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The Queen was diagnosed with epilepsy last August. The seizures have been fairly well controlled over the last 4 or so months but recently started breaking thru the medicine. The neurologist upped the meds 3 times with no luck. So, she has ordered an in-patient EEG.
Her first EEG (45 minute outpatient) didn't go well because they strapped her to a board. In addition, she was hospitalized in a psych hospital for 48 hours in late August because behaviors were off the charts. Another horrible experience. My concern is her anxiety is going to be thru the roof. I need to keep her as calm as possible.
Does anyone have experience with this? What to expect? How to best help her?
The Queen is 6 now.
Thank you!
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Hey, if I am not too late to help, feel free to PM me. Been there, done that. No need for her to spazz over it. SHe can watch tv all day and eat popsicles. It doesn't hurt. It is mostly boring. It does look a bit freaky though so it would probably be helpful if you could keep her from looking at all the wires. They should wrap her head up in a turban after all the wires are on. Bring some ribbon, sparklies ect. . . to pretty up the turban if she will let you. Once again, mostly extremely boring.
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Thank you BestMomEver. We are actually at the hospital right now. I searched the hospital website and found that they have Child Life Specialist at the hospital a few days after I sent out this post. The Child Life Specialist has been fabulous. She gave me some great advice before we met and then she was here today to help with the Queen. In addition, the tech was Awesome. Very entertaining. She didn't freak out at all. In addition, the Special Ed Teacher at her school reached out to help. She wanted to work with the Queen about her emotions about this hospital stay. We even had a special lunch at school last Thursday (just the 3 of us) to discuss her feelings and check in. It was great. Yes, she was bored part of the time today but family and friends came for a visit which gave us a few hours of entertainment. The nurse witnessed a couple of focal seizures tonight. So, I am hoping that means they have the data they need and we can go home in the am. Thanks so much for getting back to me.
Thank you BestMomEver. We are actually at the hospital right now. I searched the hospital website and found that they have Child Life Specialist at the hospital a few days after I sent out this post. The Child Life Specialist has been fabulous. She gave me some great advice before we met and then she was here today to help with the Queen. In addition, the tech was Awesome. Very entertaining. She didn't freak out at all.
In addition, the Special Ed Teacher at her school reached out to help. She wanted to work with the Queen about her emotions about this hospital stay. We even had a special lunch at school last Thursday (just the 3 of us) to discuss her feelings and check in. It was great.
Yes, she was bored part of the time today but family and friends came for a visit which gave us a few hours of entertainment. The nurse witnessed a couple of focal seizures tonight. So, I am hoping that means they have the data they need and we can go home in the am.
Thanks so much for getting back to me.
If you are using a good children's hospital, the Child Life department can be very helpful. Often, it will have programs that allow the child to tour the hospital, view the area where the procedure will occur, see the outfits worn by the various categories of staff, and so on. The Child Life specialist assigned to you may also have other ideas for reducing severe anxiety.
Sharon