Tuesday: MEPFP, neurology, Five Guys, EEG
Mar. 19th, 2024 04:47 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
walkitoutI did the MEPFP meeting on the way to the Newton neurology appointment. R. and A. were very cooperative, but I also had it on mute most of the time. I did really need to do it, and we’ve got a meeting scheduled to find out whether the BMS can load shed. Which honestly, we probably should have pursued that question a while back, but the good news is that M., the electrician, is 100% up to speed on what I want and what would be involved in getting either what I want or some approximation to what I want, which is massive progress.
We did the neurology appointment. Sensorily very challenging due to diesel fumes and generator racket. Yikes. Oh well! A. was a trooper. We had lunch at Five Guys and then returned for a “routine EEG”. With the lights on and no glasses, A. had involuntary hand movements of more or less the kind that happened at school, so that’s great; they reduced with the migraine glasses and more so with the sunglasses and with the lights off tapered off completely. If there are no unusual wave forms, I don’t really see much point in continuing with the seizure theory at all, because that _was_ an event, and if it doesn’t show, then it’s not a seizure. Dunno where that leaves us, but I am pretty sure there’s still a path to medication management, because keppra and some other things are also prescribed for migraine, and which is a major alternative explanation for what’s going on. But if it leaves us with nothing at all via the neurology pathway, it doesn’t really matter, since I’m also going the route of reduce triggers through changing school environment.
We’re supposed to get the EEG interpretation by the end of the week, so that’s nice; I would not be surprised if we got it sooner, given how the rest of this is going.
ETA: I _finally_ reached someone in pediatric records to have A.’s AMA file sent over to the neuro. I don’t think it really matters, but it’s something.
Today was a _fully_ legit absence because with travel time, she was gone from 9 am to after 2 pm.
One of today’s remaining challenges is trying to figure out what I’m going to tell the school. I’m not sending A. in. I’m toying with the idea of saying she’s so tired from the day at the neurologist that we’re taking a day off to recover, possibly in conjunction with we would like her to at least be around in the background in the zoom meeting with the person from Fusion (but not necessarily prepared to tell the school about that?), possibly in conjunction with she has a therapy session as well. What I’ve actually done is sent email to one of the “interim Co-Special Education Coordinators at ABRHS”, specifically, the one whose signature is on A.’s IEP.
Here’s what I sent her:
“If you have some time, I’d like to have a conversation with you about my daughter A. I picked you because it’s your signature on her IEP, so if there’s someone else who would be a better choice, please let me know. I do not have any complaints about the team members or about the IEP, but we are in the middle of doing some planning and would like to ask you some questions about how best to make the process go smoothly for everyone.”
I _think_ this is anodyne, however, it might be _so_ anodyne it inadvertently inspires fear. One never knows how people will read things.
I was particularly proud of the “we are in the middle of doing some planning”. True, and yet really, really vague. If she goes around asking questions about what’s been going on with A. lately, she could reply from a state of abject terror. Should be fun, and will make what I actually say to her feel like a massive relief, which would be ideal from my perspective.
In the unlikely event A. winds up doing a 72 hour take home EEG, I kinda want to hold open the option of sending her back to school for a day to maximize the potential for seeing weird stuff on the EEG.
We did the neurology appointment. Sensorily very challenging due to diesel fumes and generator racket. Yikes. Oh well! A. was a trooper. We had lunch at Five Guys and then returned for a “routine EEG”. With the lights on and no glasses, A. had involuntary hand movements of more or less the kind that happened at school, so that’s great; they reduced with the migraine glasses and more so with the sunglasses and with the lights off tapered off completely. If there are no unusual wave forms, I don’t really see much point in continuing with the seizure theory at all, because that _was_ an event, and if it doesn’t show, then it’s not a seizure. Dunno where that leaves us, but I am pretty sure there’s still a path to medication management, because keppra and some other things are also prescribed for migraine, and which is a major alternative explanation for what’s going on. But if it leaves us with nothing at all via the neurology pathway, it doesn’t really matter, since I’m also going the route of reduce triggers through changing school environment.
We’re supposed to get the EEG interpretation by the end of the week, so that’s nice; I would not be surprised if we got it sooner, given how the rest of this is going.
ETA: I _finally_ reached someone in pediatric records to have A.’s AMA file sent over to the neuro. I don’t think it really matters, but it’s something.
Today was a _fully_ legit absence because with travel time, she was gone from 9 am to after 2 pm.
One of today’s remaining challenges is trying to figure out what I’m going to tell the school. I’m not sending A. in. I’m toying with the idea of saying she’s so tired from the day at the neurologist that we’re taking a day off to recover, possibly in conjunction with we would like her to at least be around in the background in the zoom meeting with the person from Fusion (but not necessarily prepared to tell the school about that?), possibly in conjunction with she has a therapy session as well. What I’ve actually done is sent email to one of the “interim Co-Special Education Coordinators at ABRHS”, specifically, the one whose signature is on A.’s IEP.
Here’s what I sent her:
“If you have some time, I’d like to have a conversation with you about my daughter A. I picked you because it’s your signature on her IEP, so if there’s someone else who would be a better choice, please let me know. I do not have any complaints about the team members or about the IEP, but we are in the middle of doing some planning and would like to ask you some questions about how best to make the process go smoothly for everyone.”
I _think_ this is anodyne, however, it might be _so_ anodyne it inadvertently inspires fear. One never knows how people will read things.
I was particularly proud of the “we are in the middle of doing some planning”. True, and yet really, really vague. If she goes around asking questions about what’s been going on with A. lately, she could reply from a state of abject terror. Should be fun, and will make what I actually say to her feel like a massive relief, which would be ideal from my perspective.
In the unlikely event A. winds up doing a 72 hour take home EEG, I kinda want to hold open the option of sending her back to school for a day to maximize the potential for seeing weird stuff on the EEG.