Friday, June 26, 2009

The Cleveland Clinic

As any follower of this blog knows, Jen and I have been wrestling with the decision about where to focus the care management of Bennett.

Do we do it locally, at Nationwide Children's Hospital of Columbus, where this all started? We actually really like the latest Epileptologist we have been working with, we like her a great deal.

Do we do it in Detroit? There, the management of his care would be led by one of the more well-known names you hear when you look for doctors familiar with Infantile Spasms. But the insurance company has told us that our initial consult was fine, but they are not going to be covering any future visits to Detroit as 'In Network' and therefore we'd be on the hook for a ton of dough...possibly in the tens of thousands of dollars.

Or do we look into the Cleveland Clinic, a hospital 2.5 hours north of our current location that is in our insurance company network? Cleveland Clinic has a very respected Children's Hospital, often considered one of the best in the nation, and in the area of Pediatric Neurology and Epilepsy it is VERY well-respected. I also learned recently that they are well-known in inner circles for dealing with surgical cases involving cortical malformations, which my son happens to have.

This is not an easy decision for ANY parent to make. You can imagine.

Several weeks ago, maybe a month or so, we arranged to have an appointment scheduled through the online service for Bennett to be seen at Cleveland Clinic this past Wednesday, June 24. Lately, we had been wondering whether we should actually go up for this scheduled visit.

We had been feeling very weary lately, were getting better vibes from our local hospital with the new Epileptologist, knew we were waiting to see if the new drug Vigabatrin would actually do the trick, and while we DID want to go check out Cleveland Clinic at some point we didn't want Bennett to have to go through the agony of getting leads placed for a useless 20 minute EEG, something they required for the initial consult, when we already knew that the next logical step in his treatment would be a 2-3 day in-hospital video monitored EEG.

We had not been able to reach anybody about changing the format of the initial visit for Cleveland, so we thought of just outright canceling the appointment and then calling another area of the hospital for a newly scheduled one, maybe even doing it as a formal referral. Then again...waiting is just that...more waiting. We needed to make a decision, and our mental states made it tougher.

This past weekend was bad for Jen and I. We were zombies much of the time, the rest of the time we sparred. Probably because Bennett's seizures were SO massive, and as heart-breaking as they ever have been. But somehow, through all the negativity, we managed to come to a mutual conclusion...we decided FUCK IT, we were going to Cleveland and keeping the appointment, no matter what. So Bennett had to endure a couple of hours of shit for a short-term EEG he really did not need, we should go and not try to re-schedule.

On Monday, we booked a hotel last-minute, printed maps and planned the route. The hotel part was necessary because of the timing of the early morning EEG, and we did not want to be stuck in traffic, especially having not been there and not being confident in the route.

We left Tuesday afternoon, spent the evening together in the hotel room, playing and laughing. Bennett had fun there (after I re-arranged so he could run around), climbing on furniture and running back and forth between the two rooms. That's ice cream sandwich on his face below.

The following morning we walked over to the hospital since the hotel we stayed at was merely a block away. We arrived in plenty of time, went up, waited a bit and then we went back to one of the EEG rooms and got started.

I've now seen four different facilities hook Bennett up to leads for his 6 EEG's, with a total of 6 DIFFERENT people doing the hook-ups. This hospital's EEG Technologist used the adhesive method, with the compressed air and direct contact of electrode to skin that freak Bennett out. The Tech was great though, lightning fast, super friendly, very encouraging, and she engaged Bennett as much as she could. This was the first time he was not strapped down or taped down, they let Mom lay down beside him and hold him during the attachments pinning his legs with her legs while another tech held Bennett's arms, a technique I had not seen yet.

There was something very basic, very human about that one thing. Having Mom in his face helped him. I could see that. I was already impressed. The leads were on in less than 20 minutes, and the EEG began. Did the light thing, all the stuff prelim EEG's do, and then we tried to get him to settle and go to sleep.

He settled, and then true to his form, sat up and had a MONSTER set of seizures right there while hooked up. That's my boy!

TANGENT ALERT! See I need to put that in perspective here. Every time, and I mean EVERY time, he has needed to have some seizures in front of somebody he does. He did for his very first outpatient EEG, and every one since. He's had them in front of therapists after we explain to the therapist what they are. He had a set in Dr. Chugani's office, in all the doctor's offices here in Columbus. It's almost like he dials it up when he has to. Like some kind of epileptic super power.

And like I said, during this particular EEG he had a MONSTER set. Well into the 90's and lasting around 14 minutes.

Another interesting side note, though not worthy of a 'TANGENT ALERT!'. Most EEG tech people and even Epileptologists and Neurologists see all kinds of seizure activity during their EEG's. The general rule of thumb for a seizure is that you, as a parent of the kid having the seizures, need to have a rescue med, something on hand, to stop most seizures if they are lasting too long, say beyond 4 minutes or something like that.

At the 5 minute mark, the tech is getting antsy, making calls, paging docs. Asks us if we have any rescue meds. We tell her no, this is common, and many doctors have told us (including Dr. Chugani) that with Infantile Spasms it is a bit different, that since they are clusters of spasms rather than straight-up seizures, the overall duration of the cluster is not something to be as concerned about as the actual spasm seizure length. If that spasm started lasting or froze, we'd have a problem that would require a rescue med.

There are a TON of differing opinions about this in the medical community. Personally, I lean on the side of no rescue med for IS, simply because all you are doing is knocking the child unconscious for 2-3 hours, and his hypsarrythmia is active whether he is awake or asleep. But what the heck do I know...I can only go by what the doctors I have seen have told me.

Anyway, now there are two docs in the room, talking about admitting him to the ER, this was at the nine minute mark I think. They call the Doctor we will be seeing later that day and ask him what they should do. He told us this later, but his response was 'What are the parents doing? Are they calm or are they freaking out?' He was told we were very calm, so this Doctor said 'Then send them up to me, do not send them to the ER.'

I liked that. It showed me that this new Doctor was a very bright guy. It showed me that he was familiar with IS enough to have seen and heard of clusters going that long and he had the street smarts to know that if the PARENTS were calm, it meant that it was an event we had some familiarity with and it was not something that required panic. More on that later.

Anyway, the cluster ends, and they decide to leave the leads on JUST IN CASE the new Doctor, after examining Bennett, decided to do any additional EEG monitoring. Made sense. I carried Bennett myself up to the 7th floor for the follow up exam. A short time later, the new Doctor walked in and introduced himself.

His name is Dr. Deepak Lachhwani, and he is the new person in charge of Bennett's care from this point forward.

I liked him instantly, he had a casual confidence with no arrogant side dishes. He had a way about him...a smoothness to the way he moved, a calmness to the way he spoke. If I was still nick-naming doctors and not using their real names, I'd call him Dr. Andy Dufresne. I know this is totally difficult to explain, but on pure instinct alone I knew he was the one. Everything he said, everything he did, after that first introduction simply confirmed this feeling.

We shared Bennett's history, he listened, took notes. Asked some questions. All the questions I expected him to. Had the reactions to our statements I expected him to, but even above and beyond expectation. I don't know if this made any difference in our meeting, but I was a lot more confident and more direct than I had ever been with a doctor, I talked a lot. So did Jennifer. I think she sensed a connection too.

We exchanged thoughts about single-focus and multi-focus aspects of Bennett's PET Scan, and the questions raised about the possible abnormality on the right side in the PET. He asked us if the abnormality on the PET was also on the MRI. Our answer? No. His answer? Good. PET is hypermetabolic and some such...MRI is a more visual map of an abnormal structure. Though he would need to actually SEE all the films and possibly run another if not several tests, that bit of information he was very upbeat about. Hell, even Dr. Chugani suggested that the PET reading of that right side weirdness might not be an issue.

Dr. Lachhwani listened as I explained various characteristics of Bennett's seizure events, and what happened to his right arm as opposed to his left, how often he would actually flex fully forward, how he would tuck in his right leg and leave his left straight, his visual tendency to the right during the clusters and his movement towards turning right during them. I was very, very detail specific. It's my nature.

I talked about how the clusters started, what they looked like when they started, and how they have evolved. I told him I had video of the first cluster set, and comparative video I take every once in a while to show how they are changing. He said he'd really like to see that at some point. I told him no problem, I'll get that to him.

After a while, he actually asked us what we do for a living, because we were so knowledgeable about Bennett's diagnosis, his options, procedures, details about what we had been looking for and recording, etc.

He something along the lines that he wished that every set of parents he saw were as passionate and as researched and decisive about the conditions of their children. I didn't tell him that we spent the weekend arguing or being zombies and totally IN-decisive about this trip. I just accepted the compliment and moved on. Though I suspect we did seem decisive, because like I said, I had made my decision already, I just needed to confirm it with Jen, but she had already made it too.

By the end of the exam, we had a plan. He gave us some paperwork to get records sent from both hospitals to them. He said he wanted to do the 2-3 day inpatient EEG very soon, in the next week or two, as soon as they could evaluate the reports they had (copies of all the tests that we had and had given him) and the EEG data they had just recorded. He said they would call us, BUT...if we do not hear from Cleveland Clinic by Tuesday, call his office directly and tell him.

Keep the Vigabatrin at 1500 and do not increase, let's see if in the next couple of weeks it does anything, but let's not wait while we are waiting, let's do the inpatient EEG and get that going. Let's get all the data we need and present the findings to the surgery review as soon as possible. I asked him...What happens if we schedule this inpatient EEG and it's two weeks from today and by that time you do not have the PET and MRI films in hand from these other hospitals?

If I had any reservations, any lingering doubt about making the monumental decision to totally transition Bennett's care away from a hospital that was 20 minutes away to one that was 2.5 hours away and a lot more costly, the next statement from Dr. Lachhwani terminated them utterly.

Don't worry about that. Do NOT reschedule. If the other hospitals are reticent to give out the data, or they drag their feet (as hospitals often do when you transition care away from them), we will not slow down the treatment for Bennett, that is the number one priority. If they do not send their test results, we will re-do them here and get them approved. The only thing that matters at this point for you as his parents and me as his doctor is treating Bennett, and we will do it on our terms.

We shook his hand and thanked him, and we left the examination room to take Bennett downstairs to get the electrodes removed from his head. In the elevator I began to cry, the tears were streaming down my face though I was able to keep from sobbing. Jen looked over and was stunned. Oh my God are you OK? What's the matter I thought that went really well?

I told her, as I tried to keep the waterworks from fully opening, that it DID go really well...that's why I was crying. For the first time in a very long time I felt very good about something when it came to treating our son. For the first time in a very long time I felt a sense of tangible direction. I say that I am hopeful all the time, but it's usually a lie. Scratch is not a lie, I am hopeful when I say or write it. It's just usually VERY subdued, and controlled, and not something all that powerful.

But this was different. I REALLY FELT a type of hope on a level I had not experienced in what feels like an eternity. Big difference. And in the past, when I would feel ANY tinge of hope in me I would push it down, because hope is SO easily crushed in this journey we've been on with Bennett.

I was hopeful in Detroit, but I also learned at that time of a possible new thing on the right side of Bennett's brain and I knew we weren't going to be allowed to come back with full insurance coverage. So that hope was VERY tempered.

But for some reason here, at this hospital, at this time, I did not push it back or deny it. I let it wash over me like a river for as long as I could stand it. Then I got control of myself and went in to help take the electrodes off of Bennett.

Look, I'm realistic.

Things do not always go according to plan, and often when you come back from doctor visits or when you start a new medication or something like that you have unrealistic expectations, feelings of relief and hope, etc., and they quickly explode into a million pieces in a few minutes, hours, or days.

So I don't let those hopeful emotions linger, I control them, put them in their proper place and perspective.

The fact is, that as of now, today, there is no change in Bennett's condition from how it was on Monday, or Tuesday, or Wednesday, etc. The fact is, that we are going to be at this for a very long time. The fact is, that even if he is considered eligible for surgery after the next rounds of tests, and after we figure out when to schedule it, and if we make it through the surgery with no complications or problems there are still no guarantees that he will be seizure free. There are no guarantees that he will not be delayed, need help, have seizures. There are no guarantees of anything.

But we weren't looking for guarantees this week. This week we were looking for a place and a group of people who could provide the best possible treatment and the best probable outcomes we can shoot for with Bennett.

And I believe that this week that's exactly what we found.


  1. WOW....WOW....

    Now I have tears streaming down MY face.....I could just FEEL your peace of mind....And your very controlled hopefulness....I am SO impressed by what you have experienced....And the thought of your insurance not being an issue?...Well, that takes ALOT of needless pressure off of you both....Congratulations....I do believe y'all are "home".....

  2. What Colby said.

    This uplifted my evening!

  3. Wow I actually teared up a bit reading this one too....That's awesome Ken! Really glad to hear that you've found the right guy to work through this with...

  4. I got chills reading that one!! I have to admit...we are on our 5th neurologist and i haven't had that feeling about any of them!! Sounds like you've found a keeper for sure. I can tell the sense of peace that you are at right now, and that is encouraging. I needed this post tonight...have been in a MAJOR funk all day today, just wondering when things are EVER going to get better. Give your cute little guy some hugs for me! monica

  5. Peace and plan .. two words that go nicely together.Like the sound of it.

  6. Thank God, someone who gets it! 'Bout f*%$in' time.

  7. Now I can breathe a huge sigh of relief. I'm so glad that you have a plan. Having a plan you trust and a doctor you trust is everything. Of course, no one can know the outcome but being in a place of trust is incredibly comforting. Your doctor seems to be very smart and "gets" this IS. And much as I hate to see Bennett going through mega clusters I am glad that the team saw it because they treat him with the urgency he requires. Still there for you brother!

  8. Hi Ken,
    U sure made me feel better.

  9. First of all...Bennett is too stinkin' cute!!

    That was a very impressive post there! Finding a connection with a doc does not come easily. We're still looking. Makes me wish I wouldn't have cancelled our appointment for the 23rd at a new hospital. He could've been the one. Anyway, it really sounds like you all have a good solid direction and plan. He seems extremely compassionate and aggressive towards Bennett's care. You and Jen followed your gut, and now you can breathe a sigh of relief that the decision has been made...and you are at peace with it. Sounds like it fell into place perfectly. Insurance coverage and a wonderful medical team. Glad to hear it!

  10. First of all, to anyone who has commented here, my apologies, you all sounded so upbeat. Well, my follow-up today was pretty shitty, sorry. But that's life, what can I tell you?

    Thanks...and yeah CC felt like home. Now all I need is a time accelerator so we can get back up there.

    Glad it did. The experience itself was uplifting for all of us.

    Thanks, yeah I really like him.

    Sorry about your funk, I totally get it. I'm funked up again myself. Hugs passed along.

    I prefer 'Peace' and 'Pipe', but that's just me. :)

    Thanks...we actually really liked his Epi here in Columbus, but we just had too much water under the bridge with the entire experience at the hospital before we found her, so she suffered because of her surroundings.

    Well put, especially in light of today. I am relieved, but the day to day watching of this shit, yeah, blows. I've had just about enough of seeing Bennett suffer. But at least we have a place to go now and get it accelerated.

    Glad you feel better!

    There was a 'falling into place' vibe to it. Have you only seen Ped Neurologists or have you seen Ped Epileptologists? We haven't seen a straight-up Neuro since the beginning. And I hear great things about Texas Children's that where you take Austin?

  11. I can't emphasize enough how important it is to find a neuro you connect with. Deeply. It makes all the world of difference...


  12. Danielle:
    Yeah, I think that's true of a lot of docs...if you can synch up mentally it's nearly half the battle.

  13. Before I go on to read the shitty post, I wanted to say that I am so glad you got that connection with your neuro. It's funny how you just know when you find the right one. I felt it with Chugani, and with KC's current neuro, but it took me years to find them.
    This is a huge part of the battle


  14. I am so sorry to hear about the crappy seizure weekend. Hopefully this new doctor will be the one to put things right and to really help Bennett!

  15. The Battleground is chosen, next step look yourself in the mirror, and choose your weapons.

    May you cry many more times, like you did this time, for those were the tears of joy.


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