The neuro-doula

Rob asked Evan's neurologist, Dr. Young, if he would be our doula for neurology. He is not associated with a hospital that would do surgery if that is what we end up doing, so he is unbiased. We've been running everything past him and it's nice to get his opinions on the different things we hear. In the meantime, he is regulating Evan's medicine and seeing him for regular office visits.

Next week Evan will have an MRI done and the following week we will meet with Dr. Bruce, the neurosurgeon for Children's Hospital in DC. It'll be interesting to hear what he has to say about how he thinks we should move forward. At Children's they tend to involve the surgeon early in the process, whereas as Hopkins, the neurologist makes all the calls until you are sure about surgery. It's interesting to see how differently hospitals work!

Good TV

We've been noticing lately that everywhere we turn we've been hearing people talk about brain surgery: radio programs, TV shows, etc. I'm guessing it's that we're more aware of this topic right now, but it sure is odd.

Last night when we turned on the TV, it was set to PBS and they were airing a show on how doctors and patients relate, particularly when dealing with a serious illness or surgery. The people they chose to speak on the show included doctors, psychologists, cancer survivors, etc. and was really well done. There were a couple quotes that came from the show that stuck with me...

"What you don't need is a doctor who makes you fell passive and dumb; what you do need is a doctor who makes you feel empowered and smart."

"It's not about the disease the patient has, it's about the patient who has the disease."

Orthotics

Yesterday we took Evan to be fitted for orthotic inserts for his shoes and I have to say, it was one of the more unpleasant experiences we've had through this process. Evan does NOT like being messed with, so having his feet wrapped to form a mold while being held still was not a good time for anyone in the room. He rocked the building with his screams.

The good news is that they were able to get a good mold on the first try for each foot so we didn't have to redo it. I'm hoping these last a while before we have to through that again. I'm sure it'll get easier as he gets older and he understands what's going on.

Another parent's experience

I had an amazing 2 hour phone conversation with a mother who's daughter who had major epilepsy brain surgery when she was 7 years old. Her daughter's epilepsy was more dramatic than Evan's and the surgery, a Functional Hemispherectomy, essentially removed and disconnected the entire left half of her brain. They went through many drugs and treatments before arriving at the decision to have surgery, but when they made their decision they were extremely pleased with the results. Their daughter is now seizure free and drug free. After surgery her daughter had to relearn how to walk, talk and use her eyes. The therapy she underwent was extensive, but she is doing very well now and they have never regretted their decision.

It was reassuring to talk to another parent who has been through the surgical process, even though what they were faced with is very different than Evan's case.

EEG

On Friday we took Evan for a routine EEG. This involves giving him a mild sedative, hooking him up to the EEG machine, and then monitoring his brain waves while he's sleeping and awake. The actual test takes less than an hour.

He's had several of these done in the past, but they have always been normal. This hasn't been confusing or concerning to doctors because an EEG is just a snapshot of what his brain is doing for that period of time, so it just indicates that he wasn't having any abnormal brain activity during the EEGs.

Yesterday's EEG did show some irregular activity though--there were some spikes on the EEG coming from the right side which is consistent with his diagnosis. I'm not sure exactly what the appearance of these spikes means in terms of whether or not his condition is getting worse. I have to wonder if a longer EEG would answer that, but we're not signing up for that just yet.

Today's visit to Johns Hopkins

Today we spent most of the day at Johns Hopkins Hospital. We met with Dr. Vining and had Rob's sister, Mary, meet us there to be in charge of baby wrangling while Aria spent the day playing with Bella at Rob & Helene's house. We truly are very fortunate to have so many people in our network of friends and family who are willing to help us while we go to all these appointments.

The trip to Johns Hopkins was not exactly what we expected. We thought everything would become more clear after meeting with them and that was definitely not the case. Dr. Vining seems wonderful and she was very informative, but noncommittal. I think basically the MRIs and EEGs are not recent enough and she wants to see the results from those before she recommends further, more involved testing. She also talked about possibly trying the Ketogenic Diet first to see if he has success with that--I hate the idea of trying to do this diet, but it has been very successful for a lot of people so there must be something to it.

http://www.epilepsy.com/epilepsy/treatment_ketogenic_diet.html

Dr. Vining also said she agreed with Dr. Young's opinion of following two separate courses of action simultaneously: try to control the seizures (occurring every 2-3 days) with medication, while having additional testing done that could ultimately lead to surgery. She suggested choosing one epilepsy center to work with if and when we get to the point of intensive testing because each center would redo these tests prior to any surgical considerations. So that leads us back to the idea of figuring out who we would want to perform a surgery we haven't yet decided or been recommended to have done. It's all very circular thinking.

The surgeons at Johns Hopkins who do this type of surgery are Dr. Ben Carson (who basically walks on water in the neurology world) and Dr. George Jallo.

http://www.neuro.jhmi.edu/profiles/carson.html

http://www.neuro.jhmi.edu/profiles/jallo.html

In a couple weeks we will be meeting with Dr. Derek Bruce, a neurosurgeon at Children's Hospital in DC. He is also supposed to be excellent.

http://www.dcchildrens.com/dcchildrens/findadoctor/Doctor.aspx?DocID=982%20&Dept=Neurosurgery&DeptId=353

So, I guess if surgery is the way we go, these are the three surgeons we are currently looking at, but like I said, nothing is definite, nothing determined. Hopefully as we continue with testing, we'll figure out what is the best decision.

Some light reading

I read this book over the weekend and it has a lot of helpful information in it for anyone who wants to know more about epilepsy and the available treatments. It was written by three people at Johns Hopkins, one of whom is the neurologist we will be seeing tomorrow. It's written with parents in mind, so all the technical information is very well explained and there is a long chapter that talks about surgery options. I should stress here that we still don't know if Evan will be having surgery and there are some more tests that have to take place before it will be determined if he is really as good a candidate as is suspected, but we are researching all options.

Lots of info today

Today was a whirlwind of information but this seems to turning into our norm--if you ever hear of a tropical storm named Evan, watch out!!

This morning Dr. Chang called us back after having taken Evan's MRI films to her neurology meeting at Children's Hospital in DC and I'm not sure if it's good news or bad news when a room full of neurologists all agree that our child is a surgical candidate and feel strongly about a surgical consult. Basically, the neurologist determines if a child should have surgery and they send patients for a consult, so this is pretty huge.

After talking to Dr. Chang, she got very busy and scheduled an appointment with Dr. Derek Bruce (neurosurgeon with Children's), and arranged for Evan to have a more recent MRI and a routine EEG (not the hellish week-long video one). She feels that if we go the surgical route, we should have it done before the end of the year, so she wants to move fast.

We feel fine about doing additional testing and talking to a surgeon in DC but still have a strong interest in Johns Hopkins. After our conversation I called Johns Hopkins back to see about getting in sooner and they had a cancellation for Tuesday so we're going there in just a few days to meet with Dr. Vining. It'll be interesting to see if they feel the same sense of urgency.

Know a good pediatric neurosurgeon?

For the past three weeks we keep circling back to the same question: who are the best pediatric neurosurgeons for epilepsy and with which epilepsy center are they affiliated?

We know that we want to go to an epilepsy center because then the team of doctors that will work with Evan will all be at the same place, but how do you choose? We selected Johns Hopkins because they have such a good reputation, with the added benefit of being nearby, but there are also epilepsy centers at UVA, Children's DC, Philadelphia, Pittsburgh and Boston (to name a few).

It is so hard to research doctors though and although we have a few names, we don't know how to get any statistical information about them. We're open to suggestions if anyone has any ideas.

Neurologist #3

Today was an exhausting day. It began with Rob taking Evan to physical therapy while I dropped Aria off at school. Then at noon we rushed into D.C. for an appointment at Children's Hospital only to find out that our appointment was actually in Fairfax, VA--shit!! All was not lost though and they were able to see us at 3:30 in Fairfax and Aria got to spend an entire afternoon with Uncle Chuck who picked her up at school. I hear he is now an ace at Chutes & Ladders, but watch out, he cheats!

It was very interesting to talk to another neurologist and we're getting to the point where we understand most of the lingo, which is nice. One of the things that is most fascinating is that doctors who see Evan seem to take everything lightly until they look at his MRI films, then everything changes and they start talking about acting more quickly to get a surgical consult. It's understandable that everyone thinks he's fine at first though because he is doing great developmentally and is a happy, verbal, interactive kid who just seems to walk more like a child 6-9 months younger. After they look at the films the room starts spinning and they start talking faster.

Dr. Chang was no exception. She spent an hour and a half with us and really took her time learning about Evan's history and going over his MRIs with us. She is going to take the films to Children's Hospital in DC tomorrow to show them to the entire staff of the epilepsy center at their weekly meeting. She told us they will be very interested in him and asked if we would want to talk to the doctors at the epilepsy center there. I think we're more interested in Johns Hopkins at the moment though. Any epilepsy center we go to is going to want to do another MRI and a week-long video EEG where Evan would be admitted to the hospital for a week while hooked up to an EEG and videotaped the whole time. We just don't want to put Evan through that more than once.

The basic feedback from Dr. Chang is that there are two spots on his brain that need more evaluation. She said if Evan was her patient she would treat the seizures (that are happening daily now) more aggressively with a different medication, have a more recent MRI done, check him into the hospital for a week-long video EEG and send him for a surgery consult. It sounded like she would have all this done in the next month. If we proceed with our appointment at Johns Hopkins we're only a few weeks slower than what Dr. Chang's timeline would be. She's going to call us on Friday morning to talk to us about what the staff at the epilepsy center says and that should be an interesting conversation.

New Medication

Last weekend we began the process of changing Evan's medication from Trileptal to Keppra. He was almost at the maximum dosage for Trileptal and it wasn't controlling his seizures, so it's time to move to a new med.

He started having seizures almost every day again and even though they are short (10-30 sec.), it is always troubling when his medication can't manage the seizures. It is common for him to have breakthrough seizures when he is sick or his weight increases and the dosage needs to be changed, but that's not the case this time.

In order to switch the medication, we've introduced a very low dosage of Keppra in addition to the Trileptal and will gradually decrease the Trileptal while we increase the Keppra until he is at the dosage the doctor thinks he needs. The medicine makes him cranky and sleepy though and we're hoping it's just a temporary thing while his body adjusts. This used to happen whenever we increased the Trileptal too.

3rd Opinion

As I mentioned, we are going to Johns Hopkins next month, but yesterday we received a return call from another neurologist's office who has an appointment available on Wednesday, so we're going to get a third opinion before going to Johns Hopkins. We figured this will give us a little more information and help us formulate our questions even better when we get to Johns Hopkins where it seems like the appointment will be a little more involved.

The current mystery is that there are some white spots on Evan's MRI that nobody seems to be able to identify and we really don't like the idea of there being something nobody can figure out on his films. I'm sure there are a few more tests in Evan's near future, so hopefully we'll find someone who can unlock the puzzle.

Going to Johns Hopkins

Well, after 2 1/2 weeks we finally feel like we have enough information to begin the process of talking to a neurosurgeon. We made an appointment with Dr. Vining, the director of the pediatric neurology department at Johns Hopkins and will see her next month. We're looking forward to talking to her and learning what options for treatment are available for Evan.

Johns Hopkins is a pretty impressive place and Dr. Vining seems to look really good on paper and I've heard good things about her. It's nice to be going somewhere that deals with all types of epilepsy treatments on a daily basis.

Here's some info on Dr. Vining:

http://www.hopkinsmedicine.org/Press_releases/2003/10_23_03.html

Physical Therapy

Evan is going to physical therapy once a week and Rob and I are taking turns bringing him while the other parent takes Aria to school. Today was my first solo trip to therapy and it's pretty amazing to see how they do things. Basically, the therapist has him stretch, squat and strengthen his muscles while playing with toys, walking on balance beams, jumping and generally having a good time.

He is going to need at least one orthopedic brace to help encourage his body to move the right way and it is amazing the hoops we are having to jump through with the insurance company. It looks like they might cover the braces but it has been a huge hassle.

Rob arrived shortly after we finished the therapy session and we spoke to the therapist / owner for almost an hour after his appointment. She was full of information and will probably be a very good source of information. She was very positive about the success she's seen with kids who have had the surgery and had great things to say about the next two neurologists we're going to see for additional opinions and insights.

Just to catch you up...

Evan began having seizures (mostly complex partial seizures) on the left side of his body when he was only about a month old, so we started taking him to see a neurologist. He had an MRI which revealed a migration disorder in the right frontal lobe--basically a portion of his right frontal lobe didn't form right in utero. He was put on a low dose of Trileptal to control the seizures and has had it steadily increased as he gains weight or has breakthrough seizures. Now he is almost at the maximum dose for this medication.

He has most recently begun physical therapy because he is developing abnormal muscle tone on his left side. Interestingly, there is a neurological connection to this as well. When we started taking him to physical therapy, we also started thinking about second opinions to make sure we were looking at all possible treatment options. The second neurologist we went to felt Evan was having too many seizures on Trileptal and suggested we consider switching to a different medication, either Keppra of Lamictal. He talked about a few other treatments too, including a vagus nerve stimulator which is sortof like a pacemaker and brain surgery (focal resection epilepsy surgery) to remove a small portion of his right frontal lobe. In Evan's case he believes the brain surgery would be the more effective option and apparently this is not a severe type of epilepsy surgery--once you get past the idea of where they would be operating if we pursue that option!

The scary part is that he believes Evan may be a perfect candidate for the surgery. He recommended we go for a consultation with a neurosurgeon just to talk to someone who does that and see what they have to say while we continue trying to control the seizures with medication. We are not ready to talk to a surgeon and want to make sure we have a lot more information before we make that appointment, but we are getting closer. We will be seeking out a few more neuroloist's opinions in the next couple months and have been doing a lot of research.

So that is our current path. I have to admit, I have written the cliff notes version of this, but that is the gist of what's going on.

Decided to start a blog...

After some concern of the impersonal nature of using a blog to inform family and friends about an important medical issue, we decided it was the most efficient way to let everyone know what's going on. Please feel free to use the comment area at the end of the postings if you have any questions or helpful information.

Most people close to us know that Evan has epilepsy (complex partial epilepsy), but now we find ourselves on a new journey regarding physical therapy, second opinions, and various treatments--the scariest of which is brain surgery. It truly is a very complex maze of medical terms that is sometimes difficult to navigate, but we're doing our best.