We go to pittsburgh childrens in may......what do i expect - Epilepsy Message Board

gagcas · 03-02-2004, 05:34 AM

hi all. we have gage scheduled to go thos the pittsburgh childrens hospital in the begining of may. he will be having a 23 hour test so it is an overnighter. has anyone that has had a Video EEG done on thier child tell me what it is i can expect to go on while we are there. i was told i xcan sleep in the bed with him or one next to him. with this test does it mean he will have these wires on his head the whole time? god he had a hard enough time with the regular EEG. they made his head itch and the kept coming off. im not sure if they have stuff there for him to keep busy or what not. i got on the web site but i couldnt view the pictures on my pc. any help would be great. thakn you all in advance.

kayakmom · 03-02-2004, 10:39 AM

Quote:

Originally Posted by gagcas

hi all. we have gage scheduled to go thos the pittsburgh childrens hospital in the begining of may. he will be having a 23 hour test so it is an overnighter. has anyone that has had a Video EEG done on thier child tell me what it is i can expect to go on while we are there. i was told i xcan sleep in the bed with him or one next to him. with this test does it mean he will have these wires on his head the whole time? god he had a hard enough time with the regular EEG. they made his head itch and the kept coming off. im not sure if they have stuff there for him to keep busy or what not. i got on the web site but i couldnt view the pictures on my pc. any help would be great. thakn you all in advance.

Sam has had a 2 day, 8 day and 11 day VEEG. Often they will wrap the kids heads with gauze and this may help it be less itchy. (not the policy of the unit we were in so he itched and had pretty nasty hair after 11 days!!)

Bring things to keep him busy. We brought some craft things, coloring velvet posters was a big hit. THey had a *********** so we had to borrow and bring those games. Videos also helped. His own pillow helped him feel a touch more comfortable. Stuffed animal to squeeze also helps. I have a friend who took a beanie baby and put fake leads on it and wrapped the head. Really cute then when she was out of the bed to use the toilet she put the lion there!

gagcas · 03-02-2004, 12:02 PM

thank you kayakmom. i could not fathom being there doing that for that long. i am really hoping that the dr.'s can get what they need in the 23 hours that we are there. i ahve a family and pittsburgh is about 2 hours from here. my husband would be home with my daughter while we are there since they only let one parent stay the night with him. we have 1 car and he would need it for work when we get back. but hey....finding out whats wrong is more important i guess right. when you were tehre for the extended days.....did you know that going in or because they didnt find everything out int eh time they thought? thanks again

LisaGuthrie · 03-03-2004, 01:08 PM

Hey Kiddo...

Call the hospital and find out what they have in the ped-neuro rooms.

At Tampa Childrens we get the following: VCR, full cable, *********** 2 and there is a toy/game room that we're allowed to use. At Tampa the kids are allowed off the video up to 15 minutes 3 times a day. They also have movies and games for the PS2 that you can barrow.

His last stay in Dec was a lot easier. The camera was mounted in the cieling so we did have to keep him "in bed".

Yes, they will have the leads on the whole time. Jake has always been wired and then gauzed. The last time we even took a Santa hat to cover that...

any hat will work as long as it COVERS the gauze tightly... Stocking Caps would work as well.

Bring pillows from home for both YOURSELF and Gage.

Bring his favorite toy or stuffed animal.

Bring anything that he HAS to have at bedtime, his fav book, blanket, etc...

PJ and clothes - he should be wired wearing something that buttons or snaps up the front. If it's a pull over the head deal, he wont be able to change his shirt once the leads are on. Even if you think 23 hours is a short time for clothes and don't plan to change, he could spill milk or food on himself and then be stuck in yucky clothes.

Ask when you get there, most hospitals have a frig tucked away someplace for long stay familys that you can put a soda or yogart etc in. I always take a Sharpie for putting Jake's name and room number on my frig stuff with.

Can't think of anything else at the moment. Will add to this if something else pops into mind!

(((HUGS))) and love to you both!

Lisa and kids

gagcas · 03-04-2004, 05:38 AM

THANKS a lot lisa. that helped me out so much!!!