I can't breathe...

I'm scared to death of jinxing our streak. Any time I comment on how long it's been since Nathan's had a sz, he invariably has one.

We're going on 3 days now. Nathan's teacher wanted to know what we'd done differently on Wednesday afternoon when G picked him up from school because that was 2 days in a row where he'd had excellent days. Today was more of that. I wanted to say to him, "I'm glad you've finally gotten to meet the real Nathan". (well I would have had I been the one to pick him up, lol).

My mom was floored last night when we stopped by her house. He was talking to her, responding to questions, following directions, being polite... she even commented on how he seems to be walking differently - very subtle difference but more "normal".

Lately though, he's been volunteering to take naps - like twice a day. He's doing that at school and thankfully they're letting him - when it appears that he's truly not tired and not using laying down as an avoidance tactic, because he will do that. His meds certainly can make him sleepy.

But, Monday night we started a new supplement. This one is specifically to deal with anxiety, moods, concentration, memory... those kinds of things. I really love Nathan's chiropractor. He doesn't do adjustments on him, he's really just guiding us in homeopathic remedies and doing slight energy work on him. When I walk into his office, I just have a peaceful feeling come over me. Monday night at our appt, he said, "I won't lose", meaning he would figure out something that would help us gain control of his sz's. He's always got Nathan on his mind and each time we talk, he's telling me about something he researched or read or thought about that might be good for him. I wish all dr's were like Dr. F. I'm going to start seeing him for my own health. My first appt is next Monday.

Dr B today said she'd like to hear a report from us in 2 weeks. If we keep this trend up, then she's going to seriously consider cancelling or at least post-poning this latest round of testing. I wouldn't mind that at all.

This is the first time in 15 months that something is profoundly different. Yes, we've had minor successes along the way, but every time we've hit the end of the honeymoon phase, all hell breaks loose again.

On the one hand, I want to celebrate this miracle. On the other hand, the devastation that will come should a sz occur if I've gotten too excited or overly confident will crush us.

So, I'm just taking it hour by hour and day by day. Today, I am profoundly grateful for yesterday. Tomorrow I will be profoundly grateful for today. I'll talk about next week, next week.

Faith...

I found out today that an old friend of mine from years ago in Nashville is terribly sick. She has some illness related to when she contracted meningitis. She and her husband have moved back to VA so that they can have help raising their two daughters.

When I heard Michelle was ill, my first thought was, "My God, how will she raise her two girls?". As it is right now she can not even care for herself. I have often said I would take Nathan's sz's from him if I could. I would take them on without hesitation. My greatest wish is that he would grow up, fall in love, raise a family and lead an independent life. I would give up my future for him to have one.

I have been battling with my faith a LOT lately. I have trouble trusting a God that allows my child to suffer. And, I am trying to listen to the wisdom of my Christian friends and find peace. I'm trying to find the good in Nathan's situation.

Perhaps the one thing I have (or have left) is the ability to care for him. I can't fix him, but I can comfort him when he's hurting or sick or angry. I can calm him down like no one else can - not Garry, not my mom, not anyone else. When he is in the midst of a tantrum, I can bring him down.

When he is exhausted from sz's or hurting after surgery or scared beyond his wits from having 22 electroded glued to his head, only I can sing, "A Bushel and a Peck" to him and he'll stop crying -- and only during those times. It doesn't work on just a random day - which after considering that, I think that's a gift. How absolutely wonderful that I have a tool so accessible??? wow. that just occurred to me right now.

I have been praying a lot for faith lately. I don't have any faith left in me. Well, maybe an ounce left because if I didn't, I wouldn't be praying at all, right? I guess I should be grateful - not that it's Nathan who has sz's and not me - but grateful that I can still care for my children, all 4 of them. How would we survive if I wasn't able to work? Garry stays at home. And, though Emily, Colby and Avery don't have the kind of needs Nathan does, their needs are still 100% important to them. If they fall down and scrape a knee, they need hugs and kisses too. Emily still wants her back scratched every night. That's important to her. And it's important to me that I am able to do that for her.

So, I guess I'm trying to find good where ever I can. I still struggle with why this had to happen at all. Why we can't find something to fix him. I will always struggle with that. But, I guess maybe also God knew I could somehow find a way to handle the pain of watching my child suffer from an illness but I could not handle the pain of watching my child suffer from even a scraped knee and not being able to comfort him.

Perhaps I have more faith than I thought.

What's next???

Well, today Nathan had his most significant seizure to date. He woke up this morning and before even getting out of bed had a sz that knocked him out. After sleeping it off, he went to school where he had a sz that lasted for close to 2 minutes (they're usually 5-10 seconds). Swiping him didn't do anything. He passed out again for about 2 hours. After waking, he had another and passed out again.

I paged the dr when I found this all out. We're increasing the felbatol (felbamate) but also Dr. B said that she presented him in conference today as a surgical candidate. Some of the dr's are still convinced they're primary generalized sz's but others still think they're complex partials that secondary generalize almost immediately. We will go back in the hospital for another 3 days (or so they always say) to do another VEEG as well as an ictal spect -- they inject some dye into him during a sz to track it in his brain. Who knows how long that will take. Hopefully not 3 days though.

So, then based on those results, we may be heading back in. If/when we do, it will be to place a grid actually on and in his brain. This will further show where sz's are originating. If they can pinpoint the origin, they will go in during that stay and do the resection surgery. This could possibly happen a month after the ictal spect hospital stay.

If he is not a candidate for a resection surgery, we either go to the Cleveland Clinic for a second opinion (and another week's worth of testing) or we go to a corpus collosotomy -- where they severe the connection between the two hemisphere's in an attempt to stop the generalization and salvage at least 1/2 of his brain.

I can't fucking believe I'm typing the words out that I am. I can't believe this is happening to my baby. Why isn't anything working?

Here we go again...

We're giving up on valproic acid. Im glad. It's not working, why keep it up? I feel the same way about the diet too but I somehow can't fully let go of that yet. Dr. B said that reading his EEG, she couldn't go 10 seconds without seeing some type of erratic brain waves. Not to say all of those are sz's but erratic brain waves can't be good for Nathan either.

We tried taking the V.P. up. One day was good, another was bad, another was so-so. But his behavior got really bad and his interest in potty training has gone WAY down. We had an episode of poop-smearing tonight as well. We haven't had one of those in weeks and weeks.

So, felbatol is it. This is it. This is the drug we've tried and tried to stay away from. This is the drug that most pharmacies do not carry (you have to order it) because it's just not a common med and it's got a really bad rap. It can cause liver failure and aplastic anemia (where your red blood cell count drops down to a very dangerous level). But, V.P. can cause liver damage too and he's not shown signs of that at all. Also, Dr. B feels that most of the patients that fall into that category have other health issues that put them at risk for dangerous side effects -- which Nathan does not have.

This is also a drug though that has been shown to work when all others fail. And, monkeys might fly out my ass. But, hey, why not try it?

If this one doesn't work, we are back to lots and lots of testing. Since Dr. B still feels as though his sz's are complex partials and his focus is in his frontal lobe, he's still a candidate for a resection -- removing the portion of his brain where the sz's are originating. The extensive testing would be to try to find that place. Without having a lesion or some abnormallity there, the chance of stopping the sz's is maybe 50% or less. I don't like those odds. However, there maybe an abnormality that the MRI isn't showing either. And, as far as odds go, we've got about a 5% chance that felbatol is going to work. 5% is better than a 0%, right?

Garry's really at his wits end. He has no patience with Nathan. I find it hard to have patience as well, but I just keep reminding myself that his behavior isn't becuase he's a bad kid or to piss me off. But, it moves me farther and farther away from him when he reacts to Nathan with no compassion.

My friend who is watching the kids next week is very very spiritual. Very much a born-again Christian. She's not the kind to shove it down your throat or try to convert you or anything like that. She's going to need every bit of her faith and prayers to get her through the week. Honestly, I've never dreaded a vacation so much in my entire life. I hope to God Nathan behaves for her, takes his meds, doesn't smear his poop or bite one of her kids. And, God willing, I will be able to relax... or I'll be so drunk I'll pass out, and then relax.

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.