Special Needs
Lil Kate
member
Advice for 48 hr eeg with a 13 month old...please.
Lil Kate
member
I have posted about this before but I am looking for any suggestions for during the eeg. It is in the hospital for 48 hrs and he has to be in the crib most of the time. He is so active and I have no clue how I am going to do this. I have a portable dvd player, and a new toy, snacks....what else do I need by way of keeping him entertained....What can I expect? Do the people there give you feedback as to whether he is having seizures or not? How long did you wait for result?. I am so nervous and hope it goes well. TIA
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Re: Advice for 48 hr eeg with a 13 month old...please.
Everytime we saw what we thought was seizure activity we had to press a button. It's also being continuously monitored by a tech. At one point the tech came in while waiting for rescue seizure drugs to be ordered because DD1s seizures were getting out of control. I was able to get her into a better sleep and out of the seizures before the drugs were brought, but it was pretty scary.
Remember that because he's in the crib, you have to be with him the whole time. Make sure you have things to do for yourself and that you have some relief so that you can eat etc. We were not given age appropriate food, no formula or diapers were provided.
She was allowed to wear her pajamas the whole time (the top buttoned) which was nice.
Before we left the hospital the resident came in and gave us a prescription, a confirmation of the diagnosis and a follow up appointment.
Make sure you have someone with go with you, since usually an adult needs to be awake at all times. Like PP said if you notice a seizure you will push a button & it will highlight it on the EEG tracings. Also it makes it easier for the techs if your LO is wearing button down pajamas. Getting the leads attached/removed were the worst parts of it all.
As far as keeping him occupied try some DVD's. 13 months is kind of young for TV but if it isn't something he normally gets to see maybe the novelty of it will hold his attention. Bring his favorite toys, & books. Maybe try & pick up a few new things that you can pull out if he is really having a hard time. We did Play Doh, coloring books & stickers too, but DD was 2 when she had her 24hr Video EEG.
We also took her meds, diapers, blanket, sippie cup, and favorite snacks. Make sure to pack extra clothes for yourselves, snacks you may want, toiletries and change or small bills for vending machines. Also maybe a sweater or hoodie for yourself, I always find hospitals to be freezing cold.
We were told to call for results within 7-10 days. I was anxious so I called the office at 5 days & the NP said it had been read & was normal.
Good luck, you guys will be in my thoughts & I hope that you get some answers.
Ours was a little different in that we were allowed to sleep because there was someone monitoring his activity/video. So several times we woke up to nurses coming in and DS seizing.
I definitely agree with everything the PPs said. Ours was an unplanned 3-day EEG and poor DS was stuck in the same onesie the whole time. He did not care but I felt like he would have appreciated a full sponge bath and fresh clothing. So a button-down is a must!
Ours was a little different because of being unplanned so the docs went over the results with us before we left. For us, it was just that he had seizures starting in several places, so no new plan of attack besides getting his meds up to a weight-appropriate dosage. But, if you are not sure your child is seizing, or not sure if there is some focal point causing the seizures, this could be pretty helpful I bet. The treatment options for seizures can be medication, ketogenic diet, surgery, and vagal nerve stimulator (Hope I spelled those correctly!). If the seizures all originate in one part of the brain, that is when surgery becomes a possibility. I hope I explained this correctly and that the info is helpful.
Make sure you recruit some relief people. If you don't have people nearby, the hospital should have a social worker or child-life person who can help you find volunteers to give you some respite.
Good luck. It's not the worst and it's not much fun, either. Just one of those things you just get through. T&P you get some answers!