VEM This Monday

It seems like we've been waiting forever to have the 24-hour Video EEG Monitoring test done at Children's Hospital. I'd be lying if I said I was looking forward to Monday. What I'm looking forward to is getting the test over with. I've talked to several people who have either had the test done themselves or who had to take their kid in to have it done. Sounds like it is far from being a picnic but regardless, it is something that needs to be done and we'll deal with it the best we can.

The hospital called earlier today to confirm the appointment and to remind me that they would prefer her to be sleep deprived. Of course THEY would like that. They aren't the ones attempting to keep her up all night then dealing with her crankiness from the lack of sleep. I told the nurse that I would try, however the medication she is on makes her extremely drowsy. They would like Raquel to be asleep for a good portion of the EEG, and I really don't think that will be a problem if she's well rested going in because of her being on the meds. Food is provided (for her), but they recommend that I bring her usual snacks and some of her favorite items to play with so things stay as normal as possible. There will be a television in her room and I can bring some dvds to play in addition to that, but they really want her confined to her bed as much as possible and not wandering around.

A few of the reasons for doing this test are:

• to distinguish epileptic seizures from episodes that may mimic epileptic seizures;
• to characterize the type or types of seizures that a child is having, and
• to localize the part of the brain where the seizures are coming from.

In Raquel's case, her neurologist is not convinced she is having true seizures, but the in-home EEG we did awhile back showed that she was having abnormal brain discharges, particularly at night. These discharges were similar to Landau-Kleffner Syndrome, and the VEM will show whether or not she has this.

We should have some more insight early next week as to what is making Raquel tick. Hopefully it will show that she's not having any seizures at all and can be weaned off the medications completely. If it shows she does need to be on an anti-convulsant, we will pursue other meds that are more suitable for her so she can stop suffering from all the adverse side effects.