happy being trevy

I think the very first med speak phrase we became familiar with upon entry into the Infantile Spasms Community was… Benefit versus Risk There is more clarity on the physician side of things.  They think in black and white objectivity.   Not so much on the mommy daddy side, though.  We think in the “Oh my God, this can induce what?” or “the vision loss is permanent?” murkier side of things.  Sometimes Benefit vs. Risk is really very subjective. It’s more… eenie meanie minie mo, if you ask me. When removing portions (or halves) of brains, for instance.  While the surgeon might look at me holding my completely non-verbal two year old through a cluster 50 strong and tell me there really isn’t any other choice.  The trajectory is death.  Which is ripped for our real-life story and is almost verbatim what Dr. Neuro-surge told us in his office.  The conflict that murkied the waters was…I wanted to KEEP ...

I haven't mentioned this yet. Don't ask me why. I really don't have a clear answer. Sometimes the answer is.. .just because . Anyway... We (meaning Jonathan, myself, Grams...and his team at school) have been noticing odd behaviour from Trevy during the past month. He's been cranky. He's always so happy-go-lucky. Except when an electrical storm is firing inside. Loss of appetite. The only time he hasn't been a good eater was when he was seizing. Posturing. We haven't seen that since pre-surgery. Staring. Long enough and non-responsive enough that I was certain something inside his head was firing. Short enough...to make me question myself. Lip smacking. A classic Trevy complex partial seizure que. Nothing overtly dramatic. Just off. And enough to cause my seizure-mommy-dar to alert. That something could be brewing. So of course I reached out to Dr. Neuro. Who immediately ran labs and scheduled an EEG. Both Dilantin & Trileptal levels ...

He'd been standing at my knee for a moment or two. While I munched shredded wheat and checked my email. When I do believe he just pinched my leg on purpose. So I would look. Which I did. Into his adorable elfish face. Milk dripping from my spoon frozen in the middle of mouth and bowl. Have I ever mentioned that I am not a multi- tasker ? His eyes were reflecting something. And I was trying to cypher that something. I just couldn't put my finger on it. Seizure coming? I love you mommy moment? What is he trying to say??? And then he spit his binky out...grinned wider...and licked his lips. And it hit me! He wanted a bite of my breakfast! Call me crazy...but I do believe my non-verbal son just spoke to me! Although it turns out he's more of a fruit loops boy...

Trevy's Current Med Sched... AM 75 mgs Topiramate (mixed with applesauce & maple syrup) 1/4 tablet Banzel (mixed with applesauce & maple syrup BUT we should be Banzel free by the end of this week!) 100 mgs B-6 (crushed & mixed with applesauce & maple syrup) PM 75 mgs Topiramate (same deal as the am) 100 mgs B-6 (ditto) NEW ADDITIONs PM - 0.125 mgs (1 tablet) of Clonazpem - Despite my personal feet dragging on this one...we haven't noticed any ill effects since we introduced this newbie last week. And it's a super nice bonus that it's a yummy meltaway tablet! 2x daily - 2 teaspoons of Liquid Dualcitra added to juice 2 -3 times daily. This is to counter the acid increase side effect from Topiramate. We just had labs done last week and Trevy's CO2 levels are back in normal range! I'm SO happy... A) because the thought of Trevor going into metabolic acidosis was freaking me out B) because we have seen positives sinc...

I've been hoping to capture a more right sided cluster. To show Dr. Rockstar. This did not end up being very right-sided...but Trevy was so extraordinarily amazing that I wanted to share it. How can he smile? And no wonder I don't much. How can he be SO sweet? He's amazing...all these little courageous kids are amazing... The video is actually in reverse order...with the cluster first. And the pre-cluster aura after. The music transition is the que. I was tempted to not include the pre-cluster video...but he was smiling and just so beautiful that I had to! The ques he gives are VERY subtle. Well...not to me. I'm really just saying that for your benefit. His little face muscles get tight. And he will start picking and becoming quiet and focused. And it's the weirdest thing...but after the cluster passes he's always starving? This cluster (1 of 6 clusters so far today) was on the milder side. Although you'll see him lose his balance a couple of times. And if ...

Tried to get the first dose of Liqui-Dualcitra into Trevy. Screaming. Crying. Tearing at clothing...hair...anything tear-at-able. And dry-heaving were all involved. The thing is... The Topiramate is causing Trevy's CO2 levles to drop. Now I don't know much about much...but I do know that if his CO2 levels continue to decline it will lead to metabolic acidosis . And that, my friends, is whole nother kind of nightmare. The liquid yuck's job is to reverse that side effect. Ack! This really sucks. Cause even though we're still seeing mad seizures. We're also celebrating happy stuff. Babbling. And clapping. And laughing. Happy stuff. Which is definately connected to the introduction of Topomax. And if we can't resolve this CO2 jazz...we'll have to pull the Topomax plug. And I just hate that.

Trevy's current Med Sched ... AM 300 mgs Banzel crushed in applesauce 50 mgs Topiramate crushed in applesauce 100 mgs B-6 crushed with maple syrup 1 3-6-9 Omega squeezed into his morning yogurt smoothie PM 300 mgs Banzel crushed in applesauce 75 mgs Topirmate crushed in applesauce 100 mgs B-6 crushed with maple syrup Trevy's current Therapies... Speech Therapy once a week. We're beginning to introduce simple (and modified) Picture Exchanges . I'll share more about this later...cause we're doing some groovy stuff that deserves a post of it's own! Trevor is at a 12-15 month level in his Speech/Cognition. Occupational Therapy once a week. This is typically puzzles...Mr. Potato Head...and other fine motor enhancers. We've also introduced a weighted vest and some light brushing to help on those SUPER active days. Trevor is evaluated at 9-10 months fine motor skills. Physical Therapy once a week. It totally tickled my funny bone. A set of profes...

Trevy's current med sched... AM 150 mgs (3/4 tab) of Banzel - given at breakfast crushed and given in yogurt or oatmeal 100 mgs (1 tab) of B-6 - crushed and syringed with maple syrup 1 Omega 3-6-9 - we're still expeirementing with the best method for force feeding. So far we've tried just squirting the oils into his mouth. He kinda hated that! Mixing it with yogurt. Worked for a day. Mixing with cream cheese. He LOVED that...but then I ran out & haven't made it to the market yet! And mixing with apple juice...and letting him straw suck it. This has been working well. He likes the straw factor. PM 200 mgs (1 tab) of Banzel - given with dinner crushed and mixed with yogurt or chocolate pudding 25 mgs (sprinkle tab) of Topomax - given with dinner sprinkled in yogurt or chocolate pudding 100 mgs (1 tab) of B-6 - crushed and syringed with maple How I'm feeling about... Seizures... Grrrrrrrrrrrrrrrrrrrrrr... Trevor has at least 100 seizures a day. Spread between at ...

Yesterday's Inbox... Hello, Sorry it took me a while to get back to you, but I wanted to make sure I did a thorough search for the records before replying. I have not found the package sent by Dr. Neuro's office. If they can fax it to Dr. RockStar's attention that would be great or resend by mail. Thank you, Ms. Nurse Yesterday's Outbox... Thank you for letting me know! And trust me...the problem is SO not coming from your end! But I've just emailed Trevor's neuro and fully trust she will get this resolved ASAP. ...danielle ::druuuuuuuuuuuum roooooooooooooll:: Today's Inbox... Hello, We have received the records, and I will give them to Dr. RockStar for review. Thanks, Ms. Nurse

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... 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 t...