Thursday, November 5, 2015

Botox and EEG results

Reagan had a pretty good day today. She's been very sweet and laughy, but with random bursts of kookiness. Her regular nurse was back today but still very fatigued and not feeling well from the strep (but on antibiotics and not contagious anymore). One thing to note is that Ryan has been coughing (since last night). It's a dry cough, but still concerns me a bit. I've done my best to keep him far away from Reagan today. No therapies today. The only therapy she was supposed to have, OT, was at the same time as the appt they squeezed us in to get botox today. Reagan's PM&R doctor finally found out the dosage information for her previous doses of botox years ago so that she could make sure she used the correct amount this go round. They had a cancellation today for 1pm, so they called and got a quick insurance approval and we headed over. I held Reagan and they used a cold spray to numb the area and then injected the botox into her lower leg muscles. She did awesome! Didn't even flinch. Hopefully this will work to release the tension in those muscles, although her doctor said it's pretty bad at this point and may be irreversible. She really wanted to do serial casting, but with Reagan being double the size now and us living in a two story house, that would just never work! So we're going to see if maybe the orthotics company can either make a pair of adjustable AFOs or modify her current ones so that we can progressively decrease the angle to better stretch her. Her doctor also mentioned that if this strain of botox doesn't work, there is a newer strain that has worked well in kiddos resistant to the main strain (she said it worked in 9 out of 10 patients of hers that were resistant to the main strain). So at least there's another option if we don't see results from this. Unfortunately, we would have to wait another 3months though before trying that, so hopefully this one works! We also got some GREAT news today! Her neurologist finally called me with the results of her EEG. It looked great! No spikes, no discharges...nothing! Absolutely nothing that would indicate a seizure. I'm completely and totally amazed! We really thought they would find something. She was doing a lot of questionable things that week, many of which we caught on the video EEG. But everything they caught, even when we pressed the button to mark something questionable, everything looked good. He actually said it looked exceptionally good for someone who used to have as many seizures as she had (which he's said before but it's always nice to hear)! So all good news! I have no idea what exactly these things are that we see her do, but whatever they are, they obviously aren't seizures! Very good news. Very. Thank you for all of your prayers for our girl!

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