weeeeeeeee-aning we go

Take a deep breath.

Half a tab.

And hope with all your might that this wean isn't as rough as the last.

Although...it's Klonipin that we're titering down this round. I haven't heard much happy about weaning this one. Mostly I've heard it's a hard core wean. So I'm prepping for Vigabatrin wean replay. Horrid stuff. The thing is...since we have seen zero benefit...I want him off. Pre-surgery. Because Dr. Rockstar will not wean it after.

I hope Trevy tolerates this well...cause we're working on a timeline!

ps. Happy Labor Day!


MJStump said...

I do hope and pray that this wean goes well for you all, Trevy especially.

Holy cow, I just realized how rapidly the days are being checked off your calendar til Trevy's big day. I can imagine that breathing may be getting difficult, but keep it up.

Sending hugs and prayers,

Anonymous said...

Hoping and praying it goes well!
Love yall!

Colby said...

I, too, hope it goes well....I would go as slow as possible...I always think that helps in titering up or down...If you can, that is...(Colby started Banzel in mid March, and he is STILL not up to the therapeutic dose yet!)

My dear friend's 28 year old son was on Klonipin for YEARS...She read an article about it and wondered why there had never been a level done on him....She requested it, and low and behold, it was a little toxic...She went slow on the wean and got it down to half of the dose, and he did fine....

We'll pray that Trevy does the same! And yeah, I'd want to wean it now instead of later as well!!! Good thinking!!!

Hope your holiday goes well...


blogzilly said...

Hope it goes well. Did Trevor have somnolence on Vig?

Katy said...

Good luck! I want to wean mine off of phenobarb, but the doc says it's a bad idea. Sigh. I'm going to suggest tryign a different drug next time--one that makes him a little less sleepy.

baby trevor's mommy said...

Jody...my sched is filling up quickly with soccer & homeschooling & all that jazz. I'm thinking somehow it'll feel like I blinked...and suddenly we're in Detroit! Thank you for your prayers, sweetie...it brings tremendous comfort.


Cyndi...I think that's why it's so important to have good communication with your child's doctor. I don't expect my neuro to remember every single thing about Trevor & his meds...that's my role in our relationship. But I do think if I have a concern...it should be addressed ASAP. Actually...that's post-a-licious! I'll have to work on something...and if I do I'll be picking your brain for sure! Our holiday was nice...took the kiddos to the zoo. :)

Ken...weaning from Vig was a nightmare. I know that the vision thing is scary. It helped me knowing that if Trevor did have vision loss...it would only affect his peripheral field. And being SO young I had faith that he could learn to navigate that challenge. And...I did try to keep his eyes from direct sunlight (which was recommended in a study out there somewhere) and if you're really concerned you could add liquid taurine to Bennett's diet. The same study found that Vig decreased the taurine in the 'lab rats' which caused the vision defect...but adding taurine supplement seemed to prevent the side effect. All that to say...if it were me (AND IT IS NOT! :) I would wait on the Vig wean.

Katy...doncha hate it?! The med game. I feel like we don't really know how it's benefiting or impacting our kiddos until we wean it. Ugh...


Liz said...

That sounds like no fun at all. But I totally get wanting to be off it before surgery so he isn't stuck on it for too long. I'm hoping it goes much better than the Vig.

Detroit is drawing near. It sounds like you are staying busy enough to keep yourself from having too much time to think. Hoping time keeps flying by until it is time for Trevy's miracle!

KC's Mama said...

I hope that this time it's easier for Trevy! He (and you) could use a break right about now! I'm curious...why won't Dr. C wean him after the surgery? Do they like to keep everything the same for a while after that? Just wondering.

I hope you had a nice long weekend!


Holli said...

I'm totally feeling you on this one. I'm so ready to get Austin off Klonopin! I've seen zero from it, but since we were 'supposedly' going to be Zonegran & Depakote free by this time, epi wanted him on 'something' in case the Felbatol didn't work out. Does that make sense? Not to me. I mean, if it's not doing anything -which he admitted -why keep him on it? When it's one of those addictive, hard to wean ones?

Anyway, my drama aside, I hope it goes smoothly. And that was great thinking on your part to get him off now rather than months from now after the surgery.

Monica~ James~ Connor said...

Connor has been on Klonopin since diagnosis @ 8 months old. At this point I'm thinking he will probably have to go to toddler rehab to get off of it. We want him off of it, but when we tried last his seizures got much worse so it's been another security blanket drug for us. I can definitely understand why you want Trevy off of it!!! and definitely before surgery.... but weans are always so nervewracking aren't they?? we are sloooooowly coming off of Vig & starting Banzel. I would say fingers crossed, but I can't even bother to cross them anymore for meds for C. I really can't believe you are like a month away from Detroit...very hard to believe, but it is going to be so worth it for Trevy's miracle!!! {{{hugs}}}

Sinead said...

Hi there. I'm reading up on your blog which I found on Kens page. I hope the wean goes well. My little one also had surgery and the weeks leading up to it were pretty scary. I read that you were going to shave off the curls. Don't do that until they confirm the incision type and how much hair they plan to take cause many surgeons just take about a half inch of hair around the incision site and after three weeks you barely notice the comb over. I hope everything goes well for you. I'll be following your journey.

baby trevor's mommy said...

Liz...I'm trying to stay busy. Some days are naturally easier than others.

Karen...I think they don't want to rock the boat if he's seizure free after surgery. It's not that he wouldn't ever wean him...it's just that it would be awhile. And honestly...after halfing just one Klonipin dose Trevy is already more chatty! Even I get him down to just one tab in the pm I think it'll make a HUGE difference on the foggies!

Holli...I have found that many neuros are just as "scared" as we are of making changes with our kids. I think it's because we don't really know much of anything about IS...and the meds that work or don't. I LOVE our neuro...but even she has been scared of making a wrong move with Trevy. I've found that a lot of the decision making has fallen on my lap. It lets her of the hook if I'm convinced we need to do XYZ... But it's just a theory.

Monica...Oh girl! We should open a toddler rehab! That's a great idea!

Sinead...I've noticed your comments on Ken's blog & have been so touched by your very grounded take on this crazy mess! Thanks for following... And interesting about the shave. I haven't asked specifically...but because he is set to have a subtotal hemi I was guessing it would be a pretty large shave. My mohawk idea is now on the rocks! ;)


Anonymous said...

With Emma they did a large incision from the top of the head to the base of the skull, pulled back the skin/hair etc out of the way and then did what they had to do and pulled it back over. There might be a picture on her carepage that shows how little hair they took. www.carepages.com/carepages/ejsurgery
definitely ask before sacrificing any of his beautiful curls. I hope it goes excellently and that you sail through the recovery. If you have any questions at all, ask away. There are a few surgical veterans around.