Sunday, June 7, 2009

Bennett and the Motor City Madman

No, not THAT Motor City Madman...I'm talking about the NEW Motor City Madman, a fella by the name of Dr. Harry Chugani.

I've written a little about the visit to Children's Hospital of Michigan and Bennett's evaluation with Dr. Chugani, now I'm ready to write a lot. I've had some de-compression time, some thinking time, some feeling time, and I think I can start putting some of these things down on digital paper.

You know what's funny? One of the biggest stumbling blocks I have had even starting this particular blog is that I did not know how to structure it. Do I go full linear mode, and go over things from start to finish? Do I do it in parts? Stretch it out over a few days? Purge it all at once? Maybe do a sectional thing, separated by theme? Then I sort of just said FUCK IT...just start writing, you over-analytical asshole.

So here I am. Just writing.

And just about the Chugani meeting. I have lots of other observations and thoughts about Detroit, DMC, gambling, smoking, family and I did take some nifty photos of Bennett, but I'll deal with all that later.

Back to the appointment with the good Doctor.

If you look at it simply from the perspective of how I defined the goal of this visit, we achieved our objective. Back on last Monday I defined our goal...We hope to have Dr. Yoda (Chugani, I am done with the nicknames for now) evaluate Bennett's condition and confirm or challenge the local diagnosis of Focal Cortical Dysplasia with Symptomatic Infantile Spasms, in the hopes of determining what the best course of action is for the treatment of his condition.

If you look at it from that angle, the trip was a success. We did achieve our goal. We did confirm the local diagnosis, he does have the dysplasia in his left temporal lobe, and we did determine what the best course of action is for the treatment of his condition, for the short term anyway.

Sort of.


There were a lot of wrinkles added to the whole thing that we didn't expect.

I gotta be honest. Despite the stated goal and my much publicized VENEER OF STRENGTH AND COURAGE, I wanted to walk in to Dr. Chugani's office, see the light emanating from the heavens, see the clouds part, hear the sweet sounds of the angels singing, see the well-endowed nurses in their tight-fitting (OOPS...wrong fantasy...where was I?)...anyway, my point was I WAS hoping for a more clear cut result. I was hoping for a miracle I think.

I wanted to hear something like...

Well, hello there Mr. and Mrs. Lilly! And Bennett! Greetings! Oh my yes, what a charming lad, let me see his chart, hmmm...look at his scans...hmmm, yes...why, of COURSE we can fix him right up! Just step over here to our Focal Cortical Dysplasia Removal Machine and Buffer...that's it, yes, right let me shut the cabinet door, turn on the switch and's your boy...FULLY CURED. Oh yes, we also thickened his hair, made his eyes a startlingly attractive pale blue, made him taller, more graceful, gave him the world's largest penis and he can now speak 17 different languages. That'll be $1674.32. NEXT!!!!!!!!!

Life is not like that. Admit it though...sometimes you WISH life was like that, don'tcha? Well, maybe not, but with your child, you do...or at least you want it to be a little easy when it comes to their health and well being.

But no, that was not what we got.

After the PET Scan, we went back to the hotel and it was wild, Bennett was just freaking out, never seen that before, all related to the drugs used to sedate him. He was loud, flailing about, it was a real effort to get him to the hotel without causing major scenes wherever we were. After that, it was Crash City. Jen slept, I wrote a quick blog in the dark, I then spent the afternoon after that gambling and losing (did I mention the swank casino hotel we stayed in? More on that in anothr blog) and drinking many a Starbucks concoction.

That night, we stayed in since Bennett was so incredibly woozy. When he was awake he would try to walk but take a few steps and go right into the wall or floor. Not good, he needed to be VERY tightly managed. He had slept most of the day and after being awake for maybe an hour or so and eating something he slept for about 16 hours straight (through the night). The next day we got up, packed our stuff, had a nice breakfast delivered to us in the room and packed up the SUV to go over to the hospital.

We got there a bit early, but everything moved along fast, and after a while we were in an exam room being seen by one of Dr. Chugani's residents or fellows, not sure who she was actually. Answered some questions (you get used to answering the same questions over and over, parents of any sick child, you know what I mean) and she examined Bennett.

She left and later returned with Dr. Chugani. Dr. Chugani was a friendly doctor, with an engaging and warm presence, but certainly not one to idle or engage too long with superficial small talk, and after introductions he got right down to business taking a look at Bennett. I'm not suggesting this as anything negative about his bedside manner, because I liked him a great deal. As a matter of fact I loved the fact that he was very friendly and engaging but he was MOST interested in getting right down on his knees in front of Bennett to take a look at him.

Bennett was well rested and in great spirits, which was good for everybody. He was super interactive. Dr. Chugani was very surprised, he later admitted, by this. As he later explained it, Bennett did have the left temporal lobe Cortical Dysplasia, it was confirmed in the PET scan and it appeared in that scan very much like it did in the MRI. What surprised Dr. Chugani was the fact that the PET seemed to suggest a rather large area in the right side of Bennett's brain that also had a malformation.

Basically, Dr. Chugani explained that when he looked at the data, the EEG, the MRI and the PET Scan prior to walking in that room, he was expecting to meet a very 'low-functioning' boy afflicted with Infantile Spasms. What he found instead was a boy who he would classify as 'high-functioning'. In other words, he thought that the RAW data, as it stands, MAYBE suggested a multi-focal epilepsy, something not able to be corrected by surgery, but Bennett's behavior and development suggested a single focus.

He said that if he had met Bennett first and NOT seen the data first, his very first reaction would have been to surmise that Bennett was a single-focus case. It was puzzling to Dr. Chugani quite frankly, and he admitted as much. In fact, he stated that he my even be 'over-reacting' to the area on the right side that appeared abnormal, since it might not even be something that is causing any issues inside Bennett's brain.

But it is there, that malformation on the right side. I saw it on the PET with my own two eyes. But as one of my dear IS Sisters reminded me over the weekend, a PET Scan shows hot spots, not the timing of said hot spots, so it is very possible that the appearance of the malformation on the right side is some residual effect caused by the discharge from the left temporal lobe. She referred to it as a secondary generalization.

Crazy to sometimes think I am writing about my son here...all these terms, these medical definitions. Nobody should have to learn about this stuff when it pertains to their children. Nobody.

But my friend's analysis makes some sense...especially considering what Dr. Chugani said during the meeting, that the key to ultimately determining whether Bennett could achieve Seizure Freedom from surgery would be to study him further using EEG technology, for perhaps a 2-3 Day or longer period. (Joy....NOT.) This might help to give more data to determine TIMING and FOCUS of the seizure activities and see where they originate specifically.

So ultimately he didn't say that Bennett was NOT a candidate for surgery. He also didn't say he knew for certain that he WAS. He was cautiously optimistic and seemed to lean towards Bennett having a very good chance of getting this all worked out surgically at the end of the day. But he felt that the only way to be sure was to have some more testing done.

He suggested we proceed with this specific plan:

1. Start Bennett on Vigabatrin as soon as we receive it from the Canadian pharmacy (it is not currently available in the US, even though it has been re-approved by the FDA, the paperwork is still not final on that).

2. Monitor Bennett's reaction to the Vigabatrin over the course of one month and each week increase the dose.

3. If Vigabatrin stops the seizures, keep him on it for a while, have him tested via EEG and see how he is doing in there.

4. If Vigabatrin does not stop he seizures, decide where we intend to have any kind of surgery and plan pre-surgery evaluative testing to be performed there. So if the insurance allows it and we decide we want to have any kind of surgery in Detroit, have the Detroit team do any of the further testing needed to confirm focalization of the seizures. If we decide it is going to be Cleveland we should have the testing done there.

He said this was important because the people involved in the surgery (should it be determined that he is eligible) should be managing any final stages of testing. I am not 100% sure why on this, I did not follow-up and ask. It will be tough to get a 3-day EEG done in Detroit, but not impossible. It just means even more time away from our jobs which is very difficult on our job performance, higher costs to get there, etc.

Why would any of that matter? It wouldn't, if this were a discussion about a surgery, but it is a discussion about a video monitored EEG, which I just don't understand why it cannot be done closer to home so it is easier on Bennett and easier on surrounding family. I mean, isn't it just the results and study of the EEG data that matters, not WHERE the EEG takes place? This part confuses me.

Anyway, there it is. The New Plan.

Seems fairly optimistic doesn't it?

Then why, oh WHY, do Jen and I feel like total Grade A Pasteurized Shit right now? Why do we feel like we are dealing with an even greater weight that we are struggling to lift up over our shoulders?

I don't know, we can't figure it out. We should be hopeful, but we are not. We should be energized about a plan, we are not. Can't figure out why. Can't be a sense of dashed hope, because it ISN'T a hopeless situation. There is hope for Bennett. Maybe it wasn't the clear-cut, definitive answer that we were looking for, but it was absolutely, 100% not a NO WAY IN HELL either. In fact, it was much MORE of a THERE'S A VERY GOOD CHANCE THAT BENNETT CAN HAVE SURGERY AT SOME POINT AND HAVE A CHANCE AT SOME FAIRLY NORMAL DEVELOPMENT.

SO why do we feel anxious, why do we feel so lost, why are we so depressed? And even more startling is that we are both feeling unusually angry this weekend. Especially at each other. We are at each other's throats in a way we have not been in a long time. We are clearly divided. It is very alarming.

And the bottom line is that I can't explain any of it, haven't figured it out. At all.

Maybe because when you read the final report analysis it seems very stark. Very hard to digest.

This is an abnormal cerebral glucose metabolism study suggesting a focus in the left medial and posterior medial temporal region. This would be consistent with a malformation in this area as seen on the MRI Scan. However, there are also other abnormalities on this study, including the bilateral parietal and bilateral temporal cortex. Portions of the parietal cortex show poor definition if gyri and should be further correlated with the MRI Scan to rule out focal lissencephaly. Further EEG correlation is also required.

Anyway, that was our visit with Dr. Chugani in a rather large nutshell. Bennett is to start Vigabatrin now, and we started him on it Saturday morning, wasting no time at all. He is not, I repeat NOT, seizure free from the first three doses of the Vig. I do not know how it works, but yes, we were also hoping that he would take his first dose, turn to us and say something like...

Hey, thanks for that...yup, I'm all better. DAMN that was a freaky buzzing weirdness in my head. Glad THAT'S over. Hey Pop, pass me that bottle, I could use a shot of that milk. Yeaaahhh...that definitely hit the spot. Say, you wanna watch some Spongebob Squarepants?

But is not like that. Even if you wish it was.


  1. I know exactly what you mean wanting someone to just say they can fix it. No matter what I know about IS and what doctors keep telling me about it, I still have hope that someone somewhere will say they can just fix it. And I, too, have alot of that hope pinned on Dr. Chugani.

    As far as the 3 day EEG is concerned, I think the reason for wanting you to do it where you will have the surgery is likely a software issue. When we have had EEGs transferred on disk, sometimes some of the data does not come through. In one case for us, it meant our Neuro was
    unable to see when we pushed the event button, so it meant they had to spend more time finding each seizure through the hours of recording. I think it makes it easier for them if all the data is captured there so they can more easily navigate it. I could be totally wrong though.....

  2. That actually makes a lot of sense. Just sucks because the Detroit VEEG technology is SO antiquated compared to here. There is no visual tracking so Bennett essentially can't walk around for as long as the test is run. He needs to be mobile, or he goes bananas.

    At least on the VEEG here it was a tracking video device so he could walk around the room.

  3. Ken, I am grateful for you writing and sharing your thoughts and progress on the next steps Doctors will be taking. My son and I pray for your family every night and you are all still on that prayer chain at church. I can't imagine what you are having to deal with at this level. I know how life altering events can take its toll on your relationships. My best advice is to try to take a step back and not worry about the petty crap that makes your last nerve snap and you snap at your wife. Vice Versa. Bennett is a blessing in your lives and I will keep praying he gets better and you both have the strength to deal with what is happening. I know your faith is out the window but, I know things will work out for what they are meant to be. Because they are uncertain it is hard to have any sort of peace about what's going to happen or what has happened. You are in limbo, which stinks but you will find some peace if you leave it in God's hands. (You know I never used to be like this but, I've had enough shit happen in my life and at first questioned it but, I now see WHY the things happened). Anyway, just know we are with you in our thoughts and prayers. Hang in there.....


  4. Yep the necessity of seeing a functioning brain, rather than just see the results, generally stems from seeing the active, and non-active areas during the exam.

    Imagine the brain as Christmas tree lights, but they don't always all blink at the same time, they need to see which ones blink, and when they blink. A functioning, active brain, is very different from an idle brain. They are going to want to remove has little brain matter as possible, and disrupt as little as possible; so the people that are going to do the cutting, need to be the same people that see the exam.

    I started new medication too, so I hope both mine and Bennett's do what they are supposed to do.

  5. The magic wand of medicine... When we went for our Early Intervention assessment last August, I was so much in denial that I actually went in the room expecting them to tell me not only was she perfect but had a higher IQ than most kids. When we went for the EEG (after we found out about the cortical dysplasia - yes, I know, most doctors find the seizures first) I fully expected them to tell me they saw one little seizure and they had a pill they could give me that would clear it up in one dose. When we went for the surgical evaluation I fully expected the surgeon to say "well you know its really tiny - I think we can remove it orthoscopically". Needless to say I have not had a magic answer yet even after the surgery. The first day we met the surgeon I was full sure that we would go home with a surgery date. No such luck. MRI, SPECTs scan, two day EEG... Until we had a date there was no way for me to feel grounded cause I did not know where we were going. And there were days when we looked at Emma's behavior during therapy and were really worried about her future. So, you can see that your reactions are the perfectly normal response of a couple dealing with such enormity, after the carrot dangling in front of them turned out to be just a signpost for another far away carrot that may or may not be edible.

    I'm sorry it is rough this weekend. I know it does not make sense to have to return to Detroit for a second time but no surgeon would trust a strangers data. And I don't blame them. They need to be absolutely sure before they touch my child.

    On the subject of the Vigabatrin, my neuro said give it five days on the full dose but I read of people getting seizure free on day 14. You're still titrating the dose, right?

  6. Ahh...well. The much awaited trip is over. From an objective view point, sounds like you have a solid plan of attack here. But you are feeling the way you are because these types of "crossroads" are never easy. Of course you want to hear that this is ok and can be fixed (but even then you would be afraid to believe...wondering if it could possibly be true?) but usually that is not what we hear. You have just been given a lot of information to digest and It will take more than a few days to really process everything. And I cannot promise you that this will get any easier, but I can tell you that what you are going through right now is the very worst part. The beginning is horrifying, no matter how you spin it. Things will get better, whether or not is because Bennett gets better or you learn to navigate your new normal, who knows, but it will.
    I'm glad you guys got some relatively decent news. Bennett is a beautiful boy, and his eyes reflect the spirit of a fighter.


    BTW...I agree with Liz. Different places have different settings to read EEG's, some are more sensitive, and some don't interface well.

  7. Hi Ken,
    I don't know if u remember me posting on the IS site aweek ago about 'incidental' extra findings on the MRI.Well That was a just a small part of it.Let me summarize our findings after testing my daughter.VEEG showed subclinical seizures coming from a region in the right frontal lobe.(same as 2 months ago)We have been in this battle for a long while and after we got the initial hypasrrythmia in control with the ACTH,this is pretty much what we have seen the last 4 years (persistent right frontal focus on the 5 or so EEG-'s. so we went in thinking we'll get the PET scan which will show us the focus and that will be it.well guess what? The FDG PEt was completely normal.So we stayed back another day to repeat an MRI and another PET (FMZ).You already know the finding in the MRI and let me tell u that when her case was discussed in the surgical conference they did not have a consensus on the findings since I guess they are pretty subkective.Now for the FMZ PET,completely normal in the area we expected to see the focus and instead what we found was an abnormality in the left parietal.Dr. Chugani asked to do a test on her to see if it was affecting her.Did'nt seem to.And after the surgical conference they have determined that she is a potential surgical candidate but we need to give a fair trila to other medications(like clobazam) that is exactly what we are doing now and plan to repeat EEG locally.I've researched a lot too about the remote abnormalities ipsilaterally and contrallaterally.But I am going to stop here.If you have any questions about those let me know if I can help.I don't know if sharing my daughter's experience makes you feel better but our emotions were exactly the same for a week after the visit.

  8. That sucks that the EEG equiptment in Detroit is the kind where you can't be mobile. By that do you mean that the camera doesn't follow Bennett around the room or that the EEG leads don't have enough play to move around freely?

    Either way, I bet they have different equiptment for the longer EEGs. That is how they do it at both of the hospitals I've been too. If you are just worried about the camera following him, I think they mainly need to see him during the seizures, so if you just plop him back in the crib during the spasms, you could probably wander around your room otherwise. That is what we do with Maddie usually.

  9. Laura:
    Happy to write about it. Writing helps me, always has. Got a good bud who would tell you that I would rather write than talk, and that's probably true.
    No worries about the Lord stuff. I don't mind prayer at all for Bennett. Hell, for all I know my lack of faith is hurting his chances to get help from God, though I think that would not be the way He would work if you get my drift.

    I can always count on you for a fabulous analogy. Thanks brutha...

    Appreciate that. Helps to have a person who has been through it tell you that you are going through exactly what you are supposed to be going through.
    Your statement about no surgeon trusting another person's data makes TOTAL SENSE. Also helps me wrap my head around it very well. Perfect sum up. Also the carrot sign thing is a great analogy.
    Umm...what does titrating mean?

    Yeah, each day removed from this visit gets better, and I presume each week will too. She and I are gonna have to figure out a way to better navigate each other as well as Bennett's condition.

    I do have some questions for you, how can I contact you outside this blog via e-mail?

    I actually mean both. Camera does not track and the leads are not very long. But I did not know that he only needed to be in front of camera if he was having an event. That wasn't the way the nurses made it seem. I'll need to figure all that out. Maybe they do have a different room for a 3-day.

  10. Well if it's totally normal. The being at eachother's throats I mean. And maybe it's the Italian in me...I don't know...but I actually think it's healthy.To fight things out. Because you're releasing some of the tension...and being transparent (perhaps in the not most constructive way) with each other. That you're scared and freaking out on the inside. We hit that patch...oh about 4 months into IS. The first 4 months we were kinda in that fuzzy I can't believe this is happening to me mode. And slowly over got better. Because at the end of the day we NEED each other. Because you know as well as I do...there are VERY few people who really truly "get" what you're living. And your girl over there...well she's one of em'! Not to be all life coach on you...cause Lord knows...I am SO not life coach material! But it IS normal.
    And I'm sure part of the funk is going there hoping to have a plan that had an ending. Not more waiting. And now you're back to trialing meds...and waiting...and it sucks.
    It's weird. But I think I've actually stopped hating the waiting so much anymore. Used to drive me absolutely insane. Now I'm sending very placid emails back & forth with Dr. Neuro about trialing meds with mortality warnings on their labels. Weird...


    Blog it all out...


  11. Oh shoot...and last thought. I would totally do the EEG at home where Bennett can be mobil. Trevor would claw his eyes & mine out if he had to be stationary for TWO days. That's nuts!

    Okay...I'm done..I need a shower desperately. I taught preschool Sunday School tonight. I didn't know there was full moon!


  12. Titrating = Working your way gradually up to full dose. Emma started on 250mg once a day and worked herself up to the max dose for her weight which was 750mg twice a day.

    My trick of the year for EEGs is bring an exersaucer and put it in full view of the camera. If you have to push the bed over go ahead.

    Curious about the sedation giving him a bunch of energy. Did they give him Versid? Emma gets extremely hyper on versid, vallium and anything that begins with V.

  13. I know the EEG's suck (we've done out share) and yes it sucks being "chained" to the bed at Detroit Children's too. We have begged for at home EEG's but Chugani always tells us that they aren't sensitive enough, they don't hook up as many electrodes. He also tells us every time we need the VEEG...we need the video to see what he is doing, or what is happening at the time of the seizure. In one case they thought they saw a seizure on the video but it didn't match up to anything on the EEG read out. Come to find out after we went and watched the video, that it was a balloon on a cartoon that Daniel was watching and he is afraid of "floating" things. Because of the stiffness in his body from his CP, when he startled from seeing the balloon, it looked like a seizure.

    Chugani likes his EEG department, doesn't like the outside/at home EEG's. Sucks yes, but if he trusts his do I. He hasn't steered us wrong yet.

    Daniel also takes has been our wonder drug. Daniel was a definate No for surgery because his brain malformation is bi-lateral.

  14. You have a plan and a great medical support system. Have faith in that. Give the Vig more time. What dose is he at? How quickly are you increasing? What will be his max dose? Chugani definitely knows Vig so I know he'll make sure Bennett gets a fair trial on it. Fingers crossed that it will kick in and start working!

  15. Those words are all too familiar. I wanted to be level-headed going in as to not have my expectations too high. But, I honestly think it's impossible NOT to desperately want him to say that it's a clear cut YES. We were both (you and I) holding him as THE one to figure this out. And getting a "maybe" or a confusing, complicated answer is unsettling. This is not to take away from his amazing-ness. Not at all..I still have more respect for him than anyone we've seen and probably will see in the future. I just wanted the simple "yes". Just like you.

    By the way, you asked about our underlying cause. He suspects multi-focal cortical dysplasia. Not good. But not a closed book either. He said with time it's possible that it will either settle to one side or the EEG will calm down and be more precise. Our VEEG was a total mess. It was impossible to correlate anything with the PET scan. We don't have a "next plan" with him until it clears up a bit. The PET was a confusing ordeal too. Go back and read "Part I" of my blog from March 09. It's our re-cap from our trip.

    But, hey, keep your head up and hang in there! It's takes a good while for it to really register. And even though it's going to be more of a wait and more testing than you were originally hoping for, it's still very positive!

  16. Hi Ken,
    U can e-mail me at
    Hope I can be of help.

  17. I am so glad you were able to explain everything so well...It really sounds like this is just Step One in a Three Step deal....Next will be the second round of tests...And then, hopefully the surgery will come quickly after that...(Who knows? Maybe the new Rx will be his miracle and you won't even have to go there!!!)

    From reading other blogs, I have seen that this is not unusual to have to go further before the decision is made...I know it would have been so much easier with a clear cut "yes" or "no" with this first trip...But, hey, y'all are members of a very "special" club now....(Oh boy!)....It's the "Nothing Is Easy Club"....

    Keep us posted....And thanks for all of the wonderful photos on FBook!


  18. Danielle:
    The fighting is probably very normal. But it also just adds pressure with no release. There's a middle ground somewhere I'm sure.

    Glad Vig helped you guys out. I'm hoping we have good results.

    He started at 500 for one week. Next week we go to 1000, and then up another week to 1500, I think we stop there, not sure.

    Thanks for the explanation and thanks for the Facebook Friend Request. Went back and looked at your Part 01 and other pages.

    Thanks...yeah, it's step by step, one by one. That's how it goes.


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