Friday, August 14, 2015

A day in the life...

I have been thinking about whether or not I should even write this. I have decided to share a video with you. It is rather long. It may disturb some of you. It may make you sad. But I am not sharing this for pity or anything else. I am sharing this because I want people to see what we deal with sometimes. We also know that others have it WAY worse then us. I already think that we have to deal with this more then I would like, and I could not imagine seeing this every day, or several times a day.
This is a seizure.
This is the first time I have not been thrown into full panic mode.
This is his 8th one, ever(I think).
We have nursing care in our home that can help watch for any after effects.
We have doctors orders that say we can keep him at home unless A, B, or C happen.
This is the first time we have ever gotten the whole thing on video.
Yes, his doctors and nurses have looked at it and made suggestions on ways to improve, so please, no rude comments.
(This one happened right as he was waking up for the day. We took the blanket off because he hot. We were told that next time we should leave his shirt up too, so we can see how he is breathing.)
I hope you never have to deal with anything like this. I hope if you do deal with seizures, that you find some way to help them stop. These are NOT fun. We are very lucky to have the rescue medicine because it brings him out fairly quickly and is easy to give. If you would like more info about seizures please click HERE.
Friday April 25th 2014 was his first one ever! That was the hardest one to see because he was not on any medication and we didn't have any rescue meds to help it stop. That day we were forced to pause. That was one of many hard days that we have had to deal with. That day landed us in the hospital, as did most of his other seizures. 
We have been told that he gets seizures because his brain is not normal. It's because of the Hydrocephalus. This is probably the case and we may deal with this for the rest of his life. Not everyone with hydrocephalus has seizures though. Not all of the other boys that have the same genetic disorder as our son, have to deal with seizures. And people with "normal" brains sometimes have to deal with this. Basically seizures can affect anyone and the doctors end up learning more from the patients then they do in school.

Hopefully you don't have to deal with this, but if you do, please share your story with me. How often does you or your child have them? What do you do to stop them? What are your thoughts on cannabis treatments?
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  1. I'm sorry your little guys goes through this. My daughter Bethany has suffered with uncontrolled seizures since 2000. She had a brain tumor at age 2 that caused hydrocephalus and then acquired a TBI and a had a stroke during the surgery, which is what actually started her descent into seizures. She has grand mals, simple partials, complex partials and absence seizures and they always come in weekly clusters. She's never had one more than 5 minutes long, but she needs diastat to stop the clusters or they come one right after the other. Thank you for sharing your story at Faith, Hope, and Love. I hope your precious little man never has another seizure ever again!

    1. Yea, I hope so too... but it is not likely. I have been following your story for a while now Sylvia. :) I wish our kids didn't have to go through this. Thanks for letting me share our story!

  2. Hi! My daughter has congenital hydrocephalus of unknown cause, her ventricles communicate. She's had four revisions, her pressure has changed a lot. Don't know what the surgeon will replace her system with next as she is close to the top of her codman, it's in series with a low flow valve so her approx pressure is something crazy like 29cm. She'll be nine in some months. She has focal seizures that have not fully responded to medication, just simple and complex partials, no secondary generalizations so far. We figured she was having seizures by nov '12 but looking back was having them in the previous year. She was formally diagnosed in may '13 - turns out a lot of things she complained about daily were simple partials. So the recorded number should be close to 200, but down to one a week or so. The first neuro and I expected these were due to the hydrocephalus and my expectation is that these are probably lifelong. There are no outward signs with the simple partials and most people miss the complex ones where she stops and stares (for up to few minutes) and she can be fuzzy and lose memory of half a day in postictal period. MJ is legal in our state and many parents are trying it. I'm not at that point but I can understand going there. The generic keppra we started in order to get off the lamotrigine (which she is just under toxic levels for her) was horrible. Already take more than max of trileptal.

    Something like 20-30% of kids with hydro have seizures but that is across all kinds of hydro - some kids have a much higher chance of seizures than the 20-30% figure implies, some have much smaller chance depending on cause/circumstances of the hydrocephalus.

    Take care