Life with Allison

Our family's journey with a special needs child

Options, options….PLAN!

on June 21, 2013

I’m reading someone’s blog tonight (oh yeah, I chuckle at the irony here), and am looking forward to Ally’s service dog more than ever! Service dog you say? Yep! Let me catch you up to speed.

Two years ago, our neurologist suggested some options for Ally since her seizures couldn’t be controlled. We had been through about every medicine available for her age and types of seizures. First up was the Ketogenic diet. I flat out refused. It may seem harsh, but it wasn’t arbitrary. Its a strict diet. Problem is, Ally wouldn’t eat most of the stuff allowed and some of her favorite foods that she would eat, weren’t allowed. There’s no taking a ‘cheat’ day with this diet either. We were told she would have to be hospitalized a few days to start the diet to make sure she adjusted. There’s a whole lot involved and if you want to know more about it, I suggest you Google it. All I could think was this is one nasty diet to have to be hospitalized just to start. Her chances of it helping….50%! THATS IT! 50/50 didn’t cut it for me and I said we were moving on.

Idea #2 VNS
Stands for Vagus Nerve Stimulator. Does exactly as it sounds, stimulates the vagus nerve. Whats that mean?? There are 2 vagus nerves that stem down from the brain, one on each side of the spinal cord. Ally would have a surgery to wrap a wire around the left nerve and a battery pack (similar to a pacemaker pack) inserted in the upper chest nearby. The VNS would automatically turn on, usually every 5 minutes for 30 seconds at a time to stimulate the brain. The point is the stimulation helps break up any electrical irregularity in the brain which cause seizures. Sounds good, but there are issues with it like everything else. First, its less effective on a child than an adult. Reason: these nerves mature as the person matures. Basically it means that the nerve can grow around the wires, making it near impossible to remove the wire at any point and not cause damage to the nerve….and this nerve is a really big deal for your body! Also, problems with implanting this on children is the wires can be too loose and then it doesn’t do anything. There were so many if’s about it (and only another 50/50) that it also wasn’t worth the risk.

***I am very happy for anyone who has one and has had great success with it! It was one option I WAS for trying, before we started researching the dog.

Idea turned plan #3 Service Dog
A dog? To stop seizures? Well, no. Of course not. That would be ridiculous. But service animals are trained for so much these days! Everyone knows of the police dogs, search and rescue, therapy dogs….but a seizure dog? That’s where 4 Paws for Ability comes in. We really hunted on where to get a dog for Allison. Believe me, its hard. Most places say no, because she isn’t old enough (some want her to be 8 and some want her to be at least 12). Some places turned us away saying it couldn’t be done without her participation….and that’s going to be minimal right now. She won’t be able to command it, she hardly speaks now. So 4 Paws told us ‘no problem’. We spent about 8 months raising $13,000 as a fundraising requirement to 4 Paws. We finished it last September!!! Let me say, the excitement I felt when I got the email saying we were in August 2013 class….its unexplainable! We had put so much into it. It gave us hope!

Now, its only 6 weeks away before we leave for training. Oh, since I didn’t mention before what our dog will be trained to do, let tell you now. He/She will be trained to bark when Ally is having a drop seizure, hopefully alert before but that is a natural instinct that can be encouraged but not trained to do. The dog will help her balance when unsteady, track her if she runs off, they will be tethered together to help keep her safely close out in public, and try to distract her when she is behaving in a manner that is unwanted, such as a meltdown.

Fancy dog, huh?! August, you can’t get here fast enough!! 🙂

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One response to “Options, options….PLAN!

  1. Jessica N and Makiko says:

    I am so excited for your precious girl and family. The dog will do so much for her in the way you described and more. The companionship and bond does wonders alone. I can’t wait to hear more.

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