Friday, June 19, 2009

We'll Always Have Toshi Station

Bennett had an appointment today with an Epileptologist who he has seen before here in town. I haven't written much about her, the new doc, only because I was going to put those experiences in the 'History' section, and wasn't sure how much I was going to write.

Don't get me wrong, I think very highly of her, she is the doc who prescribed Vigabatrin for Bennett a month or so ago, without hesitation or reservation (RESPECT!) and who we saw before we went up for the Detroit tests.

As far as appointments go, there isn't a lot to talk about. The plan is to continue to see how things go with the Vigabatrin, and then advise her in a week or so about his progress. There was some talk about the PET scan, about other tests that might need to be performed to determine whether surgery would work for him, etc.

Now, you might be saying...Hey...Lilly, this is not like you, you usually have textual diarrhea in here, why are you playing it so close to the chest?

Well, because I don't know what we are going to do.


Here's the thing.

Like I have said before, we have to, as parents, make some decisions that we have not made yet. Where is Bennett going to receive his primary care and, if determined possible, his surgery? And I think, actually, that until that decision is really MADE, there is going to be a tepid nature to these local visits.

I'm sure this hesitation on our parts is something that is not hurting Bennett. We still have steps that must be taken twixt now and then, but we really need to shit or get off the pot fairly soon and make some choices. I'll talk about those choices later, but for now, let me address The Big Question, the one I get pretty much every day.

How is Bennett doing on the new medication?


Now, before you start celebrating, always remember the words of Winston Wolf from Pulp Fiction. And just to be fair, I am going to write it here in white, if you wanna read? Highlight the blank area...if you are easily offended, just go down to the next paragraph, K? After Jules and Vincent express some relief as if The Bonnie Situation is resolved, Winston reminds them...Well, let's not start sucking each other's dicks quite yet.

Yeah it's harsh...but hey, sometimes HARSH is how I feel.

If I can lay it out in a Novakian manner, he is having less seizures, that is a fact. They are less intense at times, that is a fact. Sometimes they are just as intense, that is a fact. He is still having, on SOME days, upwards of 100-150 a day, that is a fact. Some days he has had maybe 40-50 only, that is a fact. He is not seizure free, that is a fact. We still have twice as much in the way of dosage increases twixt now and when we'd have to call it a failure, that is a fact.

He is, however, much more energetic, lively, engaging and apparently happy. I'm not sure if this is because of the Vig or because of the fact that he is finally almost totally off Keppra and Topamax, two Zombie-riffic medications. This past week he has engaged in a couple of behaviors that are 'new', that may show some level of cognitive awareness that he previously was not showing.

Now, why am I saying it like this? So...I dunno...timidly? Because you have to understand what all this means.

Not a lot.

My IS Brothers and Sisters will understand EXACTLY how I feel, but those of you who do not fall in to this category, I write it this way for YOU, because you have to know that if I say Bennett is doing better on a medication, you cannot view this the way someone says they feel better when they are recovering from the flu.

No corner has been turned here, is what I am trying to illustrate (badly). There is progress, there is cause to be positive, there is cause to be hopeful, but we are a long, long, long way until Bennett's problems are solved, and they might NEVER be.

That is the nature of the disorder, and I am trying to talk about some interesting progress with Bennett that I saw this week and be sure that those not familiar with how this ride works don't start celebrating because I say Bennett is doing better.

He is better than where he was last week, but it might not last, the Vig may fail, his condition may flip and get worse...all that shit happens on these med trials with this disorder.

If blowing up the Death Star is actually having confidence in seizure freedom with an apparent return of cognitive and developmental abilities in Bennett that show that he can have a good chance at a fairly 'normal' life, then we are still on Tatooine, whining about not being able to go to Toshi Station to pick up the power converters.

Hope that puts it in perspective.

Now that I got THAT out of the way, what has changed this week? Allow me to be specific. Here are a few examples.

1. Someone sings Row, Row, Row Your Boat...Bennett sways and makes a distinctive 'R' sound and tries to mimic this. You can almost hear the sound 'Ro' repeated. That's pretty big. Repetition of what he sees and hears and then trying TO COPY IT is key to his ability to learn and retain and grow mentally. It is possible that this Vigabtrin is maybe calming the overall hypsarythmia. No way to know that without EEG data.

2. You know how you put your hands over your face and talk...'Where's Daddy? Where'd Daddy Go? Can't Find Daddy? Who's Your Daddy, Bitch?' Oops, not that one. Anyway, then you open your hands and say 'PEEKABOO!' or 'THERE HE IS!'. Now, before last week Bennett essentially ignored this tried and true classic. As of this week, he does engage, and he even will grab your hands, pull them down just to get to the 'carrot' of the smile/laugh faster. That's big.

3. Up until now, Bennett has shown little to no interest in the Television. This week, he has watched some, for upwards of around 4 minutes, without going somewhere else. That's a big deal. Sustained interest in an activity, especially a 2-dimensional one, is important. He generally does not stay focused on any one thing for long.

Anyway, those are the top three. I mean, let's be blunt, the boy is SERIOUSLY DELAYED. He cannot communicate even the most basic of concepts to us. He doesn't know how to tell us he's hungry, thirsty or anything. Any signs we taught him prior to the start of this are gone. But...he is doing some things that make me wonder if something is going on in his noggin that is allowing his brain some rest time in order to learn.

We'll see.

Some of you might think I should be more hopeful. I don't disagree. I am cautiously optimistic, but I usually am when it comes to this. But even though we have only been at this for nearly five months, I have seen changes happen, things look good and then see them go bad. You have to be steadfast against the ups and downs, to preserve your sanity.

But you know me...I'll always keep you posted.

For anyone keeping score, the next steps are:

Ophthalmologist appointment tomorrow. Jen goes solo since I took care of Bennett today all day.

Neurosychology appointment is being scheduled.

Continue with his Occupational, Physical and Speech Therapy. Speech is three times a week, OT once, PT is once a month.

Evaluate his behavior/seizures and advise local doctor. Vigabatrin increase again tomorrow, Keppra cut by half again tomorrow. Topamax gone in five days. Zantac added.

Jen and I need to make a decision about Cleveland Clinic. Do we investigate that as the next option or try to return to Detroit or try to have his care managed locally? An appointment was scheduled for next Wednesday at CC, but we probably cannot keep it because all our records are not in our hands. We may have to reschedule.

And that's the latest.

I have GOT to start writing shorter blogs.


  1. Cautiously optimistic is good.Tends to be my mode of operation.Least I get nailed with that giant anvil,while catching speed,like in the beloved Roadrunner cartoons.Always hated that cartoon.My better half,and he is better,is definitely a glass half full me,"When I see a glass with some water in it, I don't wonder whether it is half full or half empty, I wonder who stole the rest of my drink, dagnamit."Seriously though,you are doing right now, all that you can do.And that is enough.Side note:Please don't shorten the post.They are great the way they are.

  2. Definitely do not shorten your posts.....One area of elaboration in this post was something very important, the explanation that better is so relative. It is so hard to explain to people who haven't been through this.....

    Those improvements in Bennett sound awesome though. And it does totally suck because there is no way to know if it is from the addition of a new med or the weaning of the old. But I am glad you are feeling good about what you are seeing.

  3. Bennett is having an incredibly rough time and I am glad he is having an easier week of it. I hope it continues to improve.

    I can completely understand why you don't want to go over the top with celebration. No one knows how this will play out. And, as I have experience of this, giving any positive news leaves your self open to the "see I told you he was going to be fine" which is a gateway to "I know this girl who had epilepsy and she's in her final year of Harvard" or "my poor dog has epilepsy". If anyone is reading this and has said either of these before, I know you were only trying to help but as a mother it is like a kick in the gut when facing the incredibly scary realities of IS to have the person I am sharing with give me an answer like that. I have screamed at people, including my own family, "you do not understand how serious this is". The thing I still do not understand myself is that with such an innocent name "Infantile Spasms" you would think people would remember it and take the time to google it. And be horrified that little children, who cannot tell you anything about how they are feeling, are suffering through this.

    I am so glad that Bennett is getting a little bit of an improvement with the spasms. And, his "little things" that he is doing are HUGE progress. Yes he is behind and you will have to deal with that but he is ahead of where he was two weeks ago and that is huge. I forgot to tell you that one of the odd things that happened us with Vigabatrin was that Emma watched TV for the first time in ten months.

  4. OK, so you haven't turned a corner, but the baby steps are headed in the right direction at least.

    Since he appears to be engaging mroe, have you considered PECS? Perhaps now is teh right time to start. If you are interested, let me know, I have discs of pictures you can get started with.

  5. hey how did you make the disappearing text?

  6. I LOVED & appreciated the way you set the stage...before introducing "better" Bennett! Because that is our reality...things are always shifting. We celebrate the discoveries or reduced seizures of today...but always with that wiggle of knowing it may not be there tomorrow.

    It's slow finding the balance...and certainly I'm not entirely there...of embracing the good. And not worrying about the potential bad of tomorrow.

    I know the decisions you guys are facing are weighing heavy on your hearts. Saturating your lives. And I know it sounds a good friend often reminds me...

    Any decision made with love is the RIGHT decision!



  7. By the way, what is a neuropsychology appointment for?

  8. Connor is having the same effects with the Vig!! totally happy, and much more pleasant to be around. interested in peekaboo and a little more in tv. he is making more vocalizations (he has never said a word..only sounds)which is a huge step. but i too am cautiously optimistic and i'm not about to totally give it 100% endorsement. the seizures are somewhat better but he is STILL having them!

  9. Very nicely done my friend! Well written with great movie references. And thanks a lot BTW, now I have to go out and rent and re-watch for the severalith time Pulp Fiction!
    I'm glad you have a few hopeful signs to track as you continue to track all the rest.
    Praying they continue and grow, and that you are getting close to when Gredo gets it in the gut.

  10. Your blog continues to just make me laugh and keep me informed..Are those two things that should be together? Where in the world do you get the perfect pictures! Just poking my nose in to see how things are going...Any good come from Dr Chugani?? Such a nice pic with the question mark on it! gawd! LOL

  11. HEY I cant hear your videos! YES my speakers are in fact on....I think.

  12. It amazes me how reasonable you are, and your expectations, in the 5 months you have been dealing with this(Feels like a LIFETIME, I know!). Your are so right to be cautiously optimistic, as every day can bring something different. My motto is we are living one day at a time, as every day is different. We are trying Rufinamide (Banzil), titrating up every 7 days. It is a wait and see game for us too, every day seems to be different.
    As far as cognitive changes, big or small, do a mini celebration, dance, whatever...cognitive changes for the better means something is "clicking" in that moment in time. Can it change tomorrow? Absolutely, but celebrate in that moment, it's o.k., as those bad days can creep up on you fast.
    Being in the "trenches" of this illness for 1.5 years, I know the fears and the HUGE decisions you have weighing so heavy on you,no parent should ever have to contemplate and make such decisions.
    I will lift your son up in prayer,as you sit, watch, and wait for this drug to do it's magic.
    I pray you will find peace in all the difficult decisions that are weighing so heavily on you, and that your son will be right where he needs to be.

    Thanks for always keeping it real...


  13. Hmmm, I was preparing a nice little comment in my mind while I was reading this post...but it looks like everyone else already beat me to the punch!

    Bennett's latest developments are wonderful cognitive breakthroughs. Those are key connections he's making. A lot of people have had great cognitive success with the vig. Us? We didn't see many until we started the wean. But, like you said, it could be the weaning of the others too. Celebrate it either way...cautiously optimistically!

  14. Enjoy those, "Where's Daddy?" play sessions! :)

  15. Heather:
    Great comedian once said 'I'm a glass half-full kind of guy, except what's in the glass tastes like shit.'

    I do tend to ramble on, but I enjoy writing, so what the hell? And sometimes it takes a lot of writing to get what I want to say out...but I think I violate some Blog Etiquette by doing such long posts. :)

    The TV thing is interesting isn't it...I did not know that about Emma. But yeah, he is definitely more interested in the TV than ever before.

    I don't know exactly what the neuro-psych appointment is for. I think it is to just create a developmental baseline.

    PECS is something I have considered, what kind of costs are we talking about for it? I made the disappearing text by using my own HTML code.
    NOTE: I tried to show you here, but blogger won't allow that level of code to be shown here even though I altered it slightly so it would read as text. I can e-mail you the code.

    Balance is key, and not just on the overall, hell I struggle right now with DAILY balance. I am up and down and all around in the course of the 16-18 conscious hours I experience.

    Same page. Glad to hear you had some good stuff too with Vig.

    But in my version, HAN SHOOTS FIRST.

    Absolutely. To me, humor is one of my strongest medicines against tragedy and difficulty in life. I learned a LONG time ago, dealing with my own difficulties in childhood that humor was a WMD when it comes to fighting the feces that Life's monkeys throw at you.
    And as for your sound, not sure what to tell you. I hear them fine on both my computers and they are just YouTube embeds so they should work.

    Thanks...and yeah, I appreciate hearing support like that from a vet such as yourself. Very inspirational. And yeah...celebrating the mini victories is a good thing.

    Yeah, but I know you would have said it if you had seen the post sooner. :)

    Absolutely I will.

  16. PECS- no cost. I have the disk. You will just have to print. We cut them to a small size, then laminated them. We put velcro on the back. We used a binder to store them. We'd put velcro on the front of the binder and work on a couple a week. Another idea is to put magnets on the back of the food ones and stick them to the fridge. When you get him milk, do hand over hand, have him give you the picture, say milk, give him the cup, say milk again. So he can see the cause and effect of "giving" you the picture. Make sense?? Getting him to give you the picture is step 1, working on saying the words is step 2.

    Email me your address and I will get the disk to you.

  17. I read this post and all of these comments with amazement...All of you are very, very wise...

    Ken, you are striking the perfect balance between optimism and realism...How did you get so smart so fast? I mean, you have only been at this for 5 months! (I know...."only"...)

    With Colby, I try to keep any expectations as low as possible so that my inevitable disappointment isn't so great...Just one of my protective devices...Because you don't ever know for sure what's around the corner with these kids....But we are human, and we hope...And we have seen cures...And that keeps the hope going....

    You continue to impress me with your thoughtful insight....I learn from you with each blog...(And I am also entertained!)


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