The Swirl

If I were being honest, I think that I would have to admit that I have a pretty hard-core case of ADD. I don’t have ADHD–I could sit on my butt for hours–but my mind is pretty much off to the races. I hate to do one thing at once–even as I write this post I have a game of spider solitaire going and I’ll probably check my Twitter, Facebook, and e-mail before it’s finished.

I did fine in school although I think I listened to my teacher about never–I spent a good deal of my time decorating my monthly calendar and sketching what I was going to wear to the next formal. I mean, a girl has to have priorities, right? To the annoyance of many of my classmates, I had good grades, so I never really noticed my extremely distractability.
In college however, it was brought to my attention that I am literally incapable of sitting through a movie without either a running dialogue or a magazine. I can remember at least one occasion where I was banished to another room during movie time.

I’ve never sought to medicate myself for it or anything. I CAN keep quiet although I’ll probably have a notepad full of doodles at the end of a meeting. Truth be told, I’m fine having a brain that’s always looking for the next thing. The only real problem it gives me is insomnia–there are nights when I just can’t shut my brain off–but I suspect that if exercised a little more regularly that even that wouldn’t be as much of a problem.
So where was I going with this?
Oh yeah. When you have a brain like mine, there’s an endless list of things that flit in and out and sometimes it takes a while before you grab hold of one of them and really start chasing it down.
But lately I seemed to have grabbed hold of something and I can’t seem to let it go.
A couple of weeks ago we went to have dinner with a college buddy of mine and my husband’s. He’s fully aware of Charlie’s issues, but we don’t see him that often, so when we sat down I gave him a quick appraisal of the situation and this is what I said, “think of Charlie as someone whose had a little too much to drink–he knows what going on but it might take him a little time to act on it.” At which point my husband muttered, “well, he is on Phenobarb.”
I kid you not, it was like someone had slapped me in the face.

I mean he IS on Phenobarb. And he does often have a sleepy expression on his face. And I’ve been blaming it on low tone this entire time, but what if it isn’t low tone? I’ve never known Charlie not on Phenobarb. I’ve heard other parents describe their children as lethargic and sleepy on Phenobarb and yet I never felt it was having that effect on Charlie. But really, I have no idea.

So now that thought is racing through my brain and I’m trying to sort out how I feel. I KNOW that Charlie has abnormal brain waves and while abnormal brain waves put you at a risk for seizures, there’s no guarantee that a person will actually have seizures. And even if he did have seizures, would they be big, bad, scary grand mals or would they be petit mals? or partial seizures? Are there other drug possibilities? My ADD brain is combustible with questions. And while there are other parents who have traveled this road or who are traveling it now, I still don’t know what the effect would be on my child and it’s not a decision I really want to get wrong.

So here I sit and I’m fairly certain my poor neurologist is going to get a visit and a list of questions, but man is that thought scary. It’s never easy to rock the boat, but maybe this time it’s worth it.

My husband said these were horrible pictures, but Charlie really liked his trip to the Aquarium and I wanted a little memory of the trip, so there ya go. Crappy pictures taken by my not-very-fancy camera.

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  1. Mamá Terapeuta says:

    Well… I'm anti drugs. We changed from traditional medicine almost 100% due to epimeds. They truly sucks.

    One thing: abnormal brain waves are no guarantee that he'll have seizures, and taking epi meds is no guarantee that we wont have either.
    They only mess up with his brain, his atenttion, his health, etc, etc, etc…

    My daughter is almost free meds now and she is SO much better. With TONS of epi meds her EEG was still terrible. 2 weeks after natural diet and her EEG was normal. :)

    Drugs arent the best solution!

  2. Wow. Thats great information, Mama!

  3. Caleigh was completly weaned off seizure meds back in July…She started babbling more, sitting unassisted, etc. etc. I hate seizure meds!

    She was on Phenobarb and then we switched to keppra. As soon as we started Keppra she started smiling at us. She was probably 7-9 months old without a smile all that time.

    After an abnormal eeg but no seizure activity. I told our neuro we were going to wean…I didn't ask..He didn't complain though.

  4. Jude's seizures are violent, and horrible without medication. He was on phenobarb, and I hated it. It seemed like Jude was in a constant veg state. We tried several options, but Depakene seemed to be our miracle drug. Since Jude's seizures are so violent they can wipe out his brain function just like the pheno so we had to find something. Anyway, he was 100% different and did so much more when we weaned him from the pheno. Good luck!!!

  5. Eli was on Phenobarb for his first 15 months. He was a GREAT sleeper!
    It was for "precautionary" purposes. We didn't know what the future held, they knew he had a massive brain injury…so they wanted to be safe.

    We don't like drugs…and asked to start weaning him. WE DID IT REALLLLLLLLY SLOOOOOWLY!!! It took about 4-5 months. We'd adjust the dose very slightly and let it ride until we felt he was settled into it. Then we'd adjust it again….I don't know about Charlie, but our Eli is very sensitive to changes in his body. Just a thought for you to be aware of if you get the go ahead. :)

    He started teething right after he got completely off the drugs…sucky timing because it was rough…as he couldn't teeth because he doesn't eat by mouth and wasn't able to gum anything to help breakdown the gums. I didn't sleep for a year! Ugh.

    He is turning 4 this weekend and we've yet to have any seizures.
    Hallelujah! :)

    good luck!

  6. Anonymous says:

    My daughter was on Phenobarbitol and another medication for years. Her seizures were never totally under control, only when she had a fever. When we changed to a new neurologist, she introduced us to about 8 different anti-seizure medications for children. The seizure activity did not change but the difference in the clarity of her eyes was amazing. We waited too long for this change, past the years when her brain & vision were still developing.

  7. Katy,
    Don't attribute it all to ADD, I think that women in general almost never turn off! I watched an episode of Oprah once, when they showed a woman's brain,even is sleep, it was going a 100miles a hr! I think that's fairly typical for moms too.
    Faith was on Phen. when she was first born, they used it to induce her into a coma for 7 days. It was a very strong, so after she had recovered some, they moved her to Tegretol, which has less sleepy effects and still helps ward off the seizures. If Charlie hasn't had seizures, I wonder why they keep him on such a strong med. I dont'k know, I guess I am rambling, too, see your not the only one! I would definatly harrass the neuro.!

  8. I don't think I have anything relevant to add to the conversation but seizures are something I've been terrified about for Nathan. I was 17 when I went on anti-seizure drugs after a couple seizures following a case of meningitis. For the next three years I bounced from med to med and lived in a twilight zone. I finally had enough and decided I'd rather have seizures periodically, even a grand mal, than slog through life on meds. After weaning off meds my professors in school (don't ask me how I managed to get into and stay in college) would pull me aside or write on my papers "What happened to you? This work is excellent–so much better. Your thoughts are so clear."

    I was so miserable on medication the thought of putting Nathan on meds is horrifying. (No seizures yet, thank God.) But when I strongly told one of Nate's case workers about my feelings, she gave me a different perspective. She said she has a client whose parents refused to put her on meds and she was practically a vegetable from constantly being in a seizure or in a post seizure state. Finally the parents agreed and after gaining some control, the little girl began sitting, communicating, and making excellent progress. Her parents however decided to remove her from meds and now she has completely lost all the ground she gained in the few months of medication use.

    I never thought of it that way. It's one thing being a teenager and already knowing how to walk, talk, etc. It's another thing to be a child and so debilitated by seizures, you never have the opportunity to learn.

    I don't know, you're damned of you do, damned if you don't. It might not be a bad thing though, if Charlie hasn't ever had a seizure to take him off and give it a chance. Meds are truly altering and even a year, possibly more, of learning and development without the effects of med may outweigh a seizure or two that MIGHT happen down the road.

    So granted Nate doesn't have as extensive brain damage as Charlie but, if this were Nathan and the medications were preventative but he hadn't actually had a seizure, I would definately take him off. Anyway, that's my useless opinion. Take it up with the doc and go with your guts. Your guts seem to serve you well.

  9. Loren was also on phenobarb – which seemed to make every issue of his worse AND he was so sleepy the whole time. We weaned him off it as he didn't really display seizure activity even though his EEGs were also abnormal. He was much more alert after that.

  10. Nadine Hightower says:

    I think the photos are great.
    I would have loads of questions too. Is cutting back an option? As he ages it might be.

  11. Wherever HE Leads We'll Go says:

    I think you definitely need to drill your doc with questions. Every child is different and you need to figure out what works for Charlie (I know that isn't new information for you – just confirming what you already know).

    This is our experience:
    When my daughter was born she was put on Phenobarb and Keppra. She was practically in a coma for a few days – I remember wondering what color eyes she had. When we took her home she was only on Phenobarb. We had never seen her without it so we had no point of reference. At about 7 mos old, our neuro told us that Phenobarb is not typically taken for long periods and he wanted to move her to Keppra. Within about a week after being off Phenobarb, she smiled for the very first time. She was more alert and would actually engage people. We were amazed at the difference. It was like Phenobarb just numbed her.

  12. Wait–what? I think there's a little ADD in all of us.
    I don't know much about seizures, or medications, or…really anything at all, but I can understand why all the sudden it would hit you like that. It makes sense–looking into it can't hurt.