Thursday, August 30, 2012

the trade off



Have you ever heard that saying…



In every jest there’s an element of truth?



I’ve teased for years that if Trevy ever came off his seizure meds he’d be off the hook with energy and mischief.



It was a joke. 









The reality is…Trevy is a handful to manage ON three seizure medications.  Medications which can and do inhibit energy and creativity.  It didn’t require much imagination to visualize what would happen if we ever deleted a pill or two.  My mental image is Donnie from The Wild Thornberry’s.  On steroids.  



I had no doubt there would potentially be a trade off.



Cognition for him.



More work for me!



Even knowing that, we decided to slow wean one of his meds.  Topomax.



The effects of this wean have been nothing short of AH-mazing! 



In both good and not so good ways.



Trevor’s speech has positively exploded.  Like, suddenly structuring sentences in ways that almost make sense.  Four months ago, he would need a translator at all times.  To help fill in the context of what he was trying to communicate.  He often still does but the unbelievable (for his daddy and I) part is that sometimes complete strangers occasionally understand him!



Which is super cute except when he says random things like,



Elmo is stupid!






I touch Bristel’s butt! hehehehehehe!



Can you sense me rolling my eyes and whaddya gonna do shrugging?



With the first wean, I totally wrote off the speech bump as coincidence.  Because he does have little pockets of growth here and there.  But five pills subtracted later (we still have one to go) and I’m convinced – it ain’t no coincidence! 



Topomax (or as we call it in Seizure-ville…Dope-amax) has been locking him inside.  



It’s been beautiful and heartbreaking to watch him grow through it all.  I can’t live in the land of “if only” for long or I’ll melt into a puddle of depression.  But it’s really hard not to wonder how far (developmentally) along he could be if only we’d weaned him off this stupid drug sooner.  It never did a dang thing for his seizures anyway.  I should have and am kicking myself for not pushing harder to wean it before now.






But it is what it is.



And these decisions are never as easy as all that.  Which I know.  Everything is blind guessing.  There are no promises one way or the other.  And sometimes weaning a med can actually make matters worse.  I know all that.  And eventually I’ll come to terms with the fact that our choices have been and are always driven by our love for him and his best interest.  Also there’s my Faith thing.  The one where I believe Trevy is growing into who he was Created to be.  I really do.  But it doesn’t break my heart any less.






This last wean has been a doozey. 



We’re only going down by one pill a month.  Super duper slow.  To prevent any seizure breakthroughs.  Also, to help his body detox slowly and hopefully make the process easier on him.  These little bodies grow addicted to these (bleepity bleep bleep) drugs.  I recently tried to give up my afternoon coffee.  Yeah.  One nasty headache later and that was a fail.  I can only imagine (because even with all his words he still can’t share things like) what he’s felt like with each decrease.  All I know is after this last one he’s been a wreck.  Super miserable.  Angry at the world.  And us.  Mostly us.  Yelling NO all the live long day.  Throwing large heavy objects in anger.  Or hitting with large heavy objects in anger.  Biting.  Targeting his sister often with the aggressive behaviors.  Shouting his new favorite phrase, HEEEEEEEY! anytime we ask him to do anything.  He’s even learned the art of the angry arm cross.  And how to emphatically say I NO LIKE IT!  His No Like List is growing by leaps and bounds.



He’s a hot mess, I tell ya.



Toby actually told me he thought we should go back up a pill.



And it’s not just aggression either.  It’s like he’s suddenly turned into ADHD Boy!  He’s never been able to sit still for long but he’s literally crawling out of his skin lately.  Getting into mischief too.  Trying to flush things (like his sister’s toothbrush, for instance) down the toilet or use the sink to flood the floor every two seconds!  We had to put the safety lock back on the bathroom door, in fact.  It’s been ages since we’ve had to lock him out of the bathroom.  He’s risk taking non-stop and shouting “watch me!” while he jumps from high places.  With no thought or fear of bodily harm.  He’s figuring out locks and climbing out of bed and coloring all over walls and trying to unplug and replug every single electrical item in the house.  He learned how to take the lock off the yard gate and decided to go for a walk by himself!  Thank God I heard the gate close and ran out there just before he stepped into the street!  My heart is still recovering from that one.  Daddy mounted a new lock on the other side of the gate which will hopefully keep him safe for now.  For those of you just itching to tell me I should really focus on correcting the behavior rather than blocking it…you’ll be happy to know we are.  But in the meantime, we need to keep him SAFE!



His Behavior Therapist confessed that she was exhausted after an hour and half with him.  



I laughed (because that’s my alternative to crying) and said, Try spending all day!



He’s out of control.  Off the charts. 



He has always needed constant supervision but now it requires much more active supervision.



But the trade off.



He’s learning and talking and singing whole songs and just growing SO much.



The other night Daddy was giving him a bath and he says,



Mr. Keith fixed it.



While pointing at our plug.  Which our plumber friend Mr. Keith did in fact fix.  MONTHS ago!  It’s not like we bring it up all the time.  That Mr. Keith…sure glad he fixed out tub.  It’s old news now.  Trevy fished that out of his memory! 



The trade off.



These last few months have been unbelievably overwhelmingly exhausting.  We have an appointment with Dr. Development to chat about ADHD meds.  I’m not sure I can survive until October though!  After this last wean, I’m not even sure I want to come all the way off of Topomax!






What am I going to do with him?





Sylvia Phillips said...

I can just imagine how thrilled you are about his speech taking off and just how exhausted you are at his body taking off!! Maybe the angression/adhd is just part of withdrawl process and will eventually balance out. SIGH!! We can only hope!! Why cant things ever just be perfect anyway?

Kristen said...

All I can say is that Trevy and your family are an inspiration. I know he is a handful, but the speech part is simply amazing and gives us hope. Lets hope that maybe some ADHD meds can be given instead of Topomax?
Thanks for giving us hope

silverdragoncub said...

Ugh! I hate meds and what they do to our kids. And then we have to turn around and give them other meds. We upped Emma's Onfi, which has caused her to hit herself in the head and bang her head so much more. Our new neuro doesn't think it's actually the Onfi, but anxiety and problems with transitioning. I'll go with that. The Onfi has made her more aware which has caused to be more anxious and OCD (I think). But to try and counteract it, we put her on Prozac. That went well for a couple of weeks and then she fell asleep and barely woke up long enough to eat a meal. And when she was awake, she banged her head for most of that time (it takes a couple of weeks for the Prozac to kick in). We finally figured out that the Prozac was interacting badly with her Trazadone (which she gets to help her sleep at night). So I lowered the Trazadone and she wakes up, but she always banging her head and I've lost my happy little girl. No giggles or smiles for weeks. We're hoping that an increase in Prozac will help her. If not, we move onto another med to try and curb the anxiety. I hate waiting!

Ya know, I always write out this huge comment and then decide that you don't want to hear me moaning and and groaning so I don't post it. ;)

Your Therapy Source Inc said...

Wow, your strength as a mother is really showing through in this post. You want what is best for your child(ren) and it shows. You are an excellent writer, too.

I do not have the answers for you (although wish I did) perhaps you have already considered this but do you think his reactions are based on him having to suddenly now process the world around him? Our sensory systems have to process incoming information and produce a motor outcome. To quote you "Dope-amax has been locking him inside". Perhaps now he suddenly has to process all this "new" input which might feel very loud, very hard, very scratchy, very overwhelming to him. Then his response is flight or fight. Like I said you probably already consider this but an evaluation by an occupational therapist may be able to offer some insight or suggestions to help your family function easier while he experiences this amazing growth period.

If you want to contact me via email with questions feel free.

happy's mommy said...

Thanks, everyone. For listening. And being supportive.

Actually, the sensory idea is REALLY good. I hadn't thought that direction! Hmmmm...


Our Side of the Mountain said...

Oh, Danielle! It brings be back to those early years with Sam and his challenging, ODD-like behaviors. And I didn't have the epilepsy to deal with on top of it. It WAS exhausting and frustrating and many days I wasn't sure of what we were doing and where we were going, but it's all worth it in the end. Focus on those new, positive changes because they aren't little! I don't know if it's sensory or not, but it is neurological...So it certainly could be something he's dealing with. It does sound like it but I'm not sure how it should be treated with Trevy's other challenges. (Does spinning, swinging, rolling, being squished, and sliding bother him?) Sam had therapy with an OT specializing in SPD. It was play with a purpose! Perhaps an assessment? Hang in there!

teamaidan said...

Yeah for speech, boo for the rest. Oh these decisions are so hard. We're on the flip side considering wandering back into med world. yuck.

teamaidan said...

Yeah for speech, boo for the rest. Oh these decisions are so hard. We're on the flip side considering wandering back into med world. yuck.

Mrs.M said...

The speech is AWESOME!!! And the body language and all super.
Mr. ADHD Boy, well, my goodness, the exhaustion and tears and frustration are all so warranted. And if any readers advise on the behavior portion....well, it's not that bloody easy when the front lobe is not developed not to mention the rest and OMG I am about to rant on a soapbox!!!
I better email;)
PS: Fort Knox and lots of sleep. For you.