Little Darlin', It's Been a Long, Cold, Lonely Winter...

I think spring is finally here.

Benjy found some crocuses in our yard last week. Brave little pale-purple blossoms, poked out of the cold ground. That was one thing.

We have been waking to bird-song. That is another.

The sun is beaming today, a great big solar grin. That makes for a good day around here.

I hope the winter is behind us. That was a bad winter for this boy and his mother. A winter of hospitals and scary medical tests and scary symptoms like memory loss and loss of things he once knew. Things he learned in kindergarten.

That was a winter of other losses. Losses of friends and bodily control and dignity.

It was also a winter of gains, but not good ones. Weight gain, for example (hello, Abilify!).

But the sun is here, and so is a new medication, Lamictal, that seems to help. He has not developed a fatal rash, and he has not succumbed to despair. We've seen no mania in the past couple of weeks. Overall, he seems brighter. Like the enormous weight he has carried on his back for so many years has lightened just a bit.

He still has his obsessions. Right now it's tennis and basketball. That alone is something to celebrate: it's not video games, not guns, not paintball or bows and arrows.

The sun is coming, but it's not all better. His memory does not really work. In the space of two hours he completely forgot an encounter he had with the school nurse last week, which included a physical exam. Two hours later he simply could not recall meeting with her, in spite of the fact that they conversed about which ankle was giving him trouble and the bite marks on his lip.

He is still having urinary accidents. (We have an appointment with urology next week.)

According to his recent neuropsychological evaluation he has lost skills, lost knowledge. His functionality is not terribly good.

Right now, the primary task at hand is to determine whether the mild psychotic symptoms he's having are secondary to bipolar disorder (yes, severe depression can cause psychosis) or a primary psychiatric illness (as in, early stages of schizophrenia). We are hoping beyond hope it's the former. That would be the less shitty of the two options.

Oh, and his neurologist is still on the case. Just in case there is some rare neurological issue she's overlooked. (I guess that memory loss last week freaked her out. I know it freaked me out.) So next week she is presenting him at some sort of conference of all her neurology colleagues at MGH. I'll have to trot him out to be poked and prodded (metaphorically, at least) in front of the whole department, and then they will discuss the case (without us present, thank goodness!).

I know this will be a hard thing for him. I only agreed to it because we are desperate for answers, and this seems the best way to get some. If the doctors at Mass General can't figure this out, then who the hell can?

So there it is. I'm trying to hang onto the good stuff. He's happier than I've seen him in a long while. I think the new med is going to help, and he's getting a dose increase tomorrow.

Little Darlin', here comes the sun.

Are You Feeling Brave?

Of course you are -- you stopped by my blog!

I owe you an update, so here it is:

1. All neuro/medical tests (i.e. MRI, EEG, extensive bloodwork) came back normal.

2. In theory, we celebrated. In praxis, not so much. Because we continue to teeter on the edge of the abyss -- and we continue to wait for an answer. We are dumb or naive enough to keep expecting one.

3. I researched prion diseases at the macabre (but well-intentioned) suggestion of a friend. This led to alternating periods of evil dreams and wakefulness. All. Night. Long. (If you were very, very brave, Readers, you could Google prion diseases too. The worst of the lot are Kuru and Fatal Familial Insomnia, and if you read about them you would be up all night worrying you have the latter -- and being thankful you are not a cannibal so you can't get the former. These are the stuff of nightmares.)

4. Benjy's neurologist promised me he does not have Creutzfeldt-Jakob disease (I guess, given the other members of the family, you would have to call that the "good" prion disease), and proceeded to hand us off to psychiatry. It kind of felt like coming home -- in a pathetic sort of way.

5. Benjy's mental state has become such a wide, dark sea of sorrow that I fear, every day, he will slip under and I won't be able to pull him back up. I realized the other day that a sadness like this is not sustainable over a lifetime. And once again I am afraid we will not get to keep him if we can't figure this goddamn illness out.

6. The new psychiatrist prescribed a drug called Lamictal to address the bipolar disorder, particularly the overweening depression. She said, "A lot of people do well on this drug. There's only one downside: it can give you a rash. But this is not just any rash -- this rash can kill you."

7. Shit.

8.  I Googled Stevens-Johnson Syndrome (that's what a rash is called when it's a killer rash).

9. SHIT. (Warning: Wikipedia includes photos, which you do NOT want to look at. Trust me.)

10.  I slouched around and practiced avoidance for five days. Then I called Ben's PCP, who has been doctor to both my kids since babyhood. I figured she could help me decide which crappy path to take: Should I treat the depression that could kill him with a drug that could kill him? Or should I not? She explained to me that most or all of the class of drugs used to treat mood disorders can cause a Stevens-Johnson rash, so I really don't have a choice in that regard. She also told me she has several patients on Lamictal, and that they are all doing fine. The odds are low, she said, and Ben is suffering. Do a skin check every day, and if you see a rash, bring him in.

11. I decided to start him tomorrow. I am scared, but oddly enough  I am also brave. Simultaneously.

12. In the hopes that there may be some therapeutic benefit to improving his diet, I got referrals to "feeding groups" at Mass General and Children's Hospitals. These are practices within GI/Nutrition departments that work with kids who have food aversions, food anxieties, stuff like that. It has been impossible to feed Benjy properly his whole life, because of these kinds of issues. When he was younger (well, until he started Abilify), he was quite underweight, because there was very little I could induce him to eat. Now he eats plenty, but it is all TOXIC sugar, simple carbs, processed junk food. I know you are raising your metaphorical eyebrows at me. I know it should be simple: just don't buy that stuff. Well, I've tried that. It doesn't work. and these days he is RAVENOUS all the time, because his Abilify is like my Risperdal was. It's fucking with his appetite and metabolism and hijacking his body.

13. But I saved the best for last. (No irony here, peeps. You can read on without fear.) Today I wrote, for the first time in a couple of weeks. I'm not sure how I managed it but I did. I worked on an essay about me -- not about Benjy, not about disability -- and it felt GREAT.

And now I'm returning to my old coda, the one with which I closed most of my posts in the early days of this blog:

We take things one day at a time around here. And we shall see what tomorrow brings.