Aiden "Squishy" Ward

I am going to try to keep this as to the point and short as possible.. but wanted to give an update to everyone ;p

The apt went very good, I had been gearing up for weeks to fight, fight for Aiden not having to have a surgery or be hospitalized. To not feel like i was being pushed into something i didn't want to do... What actually happened was I told her about what had been happening lately, increased seizures and this time for no apparent reason. My biggest concern that although the seizures only last for less than a minute the post ictle (recovery after a seizure sp?) can last for hours and hours ending in lost development time and having to cancel therapies.

One of the options they had previously said they wanted to look at as an option was the VNS. Where they implant almost like a pace maker that attaches to the Vegas nerve that goes into the brain, sending electrical impulses to help with seizures. I was very against this option as what i knew of it was it included surgery, and there is little to no information as to if this helps children, let alone children with what Aiden has. To find out the surgery in adults is an outpatient surgery and not very invasive at all, and that they are using it on upwards of like 95% of their patients they see... So the question is, is it just a fad thing they are using for all epilepsy patients and what can it do for Aiden.. I still don't have a clear answer to this other than it in fact is not meant to be used as a single treatment but in addition to meds or diets ect ... it will most likely not wipe his seizures out completely but could make them less of a burden? the post ictle might be dramatically decreased, so instead of lasting hours it may only last 30 minutes. Having a seizure every other day it may help to decrease the frequency... it may not work for him at all. In that case he has a devise that has been implanted in his body that doesn't do anything and stays there..

Ketogenic Diet.. We do have a referral in place to go talk more with the dietitians that run the keto at OHSU, to get more information as to how it will look for Aiden. There is the possibility to start on the MAD (Modified Atkins Diet)  diet first and see how that goes and if we see an improvement and he does well on it to move to the straight keto diet.. and he doesn't necessarily have to have the feeding tube to be able to be put on the diet. Phewww ( ;p  but it is, and will be A LOT of work on our part. measuring every little thing that we feed him down to grams, having to limit lotions, wipes and everything we put in contact with his body.

So we have not made, or were not forced into making a decision at all. they are going to try to gather more information regarding the vns working on patients that are close in diagnosis or symptoms to Aiden.  And we will do a consultation to talk about the diet and go from there. My fear though in exhausting these options when we are only having a small amount of seizures (compared to what it could be) or waiting until it got worse to try them was listened to and their thought process is to hit it aggressively so that this very important developmental age can be utilized as much as possible and he is not having seizures and having periods where he sleeps so long after and misses out. I completely agree with that standpoint. To also be explained that although it is just 1 seizure or two, that the more seizures you have the more susceptible your brain is to having more.. its a vicious cycle. So for now we up his meds a little more and see if we can bide more time while we way our options on doing the other 2.

Whew ... out of my brain and onto paper!!  Its alot to think about and either way a big choice to make... but thank you to those that are pulling for us and listening to me ramble on about all this!!