How do you……

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Please excuse me from being absent the past week or so…..I have had something weighing heavily on my mind and it affects my son and his future.  For someone so young to have some things he won’t be able to have taken away that it is really mind-boggling.  So many kids and adults these days take advantage of the slightest privileges  to be thrown into a circle where those privileges can never be given.

This week has become a real hard time.  I was going over Jonathan’s binder (includes all of the original diagnosis letters, IEP’s, evaluations) and re-reading all the original paperwork that started our journey on this roller coaster ride called “Autism”.

I read the original diagnosis letter and it states “abnormal EEG with potential for partial seizures”.  I know that I read this letter when we first got it back in 2009.

Well in 2013 he began having these episodes at school.  He would like freeze up.  His jaws would lock up, hands would freeze all like crinkled up.  He couldn’t speak.  When the first one happened the paramedics were already there.  He couldn’t speak but his eyes told me everything I needed to know. The school thought it was a “seizure” but not a seizure.  So eventually he was able to start talking to me.  I was able to get the paramedics to help get him in my truck.  I took him to the pediatric emergency room almost 30 miles away.

After about 3 hours of blood work and x-rays the doctor came in and said they found PCP in his system..My mind was flabbergasted.  I was thinking to myself…WTH…..he knows not to take drugs ( he does not like to take his prescriptions so why would he do illegal drugs).  The doctor and myself questioned him and he knew nothing about what we were talking about.  So I got on to the phone right away with the administrator at his school to let him know and to pull the video of where he was eating lunch. (He was eating lunch by himself when the first episode occurred.) Logically the only way he could have had this in his system was if someone had put something in his food or drink.  Well the video did not help because of the glare of the sun blocked everything out.  Up until now I only let close friends and family know about the PCP.

Well the 2nd episode he had took place late at night.  At that time Jonathan and Christopher shared a bedroom.  Christopher turned off the bedroom light to go to sleep. He heard these weird noises coming from Jonathan’s side of the room.  He turned the light on and seen Jonathan in distress.  Christopher came racing into our bedroom screaming and crying that Jonathan was dying.  Daddy ran into the bedroom while I called 9-1-1 immediately.  This time the local emergency room without a pediatric doctor ruled his episode as “panic attack”.  I knew better.  The next episode happened at school the next day.  This time i drove him back to the pediatric emergency room and this time we were kept 3 days.  They wanted to do an extensive EEG.

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Finally after the 3 days we were able to go home and follow-up with the neurologist.  He said its called “tremors”.   So when we followed up with his primary doctor that prescribes his medications , I brought this to her attention about the original diagnosis letter and the current diagnosis.  She informed me that in fact in his chart he has been diagnosed with seizures.

This has now become a whole new ball game for my son and his future.  He has talked about when can he get his drivers license…..so now becomes the task of trying to talk to him about this. I don’t want to break his heart and his dreams.  Because I know deep down inside he really does want to drive.

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