After an MRI and a two hour video EEG today, we are none the wiser as to why Evelyn appears to be having seizures, or “episodes”.
With that knowledge, we were granted gate leave in order to come home for the weekend. We need to follow up on Monday, when a new plan will be made, depending on what the Melbourne Children’s Hospital has to say. Unfortunately, they probably won’t have reviewed her information until later in the week, so backwards and forwards we go.
There is another attempt at a lumbar puncture in her future and goodness knows what else. I’ve just spent the last 20 minutes hashing together video footage of the episodes to send to the doctors, so that they’ve got more knowledge to work with.
She’s still having episodes on a regular basis, with the routine seeming to be that they’re more common shortly after a feed and as she falls asleep. Which is a good deal of the time, as she is still sleeping 22+ hours a day.
Strange baby.
No seizure activity was seen on her EEG, despite her having numerous twitchy episodes during the test – which had the benefit of allowing me to demonstrate her particular brand of limp and floppy to the technician performing it.
In any case, we have no idea what is going on and it seems, neither do her doctors.
Yet.
I so hope you get the answers you need next week..Wishing you a stress free (!!! :D) week end home with the family… ( never stress free with kids I know, but HEY it could happen !! ) My best to you and your family, honey…thinking of you all constantly…
Whoa. I’ve just caught up on reading your blog. What a ringer you guys are going through. My bub was in the children’s (Melb) last year having an array of tests initially with the neuro team. They are incredible there so it’s great to hear your docs are working with them. Huge hugs to you and I hope you are doing ok. Thinking of you and hoping you come out of this scary time with a simple and easy answer like we thankfully did,xo
Hey lovely, will continue to pop by to keep up to speed. Big hugs and love. Always in my thoughts. Unfortunately time and quickly rarely link together re consultation and liaison as you pointed out. My mantra that kept me going “no news is good news”. Please let me know if there is anything I can do from here. Sending healing vibes, strength and peace xxx
I’m glad you’re still reaching out on here. You’re all hanging in there so well. Sooner or later, the answers will have to start trickling in, surely. Still thinking of you, hoping for something good for all of you
Was she sleepy before she was born… could you tell? I’m sorry all this is going on. Wish I could send a baby prince to kiss your Sleeping Beauty and make her well…
Sending so much love. Now you’re home without the support or a plan and I know you are going to be feeling emotional and stressed and on high alert and down and feeling as though this is all so wrong that you can’t just enjoy your family. I hope someone can wrap you in love and look after you this weekend while you recoup and get ready for the next round.
Oh darling, really hope they are able to find some answers. You try to take it easy now you’re home. Be kind to yourself.
Lots of love xxx
Enjoy the home time.
Sending you much love and hopes for some rest.
Glad you get to be home for a little while my lovely… Xx
Sending so much love. So very much xxx
My brother, as a toddler and small child, used to have his seizures only as he was falling asleep too. He would drift off, have his seizure then relax into proper sleep. He would be fine during the day. His epilepsy only became more apparent when he was much older and driving. (Such things as sunlight flashing between roadside trees and those advertising signs that spun in the wind would set off an episode. These were probably the cause of his crashed motorbikes). He is 58 now and much more careful.
So many hugs for you all.
Hoping for answers for you all quickly. I believe there may be other things that can cause seizure activity but they need to look harder for them and also need to have an open mind to find them (this through family experiences). Sending lots of healing wishes and light Evelyn’s way and cyberhugs for you and Nathan. xxx
Really hope you get some answers soon! And that little Evelyn doesn’t have to go through too much more!
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