I finally touched base with the neurologist’s nurse today. She said Maria’s Trileptal level was fine in October, but is low now. She claims she told me to increase Maria’s Trileptal from 2.5 ml to 4.0 ml twice a day, but for the life of me I don’t recall her telling me that. I can’t imagine I would forget something like that. Anyway, she said no big deal, in fact, that makes the low Trileptal level less concerning since she’s not getting enough of the medication.
The doc would like us to try the increased level of Trileptal for 2 weeks, then start with 1 of the new meds (doesn’t matter which one) for 2 weeks, then add the 2nd new med for 2 weeks. That way we will know what’s doing what, rather than changing or starting 3 new things at once. (New meds are supposed to make a difference in a couple days, so we should know quickly if they’re going to be worthwhile or not). Now I remember one of the reasons I like him so much. He’s a good thinker, makes sense, and doesn’t overreact to things like daily seizures. He wants to see us, maybe in May? I made an appointment with someone on Maria’s last day of school.
I got the neurodevelopmental pediatrician’s report today–4 pages and 11 recommendations (although one of the “recommendations” is ‘Family congratulated on wonderful support they are providing’ — gotta love that!!). She’s also recommending possibly getting another EEG monitoring (where you check into the hospital and get hooked up to the EEG and monitor for at least 24 hours). Seems like overkill, but we’ll see what the neurologist thinks. Work on making choices, 6-8 pictures, switches; pulmonary follow-up; continue making great strides toward mobility and posture; investigate a wheelchair van; look into getting an adaptive potty chair; continue ongoing therapies; come back in a year. This is just from 1 doctor, remember. We also got a bunch of follow-ups from the new physiatrist, as Andy mentioned yesterday. And we still have 2 more doc appts this week!!!
One of the recommendations from both docs we saw this week was to come up with a simple communication system that everyone will use with Maria. The school speech therapist should develop it (in consultation with us and the home speech therapist). I continue to ask for this, but obviously I’m not asking clearly enough, they’re not responding clearly enough, or I’m just not hearing what they say. Either way, I continue to be frustrated…. We did get a switch for the computer, so when you push the button (the switch), it acts as a left mouse click (or right click or double click or enter or space — there are 5 options with the switch interface we got). It works well with the books Maria’s been reading/listening to on the computer as part of her schoolwork.
I’m going to the Abilities Expo in LA in a couple weeks to learn more about more of these types of things, and especially to start getting educated on what vehicle will fill our needs. My RAV is getting to be too small….
Oh yea, and Manolis won $500 in one of the AZ lottery games!!!
I don’t know if it would be any use to Maria; I use a device called Tobii C-Eye with a little boy I work with whom has severe cerebral palsy. He communicates through eye pointing which the computer tracks – he can now have a 2way conversation. They are expensive, but have put a whole new spin on his life! This is an idea that may be suitable?
Hello T, thanks for the suggestion. I’ll check it out. I don’t think it will work for Maria because she has cortical visual impairment and doesn’t often look directly at things. Also, some days she uses her vision, and other days you would think she was blind. But I will look it up and see if it might be something to pursue. Let us know if you have any other good ideas!