01/13/2021
Okay .. we *kinda* got some answers ... to start off . As soon as we leftt the rainbow house, kreighton had a seizure then proceeded to sleep for 3.5 hours during clinic. Wouldn't wake up for anyone
1. Orthopedic seen him .. agrees surgery is still needed but wants to holding until he is atleadt 10 if we can. If he gets to be in too much pain we will have to do it sooner than later. We go for a follow up in 6 months
2. Pt/Ot/St all agreed taking a break for awhile from private therapy may do him some good ..I mean he has been going non stop there since he was 9 months old
3. Behavior psychology kinda walked out on us because we had mentioned how kreightons behaviors have changed and were concerned. She wanted to do interventions such has behavior / reward chart and I said no .. kreighton doesn't understand that one bit. . Then she said . So what, you want medications to sedate him .. I said absolutely not .. she then said, ok then , I have no other options 🤷♀️😳
4. Gi said he is still stable at 52lbs .. so no changes are needed at this time .
5. NEURO .. the big one !!!! Ok. So we got to see Dr. Rickard (kreightons primary neurologist). So she sees kreighton like this. She said his EEG didn't show a LEGIT seizure but it did show alot of "electrical activity" which basically shows sudden brief bursts of electrical activity that shows evidence for seizure activity .. so basically ( i hope this will make sence ) if you remember the pictures from the EEG,*if not, I attached them* where the XL SPIKE is shown.. this indicates that there is a sudden burst of electrical activity but doesn't actually create the outwards signs of s seizure .. but the spikes are then followed by a XL EVENT which is similar but more of a subclinical seizure and evidence for seizure activity . .. some of these events last 4-10 mi used.. so again.. to simplify this even more .. dr Rickard said yes, the"events" on the EEG are indicating seizures, but his medicine is doing its job and not being full blown which is why I never noticed it when these events were happening.. its just showing The ones we do see, obviously ",slip through the cracks" i guess you can say he is having a seizure. But the medication is doing its job ...most of the time ... I hope this makes sence . She teared up as she said "kreighton was handed a sh*tty diagnosis and unfortunately, we will never be able to get it fully under control. This is probably the reason he is soo sleepy somedays because he is having these "events" which isn't full blown seizures but its activity" we just have to be patient with him ♡♡ it won't ever get better . But that is okay !! His behaviors , she isn't sure why but was obviously annoyed when she seen the resident say he had depression.. but.. contrary . But him on zoloft..to help hopefully stabilize his moods without sedating him .
Ugh !! What a day ..
