To hell and back in just one day...

The internet is really a dangerous thing for me... almost as much as having a cousin who is a neurologist.

After being told Nathan was having tonics instead of complex partials, I began my quest for all the info I could find on them. I eventually landed at Lennox-Gestaut syndrome.

I found this info on a website:

What is Lennox-Gastaut Syndrome? Lennox-Gastaut syndrome is a severe form of epilepsy. Seizures usually begin before 4 years of age (Nathan was dx'd about 1 month before he turned 4). Seizure types, which vary among patients, include tonic (stiffening of the body, upward deviation of the eyes, dilation of the pupils (Nathan's eyes dilate during a sz), and altered respiratory patterns), atonic (brief loss of muscle tone and consciousness, causing abrupt falls), atypical absence (staring spells), and myoclonic (sudden muscle jerks). There may be periods of frequent seizures mixed with brief, relatively seizure-free periods. Most children with Lennox-Gastaut syndrome experience some degree of impaired intellectual functioning (yup) or information processing (this too), along with developmental delays (still yes), and behavioral disturbances (absolutely). Lennox-Gastaut syndrome can be caused by brain malformations, perinatal asphyxia, severe head injury, central nervous system infection and inherited degenerative or metabolic conditions (none of these fit for Nathan). In 30-35 percent of cases, no cause can be found.
Is there any treatment? Treatment for Lennox-Gastaut syndrome includes anti-epileptic medications such as valproate (what Nathan's on), lamotrigine, felbamate, or topiramate. There is usually no single antiepileptic medication that will control seizures. Children who improve initially may later show tolerance to a drug or have uncontrollable seizures.
What is the prognosis? The prognosis for individuals with Lennox-Gastaut syndrome varies. There is no cure for the disorder. Complete recovery, including freedom from seizures and normal development, is very unusual.

The web site went on to say that 50% of people dx'd with this syndrome are not able to live independently as adults.

I emailed my cousin and asked him if we were headed towardst his clinical dx since he'd been reclassified as having tonics instead of complex partials.

Charlie's response was, "at the beginning of this I told you I'd never sugar coat anything, and I won't do that now. I suspect this is where you're headed".

I think out of all the traumatic events of this past year and a half, yesterday was the most devastating for me. If I was not actively involved in something, I was sobbing. I give a rat's ass about what the neighbors think about Nathan, if they think he's the "weird kid" or if they look at me with a mix of pity/distain/relief that it's not their child going through this. I would give my life, my future, everything I could if it would just give Nathan the opportunity to fall in love, marry, have children and the ability support himself and his family. In all of this time, I've held on with white knuckles to the hope that this is short-term. Yesterday took every ounce of that away from me.

Thankfully I got the opportunity to discuss this with Nathan's epileptologist around 5pm. She's still not convinced his sz's are tonics. She believes they are complex partials that are just generalizing so quickly that they're appearing to be just primary generalized. What this means is that he does not have an EEG pattern that would put us on the path for Lennox-Gastaut syndrome. It DOES however mean a lot more testing. PET scans, SPECT scans, ictal spect and intra-ictal scans... and what I'm fearing the most is when they will put a grid actually on and in his brain that will map out where the sz's are originating. All of this will be to determine that place and if a resectioning surgery is possible.

I've been dead-set against surgery from the beginning. Yesterday put me in a place where I'm beginning to hope it's possible. Most people have significant improvements from surgery. Well... most people have significant improvements from AED's as well, so that means shit to me at this point.

But, as if we weren't being aggressive enough with his meds, we've stepped up his one med from 2.5 cc's 3x a day to 3.5 cc's 3x a day. When we gave him his first dose of it, he was all over the place, confused, irritable and just over-medicated (this was last night). But, today... I don't know, he had a pretty good day. Sz activity, yes, but no huge one's. Oh, and yesterday, he had his worst sz to date. It involved his leg as well, which that has NEVER happened before. But, interestingly enough, his left leg which goes to support the theory that his sz's are partials since his typical sz involves his left arm.

So, perhaps surgery will be his miracle. Perhaps I had to go through yesterday to be able to start walking the path towards it.