just sucky...

Yesterday's appointment was pretty much heart shattering.

It felt a lot like Dr. Boston was throwing in the Trevor towel. Although I'm sure he'd be quick to deny.

It is his opinion that at this point Trevor would no longer be considered IS but should be moved into the LGS category. He was basing this on Trevor's age & seizures.

I showed him the video clip...which he agreed Trevy's spasms are undeniably A-symmetrical. But he also pointed out head drops...which are bi-lateral. Meaning involving both hemispheres. And that his left arm although less so...is affected as well. And while he would present it to the surgical team for me...he felt this evidence was ruling out a surgical miracle. To his credit, he did say it is imperative to get an VEEG before we completely shut the surgery door.

We spoke about the Keto diet. That would be last on his very educated list.

We left with broken hearts and his recommended to-do list...

24 hour in-patient video EEG. This will provide us with a baseline of how Vigabatrin is handling the epileptiform activity. And also reveal where Trevy's seizures are originating. Which will be used in determining whether or not Trevor is surgical.

Wean Vigabatrin within the next two months.

Add Rufinamide.

Three weeks in schedule another EEG to compare with our baseline...in hopes of protecting Trevor's cognitive development.

(if Trevor begins to regress developmentally he was open to re-implementing Sabril)

If Rufinamide fails move to Prednisolone.

If Prednisolone fails trial Felbamate.

I couldn't help myself. After he concluded his just jotted down thoughts...I blurted...

But LOOK at him!

Trevor was busy climbing walls...and smiling...and eye contacting...and if you didn't look too hard could be mistaken for a normal toddler.

He's doing SO great!

I need you to tell me that this kid is doing okay...

...and he's gonna be okay!

Dr. Boston paused. Looked me in the eyes and said...

I can't.

Yes, he is doing okay right now.

But he is on a path that is leading to not okay.

Just like that.


I knew he was going to say that. I knew it. But the sappy inside of me has to ask. Every time. And I wondered how many other parents sat in that office. On that chair. With their almost typical toddler climbing the walls. Licking the outlets. Asking the same question. My heart felt their stories haunting me. I wondered if his response slipped out as easily the first time he was asked. When did his heart go numb. To the pain. The broken-ness. The world flipping on end?

I don't envy his job.

I don't envy mine.

And as much as I know he is NOT the Author of Trevy's future. I can't just throw his years of experience out the window. Because neither am I. And the One Who is hasn't given me a crystal ball.


If it (&*%) stops snowing maybe today's appointment will be more positive?


Andi said...

I am on my way to the airport to hop a plane to come give you a big hug. Well, if I had the money, I would be. Will an internet hug do?

Why do these horrible things wrack our babies brains? I wish I knew.

I hope that all of the future plans will give some relief for Trevor & you. I'm here if you need a shoulder, even though I'm so far away.

Nicole said...

I have been keeping up with Trevor's progress for a while now. While I don't know what you are going through personally, my heart breaks on posts like this. But, my heavy heart was lifted when I read "he is NOT the Author of Trevor's future". Now, that is something I can testify to! No matter what people or even doctors say, God has the final decision. I have seen literal miracles and I know God has his hand on Trevor--no matter what! Keep looking up!

JSmith5780 said...

Licking the outlets- too funny.

But on a serious note. I have been in your shoes. WE have that child that LOOKS okay. It is hard to explain to someone that he isn't. Obviously after working with him, they get that something is 'off' but can never quite figure out why. It's just another mystery of post IS and epilepsy.

Don't accept that there is no hope for Trev, even if a doctor won't say it. Trev will do and be, what Trev will do and be. He will dictate who he becomes. Keep teaching and he'll keep learning. Maybe it'll be slower than others, but persistence will pay.

Try and see if you can get in to Dr P.

labonte4 said...


Don't get sucked in by one Dr's opinion. Especially when it comes to HIS list of meds! We've seen a few different doctors, and base our decisions on our gut....and the opinion(s) of different docs. We've been approached about both Rufinamide and Felbatol...but, as of now, have said no to both for a number of reasons, but they are still on the table if needed.

Don't be discouraged because....not to sound ridiculous...but it does always seem that whenever we are at our lowest..we do always end up seeing that light at the end of the tunnel..and start hoping again!

~Mama Skates~ said...

dang it, my comment disappeared...i was just saying, i agree with the ladies above - u can't discouraged! i don't personally know what u're going thru - but like u said, none of us have that crystal ball! i see big things in trevy's future regardless! gotta keep the hope alive & know that u're doing everything ur warrior mama self can do!

(((((tight, tight hugs!!!)))))

Adesta said...

Oh D, I'm so sorry that you didn't get good news as Jen did for Austin. I'll keep praying that whatever it is that's keeping Trevy from advancing positively, will knock it the hell off and leave him alone. I won't say not to worry, because I know, as a mom, how futile that is. I will say though to enjoy the moments that aren't being stolen from him and keep doing all the wonderful things that you have been all along. You are so spot on when you say that the doctor is not the Author of Trevy's future. Only God knows what Trevy's future holds and we will ALL continue to pray to Him that Trevy will get better.

Shanna Grimes said...

Man, my heart was aching as I read this. Again, I agree with the ladies. He is basing his judgement on experience not a crystal ball. You can't say what's gonna happen tomorrow, and neither can he. Just like one doc saying you have a terminal condition and you have weeks to live, then the person keeps ticking for years. I don't know how many times they said that about my dad and he kept going for EIGHT YEARS!! You just can't predict the future, especially when it comes to neurological things.

I had one doc tell me that Javi would never speak if he didn't speak by age four, I had another doc say that he would be mainstreamed by kindergarten. Neither one of them were right!! You just can't put limitations or labels on kids. They will surprise you every time!

With that being said, we had heard from our neuro that if the topamax didn't cure the 2nd bout of IS for Kay, he would move directly to the diet. He said there is new evidence that the keto diet can really help control many types of sz's that are difficult to control with traditional western meds.

Also, I thought that they didn't start moving to the LGS dx until they were 3 years old and showed signs of major developmental delay???? I don't know that much about it, but I think I had read that somewhere.

Hang in there sweetie. Just enjoy Trev. Don't let the docs ever rob you of your hopes. He is a beautiful, bright, lovable, curly top boy. Thank god for every day with him and celebrate every step forward.

Luv ya D!

Marissa said...

ooh, orapred. Nasty. We did that for two weeks while waiting for ACTHar. Not as bad as ACTH, but still a steroid.

Sophie's Story by Elaine said...

Ugh...my heart breaks for you. I am there with you...asking THAT question. Never getting the response I want. Sophie is different. Trevor is different. They are doing so well considering all that they are dealing with. It's not fair. Why can't we ever hear..."let's hope they continue to do so well". Instead, all I ever hear is..."if we don't control these seizures then...(fill in the blank with a lot of bad stuff)". Neuro appts are so emotionally and physically exhausting. All I ever want to do after an appt is crawl into bed with a bottle of booze. Good thing I have 2 little ones to take care of to stop me from doing that. Oh ya and this pregnancy :)

Big hugs to you. Keep believing in little Trevy. He has never ceased to amaze you and all of us.

labonte4 said...

*LOL* Elaine! You could fill in a "more than your share" pile of chocolate chip cookies in my case (and maybe a glass of wine too)! But it's the truth...we all have to pull ourselves together and be there for our families. It's very humbling...all of this.

Dawson said...

I cant help but comment on this one. We were painted a very nasty picture of Dawson's future by some very educated Doctors and look at him today. I have no idea what tomorrow holds for us, but today he is fine. Today he is free from seizures, and Today he has no developmental delays. Live in the hope of today because we have no control over tomorrow anyway. The greatest physician of them all has the final say in Trevors future. Trust in that Today. Our love goes out to you guys!!

Monica, James, Connor McGuire said...

uggghhhh...why did my comment not show up???? (slams head against wall)

basically the cliff's notes version was....neurologists suck. they are the GRINCH of the medical profession. Trevy will prove him wrong...he just has to. Love to you all!

Mmmmaaahvelous said...

Many hugs to all of you!