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| Post EEG hair :-) I couldn't help myself. |
What would you do if you knew that you had seen seizure activity in your child but all the tests kept coming back normal? When seizures are left untreated they can be very debilitating to the person having them and sometimes even damaging to the brain. Recently Justin and I have seen what we are sure is some sort of seizure in Emma. We've seen it 4 times now, so I called her neurologist who scheduled an EEG (electroencephalogram). It was her 4th EEG and the other 3 have all come back normal, but still no one is convinced. It is tricky business catching a seizure, because unless she is seizing during the EEG you generally don't see much. This time they asked for a sleep deprived EEG. She was to miss 4-6 hours of sleep in a 24 hour period. This is quite a feat for an 18 month old. Well, as of yesterday it had been 5 days and we hadn't heard any results. Turns out the test was no where to be found.....seriously!? So after spending 3 hours on the phone with 2 hospitals and 1 clinic I was finally able to get the test to neurology. It hadn't even been read yet. Within 20 minutes the neurologist (Dr.Collins) called me to say that the test was abnormal. I cried, mostly happy tears, because they finally saw something and seemed to be taking it seriously. She explained that the test didn't show any actual seizures, it showed lots of abnormal electrical activity in her brain and that, along with our descriptions is enough to make her think that Emma is having seizures. The trick is properly treating them when we don't know exactly what type of seizures they are. So, the next step is a 24 hour video EEG, which will be done next week.
On February 19th we head to Denver for the 24 hour EEG and another ERG (electroretinography) as requested by the genetics team. An ERG is an extensive eye exam that will require general anesthesia, specifically they are looking for abnormal function of the retina. During this trip we will also be seeing a gastroenterologist, a dietician, and of course neurology. So, please keep us in your thoughts and prayers as next week will be a long one.
To end on a happy note....
Last Thursday we saw the orthopaedic surgeon who informed us that Emma's hips are finally in place and the sockets are forming. Yay!!! At the last appointment there was talk of extensive surgery because they didn't seem to be improving much, but it turns out all the crazy brace and harness wearing has finally paid off and her hips are well on their way. She will only have to wear her rhino brace at night now. GO EMMA!
