what to expect for a video eeg with an ept test and a spect test?

Erin - posted on 02/05/2013

They gassed my daughter before sticking her for the IV for the MRI, I think I spent the rest of the day in tears because as she soon as she was out my heart just sank to the floor.

Erin - posted on 02/05/2013

My daughter is five years old she was diagnosed with idiopathic epilepsy when she was four years old. She has been on four different drugs which are not doing a whole lot good and now her doctor wants her to go have a five day EEG done. I hope she doesn't get an IV in, last time she had one they gassed her first and when she fell asleep my heart sank. I really don't know what to expect.

Danielle - posted on 03/09/2009

i have not heard of the video eeg or pet test,

my daughter has had a normal eeg and mri scan as well as a cat scan, i was very upset as i was outside the door while she was having her mri scan as her dad went in with her, it was a hard time as it was her first fit out of the blue that put her in intensive care,

you have to think that it is for the best, you son will not be in any harm,a play theropist had a play mobile model for my daughter to play with so she was not scared

at the end of the tests you will know for sure how he is and thats the good thing,

make sure you get lots of support from your family, look after his teddy while he is in the test , remember he will know you are with him even if you physically aren't

try to be strong, it will feel like a life time but will be over sooner than you think good luck with it all xxxx

Drewin - posted on 02/26/2009

Bring LOTS of familiar things from home for the video eeg. The sleep deprivation is a really hard part of the test, but for the eeg you have to stay within the range of the camera and that can be super challanging too. Each night we played a game called "What Was Good About Today". The challange was to do something throughout the day to make something good about the day. Alot of times ours was coming up with some good natured trick to play on the nurse when they came in for vitals (you kinda have to judge if the nurse was the joking type lol) Ask if you can move the bed from time to time so he can get up and do some stretches or play on the floor for awhile. You will also probably find that his scalp will be incredibly itchy as they glue the electrodes to the scalp. Plain old distraction is likely your best bet to combat this! As for the other tests, if they fully sedate him, the scariest part is when they give them the gas to make them fall asleep before they intubate. You may or may not even be there for that part, it all depends on your hospital. Good luck, hope you get the answers you are looking for!

Betty-ann - posted on 02/26/2009

thanks, we just got the brochure in the mail yesterday with the registration forms and all so we are almost there i just want things to go back to the norm and i am just thankful he is so young and wont remember this! i will forever....he scared me so much the other day he hadnt had a seizure in a couple of days and then boom he had one and then 2 more within 20 minutes and they lasted longer than usual so i paged his dr right away and they responded right away and made me more at ease and what i really appreciated was the dr i have was away but still called me even though he was away to find out about brady and what i could do and actually helped me figure out what could of caused it which was he just came down with a cold and had a temp. so that can cause him to have seizures so they gave him a boost of meds and upped his trileptal another ml and so far so good nothing since that aweful day! so i am just trying to be strong until the hospital stay but i am nervous about them taking him off the meds cause i hate to watch the seizures cause he now gets blue or purple lips during them but i do feel good that i will be in great care and have plenty of support well i will update when we return and hopefully have an operation date to tell!

Holly - posted on 02/25/2009

That all sounds good. I know the hospital also had a bunch of toys and movies he could watch. I sounds like you are all set. Good luck with it all.

Betty-ann - posted on 02/25/2009

thanks but according to what i was told he will have free range to do everything he normally does they want us to just do as we always do in a day and i was told he can even wear regular clothes they just have to have either zippers or button or snaps on the shirts so i got a few kimono type shirts for him to wear! it is at boston childrens so i know he is in good hands and i am sure things will be fine i am just getting nervous cause it is almost time! if anyone knows of things i could bring to make it go by smoothly i am listening! so far i packed some clothes some coloring books and crayons some color wonder stuff and puzzles and some blocks i am also gonna bring his nighttime music box he listens too at naps and bedtime just trying to make him more comfortable cause when he had to stay overnight for observation after having multiple seizures he didnt sleep much at all so i am hoping by bringing his bed to him in a way he will feel more at ease to sleep! well he is only 2 well on march 2nd so i dont need to many things but any suggestions i will take!

Holly - posted on 02/25/2009

Hope all goes well for you. I have a son that is 51/2 and a very active little boy. He has had a few video eegs done and 3 of the 4 went well. I think it all depends on the hospital where it is done at and how the unit it set up like. The 3 that went well they had a very nice set up where they had a long cord to the kids could go out in a commons are to eat, watch tv, play with the other kids and have a normal day except that they were hooked up to the eeg. He got to sleep normal and take naps when needed. The first one he had was not that nice he had to stay in bed all the time with very little tv to watch, we were only there 24 hours and left. Good luck with it all.

Betty-ann - posted on 02/20/2009

thanks for both of your insite i just hope things go along smoothly! they are putting him to sleep for both his tests cause he is only 2 well not yet but he will be when he has the testing done! ugh.. sleeping only a couple hours that is going to be tough i hope they dont do that.. ugh.. i just cant wait for things to be back to normal once they get all the info and he can have the surgery. well thanks for your well wishes and prayers god knows i need them right now i am so nervous and scared of the unknown.

Juanita - posted on 02/15/2009

Hi...My daughter who is 10 now has had seizures since she was 4. When she turned 9 she started having up to 50 of them a day,her seizures are focal and happen only on the left side. We had the video monitoring done and we onlt stayed the night due to her having so many,they were able to get enough info. We also had the Pet scan,it's like an Mri,they will inject some kind of dye first then he'll go into a tube that's like an open Mri. My daughter was given Valium to help her feel comfortable.I hope this helps.Good Luck and God Bless.

Juanita Gray

Annette - posted on 02/15/2009

My son recently had the video eeg and a pet test. The Pet test was pretty much like an mri. They did inject him with some sort of isotope, let it sit for awhile then put him in the machine. I think it only took about 20mins. whereas his mri took 45 or so. It wasn't too bad, but he's 14. As for the 5day video eeg, that was horrible. Mostly the sleep deprivation. He could only sleep for a couple of hours each night, so that was torture on all of us, then they weaned him off his meds, which made him shakey. He only had two seizures while we were there and they actually kept us 7 days, ugh! Good luck with your lo's tests