Failed Attempt at the EEG

Yesterday was the big day we had been waiting for, Titus's72 hour EEG "helmet".  The appointment took almost 6 weeks to get, then got rescheduled (it was suppose to be last week, but the machine broke).

So, I took him and we waited for a while in the waiting room then got called back.  Let me just tell you that I in no way was prepared for what was about to happen.  I did do some research on this and this is what I saw:

This is still not something that I really WANT my child to ever have to endure, but this looks like something that you just walk in, put on and then try like heck to keep the darn thing on him for the next 3 days.  

Well, I was Wrong!  

This is something more similar to what we walked into:

except these wires go down onto his chest as well and he would have to carry around something like this white thing (monitor) around with him everywhere he goes:

This white thing is about the size and weight of a brick, meaning that "I" would have to carry the whole thing around with him everywhere he went for the next 3 days!  and good luck with the sleeping situation!!

The technician and I tried putting the thing on him, and after a huge, long struggle we still didn't get one out of the THIRTY wires onto his head (they are super glued individually to his head {hello, hair}, then little adhesive strips with finger nail polish remover is put on top of that, then this drill like thing is used to push it down into his head!!!!) Are you getting this folks, definitely NOT what I expected walking into this appointment!!! And totally, not what I was expecting 2 days after Seth's vasectomy and 3 days before we pack up and move our entire house!!!  

Even if we would've gotten this thing on him (which the tech said, that she COULD get it on him, it would just take SEVERAL hours and that he would probably pass out a couple of times from complete exhaustion due to crying and fear and panicing, and that we would probably be there til 7:00 that night!!!!!!).  We would still run into the problem of someone carrying that thing around with him everywhere he goes for 3 days.  Also, with 4 other kids in the house, this would be a very difficult thing for me to do on the weekday.  I would be afraid he (or one of his siblings) would break it or kick it/hit it and interfere with the reading. Then all of that would've been for nothing!!!

Needless to say, I told the technician that we would have to go a different route.  Seth was not with me, and I felt kinda overwhelmed making this huge decision without him, but I did feel pretty confident in my Spirit that this was the right decision (to leave).  Please, don't get me wrong, IF this was the only route to go to prevent his seizures then we would do it, no matter how hard it was.  But it's not the only route.  To me, this seems like a "last case option".  He hasn't even been having the seizures recently, thank God! and we honestly feel that he was misdiagnosed and that he only has Breath Holding Spells.  We are looking into ways to try to get him off the Keppra medicine and treat him in a different way. 

I did call Seth once the tech stepped out for a minute, and I expected 1-my nursing baby to be screaming in the background (but she was fine, yes!!) and 2-for him to be disappointed in me for not just gritting my teeth and getting the thing on him!   However, I should have more faith in my hubby after telling him that it was like going to hell real quick and that I couldn't do it, he said,
S:  "Are you still up there?"
C: "Yeah"
S:  "Just come home!  I trust your decision 100%! We will just take him off the meds and go a different route {screw this!} haha, maybe you didn't need that last part, ha!

After discussing things over with Seth, my parents, Seth's parents, and his godparents (who are a pediatrician and a P.A),and God of course ;),,,we feel like the next step is to go go Augusta and get their opinion.  I mean I do not know how much confidence I really have in our neuro here, why on Earth would he have even scheduled this test for a one year old boy? He is NOT going to sit still without sedation and he should know our family life (4 small kids to tamper with the test, which the tech said happens ALL the time!).  Also, a one year old boy is not going to sit and watch tv with this thing attached to him (he is NOT!!).  I tried really hard to give his neurologist here another chance before heading up there (we already had an appt scheduled, but we were semi hoping it wouldn't even come to that, that his team here could treat him).

Our Augusta appt is May 17th.  We are praying for some wonderful news. We will continue to keep him on his meds until we get the permission and support/help from a medical professional, this medicine would be really dangerous to take him off of on our own.   As far as the "helmet" goes, hopefully he won't even have to wear the helmet (that he will be re-diagnosed with just BHS) and that if he does have to wear it then he can be sedated and stay there.  I know it would be awful to stay in the hospital for 3 days, but we would have a more accurate reading and we wouldn't have to worry about his siblings tampering with the monitor/helmet.  

As always, thanks so much for your concern, support, prayers and just being there for us and Mr. Titus!

Let's leave this post with a sweet pic of my handsome buddy :)

Love,