Denae
09-21-2007, 09:08 PM
I tool off work early Thursday afternoon so we could go and really relax early- and miss the traffic.
We got to the hotel and the girls swam and just had a good time. I don't remember the hot tub ever feeling so wonderful.
This morning we get up and get ready,Ri lost her VNS magnet in the hotel van, but thankfully the same guy that dropped us off picked us back up and her magnet was still where she stuck it.. We are down to two-
After waiting more than an hour I saw Leigh coming toward us. She sits down across from me, nothing unsual. She normally comes and talks for a few minutes before Ri goes back, just chit chat. She starts apologizing- I wanted to be sick-
Remeber Dr.P's old assistant, the one we had such a hard time with about 2 years ago- She does the scheduling- Dr.P had to be away this week and someone was supposed to call us to reschedule the appointment. That didn't happen.
Dr. S is the other ped neuro there, she said he was with a new patient but would see us next, if we were ok with seeing him. We had already been waiting almost an hour and a half so we stayed and waited. I was still upset, I had a lot I wanted to discuss with Dr.P and not someone who doesn't really know Ri, that would be pointless.
Finally we go back, it was kinda nice to have a fresh look at Ri. Although the news was no different abotu possible seizure control. I asked him a few questions, mainly about meds. He suggests we try her on depakote again. She is older and less likely to have the same side effects as when she was two. The problem is Dr.Parrott said he wouldn't put her on it for those very reasons. He said he didn't want to make any changes with out Dr.P knowing so we aren't changing anything.
We did talk about the Klonopin and he gave me a schedule to wean her off of it, if we wanted to. I do, but not with out replacing it at the same time. He said to break the .25mg tablets in half, droping only that much per month. If we saw an increase then we could talk about what to do next. The memory of what happened with the Topomax is still fresh enough that I am not messing with anything unless we have something to back up the wean...
He did say that we needed to keep a close eye on her regression, that if it continues we need to call. Since she has a history of regressions followed by a plateau and progress he just wanted us to watch between now and her next appoitment.
I am sending Dr.Parrott an email with all my questions, I am not waiting another 3 months for all the questions I have had for more than the last 3 months...
So it was really kinda a waste of time, except for having her VNS checked.
She has been ok the last few days, it sort of worries me because she has been super hyper- oh geez, I almost forgot about her behavior she was like something on speed all weekend. It has been driving me crazy, it was almost impossible to talk to Dr. S over hear constant chatter and noise making. I have also noticed with the regressions, her autistic like behaviors are really worse.. I can only imagine what he was thinking, he isn't like Dr.Parrott who says exactly what he thinks (100% like House.) Dr. P has told her before he has a time out room and she can go sit there- trust me, she needed it last time.
So here we are...
My stomach is in knots again....
We got to the hotel and the girls swam and just had a good time. I don't remember the hot tub ever feeling so wonderful.
This morning we get up and get ready,Ri lost her VNS magnet in the hotel van, but thankfully the same guy that dropped us off picked us back up and her magnet was still where she stuck it.. We are down to two-
After waiting more than an hour I saw Leigh coming toward us. She sits down across from me, nothing unsual. She normally comes and talks for a few minutes before Ri goes back, just chit chat. She starts apologizing- I wanted to be sick-
Remeber Dr.P's old assistant, the one we had such a hard time with about 2 years ago- She does the scheduling- Dr.P had to be away this week and someone was supposed to call us to reschedule the appointment. That didn't happen.
Dr. S is the other ped neuro there, she said he was with a new patient but would see us next, if we were ok with seeing him. We had already been waiting almost an hour and a half so we stayed and waited. I was still upset, I had a lot I wanted to discuss with Dr.P and not someone who doesn't really know Ri, that would be pointless.
Finally we go back, it was kinda nice to have a fresh look at Ri. Although the news was no different abotu possible seizure control. I asked him a few questions, mainly about meds. He suggests we try her on depakote again. She is older and less likely to have the same side effects as when she was two. The problem is Dr.Parrott said he wouldn't put her on it for those very reasons. He said he didn't want to make any changes with out Dr.P knowing so we aren't changing anything.
We did talk about the Klonopin and he gave me a schedule to wean her off of it, if we wanted to. I do, but not with out replacing it at the same time. He said to break the .25mg tablets in half, droping only that much per month. If we saw an increase then we could talk about what to do next. The memory of what happened with the Topomax is still fresh enough that I am not messing with anything unless we have something to back up the wean...
He did say that we needed to keep a close eye on her regression, that if it continues we need to call. Since she has a history of regressions followed by a plateau and progress he just wanted us to watch between now and her next appoitment.
I am sending Dr.Parrott an email with all my questions, I am not waiting another 3 months for all the questions I have had for more than the last 3 months...
So it was really kinda a waste of time, except for having her VNS checked.
She has been ok the last few days, it sort of worries me because she has been super hyper- oh geez, I almost forgot about her behavior she was like something on speed all weekend. It has been driving me crazy, it was almost impossible to talk to Dr. S over hear constant chatter and noise making. I have also noticed with the regressions, her autistic like behaviors are really worse.. I can only imagine what he was thinking, he isn't like Dr.Parrott who says exactly what he thinks (100% like House.) Dr. P has told her before he has a time out room and she can go sit there- trust me, she needed it last time.
So here we are...
My stomach is in knots again....