Michael and I are at a loss. Over the last few weeks we have noticed Bug's seizure activity changing. At first it was just like her partial onset seizures at night were going away and were being replaced with 1-3 atonic head drop seizures. Her upper body would just kind of collapse for a split second and then she would pop right back up. This is different from the myclonic spasms she was having a year ago where her arms would spread out wide and she would quickly bend down so we (her neuro, Michael and I) do not think it is epileptic spasms again which is good because those are so difficult to control.
When the atonic head drops started we weren't too super concerned because were confidant that raising the strength of her VNS pulses and changing the duty cycle, discussed in the previous post, would zap away those last few drop seizures. Well, changing the cycle has seemed to completely control the partial onset seizures (fingers crossed!) but now the atonic head drops are increasing and coming in clusters.
I've been keeping all of the notes in Bug's seizure journal as usual and I just don't know what to make of it. We started a medicine a few weeks ago to control excessive drool but the neuro doesn't think that would attribute to the increase of drops.
I had a sickening feeling that he is going to want an EEG soon and Rayleigh just does NOT do well with the sleep deprivation involved with an EEG and doesn't always nap once we get there for the appointment. But if it is necessary then we will do it!
We see the neuro this week and I am really hoping that he believes we can tweak the settings on the VNS and get these drops under better control. After a cluster of 3-5 drops within a 3 minute period Bug gets fussy. She sounds uncomfortable, not scared or hurt, but as a mom you still want to "fix" whatever is ailing your child.
I really hope we can fix this issue before it gets any worse. She is my angel, my world.
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Current meds:
Onfi 10mg, 1 pill, 3 times a day
Vimpat 50mg, 1/2 pill morning, 1 pill night
Banzel, 2ml twice a day
Kuspova (drool med), 2.5ml twice a day
VNS set at 1.25 out of 2 strength, on for 30 seconds every 3 minutes
Bug in Air
Sunday, March 10, 2013
Tuesday, March 5, 2013
1 Month & 10 Days
That's how long it has been since my last post. It totally feels like it has been much longer. I suppose that could tell you a little bit of how it has been this last month or so.
Rayleigh has been tolerating her VNS very well! Every 2 weeks we are seeing her neurologist to adjust the strength of her VNS. When I say strength, I am referring to how strong the pulses are. We are also to the point in the journey where you can start adjusting the duty cycle. The duty cycle is how long the VNS pulses and how long between the pulses. The starter point is: pulsing for 30 seconds then off for 5 minutes or more commonly spoken as 30 seconds of pulsing every 5 minutes. This is automatic and goes on and off by itself all the time.
Buggie is currently at a setting of 1.25 strength (out of 2.0) and her VNS is pulsing for 30 seconds every 3 minutes.
We decreased her off time to try and zap a few lingering myoclonic and tiny partial seizures that continue to happen during the day. Next week we will go up to 1.5 strength with the same timing. We will probably stay at the 1.5 setting for a little while because Bug has had such an improvement already and while we are at the 1.5 we can adjust the duty cycle. If seizure control is still not gained to a desired level (0-2 tiny seizures a week) then we can increase the strength.
So other than being a tad overwhelmed between the life of a special needs mom (meaning medicine, all night parties, pain management, doctor appointments and multiple therapies a week), and taking care of the husband and house and working my booty off on CutieBug party decorations everything is normal for us. I will be taking on more orders than usual with my Etsy business for a little while because we are trying to save up for a minivan with wheelchair ramp so if I am MIA from this blog you can find me on Facebook or text me if you know me personally and want Buggie updates :)
When I get past the crazy at-home work schedule I plan to do a few posts about the various special needs equipment we've tried/used/ordered.
Rayleigh has been tolerating her VNS very well! Every 2 weeks we are seeing her neurologist to adjust the strength of her VNS. When I say strength, I am referring to how strong the pulses are. We are also to the point in the journey where you can start adjusting the duty cycle. The duty cycle is how long the VNS pulses and how long between the pulses. The starter point is: pulsing for 30 seconds then off for 5 minutes or more commonly spoken as 30 seconds of pulsing every 5 minutes. This is automatic and goes on and off by itself all the time.
Buggie is currently at a setting of 1.25 strength (out of 2.0) and her VNS is pulsing for 30 seconds every 3 minutes.
We decreased her off time to try and zap a few lingering myoclonic and tiny partial seizures that continue to happen during the day. Next week we will go up to 1.5 strength with the same timing. We will probably stay at the 1.5 setting for a little while because Bug has had such an improvement already and while we are at the 1.5 we can adjust the duty cycle. If seizure control is still not gained to a desired level (0-2 tiny seizures a week) then we can increase the strength.
So other than being a tad overwhelmed between the life of a special needs mom (meaning medicine, all night parties, pain management, doctor appointments and multiple therapies a week), and taking care of the husband and house and working my booty off on CutieBug party decorations everything is normal for us. I will be taking on more orders than usual with my Etsy business for a little while because we are trying to save up for a minivan with wheelchair ramp so if I am MIA from this blog you can find me on Facebook or text me if you know me personally and want Buggie updates :)
When I get past the crazy at-home work schedule I plan to do a few posts about the various special needs equipment we've tried/used/ordered.
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