Epilogue

The last thing we did before leaving the hospital was a 'High Density' EEG where they use a whole cap packed with sensors, as Adam is modeling here. We checked out of the hospital about 11 AM on Saturday. We weren't up for major sightseeing, but we did drive down Elvis Presley Blvd and saw the entrance to Graceland. Just the neighborhood itself was interesting with the Days Inn that had a guitar shaped pool and all 'King' sized beds and all the souvenir shops. Pretty kitschy.

At the time of this writing, we've been home about 24 hrs now. It sure is nice to be back. It was great to get to sleep in a dark room for a change; amazing how one takes a little thing like that for granted.

Even though we were a bit disappointed with the lack of new options there were certainly some positives outcomes as well. Basically, we could have been given some pretty bad news and didn't. I'm going to count the lack of bad news as good news. For our faithful readers who would like more details, I'll elaborate below, but for the fainter of heart feel free to click onward.

One thing we've learned is that for something like this, there is a lot more that the doctor's don't know than what they do know. It's rare and the human body is very complicated. Adam was first diagnosed with hemi-dystonia in 2000. But 'dystonia' is just a name for a symptom group-the kind of twisting that Adam has in his foot and hand. Dystonia can be genetic or due to brain injury or overuse (writers cramp is a form) or other things. The 'hemi' part is because it only affects the left side. However...often the more generalized dystonia will start on one side. It will start with the left foot, then the left hand (like Adam) and then eventually go to the right foot and the right hand and eventually the whole body. This sequence can take a few years. Online you'll find stories of people who originally had the 'hemi-dystonia' label and may still refer to themselves that way, that really are no longer affected on just one side of the body. So that was something we just had to wait out. All through those earlier years 2001, 2002, 2003 we were aware of that possibility. In fact some of the worst times with all this was when we thought we saw the right foot/hand starting to do something funny. You can imagine, if Adam had the same disability on the right as he has on the left, he would be much more severely impacted.

As each year passed and Adam's mobility issues stayed on the left, the odds improved that they would always stay that way. It was also a good sign that his MRI does show a stroke-like pattern of damage on one side of the brain. That would be consistent with a permanant state of hemi-effects. Typically people with generalized dystonia may have a normal looking MRI.

So it appears that Adam is truly hemi-dystonic which is quite rare. Our Tulsa neurologist, Dr. Miller, has only had three in his 20 something years of practice. He's no longer seeing the first one, there is one more around and Adam was his third. I think one of the things that preciptated this trip to Memphis was that Dr. Miller sent the other hemi kid to Memphis about a year ago. Well, he came back with a diagnosis of Rasmussen's syndrome. Rasmussen's is pretty nasty, it's where one side of the brain just gradually and completely deterioates (for unknown reasons of course-are you seeing kind of a trend here?). Now this other kid also has significant cognitive problems which is expected with Rasmussen's but does not fit with Adam very well. On the other hand, I think Dr. Miller was worried that he couldn't really rule out a mild version of this for Adam. For classic Rasmussen's, the treatment involves eventually removing one whole half of the brain (which is surprisingly well tolerated-especially in a young patient-but still not a good thing).

That was a jolt. Here we were 8 yrs in and we thought we had a handle on everything and now all of a sudden we need to rule out some horrible thing we've never heard of.

This gave us a chance for Adam to be looked at by a team of top Neurologists. They don't think he fits the Rasmussen's scenario at all (zoom/pting/sounds of bullets being dodged). Adam now has had 4 brain MRI's over an eight year period and Dr. Wheless (Memphis doctor) sees nothing progressive about what's there. His best guess is that it was a stroke-like event early on in Adam's life. And that whatever 'happened' is done as opposed to still 'happening'. This has always been a worry and we felt like this was the clearest and most confident statement we've had so far along those lines.

Part of the reason that Adam was not considered a good surgery candidate is that he is too high functioning. It's an equation of multiple trade-offs. If they can identify a small region of the brain that is the seizure triggering area, they can go in and destroy that portion. But of course there is always the risk of some loss of other capabilities. Well there are young kids having multiple seizures per day-so many that they're beginning to see cognitive impairment. So going in and burning out a section of brain to bring that to a halt may be your best bet, even if it does some collateral damage.

For Adam, they think they know where the seizures are triggered. To know for sure would require going under the skull and putting sensors directly on the brain. Even then, there is the question as to whether the area is small enough to go after or too big to take the risk. These are big steps.

Dr. Wheless felt that trying some new things medication-wise was still the way to go for the time being. In retrospect we just wish that our neurologist here hadn't been as optimistic about the chances of surgery making medication unnecessary. He perhaps raised our hopes a little high. The seizure med side-effects do effect quality of life and we liked the idea of getting rid of them. What will be new in Dr. Wheless' approach is that he wants to focus on the timing of the meds. One of Adam's main meds, Keppra, has mostly succeeded in knocking out daytime seizures for years. He just continues to have them occasionally at night. Adam has always taken equal amounts of medication at breakfast and dinner. Dr. Wheless has changed it around so he's taking the same amount total, but now he'll only take 1/4 at breakfast and 3/4 about an hour before going to bed. The hope is that the lower daytime levels will continue to control the easier to fight daytime seizures and high levels at night will knock out the tougher night time ones as well. And as a bonus he'll have less medication in him during his waking time so that could be a win/win.

So that's what we're up to. We think it has a chance of working; time will tell. We'll let you know. Congrats if you made it all the way down to here. We really appreciate everyone's interest, support and kind words.

Final thoughts

Although we did not get released on Friday, we will definitely be leaving on Saturday. Adam has one more test scheduled for Saturday morning, a final discussion with the doctor, and then I think we hit the road. The Memphis sightseeing has yet to be determined!

Our departure is rather bittersweet--although glad to be heading home, our conference with the doctor today was rather disappointing. They ran test after test after test this week only to be able to confirm what our Tulsa doctor had already told us. Instead of recommending any new treatment, they suggested Adam go back on a medication combination that his Tulsa doctor had already tried and rejected due to a lack of improvement. Memphis doctor suggested a slightly different dosage combination, but it is hard to get very hopeful. Basically, Memphis doctor determined that Adam is not really a good candidate for surgery (no guarantee that it would do any good, and potential for harm). It doesn't appear that any other viable options exist currently.

So, we pack our bags, get in our car, and drive down the road--dealing with the reality that modern medicine does not yet have all of the answers--or maybe that there are no answers to all questions. I guess we had gotten our hopes up, and now are taking a few moments to readjust our sights, and look for the positive outcomes from the week.

Again, we can't thank you enough for sharing our journey--your support made this week much more of a positive adventure!

Whole Lot Of Testin' Goin On...

Well, the pace of testing is winding down now. We think tomorrow (Friday) may be our last day. About 2:30 this afternoon they were done with Adam's last major thing for today. Adam had settled in to watch TV and Peggy was curled up with a book. This is not exactly a big site-seeing trip but I did happen to find out that we're about 4 blocks from a Memphis landmark, the original Sun recording studio. So I took a little break and walked down. Even happened to catch the 30 minute tour. For those not up on their Rock and Roll history, Sun records is where Elvis, Johnny Cash, Carl Perkins (and others) were discovered in the mid-50's. It's the only recording studio in the National Register of Historic Places (although Motown is in the process of listing). They had some cool displays and some pretty valuable memorabilia. I stood on the exact spot where Elvis made his first commercial recording in 1954. Thank you, thank you very much.

We may at least drive by Graceland on the way out of town. It is surprisingly close to the city center and freeway access and located on, of all things, Elvis Presley Blvd!

Our home away from home.

Hi all, this is guest blogger Brian. Since Adam is all wired up, he stays in the room unless there's a test he needs to go to. They also want at least one of the parents to be with him at all times. Peggy has been real content to stay in the room (I don't think she's seen direct sunlight since Monday) so we've settled into a division of labor where she's the 24/7 room parent and I run all the out of room errands (which still makes me about a 23/7 room parent). I'll go down to the cafeteria 3 times a day to get food for Peggy and I. We didn't have space in here for all of our suitcases, so I'll usually go out to the parking garage a couple times a day to trade dirty laundry for clean, or get more books, and so on. Above is a twilight picture of the LeBonheur Medical Center taken from the parking garage across the street.

Room with a View

As you may have gathered from several of our posts--we have spent a fair amount of time in our lovely (small for 3 people) room. One of Brian's occupations has been keeping up with the construction site which makes up most of our view (and keeps our construction noise quotient satisfied!). We did get out a bit today when Adam went down for his MEG test...that one was a little awe inspiring! The door had some sort of vacuum lock (Adam in with the machine, everyone else out) on it and was about 4" thick...and two doctors and a tech ran the test. Don't really want to know the total cost on that test. Probably awe inspiring in a whole other way!!!

Still haven't heard anything definite about a release date/time, but we're really hoping for tomorrow. I know that the doctor would like to see at least one more seizure (we're dropping the dosage and shortening the sleep time tonight) and there are two more tests listed (HD-EEG & VEEG), but then that may be it. We don't know how much of an evaluation we will be getting before we depart, or if reports are forwarded to our Tulsa doctor for follow-up conversations. Although we would love to have lots more information before we leave, we are so ready to check-out of this oh-so-very-exclusive hotel that we'll leave as soon as we are given that option! So, I'm guessing that we will get back home without all of our questions answered, but maybe we'll at least be a little more informed. We certainly have learned a lot about all of the many, many tests that one can get for brain-related issues, we have a list of things that we might bring if we ever have to do this again, and (I'm certain) we all have mental lists of what we want to do as soon as we have the freedom to move about freely!

If indeed we are moving to the end of the week here, I want to let you know how much it has meant to us to hear from you and to know that you are thinking of us on our adventure! What a wild, strange ride it has been!

If this week were a...

So we started pondering how this week with its busy schedule (check out the list in the photo--but they didn't really all happen in ONE day!!!) would look if it were actually something else...so enjoy our list thus far, and if you think of anything fun to add, just let us know!

If this week were a __________ it would be called _____________ !

Punk Band--The Nuclear Meds
Reality Show--EMU Survivor (Epilepsy Monitoring Unit--who will get voted off of the 7th floor?)
Sit Com--Close Quarters (the zany mishaps of 3 people trying to live together in a 10' by 20' room!
"Art" film--Watching Adam's Brain (90 minutes of EEG read-out overlayed with animations of Adam's life)
Country song--Stuck in Memphis, on the 7th Floor, With You
Game Show--Test or No Test!

And Brian's special offering--If this week had been a weather forecast it would have been: High 75 deg., Low 74 deg., breezy at times. Light in the daytime. Still pretty light at night. No significant chance of precipitation. Moderate risk area for noise.

Surely you can do better than this???

Homework here, too???

Adam is amazed that he even has homework (in the guise of a 498 question long form) that he needs to complete! Notice the lovely set of wires dangling jauntily from the back of his head. They are in many lovely colors, and they provide this very helpful readout of brain activity. Very helpful if you know what you are looking at, I'm sure! Adam has been trying out different movements to see how it changes the display. Favorites are blinking his eyes (two of the lines make sharp jumps) and clinching his teeth (lots of the lines jump up and down very close together for a rather solid line.

This is the EEG test read-out that is constantly showing on a monitor in Adam's room. The read-out reminds me of a seismograph (that measures earthquake activity). So, this is basically measuring the rumblings (as opposed to ramblings) of Adam's brain. At some point this week they have scheduled a High Density EEG, which uses a cap of some sort with even more points to measure the activity and movements. Maybe he could get down to specific freckle movement on that one! We'll find out later...and we'll let you know!

Later that evening...much later

It's now 1:00 a.m.--and in Memphis, that means it is popsicle time! Or at least if you are Adam (or a member of his attending party) and you are preparing for a test the next day where you are supposed to be sleep deprived. So since this is a family affair, we will ALL be properly sleep deprived!

So, when the movie ended at 12:45, and the nurse stopped by to see if we needed anything (and were still dutifully staying awake), she suggested a popsicle, and Adam (not wanting to hurt her feelings) kindly took one! Isn't he the nicest?

We do get to sleep in tomorrow morning (well, at least we won't have to be awoken at 6:00 a.m.), and then on to various somethings tomorrow. More then (unless something REALLY exciting happens yet tonight!)--it would have to be really, really good, because I'm having to re-type at least every other word because my fingers and my brain no longer seem to be connected. Wonder if the lack of sleep thing is kicking in here?

Settling in to the Hospital Routine

A day of tests hasn't dulled Adam's appetite!!! After our 5:45 a.m. check in time, we got settled into our room--barely--before it was time to head down for an MRI. If you have never experienced an MRI before, it is the test where they slide you into a big plastic tube, tell you to stay extremely still, and then you hear lots of loud noises. Clicks, bops, dots, clanks, etc. Basically they are taking pictures of the brain...and it lasted about an hour.

Back to the room to try again to "settle in!" Next came a parade of people including a lab tech to draw blood, an OT and PT to do a movement evaluation, a Nurse Practitioner to take a medical history and do a preliminary evaluation, a visit with the Neurologist for further evaluation, and also a visit down the hall to get all of the electrodes in place for the EEG--which remains on for the duration to catch any seizure activity. The oh, so very attractive gauze headgear he is wearing help to keep the electrodes from being knocked loose when he sleeps. Basically, the idea is that he will stay connected until he has a seizure, so that they can see exactly what is going on in his brain during that activity.

As evidenced from the photo--Adam is fitting meals in during all of this excitement! He actually has a menu from which he phones in his order--which is delivered to his room. It is still cafeteria food--but kind of fun to order rather than just take what is served that day! We're all hoping for some sleep tonight, all a little tired after the day thus far.

Day 1--the Drive East

Reasonably uneventful today, just a six hour drive mainly due east to Memphis. I'm still learning about getting the blog to look the way I want, so I'm adding a couple of photos of Adam--first when crossing into Arkansas, and then relaxing in the hotel. We check into the hospital at 5:45 a.m. tomorrow morning, so we're going to call it a night very soon! More tomorrow as we get to the main destination for our journey!

Packing for Memphis

Another store run and we'll be ready to go! We have clothes, we have snacks, we have activities, we have laptops, and (not surprisingly) we have books! Since we don't know exactly what to expect when we are in Memphis, we are taking anything that sounds helpful. Good thing we have a van!

We'll drive to Memphis Sunday afternoon--Brian estimates about 6 hours driving time. We'll be at LeBonheur Children's Medical Center--looks to be in the heart of Memphis. We'll use this blog to provide updates and photos of our time there. Feel free to leave us comments!