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!
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!
Comments
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,
Jody
Love yall!
C
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...
Cyndi
Connie...I LOVE YOU YOU STALKER!
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...
...danielle
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!
I hope you had a nice long weekend!
Karen
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.
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! ;)
...danielle
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.