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.

The Story

Jakes and I have been operating in crisis mode for a while now. Things really blew up a week or so ago but in a way it was a good thing. Because now we as getting all kinds of help. Help I have been begging for.

I was recommended to enroll in a program called Mobile Response. They are a crisis intervention service. I can call them 24/7 to get help and they will send someone out to the house to de-escalate things if necessary. By being enrolled with them, they will also send someone out to the house to do a needs assessment for us. The therapist would then recommend and case manage us until we got into the services.

I called Mobile Response last Sunday morning because Jakes was melting down and saying threatening things to me. Mel came out to the house and did a little needs assessment as well as talking to Jakes and myself to make sure everyone was calm.

On Tuesday, Mel called to say that she was recommending an 8 week family stabilization program. A therapist will come to the house and work to stabilize us once a week for 8 weeks. It's hopeful that after that, we will be stable enough to enter traditional therapy and/or parenting classes.

On Thursday, the therapist contacted me to schedule our intake appointment for tomorrow.  When they say they are going to offer services, they don't mess around with getting them started!

On Friday, I met with the Mobile Response team for what they call a Family Planning meeting. This is a pre-planning meeting where we decide who to invite to the actual meeting. At the meeting we will review everything that has been going on with us and try to come up with a plan to meet all our needs.

Last week, I sat in Val's office, sobbing my heart out over all this.  I came out of Val's office with things to do for me.  I was to contact me Dr to see about going on anti-depression meds, which I did.  I just started them but I am feeling better already.  I also feel like I have more patience with Jakes.  We also realized that I have a lot of resentment to deal with.  Resentment towards Jakes and his disabilities, towards A/H for having the ability to walk away from being a parent, and oh so much more!

Once the in-home services are in place, I will continue seeing Val on  my own to work on ME.

Another thing I did with Jakes is I took him off the Concerta, which is a stimulant medication.  He is still on Intuniv and seems to be able to function on that alone.  Once he was off the Concerta, a lot (not all!) of his hostility and anger has disappeared.  I am hoping we can work on that more in the therapies we will be having.

So that's my story.  Its been a rough couple of weeks and I am hoping that this was rock bottom and we can only go up from here.