Girl Detective

I always thought it would be cool to be like Nancy Drew or Trixie Belden–sadly, I never really got the chance.

I’ve been playing detective recently, though.

While in the throes of his ear infection, Charlie was having a most-terrible time. He was up at funny hours and when he was up. . . he was furious. The screaming was off the charts terrible and one night I just sat there on the couch and told my husband, “it didn’t used to be like this.”

It’s only taken me about a year to realize that my happy-go-lucky little guy has developed an anger issue. I’m not sure exactly when this happened–it’s been a crazy year. There was pregnancy, the Parvo virus that both scared me to death and robbed me of any energy I might have had. There was bedrest, and then the premature birth of the twins. I was, without a doubt, distracted.

But some “clues” have availed themselves and I think that I am piecing something together here. . . I think.

When Early Intervention came by, Charlie’s old OT met a smiley, engaging Louis and remarked, “he’s just like his brother.”  I was reminded that Charlie was once a smiling, easy-to-please baby. What happened? For the longest time I just assumed that this was growing up–but I’m less sure of that now.

And there’s the biting. Charlie’s arm is probably permanently calloused from all the self-biting he does. He bites he other arm as well and sometimes his wrist. It’s not something I discuss very often because truthfully, there’s no answer. He bites constantly.

Perhaps the biggest change, however, is how he responds to little disappointments. I sing a song–a song he likes–but not the right one? He bites furiously. Dinner not to his liking? Whining and crying. Up in the middle of the night? Screams of displeasure.

Like I said, it didn’t used to be this way.

And then the other day I was reading a friend’s blog and she was discussing  in particular she was looking back over her blog and seeing things in retrospect that she didn’t see when they were happening.

So I went back and looked at my own blog and noticed something–we switched to Keppra at the end of 2009, and at the beginning of 2010 I wrote about the arm biting.

Hmmmmmm.

Keppra has a bad reputation in the anger department, but I love how much more alert Charlie is on Keppra.

After some Internet research, the first line of attack is to try a vitamin supplement to see if that makes a difference. If not, we may be looking at trying a new seizure med. Again.

I do hate having to make these kinds of decisions. Piles of research have led me to the conclusion that there are NO good seizure medications–they all have terrible side effects. Keppra had one of the shortest lists. I hate the idea of trying a new medication. I hate that I have to pick one at all. This is basically the definition of being caught between a rock and a hard place.

So here goes nothing–maybe some vitamins will do the trick.

Studying African Animals

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Comments

  1. I know it’s not the same thing, but I totally get what you’re feeling. We’re in the middle of trying to find the right ADHD medicine for my son. The side effect that seems to pop up the most in Noah is rage/anger issues. It’s so frustrating. Trying to find the balance that works best. It sucks. I’m trying a new vitamin combo right now too that is supposed to help. I try to have a positive attitude but you know.. nothing is magic.

    • Well, it sounds like it’s really similar! I think any medicine that’s designed to control the brain is bound to be a little wacky–wish we didn’t have to make these choices.

  2. Aha, you’re quite a detective. I was actually thinking “seizure medication?” as I was reading your post before I read the paragraph about the Keppra. I realized earlier this year that Keppra was making my daughter scream… when we decreased her dose as we began adding a second medication, the behavior changed. Unfortunately, now she is back on the higher dose as we try a third medication and the rage is back (though not as badly as before). I, too, hate seizures and seizure medication. Please post if the vitamins or something else works or helps. Thanks!

  3. Oh man. I am so sorry. Hoping the vitamins do help him. Poor Charlie and poor you!

  4. Blargh. Keppra. I’ve seen it do amazing things, I’ve seen it do not amazing things… :-(
    Hopefully you can find a solution!!

    • Me too! I do LOVE how much more alert Charlie is when he’s on it–it was practically a miracle drug when we first put him on it.

  5. Cute pictures!! Whatever you do about Charlie’s medication PLEASE PLEASE PLEASE consult his doctor first )

    Yours truly,
    Nisha

    • Of course, Nisha! We have a great relationship with Charlie’s neurologist and she works with us on these things.

  6. Sarah O'Donnell says:

    Oh wow. I’ve been struggling with my 3 year old-behavioral issues, temper tantrums, hissy fits if you don’t do things her way, biting ME and thought it was diet issues, so we started the GAPS diet. Never thought it could be her Keppra. But we will be weaning her off the med next month-she’s been seizure free for 2 years. I pray Keppra may be the root cause-thanks for posting. I hope the vitamins do the trick.

    • I wish we could just quit the seizure meds all together!! It’s been ages since we’ve had a seizure (knock on wood), but Charlie’s funky EEGs will probably keep us on meds forever.

  7. There’s a burning desire inside me to rescue families from these though places of seizures, med’s, and their side effects. I don’t know how my family got so lucky to dodge that ball. Cayman has seizures and at 6 weeks old we did the unthinkable. We didn’t go to a Neurologist. We didn’t see a medical doctor for them. We turned in a whole different direction thinking it might fail, that it probably would and we’d end up in a neurologist office after all. We sat in a Naturopathic Doctor’s office and went after his advice. And it has worked! Cayman still sees this same Naturopathic Doctor, every 4 months and has since she was 6 weeks old (she’s 3 1/2 years old now). The seizures are gone and her brain functions more healthy now. From what I understand seizure med’s go into the body and control the brain, and even inhibit it in order to stop the mis-firing. It manipulates the brain and therefore side effects are seen. This other way actually teaches the brain how to function properly, and so now not only is Cayman seizure free she has a more alert and happy brain. There is a better way, a cure so’s to speak. I know because we are experiencing it. I would love to look in the face of the FDA and ask them “why on earth are you not supporting this??”. So many more families could be helped! And I just want to scoop you all up and bring you to this Naturopathic Doctor to have you experience what we have. I am so sorry you have to make these tough decisions. They are difficult and I’ll be thinking of you.

  8. What about his communication skills? Could that be what has increased his frustration? That he can’t communicate?

  9. Ah shoot. I hope the vitamins help. xo

  10. Don’t be hard on yourself. There are so many “issues” to monitor that the ones needing attention will only show when they are seruous enough, or when the dust settles. That’s why they call it “complex” medical care. You’re doing an awesome job with your little family and with keeping all of us blog followers feeling like you “get” it… And we are less alone.

    Onward!

    Mel

  11. Gabriella says:

    Hi! I found this blog several weeks ago and find it so inspiring and helpful! There are so many similarities btwn your son and mine, without them having the same diagnosis. My son also bites his arm, but I don’t think of it as anger so much as a lack of ability to communicate. I see it as frustration. Think about the times he does that, and you may find your answer. If it’s happening often now it may likely be that he understands more, is more aware of things that he likes and wants, and he just can’t tell you so that you’d understand. What is your reaction when he bites? Chances are, he gets your attention ASAP and … voila… he’s communicated a need to you! I wish you luck and please keep sharing on this blog. It’s become one of my favorites!

  12. My brother, who is now 25, has seizures and an assortment of other developmental problems and I know that it’s always been a struggle to find the right combination of meds. I remember for quite some time he was on a medication that made him nauseated so he wouldn’t eat anything and every single meal was a fight. I know how exhausting it can be. I’ve read your blog for months and have even sent it along to my mother. She definitely knows your frustration and paid of raising a child with disabilities. Good luck in finding the best medication and way to go in taking the initiative to figure out where his attitude shift came from.

  13. We too have a love/hate relationship with Keppra. We saw the same increased alertness in the beginning but after several large dosage increases the rage got out of control. We didn’t have much luck with the vitamins but, for awhile, split the Keppra dose in three rather than two. We noticed if we consistently gave 1/3rd does every 8 hours the rage decreased quite a bit… enough that we were willing to wake our son every night at midnight for one of the doses. Our neuro felt we shouldn’t HAVE TO be that diligent for a medicine to be effective or to minimize side effects so we ultimately switched. It was an easy decision, however, because the Keppra was no longer controlling his seizures.
    Good luck with the vitamins and everything else you have going on :-) I love your blog and have been pulling for you throughout your recent pregnancy!

  14. I send you ((hugs))
    U should also see if along with the vitamins you can eke out some alone time with Charlie. ‘Cause you said it there has been a lot that has gone on this past year. All of which have cut into your time with him. I know it is not going to be easy, but he has to share you with two new wigglies.
    I know this is so different but my son started gnawing his hands right after the girls were born. He loves them but they stress him out and I know he doesn’t have the words to express this to me. Maybe it is part of Charlies distress.

  15. Hmmm….now you have me thinking. I wonder if Elisabeth’s head banging could be medication-related…..