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Wednesday, April 13, 2011

Vegus Anyone?

Vegus anyone?

As in Vegus Nerve Stimulator, also referred to as VNS therapy.

Last week we went to Keto clinic for a check up at PCH and saw our Phoenix neurologist. I never know what to expect going there. I don't dread it like I do our Tucson neuro. I think I see one as a source of maintenance and one as a source of hope.

Just a side note about PCH - it's another world of which I am a member of. When we were done with our appointment, Christian needed to eat and instead of making him endure the discomfort of the car seat and eating at the same time AND the Phoenix heat, we decided to sit down at the mini cafe in the lobby. Back and forth were other hurt little kids, just like Christian. Little girls with bald heads from chemo, parents chasing after them, a mom asking what kind of backpack we had for Christian's feeding pump and then commenting that she liked it and had the same pump. All as if we were talking about what kind of shoes I had bought him - just common place stuff. It was heartbreaking and comforting at the same time.

Back to the appointment...did I mention I really like our Phoenix neuro? Anyway, we discussed Christian's recent progress. I told her it had actually been really hard to gauge due to him having back to back illnesses - an upper respiratory infection/flu and then a cold. Of course, that has increased the funky things in Christian's brain that put it into overdrive.

The doctor was frank but I listened, intently, to every word. To summarize, she said although the keto diet has helped, it has not been the "magic bullet" we need. And we cannot accept this as Christian's normal yet. We have to try and do more. I was so grateful for this because it was a doctor respecting how we felt about medication (which she agrees with, seeing as how Christian hasn't responded, and if so, has responded negatively) but offering her opinion. I think a lot of times doctors are afraid or reluctant to offer anything to assertive parents out of fear that we'll shoot them down. And some parents do. And just because a doctor offers an opinion doesn't mean I'll take it. But I still wanna hear it!

The procedure involves a small surgery and implanting a device under the skin that threads up through the vegal nerve, which connects to the brain. (Please excuse me if I'm not 100% accurate, I'm still a novice). Every time a seizure comes on, the device is programmed by a wand-like instrument and sends a pulse to the brain to stop the seizure. Yes, I said wand-like. If we decide to do this my boy will be a bionical Harry Potter waving his wand to cast spells against those evil seizures. Be gone, seizures!

The doctor also went on to say that even if the VNS doesn't offer seizure control it has been shown to improve quality of life, memory, and alertness. I'll take all of the above, please.

She suggested we do it and do it soon. In fact, that we do it by the next time we see her in three months.

We're heavily considering it. We've gone natural. We've done medication. We're doing (and will continue to do for now) the diet. But Christian deserves more.

We're researching, asking around, and, in fact, I'm in contact with someone locally that has had great success with her son after he didn't respond to medication or the keto diet.

So we're be continued...


WhitneyBooze said...

big decisions on the horizon for your sweet boy -
I will pray that you find the answer you need in the next couple of months.
I don't have much to offer; yet I do have 2 moms in my support group that swear by the vns for their children.....
So glad you have a neuro that you like.
And I love the pic of Christian snuggled up in the towel after the tub.
Hugs to YOU!!!!

Jen said...

How exciting, and scary! Thinking of you as you make your decision.

Magic Bullet...yes please, I'll have 2, or 4, or 10 :o)

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