Thursday, March 31, 2011

IEP Update and OMG some real drama

We had our IEP meeting - we got everything we asked for.  Yay!


2 Fridays ago, we had some business to take care of so Marc and I took off work.  It just so happened that Dylan was off school.  Great timing.  We sent him to day care for the morning and we went and took care of our junk.  We went to pick him up at daycare.  He was outside playing.  We asked if he wanted to go to a different playground and fly his kite.  That was met with an emphatic YES! 

We were walking to the car when I hear Marc behind me say "OMG What is that smell?!"  I turned and asked him what he was talking about - I couldn't smell a thing.  He was pointing a the ground with his head twisted over his shoulder.  I touched his should and asked again.  He started to stagger and I caught a glimpse of his face which was hideously contorted.  Then, he started to shake.  As she shook, he was falling.  B'H I was able to grab him and lower him to the ground (just got a scrape on his chin and on both hands).  He laid on the ground convulsing and I'm screaming.  A woman stopped her car in the road and jumped out calling 911.  I turned Marc over.  He was blue, frothing at the mouth.  I couldn't find his pulse (may have been none or may have been I was too panicd to find it) so I started chest compressions.  People came out of the center to help.  One man (who I later discovered is a doctor) asked me who I was.  When I told him I was his wife, he told me I shouldn't have to do cpr and asked if he could take over for me.  I allowed him to and after a few more compressions was able to find his pulse.

Now, dear friends, the thing that sucks the most out of this is that Dylan was right there for the entire thing.  When Marc collapsed he walked over to him (when he was face down) and tried to look into his face.  I shoo'd him away.  I didn't want him to see his father like that.  I didn't want him to see any of it but he did. 

I called Marc's mother as soon as I knew what hospital we were (unfortunately) going to.  I called my Mom.  I checked on Dylan (who was brought back into the center) and made sure he was okay - I assured him everything would be okay and I ran to the ambulance.  Once inside Marc started to awaken.  He was out for a good 20 minutes.  According to him, one minute he's walking with his family and the next he's being attacked by a group of men who are holding him down trying to get a needle in his hand.  Scary.  He fought them the whole way to the hospital.   Once at the hospital he started to calm down.  My Mom met us at the hospital and, because Marc was stable, his Mom was there, she ran me back to the center to Dylan and to my car.  Dylan was so freaked out and rightfully so.  I thought it would be good for him to see Marc before he went with my Mom so we brought him to the hospital.  Bad idea - made things worse.  He didn't want to go near Marc.  My Mom took him to her house and he spent the night.  He asked a million questions over and over and over again and my Mom patiently gave him simple answers over and over and over again. 

He's still asking the questions....

Why did Daddy fall down?
Why did Daddy's legs shake?
Why did you take away Daddy's gum?  It's not nice to throw gum in the street Mommy.
Why did yuo push on Daddy's tummy?
Why was Daddy in the big bed?

We had questions of our own.  First they told us it was a heart attack.  Then they said that seizures can raise cardiac enzymes and that it was "just" a seizure.  The idiots, I mean hospital, said it was from his meds.  His discharge consisted of a nurse removing his IV's and telling him not to take the meds any more.  That's it, no discharge papers, no signing something nothing.  Oh, and get this - the neurologist came in on Saturday - spoke to Marc for 5 minutes, stepped out to take a call, came back in for another few minutes and got another call and never came back.  Virtua Hospital blows chunks. 

Tuesday we went to a real hospital with real doctors.  They did an EEG and came back later for the results.  We fully expected to hear it was the meds and not to take them and buh bye. WRONG.  Abnormal brain activity in the temporal lobe.  Looks like he has a seizure disorder and the Wellbutrin he takes lowered his threshold for a seizure.  Since he has been taking it (for 1.5 years) he has complained of strong smells/tastes that weren't there.  Those were little seizures confined to his temporal lobe.  The seizure 2 weeks ago spread past the temporal lobe throughout his brain causing a grand mal.  Thank Gd he wasn't driving.  Thank Gd he wasn't alone with Dylan.  Thank Gd he wasn't alone.  So now he's on anti-seizure meds but is still at risk for another one.  He can't drive for 6 months.  If he has another seizure -he won't be able to drive for a year. 

Oh, did I tell you they found Dylan's has a genetic abnormality?  Yeah, he has a deletion at 16p11.2.  Explains a LOT and has put my mind at rest in many ways.  You can read about it HERE.  I now know that the seizures weren't caused by any type of abuse or lack of care which gives me a lot of peace.  We meet w/the genetics folks at CHOP and they said we are doing all the right things and they can't predict his future.  I told them that I don't care - whatever it is - he'll be awesome :)


  1. That's terrible news. I'm thinking of you and hoping that Marc responds well to the medication and stays healthy.

  2. Oh my gosh!! Poor Marc, Dylan and You!! Julie, I am so terribly sorry you have gone through all this. This is a million pounds of stress for you too. I'm glad that you did get correct medical advice - you are very smart to have done that. It's weird about the smells as mini-seizure activity.

    I guess you will need a lot of social stories to help Dylan process all this. It's a scary thing for any kid -doubly so for ours. Glad you found some relief with the genetic results as well. And of course, Dylan will be awesome!! Look at his mama!! (I will include your family in my prayers)