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PNES - Psychogenic non-epileptic seizures (PNES)

Psychogenic non-epileptic seizures ( PNES ) In one word?  Scary.  Your thriving, growing child explains that she "goes" to a place where she can't remember spaces of time throughout her school day.  Immediately, my thoughts go to seizures and Epilepsy.  We travel this path thinking it's Epilepsy.  What will the neuro say?  What will they do?  Weeks later, we still have minimal answers and are going through tests.  The initial EEG shows nothing.  Why is she having the seizures.  By this time, I have seen the seizure first hand and it's worst than I thought.  She has was seems to be Absence Seizures.  She's there but not.  And she only has them at school.  Strange, right? As if the first EEG is not bad enough, they order a second one to capture approximately 36 hours worth of data and possibly one of the seizures.  My poor child has to wear the wires attached to her head to school, since that is were most of the episodes occur.  Being in 7th grade is challen

Fast Forward to November 2013

Man, how time flies! We are in November 2013.  CJ finished year 2 of Kindergarten and is now in first grade.  He is doing so well that he doesn't have to be taken out of the classroom except for once per day.  He is performing at the same level as most of the children in his classroom.  That's not to say he doesn't have to work very hard to do this, but he has been advancing nicely.  He still requires special help for some assignments but he is now very quick to advocate for himself if he needs adjustments. He is at the beginning stages of reading and hopes to be reading full books soon.  He is still so eager to learn and perform.  He always tries his best. We have just finished up eye therapy.  That was a very fast 12 months.  I can't believe all the progress CJ has made from this time last year.  He can stand on one foot. He can balance on things.   He can focus on things near and far.  He can stop words from moving on a page so he can read them.  He ride a bike!

Another Revelation!

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We were doing eye therapy tonight and I was asking CJ about how he sees words.  He said they get jumbled up when I look at them.  I said how do they jumble up?  he said they jumble up then look normal.  I said how fast?  He said you count and I'll tell you. I asked him if he could draw me a picture of what it looked like.  So he did.  And when we counted, it was 1-2 - jumbled.  1-2 normal.  1-2 normal  So we then tried it with his glasses on.  He said - no.  Clear.  Perfect.  Like they look on the paper.  I said are you sure?  We did several tests and each time he said they were jumbled or dots and each time we put the glasses on, the words were normal. Between each switch, I let his eyes rest for a few seconds.  Just to be sure we were giving them enough time to rest between glasses and no glasses.  I made him look at the same words on the pages as well. I tried the same test on his Hart chart (the one on the wall).  He said there were a lot of dots and they were j

I Can Ride a Bike!

Just as the school year comes to an end, new and exciting things are happening for CJ.  He will be promoted to first grade next year and is leaps and bounds from where he was this time last year.  He knows all the letters of the alphabet, all the sounds associated with the letters and the motions.  He knows his numbers and can count items up to 30.  He is working on his hand writing and his speech.  His balance and coordination have changed and increased tremendously.  So much so, he can now ride a bicycle! Our vision therapist, Dr. Cook, explained that when CJ began vision therapy, riding a bicycle was a very scary and intimidating task.  He explained that with his balance and coordination issues, there was no way he could ride a bike at that juncture of his little life.  CJ was unable to tell what was moving more, the bike or the ground.  We are very please that he can now, RIDE A BICYCLE! (posting a video later) While this feat in itself is amazing, CJ still has a lot of

Another Milestone Met!

Just past another milestone!  I noticed on his math facts that he has done very well on subtraction.  I also noticed the last 2 days he has written all of his numbers correctly - in the correct direction.  I asked him about it and if he did something different and he said - I just thought of it in my brain and all the numbers "point" this way (he pointed to the left). I said OH!  Great job buddy. So obviously something has "clicked" in his mind about the orientation of numbers. I'm so proud of him!!! In the eye therapy world this month he has to do right and left exercises.  The doctor explained it would help with orientation of his body in this world.  Not sure it was the exercises alone but something "clicked" for him over the past 2 weeks!!!

CJ's Progress - the Scooter

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When CJ began eye therapy, he was unable to stand with one foot off the ground for any length of time.  As soon as he would lift it, he would have to put it right back down or fall. Last night (4/9/13), he was outside riding a kick type scooter.  Unbeknownst to me, he had one at his Dad's house and had been riding it.  He wanted ride his sister's last night at our house and he did!  It was the result of his hard work and prayers from many, many people. I never thought I would see him ride anything unless he was sitting down.  It was a blessing to see him doing it and he loved every second of it. Step by step, day by day, we are making progress.  

Blue Paper for "Blue"

Another interesting discovery yesterday with CJ's dyslexia and vision problems.  He still struggles to name letters when they are on a sheet of paper.  He can do the flash cards as long as the letters are black.  Magnetic letters in different colors bother his eyes so much he can't seem to even see the letters at times. He was given the same test twice yesterday - once on white paper and once on blue paper.  There was a night and day difference!  15 wrong on the white paper and 1 wrong on the blue.  Unbelievable! He described to his teacher and I that when he looks at the white paper for a period of time, small dots begin to appear next to the letters (in the white space).  He said the blue paper doesn't do that and he said, "I can see the letters on the blue paper".  We also told him to tell us if the letters needed to be bigger.  We have found that with his eye problems, the longer he looks at something the more tired he eyes get and the larger the print need