DD is 3 1/2 yrs old and was just dx with pdd-nos. I thought her staring was her just being in her own world but yesterday at once of her sessions the Dr thought she was having a seizure--stopping playing then starred into space for about 15 seconds then BLINKED several times at the end and started back to what she was doing. So now we are supposed to do an MRI and EEG. I'm so nervous about what this is goign to be like for her and us. I feel like we don't have the option of not doing these test now that we think she is having seizures. Please share you stories and advice, etc. I can't imagine how difficult it is going to be to do these test.
My son's first EEG went okay, but the second EEG (sleep-deprived) was a bomb. He couldn't relax because of the sticky sensation of the electrodes.
His MRI, on the other hand, went fine. He had a liquid anesthesia first (Dormicur/midazolam) and then gas. He was 7 at the time. Here's the full report plus some links at the end (ignore the yellow highlighting):
We had to be there very early, but then waited a long time. Grrr. Our son hadn't eaten or drunk anything since 9 pm the night before, but luckily he
was too busy playing in the playroom to complain about hunger or thirst.
First he got a liquid anesthesia called Dormicur (midazolam) which tasted awful. He needed coaxing and bribing but he got it down. It worked rather quickly, because on the way up to the MRI room (one floor up) he was getting groggy. By the time we lifted him up onto the table he was slurring his words. He was saying "I'm scared." Poor guy.
It was pretty scary with 4-5 nurses bustling around, attaching the heart monitor, checking for metal in his pockets, etc. I just stayed at his side, stroking his hair and reassuring him. Luckily the Dormicur causes amnesia, so he doesn't remember the scary stuff.
Then they gave him a mask with gas anesthesia, and said he was out. His
eyes were still partly open, so I was a little reluctant to leave. They told us
they'd get us when he started to wake up, and I wanted to make sure they knew he has autism (no one else seemed to catch this in his file!). The nurse was like it'll be fine, I'm shutting the door now. We waited about an hour, and I was starting to get uneasy because both my husband and I had gotten the impression from a previous doctor that the anesthesia would only last 15 minutes! (Maybe he actually meant the MRI).
They finally came and got us, but he was not waking up. He was probably just
exhausted. We let him sleep a half hour more, and then started gently waking him. He sat up in bed to look at the pulse monitor, but could barely hold his
head upright. It was a good half hour more before we wheeled him down from recovery back to the children's ward, where he was in an observation room with another kid and a tv/dvd. We finally left around 5 or so, and ate dinner at
McDonalds.
When we got home, after having picked little brother up at Grandpa's, he built his new Bionicle, one of his many prizes that day.
- We coaxed him out of bed with a "Happy Brain Day" present - the Bionicle.
- We gave him a book after he successfully drank his medicine, and the nurse gave him a Beyblade.
- In recovery, the nurse gave him a diploma, and at McDonalds he got a car happy meal prize.
Given a choice between an ordinary day and a happy brain day, he said he'd choose brain day, so I felt we succeeded in making it a positive experience and keeping him from worrying he was sick.
In retrospect, we regretted not talking to the hospital ahead of time and not having anything written prepared. We felt that it was hard to get the busy nurses and doctors to listen to our concerns. They had zero knowledge of the case, and weren't even aware that autism was the suspected diagnosis. If nothing else, talking to them ahead of time might have helped eliminate the wait, but at least the play room made it tolerable.
Here's an article about Going to the Doctor, by the National Autistic Society in the UK.
http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=1064&a=1144 0
The article included a link to a pamphlet you can hand out to the doctors and nurses taking care of your child. The pamphlet might help them take your concerns more seriously:
www.northshorelij.com/workfiles/autism/YourNextPatient.pdf
Here are other topics on our forum related to MRI:
http://www.autism-pdd.net/forum/forum_posts.asp?TID=17805&am p;am p;KW=MRI
http://www.autism-pdd.net/forum/forum_posts.asp?TID=18811&am p;KW=MRI
Good luck with everything.
< =text/>_popupControl(); The boys had an MRI at age 2. It was an all day event, we were there at like 6 in the morning and didn't leave until 1 or 2 in the afternoon. A lot of time was just prepping and filling out paperwork. They had a great playroom. They sedate them, and they did one child at a time. The sedation process was a little difficult cause they did have to be held down, once they were both out though they went down and did the MRI, I didn't go because I was pregnant, so DH did. then they came back up and slept for a long time so they could wake up on their own. They both woke up BAD, so if there is any comfort toy they have I would definitely take it. They have a hangover afterwards, are wobbly, but they remember nothing about their experience they assured me. They will tell you to feed them, they told us to avoid greasy stuff and give them some complex carbs, mac and cheese or spaghetti, something like that. They slept good that night and that was that. It was pretty painless, the sedation part was the hardest because of the fighting part..We are taking my DD in on sept 6 for both and they are both being done under sedation. She is 2 and has had 2 CT scans one under and one not.
She also didn't wake up to happy - we did find that something to calm her before the gas was very helpful.
My DD would never sit still or go to sleep so to do them under sedation is the only way but doing them both at the same time (blood work also being taken for testing at same time -getting blood from her take 4 people when she is awake ) makes me feel alitte better. But it is very scary to see your little one limp VERY -be brave HUGS.
mom to Ella 26 months pdd-nos and Emma 2 months
We did the EEG at age 2 1/2. The test itself was easy and painless. They put him under anesthesia to attach the electrodes. Then he sat in a crib like bed that looked like a cage and watched TV, napped and played with his toys for 23 hours. I brought a duffle bag full of brand new small toys and doled them out throughout the day.
But (you knew there would be a "but" right?) the fact that because they used the anesthesia to knock him out to place the electrodes meant that he couldn't have anything to eat or drink in the morning. When C wakes up in the morning he wants milk and wants it BAD. He screamed and cried from the moment he woke up, through the whole 45 car ride to the hospital, as I carried him through the garage and the hospital and throughout the entire 30 minute wait in the waiting room. It was BRUTAL! All kinds of nice people kept coming up to me and asking if they could help but there was nothing anyone could do.
I gave him his sippy cup as soon as he woke up from the anesthesia and it was smooth sailing after that.
What were the results of these tests??
Can they determine seizure activity from them? also, is this a way to rule out other things?
My son has had a few MRI's and EEG's. They were not pleasant for him or for us to go through. extremely exhausting. My son has a lot of sensory issues, so his were done in the hospital under heavy sedation and of course when he woke, he just wanted to pull all the wires off. He has had 3 24 hours EEG's and 4 MRI's.
Nothing ever showed up.
The MRI was fine. He was sedated at a children's hospital for the procedure, and they were real pros. I don't think he was too upset when he woke up. My dh and I were both there to cheer him up afterward, and it was OK. I believe the purpose of this test was to see if he had any brain damage or abnormalities causing or caused by his seizures, and the results were fine.
The sleep deprived EEG was not as easy. We let him have 4-5 hours of sleep, as instructed, instead of his usual 10, but it was too much. We held him down as they tried to glue the 40-50 electrodes to his head, but he worked up such a sweat that they started coming loose while the nurse was still applying them. Even if she could have attached them all, I doubt he would have fallen asleep there. They gave up and told us to reschedule. The 2nd time we went to another location where they reputedly were better with difficult kids.
HTH!
Thanks so much for sharing! I have a feeling G is not going to like the electrodes being put on her head, she hates wearing hats. I really think she might be having Absense seizures.... My goodness the 24 hr test sound terrible! can they really tell if someone is having seizures with just an hr test (that's how long they said the test would be). I like the benadryl idea! The nurse is calling me back. I seriously don't know how G is going to go to sleep unless she is sedated but it's worth a shot. She also needs loads of blood work but they are going to do it with the MRI. G did not do well waking up from anesthesia when she had her ear tubes in at 18 months, screaming bloody murder inconsable for 30 minutes straight until we finally walked out of the hospital...but I'm sure it was not heavy sedation like they would need for an MRI. Anthony had a sleep deprived EEG about a year ago. I think he was only allowed to sleep about 5 hours the night before - so DH stayed up late and I got up early. Even though we live very close to the hospital, I was sure he would fall asleep in the car - he didn't. They put us in the room and attached all the electrodes to his head. I thought this would drive him nuts but he handled it just fine. Then they covered his head in gauze to keep them in place. They leaned him back in a very comfy recliner, covered him up with warm blankets, turned out the lights, closed the door and he was asleep in about 2 seconds. I was nodding out myself. I think the test itself was 30 minutes. Before you knew it, we were outta there. He didn't have to be sedated at all.
Haydens EKG was last month and didnt go that great but could have been worse. He wouldnt take the sedative at all screaming bloody murder and getting violent so they had to give it to him rectally which he did not like. And neither did we because they were not very gentle at all!
His MRI was a nightmare! The first one was sleep deprived and he wouldnt take the sedative for anything so we drove to las vegas (we live in az) for nothing! The second try was at the developmental ped. app. and that one didnt happen either! So we finally had to put him under anesthesia and that went ok I guess but the drama started after when he was comming out of the anes. He was veeeery violent, screaming for at least an hour straight! He didnt know what was happening to him so I can imagine how scared and confused he was. Finally he conked out!
I hope Im not scaring you, its just that my son dosnt do good with taking his medicine period so thats why we had such a hard time im sure! He wont even take his anti-seizure meds so I mix it with strawberry milk and he dosnt even know!
Austins EEK didnt go well.They didnt put him to asleep and I told them they should have gave him something to be still but they didnt so...after 5 tries the nurses got irriated and said it couldnt be done..I told them the 2st try but they didnt listen..LOL..
Going in on Tuesday morning for yet another EEG! He does REALLY well with it though. They need to get him in FAST and get the sensors stuck on, wrap then do the test...get those sensors off ASAP b/c he hates anything being stuck on his head.