The News Floored Me

I don't know if you remember but back in March, I got the dreaded call "we're at the ER but don't worry" from Jakes father.  Jakes had a seizure while visiting his dad's for the weekend.   Jakes was sent home and everything was fine. 

I made an appointment with a Pedi-Neurologist and she ordered an MRI and a 24-hour EEG.  Today she called with the results and I was floored.  Jakes has a seizure disorder.  While he was wearing the EEG he had 2 little seizures when he was drifting off to sleep.  SCARY!  Do I watch my child sleep now?  Probably not, cause I like my sleep too much.

Also, the MRI showed that he has an inferior vermal hypoplasia.  In the cerebellum, there is a thing called  a Vermal.  Jakes is smaller than normal, which is something that they see often in Autistic and Aspergers patients.  The Dr expected to see this because of Jakes history of AS.  This is probably the most definitive way of knowing that Jakes indeed has AS, along with the psychological testing we've had done over the years.

The Dr thinks that because of Jakes history that he stands a 98% chance of having another seizure.  SCARY, again.  So she wants to medicate him for seizures.  Its a pretty mild medication with few side effects, one being that its a mood stabilizer.  How cool is that?!?!  Just in time for puberty!

While on the phone with her, I was floored, overwhelmed and just plain mind boggled!  I had no clue what questions to ask or what information I needed to get from her.  I took notes, fortunately.  I have come up with a couple of questions that I want to ask..

When I got off the phone with her, I just wanted to have a meltdown.  I mean, how much more am I supposed to deal with where my child is concerned.  I don't want to have to deal with more medical stuff with Jakes.  I was looking forward to being done with Jakes medical stuff for a while.  I wanted to wallow for a while and feel sorry for myself for having a defective child.  I don't want to DO THIS anymore.

And I did wallow.   I contemplated floating away on high tide, but the tide was coming IN and that would take me to town. Boring!  I'd have to wait for the tide to head out to float someplace cool.  For about an hour.   Then reason started kicking in.  This is something that is manageable.  Something that could possibly go away and never be a problem again.  Its not like he's in a coma or unable to care for himself.  Nothing about him has changed.  He is still JAKES.

So, I am all about the research and finding the support services.  I am going to call the Epilepsy Foundation to get more information on seizures and caring for Jakes with them.  I want to find out more about the inferior vermal hypoplasia thingy and see what that's about.  I've got to look up and read about the medication they want to put him on.  And lastly, I am going to have to fight with the insurance to get him the medication in the name brand because that's what the Dr wants.

This is not the end of the world.  Just a bump in the road of life.  Once we get the education and the medication started, life will be just as it was, only instead of one pill in the morning, Jakes will have to take 2.

I have to do this.  My child is depending on his mom to make things right, safe and happy.  I can do this.

Fun Facts

I guess there is always something to learn, each and every day.  Yesterday, I learned several new facts about Aspergers Syndrome.  Yesterday, we went to the neurologist to follow up on Jakes seizure back in March.  Yes, I know from March but this was the first available appointment I could get.

Jakes is with his father for vacation week and when his father chose this week, I reminded him of this Drs appointment, how long it took to get it, and suggested ways to work together to ensure Jakes still attended this appointment.  Turns out that Jakes is staying with his other grandparents this week while his father works so it was very convenient for me to pick Jakes up and take him to the appointment.

The Dr asked lots of questions, most Jakes or myself had the answers to, others that neither of us had answers to because his father never got back to me with the answers. When she finished her questionnaire, she shared her thoughts.  She does believe that Jakes as Aspergers with ADHD combined (Dr #3).  She does not think that the Concerta he was on caused the seizure.  She thinks the Aspergers did.  She said that Aspergers kids have a 50% higher chance of having a seizure or seizure disorder than a non-AS kid. 

That was a fact I did not know!

She wants Jakes to have a sleeping or 24-hour EEG as well as an MRI just to make sure things are ok in his head.  I have to get those things scheduled.  If those tests are normal, we do not have to follow up with her.  If Jakes has another seizure within 18 months of the first one, we might have to consider medication.

I think the tests will be normal and he won't be having another seizure.  Fingers crossed!

I think the best news that came from this meeting is that she agrees with his diagnosis and she agrees with the therapy plans I have in place.  She said I am doing a great job getting him the services he needs.

Also in the good news category, my wonderful blogger friend, The Blogging Mama received wonderful news that her son is NOT on the spectrum.  She spent two years thinking he is Aspergers and waiting for the evaluation through her local Childrens' Hospital.  Wonderful news, Mama!  Go over and tell her Congrats!