For us too get to Children's hospital it takes 6 or more hours depending on how long the wait is for the ferry. We usually leave the day before our appointments and return the day following our appointments and add some fun into our time away. Our son has extreme anxiety and was terrified about the idea of going to the hospital yet again. We are fortunate that so far none of the testing has been invasive however in the past we did have one traumatic day when they were trying to do blood work on all 7 young screaming children and couldn't get veins in any of them which resulted in them giving up and having to try a different day. This event has scarred our extremely anxious son and no amount of preparation seems to relieve his fears. We tried social stories, talking about what was going to happen on our visit, talking about why he was scared, we tried focusing on more enjoyable activities while away however nonething seemed to help him even combined with his on going anxiety medication. Do you have any tips on reducing a child's anxiety?
While on the ferry we listened to presentations by the Naturalists they had on board which was a nice diversion for the kids. The presentation went well with our planned afternoon activity of visiting the "aquarium". The last few visits to the aquarium it has been extremely busy but this time was great as the crowds were small. The kids loved the dolphin show and we were fortunate that the staff recognized the fact that a couple of the kids were in wheelchairs and provided us with exceptional seats. One daughter was truly amazed and squealed with joy every time the dolpin jumped. From the aquarium we set off to our hotel and spent the evening in the swimming pool. This long day with different activites was very beneficial in keeping the kids awake as they needed to be sleep deprived for their testing at the hospital and were only allowed 5 hours of sleep.
At the hospital 3 had sedated sleep EEG's and the good news is 2 actually showed seizure activity. The kids have seizures regularly and every time they have had an EEG nothing has shown even though doctors have witnessed them having seizures, so seeing the activity on the EEG is apparently a good thing. Our 5 year old had a lot of difficutly waking up from the sedation and could not sit or stand unassisted until the next morning. We then met with the neurology and genetics doctors were they decided more testing is in order.....looks like MRI's, spinal taps and cardiology are int the childrens future.
