Tripp will be seen at an epilepsy center Aug 5 sooner if they have someone cancel. What do we expect to happen.
After so many years of seizures and SO many different meds and still having seizures daily....always CPS and the grandmal seizures coming several a month now.
Tripp is mentally delayed....how will it be for him?? I am frightened for him because I can't explain to him what is going on. He knows we are going to a new doctor. He has been through so much already.
Most of those clinics allow friends/family to be there. So that would keep one element with him. If he has any favorite "object" or picture in his room bring that so he doesn't feel in the middle of nowhere. Depending on patients mobility they have common space in a lot of the clinics to visit, read books, (try and stay out of your room!! in other words).
Having you there/not there most likely WILL have a bearing. If you are there he will be more stable that if you were absent. I guess I am asking, as would a doctor, how do you want the results? With you absent, tripp MIGHT have higher stress, possibly anxiety (is that a trigger??) that may or may not cause seizures. You can't be there 24-7. You can visit in the evening of the test days and see how he is. That may calm down brain waves (interesting to see if it has an effect).
I know when my friend was in having us (friends) there helped her (as I quote her) "from going crazy". We also brought in "REAL food" that she wanted to hug us for doing.
We were told that someone must be with him at all times. I am sure his neuro told the center of him. We have to do his talking as we are the ones that understand him the most.
I want to know what testing they will do.
If it's at all like the one up here, they have the contacts on the scalp 24-7 with a trunk cable so the patients can move around. They at times will keep the patient up (stress test) to try and trigger seizure to see what region they are from. Sometimes they will lower the medication/s as well to see if another part of the brain lights up that was being suppressed by the medication (if it crosses over hemispheres).
YOU may have to be the one that pushes the button when the seizure hits so they can make note of it and record it depending on his motor skills. They like to be able to note when the seizure starts and stops. Rooms are equipped with camera's and PZM (Pulse Zone Modulation) mic's to capture what happens.
Thats about all I can think of right now from the two people I knew who were in the in hospital clinics.
Thanks Travis!! I hope we can see the doctor sooner than Aug! I want something to stop these awful seizures...all of them! He still has the CPS daily mostly when napping. I don;t think they will have to lower any meds as he had seizures all the time with the meds!
I went through the same thing that Travis described. They asked my family not too spend much time with me (but the only one that actually listened was my boyfriend!) I'm 30 years old but they felt like they needed to be there.
I had the probes attached to my head. I was able to watch tv read and what ever I usually did during the day.
I learned alot from this. The neuro lowered the dosages of my meds so that I would have sezs. I know usually know when one is comming on. This also made me a canidate for a VNS implant that helps stop sezs.