I could f'ing scream!!!!

So, how timely is THIS??? I was just doing some "research" on epilepsy... nothing in particular... just reading and looking for new info when I stumped onto some info/side effects of valproic acid (one of the meds Nathan is on). Guess what a common side effect is???? Freaking hair loss.

Thanks Dr. B. Thanks for telling me this upfront. Thanks for educating me on the meds you're forcing us to take and what to watch for. The ONLY reason she took Nathan off topamax is because I noticed he wasn't sweating and I knew, from research, that that is a side effect. Never did she ever tell me to watch out for it.

Nice. We trust these dr's and what happens???? I thought I was either going crazy or there was something really wrong with Nathan. Nope... it's just a common side effect.

Well, fuck me running. Thanks for the warning.

I HATE EPILEPSY!!!!!!!!

It's JUST hair...

I say that all the time, I said it when my sister lost her hair to chemo, I said it when I got 8" cut off. It's just hair, it will grow back.

But, the fact that Nathan's hair isn't "right" and hasn't been for a while bothers me... a lot.

I mentioned to one of his neuros a while back that his hair felt just odd to me, straw-like. He looked at me like I'd grown a 3rd head and said to switch shampoo's. Well, I may not be a dr, but damn it, I know my child. I know every inch on his body, every hair on his body. And when trileptal made him get very hairy - I mean hair on his legs like he was practically a teenager, I noticed it.

And when he went off the trileptal, I figured (correctly) that his body hair would go back to normal. So, don't tell me that meds aren't affecting his hair (on his head or otherwise). These meds they're forcing into him do very, very strange things to him and changing his hair is not out of the realm of possibilities.

Saturday we were at the pool. The weather was just perfect, low 80's but considering the 100* weather we'd been having and then a huge storm, the pool was a bit chilly. So, after swimming a bit, Nathan got out and sat on the lounge chair with me, rather laid on ME on the lounge chair. So, I began stroking his head and really examining the straw-like patches, mostly in the back of his head. Then, I noticed just how THIN it is, mostly on the top of his head. I mean really, really thin. In some places his hair will naturally part and you can see his scalp without moving hair out of the way.

Nathan's always had gorgeous, really blond, slightly wavy, thick hair. I guess what bothers me about his hair falling out is that if it continues, he will really have an outward indicator that something is going wrong in his body (as if the huge scars on his neck and chest weren't enough). But, our goal is no meds. We did the surgery and we're continuing with the diet and now seeing this naturopath to heal his body so that one day we can be free of these poisons, I mean medications we're forcing him to take. I can only hope that these recent changes in his hair are just another freak side-effect of meds that will go away in time.

Because, after all, it's just hair, right?

Boys will be boys

Nathan sat on the couch tonight, in between my step-son (who is 9 1/2 and the neighbor boy who is also about 9 1/2). The two boys were playing PS2, some car racing game. Actually, they spent more time designing the car than they did actually racing... but anyway... in the middle of all this, Nathan walked over to the couch and climbed up to sit right in the middle of them.

He didn't say much at all, he didn't really DO much at all... but he was there, soaking it up, just being a "boy".

I was over the moon.

How 'bout them apples?

We had Nathan at the neuro the other day to check on his VNS and then increase the setting. Nathan was having a particularly lucid afternoon. Sitting in the room was dh, Nathan, Dr B, and two med students. While Dr. B and dh were talking, Nathan started counting all the people in the room, ending with himself and then said, "5, there are 5 in here". (that got everyone's attention). So, then dh said, "how many girls and how many boys?". Without skipping a beat, Nathan said, "2 girls, 3 boys". So, then Dr. B gets into the game and says, "Nathan, if you have 2 apples and I give you 2 more apples, how many..."

And before she could finish, Nathan jumps in with, "I would EAT them!!!!".

Dh gently reminds Dr. B that perhaps she should try using celery sticks instead as apples are not allowed on the modified atkins diet.

I love that kid.

How it began...

June 10th, 2005. The day our world changed and Nathan's battle began. How naive I was then. I thought that "epilepsy" was something like an ear infection. The neurologist made it sound so simple. Take this medicine, the seizure's stop and in two years you wean off the meds and most kids never have another seizure again.

Perhaps she should have told me that Nathan's seizures - complex partials - are notorious for being the hardest to control. Perhaps it would have brought me to reality a bit sooner. Perhaps we would have been a bit more aggressive with his meds or getting appointments sooner.

We realized after about 2 months that his first med, trileptal, wasn't doing anything for his seizures and not only that, but they were increasing in frequency. I should back up... I noticed Nathan doing something "weird" one day, he was spinning in a circle with a blank look on his face. How odd I thought. Then I saw him do it again a few weeks later. Garry had never seen him to anything like that. My radar was up at this point. Around this time, we noticed him throwing his arm back and sometimes it was just like his arm was just sort of jerking around, out of control. Weird. We just thought it was weird but didn't think further about it.

Then one day, he spun around in that weird circle twice and his arm was going practically all day long. I put the kids down for their nap and searched the internet and scared the shit out of myself. I spent that next week going to the ER, several ped's, talking to MY neurologist (for headaches) on the phone, consulting with our cousin who is a neurologist, finally getting in to see a ped neurologist and then the sleep deprived EEG -- so, now we're at June 10th. And I still remember sitting on the floor of the neuro's office, trying to play with Nathan to keep him occupied and the dr was just so flip about it -- oh yeah, it's definitely seizures. Complex partial seizures. "Epilepsy". I thought of that word when I thought of things like, Muscular Dystrophy, Cerebral Palsy -- big, devastating diagnoses that you never quite know a lot about, but "bad" to have.

But... not for us. Just take this pill and in 2 years, wean and he'll never have another seizure again.

Until you realize that med isn't working. So, you add another. And then your child goes from having typical 3 year old tantrums to literally throwing things at your head and having uncontrolled rages. So, you get off that med and you try a 3rd. And that one doesn't work. So you try a combo of the 3rd and the 1st. And that doesn't work. So you try your 4th and you're now taking 3 meds. Only those don't work either. So you drop the 1st and add your 5th one in. And that's not quite getting it either. But you now know that once 3 meds have failed (and we're on #5 failing) the chances of any others working are between 1 and 5%. We were watching our child slip right through our fingers and nothing was working.

Nathan lost so many skills. It was unbelieveable. He used to be able to spell both his first and last name, tell you his address and phone number and his age. He can only count to 13 now and words he used to know just didn't register anymore. And in trade, he gained quite a few sensory issues. Nice trade huh? He is 5 years old, yet functioning as if he just turned 3.

What do you do??? Panic, overwhelming panic sets in. Who is going to help and can they see him RIGHT NOW???? It's always on my mind. Whether in the forefront or in the back... he's never gone. His battle is never out of mind thoughts.

We got to the point where we had no more options. Nathan is now seeing a pediatric epileptologist - this is a neurologist who specializes in epilepsy in children. The best of the best. But, still, she had no magic wand to wave over our head when she'd decided we'd suffered enough. The day she told me she felt like she'd failed Nathan was one of MY lowest points. My God. Where do we go from here when the specialist is telling us she feels defeated???

Enter the modified Atkins diet. Modified because adults doing this diet for weight loss start out with 20 carbs a day for 2 weeks then go up to 30, 40, 50 or more carbs per day. Nathan is and will probably always be at 10 carbs per day. Folks, that's NOTHING. His diet consists of eggs, cheese, meat - any kind he wants, sunflower seeds, a bit of salad and an occasional 1/4 cup of strawberries. I am diligent in searching the internet for recipies and have found a few good ones. The low-carb pizza is actually really good.

We started this diet in April 06. One week went by - nothing. A few more days and I'm beginning to panic. Nothing. We were torturing our son who LOVED noodles and cereal for nothing. A few more days, that was all I was going to give it.

And then.... something. OR should I say nothing - as in no seizure activity, or at least a fairly good reduction in it. Finally. FINALLY!!! After almost a year we were finally seeing something help. Until the day he climbed up 5 shelves in the pantry to get to the pancake syrup and drank it. He had a pretty significant seizure a few hours later. Which, actually was "good" news. Now we knew for sure that sugar was a very high trigger for him. Oh how our pantry has changed these last few months!

But, still 3 meds and a hard-core diet and we were still seeing seizure activity. Add to that we were entering summer and I noticed Nathan was not sweating - at all - when outside. Hmmm, turns out a side effect of one of his meds is that you do not sweat. Great. So, the weaning of that med began -- but without an increase in sz activity. Thank the LORD!!!!

Next came the VNS surgery. VNS is short for Vagus Nerve Stimulator. It's implanted in the left side of his chest and runs up his neck to his Vagus nerve. It emits a charge every 1.1 minutes for 7 seconds. It doesn't hurt him, but his voice gets soft and sort of vibrates when it's discharging. But, thank God it doesn't really bother him. And, basically it's like a pacemaker for his brain. The idea is that it will regulate the electrical activity in his brain by emitting an electrical charge because all a sz is really is just electrical activity gone out of control.

We're 3 weeks into that and seeing even more seizure control. Nathan is gaining words back and just this weekend has been telling us his last name again. His short term memory is starting to come back. He's got more energy and isn't always on the verge of a tantrum.

Don't misunderstand me. We've got a long road ahead of us to get him back to where he is supposed to be. But... he's beginning to win.