Gina - I am soooo sorry to hear of this!! Sedona was doing so well.
Last fall Hannah had something similar happen. She was having those
myoclonics almost constantly. We got them stopped with zonegran and
right now she is doing really well. She is now 11, also. The neuro
thinks that it had something to do with hormones. May be this is
what is going on with Sedona also. I hope so, and I hope it ends
soon! Let us know what is going on-- Martha



--- In LandauKleffnerSyndrome@yahoogroups.com, "Gina S."
<donabug2001@...> wrote:
>
> Sedona has been in the Hospital since Thursday. She went into
statis seizures at school. She had 25 drops in 1.5 hours. They gave
her 6mg of Ativan and still they continued.
>  
> We took her to the ER and they did a chest xray that was full of
inflitrates but because I told them that she has ILD they chalked it
up to that. NOT! Also, even though she is "High Risk" they made us
wait in the waiting room with all those kids with RSV. And wait in
the hall for a room with all the adult ill patients. Does "High Risk
and No Immune System" mean nothing.
>  
> We were admitted and she was having over 70 drops per day and 6
starring ones. She seized like this for  4 days because they were
waiting for the 1- 5min seizure. These never happen. So they refused
to give her Ativan. She had 12 drops in 6 minutes and the nurse said
no to Ativan. How much damage is acceptable to them before they stop
them.
>
> On the 4th day I lost it. She was wetting her bed and walking like
a drunk. So they changed the ativan dose to 5 seizures in a hour and
she gets 1mg of Ativan. Come on, 6mg didnt stop them why would 1mg.
It was more like here lick this pill, sorry thats all you get.
>  
> We never saw our neuro(Chapman) that is versed in ILD, LKS and
CFD. He let some stranger(Johnson) take care of her and he didnt
take care of her. No EEG nothing. When I talked to our Neuro
(Chapman) he told me that he was too busy to come. She is too
complicated to just hand over. This was the first hospital that I
had been to that I wanted to take her home against doctor advice.
>  
> They(Johnson) put her on Klonopin on the night of the 4th and they
gave her a dose based on an adult. She is 11 and 200 pounds. But she
has a med metabolism of a child. They kept saying that this med will
last 12 hours (in an adult maybe). It lasted 6 so she had no seizure
coverage in the afternoon from 2-8pm. I told the neuro (Johnson) and
he just ignored me. He sent us home with Klonopin 2x day. Even with
the no coverage in the afternoon.
>  
> She is suppose to be on the new med full time but these things
have happen on it so far:
> incontinence, mood swings, low o2 at night, gasping for breath at
night. I dont think that it is worth it. I am going to increase her
Ativan to 3 times a day and take her off this one. Her neuro
(Chapman) never called me back yesterday so I am kinda looking for a
new one. He never saw her in the Hospital either and he works on the
campus. I didnt give it to her in the afternoon and she didnt have
any break through seizures.
>  
>  I have realized the mortality of the situation. That these
seizures can be life threatening and that at anytime they could take
her out. I feel like I am in mourning. Everytime I think about it
the tears come. She was doing so well and then this happens. They
still never found out what the trigger was. I still think illness
but who knows.
>  
> I never thought that she would need raised toilets with handles, a
seizure helmet, and a wheelchair full time. I never thought that a
neuro(Johnson) would think it was ok to let her seize 4 days non
stop without trying to stop them. I never thought that she was wet
herself every morning and not think twice about it.
>  
> I feel like they were trying to kill her. I have never been so
angry. The Nurses on the floor tried but no one else did. Not one of
the neuro's stried to stop them. They just let them continue causing
more and more damage. I dont think that Johnson followed Chapman's
advice either. If he did then he would never let her seize like that
for 4 days. He would know and listen to us when we told him that the
Ativan protocol was 4 seizures in a hour give 2mg of Ativan wait a
hour and then give 2mg more. Not one 5 min seizure give 1mg of
Ativan.
>  
> This whole thing was disappointing, the only reason that we went
to St. Joseph's Hospital was to see Chapman and to stop these
seizures. We drove a hour to go there and for nothing.
>