Trevy's current med sched...
AM
150 mgs (3/4 tab) of Banzel - given at breakfast crushed and syringed with juice
100 mgs (1 tab) of B-6 - crushed and syringed with maple syrup
New AM addition
1 Omega 3-6-9 - we puncture the tip and squeeze the oils into vanilla yogurt. Our tabs are lemon flavored which when mixed with the yogurt is quite yummy!
PM
150 mgs (3/4 tab) of Banzel - given after dinner crushed and syringed with juice
100 mgs (1 tab) of B-6 - crushed and syringed with maple syrup
15 mgs (sprinkle tab) Topomax - mixed with chocolate pudding or whatever other soft foods we're eating with dinner
Effects we're noticing with...
Banzel...
AM
150 mgs (3/4 tab) of Banzel - given at breakfast crushed and syringed with juice
100 mgs (1 tab) of B-6 - crushed and syringed with maple syrup
New AM addition
1 Omega 3-6-9 - we puncture the tip and squeeze the oils into vanilla yogurt. Our tabs are lemon flavored which when mixed with the yogurt is quite yummy!
PM
150 mgs (3/4 tab) of Banzel - given after dinner crushed and syringed with juice
100 mgs (1 tab) of B-6 - crushed and syringed with maple syrup
15 mgs (sprinkle tab) Topomax - mixed with chocolate pudding or whatever other soft foods we're eating with dinner
Effects we're noticing with...
Banzel...
- VERY floppy for 2-3 days after each increase.
- MORE clusters with varying degrees of intensity for 2-3 days after each increase
- Stronger (although possibly less frequent? Then again if you have to say possibly...) clusters. We're now seeing him fall down with a cluster at least once each day. Although to the best of my knowledge these would not be classified as "drop seizures". It's more like he loses tone in his right leg only...but is thrown backwards so forcefully now that he can no longer hold his balance. He falls backwards on his tooshie.
Topomax...
- Too soon to note any difference. Although I'm certainly concerned about the possible loss of appetite. And potential interruption of speech growth.
Omega 3-6-9...
- Also too soon to note any difference. But after hearing SO many other families report positive impact on speech I finally felt it was time to add this to Trevy's regimen. And am hoping it exes out any negative impacts the Top may have in speech growth.
Vigabatrin...
- That last decrease was positively hell! There is no doubt now that Trevy's little body was going through withdrawals. We had seizures SO bad...and SO often...that I finally called Dr. Neuro. Visions of the ER zoomed through my head. And I had the Diastat aimed and ready to fire! For two consecutive nights he was waking at least once per hour. Irritable. Thrashy. And inconsolable. Kinda makes you second guess why you're doing this... Until you see the next cluster of seizures...
Miscellaneous...
- Still no word from Dr. Rockstar. I'm giving it a few days...in case the package was still in route.
- We're learning a lot about how Trevy's body handles both the introduction & reduction of meds. For us...it seems like each change increases seizures...and causes crank-y-ness galore for 2-3 days.
- Dr. Neuro suggested it may be time for a helmet! I borrowed a line from another IS mommy...Not until stitches are involved!
- Surgery discussion withheld...we're actually at the point that J & I have seriously been thinking about the Keto Diet. Which is the next treatment on Dr. Neuro's recommendation list.
Comments
And about the helmet...We held off for months waiting and wishing the forward head drops would subside...But after the start of vig, we had no choice. I think you will know when the time comes. When you start watching his every move over every toy with complete anxiety and are afraid to let him walk...it's time.
I have to say, though, that we are completely dependent upon it now. Even after withdrawing the vig and the drop seizures very much improved, I still cannot let myself "take a chance". I honestly don't think they're any worse now than they were before we got it (but an absolute necessity while on the vig).
Have you noticed we have been on very similar treatments/plans for treatment??? Maybe we'll do keto together too (hopefully we won't need to)! ;)
(((HUGS to you and Trevy!!)))
Holli
When you factor out Trev's eight months SF...it's like our boys have been on the same path. And even have VERY similar responses to the same meds. I hate it...but it's comforting...having someone else exactly where you are.
And it makes me think that it's quite possible our boys may both have cortical dysplasia? Our neuro has always suspected this with Trev...but we just haven't found it yet.
I have a couple really good Keto sites...I'll post em' soon. You've probably already been goog-ing it...but just in case.
((((hugs back sweetie))))
Some day we'll have to connect...and let our little guys play together!
...danielle
He's on a great upswing at school. Whether it's this or the behavioral mods at school. Something is working and I refuse to stop any of it.
I totally forgot about the Omega Q...
So I have a tendancy to over-complicate things, right. Which is why I'm just now implimenting Omegas in Trev's diet. I wanted to get exactly the right kind...from exactly the right place...and it exactly never happened! So finally the other day at Walmart I just grabbed a bottle off the shelf! It's a purple bottle...which I thought was a nice ode to epilepsy awareness! *smile* And right on the bottle it states it's known to improve Cognition. I figured something was better than nothing! I'm starting him out with just one pill a day...although the bottle recommends two. But I figured it was probably based on an adult dose.
He's making sounds...and has been saying "up" emphatically. Albeit not appropriately. lol
...danielle
Emma also gets 50mg of B6 a day, but I think I need to increase that to 100mg. That and her 75mg of Topamax & 500mg of Vig twice a day. I just mix all of her meds in with food.
And you are so much braver than I when it comes to the Keto diet. I am hoping to avoid that at all costs. We're considering VNS therapy right now. But I think I really want to do it. Then maybe we can get rid of some of the medication. I think if I could, I'd take her in right now and get it done.
I hope the Topamax help Trevy. It's been doing wonders for Emma for so long. I really hope it can be the end of this for you and him.
Andi...isn't it crazy what we'll do for our children! I am NOT a fan of trying the Keto Diet. In fact...I HATE the thought of trying the Keto Diet. But I hate the thought of not trying...and it being what would have worked...
Softchew Omegas?!?!?! Awesome!
And btw do you mix all Emma's meds into the same food??? We've been hesitant to mix it all together. But it would be SO much easier!
Well...I suppose I should take care of Trev now. He's only been fussing at my knee for the past 10 mins!
...danielle
Every morning Emma has one of those packets of oatmeal. I dump some fiber powder on it. And then I just dump the rest of the stuff in to.
I used to section off a little bit of it so I knew that she'd eat what she needed to, but she's to the point where she wants more than just the one packet. She's a big eater now.
Dinner is in whatever we're eating if it's easy enough, or I get her some yogurt or cottage cheese.
We're very lucky that she's not a fussy eater...at least not yet. She totally yelled at me for feeding her sloppy joes & seasoned oven fries. I had to pull out the rest of a can of spaghetti-o's for her.
Just to let you know, we hate hate HATE topomax. The appetite surpression is moderate.. she grew but never gained weight. The cognitive effects are troublesome, and they just sort of creep up on you. You don't really realize the impact until you wean. we found the side-effects were not worth the moderate seizure-control we got.!!
Have heart, you'll hit the right combo yet. We had to introduce thuya on the advice of the homeopath before we got good results.
The blog of the woman providing the keto diet to her child:
http:// fawnahareo dot com/
In her top post now she is celebrating 8 days seizure-free.
I'm not pushing the diet - just want you to have all the support possible to decide. Barbara