetes, short stature, fatigue, and headaches are some of those "soft signs".  I am not sure that Seizures is the only thing going on with Alina, only time will tell us that.  I feel like our family would be an interesting case study, but I don't want to be a lab mouse.

Alina has started her medication and we shall see.  Overwhelmed would be a good word to describe me. It is interesting to me that as humans instead of turning to those closest to us we feel safe enough to lash out at them.  I have been snappy and cranky of late.  I totally get that things could be so much worse, but it took me the rest of Tuesday and yesterday to wrap my head around what I was told on Tuesday. 

I think I feel a little like I'm on a runaway train....we've started so there's no turning back.  The school immediately wanted to know what accommodations they need to make for I look like a Dr.?  I have no idea.  I don't think we even know what is triggering her seizures.  I do know Dr. Carter said that computerized testing is inappropriate for no more NWEA for her?

Her teacher told me she talked with the PE teacher and all those who work with her....things I never thought of.  So today I need to get my head back in the game.  I need to push forward.  I can not be a tree and stand still. 

Most of all I just don't want things to be so dang hard for my kids.  I want them to be able to succeed and we will get there.  One thing is for certain...I have kids with determination and grit, personality for miles and BIG BIG Hearts.  I always said I would rather raise good people, then the smartest people...I am getting to see both in all three of my kids.

1 comment:

  1. Wow...that's crazy! I'll be praying for you and Alina as you start to figure out what works for her. Runaway train, indeed! {{hugs}}, friend!