Wednesday, July 8, 2009

Harley had a neurologist appt yesterday...what a JOKE!

We took Harley to the neuro to order an EEG yesterday. They interviewed with us, I told them the OT, SLP and Psychiatrist all witnessed these 'seizures' (they are petit mal, abscense seizures from what I've been told). Now, no one at camp or school have supposedly seen them, but the people at camp have described him in that state...they just don't realize it's a seizure b/c he doesn't fall to the floor flailing...

Oh, I don't know if I've mentioned it, but Harley has a cyst on the base of his brain which was discovered on an MRI in 2003...He's not had an MRI since...

So we see the first neuro...she says "definitely sounds like abscense seizures"...we're not suggesting meds at this time, but will do an EEG....She said if it's localized and shows up on the EEG this time then they will order an MRI....If it's more geneeralized and all over his brain, then they will consider it "genetic" and do nothing...we'd have to go to a genetic counselor to get further info...ok, well his genes can't be changed...so what the hell is that about?

Now, let me back up...they did an EEG for these exact same seizures on him back in 2003 and they said that he didn't have any seizure activity nor any signs that he had ever had a seizure..BUT they had put him to sleep with an anti seizure med so of course he wouldn't have had any!! GRH!

So they ask about his sleep...ok this kid sleeps MAYBE 4 hours a day...typically from 2-5 or 6 AM ... they have to do the eeg when he's asleep or it picks up all the other body movements (even his eyes blnking!) They decide they WILL NOT sedate him to sleep this time, and just want me to use one of his meds I use for when he goes to dentists' appts to keep him calm...Ok, well then the EEG will be a total waste of TIME!!

To top it off, I get to drive out there again, a 1 1/2 hr drive for a 1 1/2 hr test that probably won't tell us anything since they won't sedate him. I told them the psychiatrist also wanted an MRI done and they said "NO!!"...They said IF he shows something on the EEG they will order an MRI, and then they would definitely have to sedate him...Last time they sedated him and did the EEG and MRI at the same visit under the same sedation...So IF this eeg is even valid...they will have me go back -- driving across town -- for a 15 min test?! That would require me pulling him out of camp for a day or two to top it all off...do they not understand he's autistic and NEEDS his routine? they're gonna mess up his routine by not doing it the "easier" way.

So I pushed...I told them again that the psychiatrist wants and MRI and we could do both at the same time...They said, fine he can order it since he's a doctor!! GRRH!!~ Asswipes!! (sorry for my french there)....

Sooo, they bring in the "head neurologist" and he pulls a tennis ball out of his bag and lifts it up above eye level, Harley watches it...and then says...Oh, well he can raise his eyes up so there's no need to do an MRI b/c his cyst hasn't grown...otherwise it would be putting pressure on his optic nerve and he wouldn't be able to raise his eyes like that"....

I am so mad, I could spit nails!! So now we have an appt for an EEG on the 17th...and I should have the results by the 22nd....

So as we're wrapping it up...Harley goes into a major hallucination...falls to the floor and acts like someone is holding him down and starts screaming!! They stand there and watch in awe!! do they offer to help calm him? No! Do they make a note in his chart? No?! WTH!?

After about 5 minutes I convince him that no one is holding him down. I promise him I would stop and get him some McD's or Burger King on the way home for doing such a good job when being assessed....

So I go to stop at McD's and DH has a fit...I gave the older kids a choice of BK, McD, Fried Ckn or Pizza on the way home (it's been a long day I don't feel like cooking)...They agree to pizza...harley doesn't eat pizza b/c it gives him blisters on his tongue to eat tomato....DH goes off and says, he can eat pizza like everyone else!! Then he falls asleep for the rest of the ride home...in the meantime I have a whiny, whiny, whiny 12 yr old (Harley) having a total fit b/c I had promised him BK or McD's....so yeah, I was in a bad mood after a 1 1/2 hr drive with a whiny 12 year old...

I went ahead and got him his BK since DH was sleeping anyways...then when he woke up I explained that I just couldn't take it anymore and I was had promised it so it's really not a crime...

1 comment:

Twice the blessing, The Day in the life of living with twins said...

OMG is all I can muster up about that appt...that is ridiculous!!!!!!