Dr. Pearl

We had our first official appointment with Dr. Pearl today and now we have a doctor again! Since this is the 5th neurologist we've taken Evan to, we pretty much have this initial meeting thing down. He spent an hour and a half with us (which is our norm even though the appointments are supposed to be an hour) and he did his best to answer all our questions. The more neurologists we meet, the more we realize what an unknown science neurology is! There are so many mysteries surrounding the brain, seizures and seizure medications and a lot of our questions were answered with "That's a great question." At least we're not asking bad questions! This is by no means a criticism of Dr. Pearl and we were impressed with him overall. But basically there are so many things medical science just hasn't figured out yet in this area.

Evan had a little anxiety about being in another doctor's office and is growing leery of all medical personnel. He was pretty stressed about being there which made things a little challenging, but he had a seizure in front of Dr. Pearl, which was probably a good thing. That's the first time a doctor has seen him have a seizure, but it happened so fast Dr. Pearl barely had a chance to check it out.

So, the game plan isn't much different and we're going to pursue seizure controlling meds while following a possible surgical path and having some testing done to determine if he has TS or not. Dr. Pearl said Evan is doing so well in every other area that it's hard to think about brain surgery and doesn't feel we need to rush into a decision in that area. We like his approach so far and it's good to hear another doctor say that we can take our time deciding about surgery.

On that note, Dr. Pearl was impressed that we had gotten into see Dr. Bruce for a neurosurgery consult and declared him to be the best pediatric neurosurgeon for epilepsy in the world. These sound like pretty high marks, and he is familiar with the stiff competition so if this is where we end up, we'll press for more info as to why he feels this way. But for now I think we feel pretty good about the doctors we are working with.

Cluster Seizures

Evan has started to have cluster seizures--we're not sure if this is bad or just different, but we will bring that up with Dr. Pearl when we meet with him. Basically Evan is having a lot of seizures in a short period of time instead of one seizure in a day. He has had three sets of cluster seizures on three different days. The individual seizures in the cluster are very much like the ones we're growing used to, but he has one every 15 min. or so. It can be a little unnerving for us, but he doesn't seem bothered by them.

Last Friday he had his second set of cluster seizures and because we're sortof between doctors we didn't know who to call. Rob went down the list and Dr. Young and Dr. Chang were both on vacation so Dr. Pearl got the call. Dr. Pearl called back relatively quickly and mentioned that he is familiar with Evan's case and has seen the MRIs already. This isn't overly surprising since we know Dr. Chang presented Evan's case during the weekly Neurology Meeting at Children's at least twice and he's in the same office as Dr. Chang. The fact that Dr. Pearl knows about Evan's case is probably a good sign about the type of care he'll receive, but may be a bad sign about the type of care he'll need.

Epilepsy and Herbal Treatments

We went to a lecture given by Dr. Pearl about treating epilepsy with herbs. He wrote a chapter on the subject in a book that talks about all kind of alternative therapies for epilepsy. It was nice to get a little preview of him before our appointment but unfortunately he was paged by the emergency room so we didn't get to talk to him afterward.

His talk was interesting, and it was clear that his position on the subject was not in favor of using herbs to treat epilepsy, but rather that doctors need to be aware that patients are using these treatments on their own and it's important to have an open dialog. A lot of the herbs have interactions with the drugs and can actually make the medication less effective. There are currently no reliable clinical studies on the effectiveness of using herbs to treat epilepsy, but NIH is starting to do some research in that area.

Overall, we were impressed with him, and his views about herbal therapies don't fall too far from our own somewhat conservative opinions about these options. I know there are people who will argue this point, but I don't have a whole lot of faith in herbal treatments for dramatic medical issues. There is a lot of testing on conventional medications and a scientific track record on the successes, side-effects and complications people experience when taking them.

Support Group

I spoke with a woman who runs epilepsy support groups through the Epilepsy Foundation--Chesapeake Region and she set up a support group for parents of epileptic children under age 12. We had our first meeting this week and it was interesting to talk to people with similar experiences. Unfortunately, there were only two other people there (one of whom was the organizer, who is also epileptic) because a lot of parents had childcare issues and couldn't make it.

The organizer was a fascinating woman with such a positive outlook on life in general she can almost knock you over with her energy. She had a successful epilepsy surgery 8 months ago and has been seizure free ever since! We can never hear too many of those stories!

She also had a funny story about coming off one of the drugs she was on...She was 12 years old and started feeling really depressed and would cry about anything after being switched to a new drug. She mentioned it to her parents and when they didn't do much about getting her meds changed, she took action on her own. Because she knew it would be dangerous to stop cold turkey, she researched how to wean herself off the drug and did just that. She managed to hide it from her parents and told her mother a few weeks later in the car--on the way to a follow-up appointment with her doctor!

Smart kids--they'll do you in every time! We might be in trouble!

Dr. Pearl

We heard from Dr. Chang and she has referred us to another doctor, Dr. Pearl. He is a pediatric neurologist and an epileptologist--a specialist within a specialty field. The interesting thing about being referred to him is that we wanted to see him a while back and in early March when I scheduled an appointment, the earliest I could get was May 30. Our pediatrician also tried to get us in earlier, with no luck. Dr. Chang has more pull though and we got a call a couple days ago letting us know we have an appointment next Tuesday!

Neurosurgeon

Yesterday we met with Dr. Bruce from Children's Hospital and we were very impressed with him. He seemed very knowledgeable and was good at explaining the things we didn't understand as well. Oh, and his hands were very steady!

Dr. Bruce was also very good at summing up what we he thinks we should be doing which is pretty much in line with what we've already been told from other doctors and are doing:

--Have additional testing done to see if it's possible to diagnose Evan with Tuberous Sclerosis. This will probably involve testing his eyes, skin, heart and kidneys.

--Continue to increase the dosage of Keppra in the hopes that we will reach a level that will manage the seizures before we max out on how much is safe for Evan to take every day. We should know if this is working in 2-3 months.

--If the medication doesn't control the seizures, Dr. Bruce recommended having a noninvasive test done that can hopefully determine which tuber is causing the seizures. This is a highly specialized test and can only be performed in Detroit. If it shows that one tuber is causing the seizures, he may still be a surgical candidate. This would, of course, lead to many more extensive tests to be certain that surgery is an option, and if so, to make sure it's the best option.

Initially, when we heard Evan may have Tuberous Sclerosis, we thought he would not be a surgical candidate, so it's good to know that nothing has been ruled out yet. Not that we're hoping for surgery necessarily, we just don't want to loose any options.

Early Childhood Intervention

We met with three women form Fairfax County's Early Childhood Intervention program a few days ago. They came to our house and observed Evan and took a lot of notes. He apparently qualifies for their program, which for him, will include PT with a therapist that will come to our house!

They did an overall assessment of him too and he's basically 1-6 months ahead of his age in every area except Gross Motor Skills where he is about 6 months behind. This makes complete sense because of the balance and tone issues he has on the left side.

Neuro-dating

I called yesterday, will she call back today? Should we call her? Should we wait a day to see if she calls? Let's wait a day and if she doesn't call we'll call her. I hope she calls!

We're waiting to hear back from Dr. Chang, from Children's Hospital, to talk to her about additional testing. Dr. Young, from Fairfax Hospital, recommended we switch neurologists and start seeing Dr. Chang because Children's is set up better do additional testing and also has an Epilepsy Center and a Tuberous Sclerosis Clinic.

We've seen Dr. Chang already so we're familiar with her and comfortable working with her. Dr. Chang is young, passionate about medicine and aggressive in her treatment technique. She seems to have Evan's best interest in mind and has been proactive in showing his MRI films around, getting additional opinions and ordering additional tests to aid in diagnosis. She has been described to us as a doctor who impresses her colleagues and works hard for her patients.

MRI Results

We spoke to Dr. Young about the results from Evan's MRI and the game plan may be a little different now. Dr. Young (Fairfax Hospital) and Dr. Chang (Children's Hospital) have looked at the MRI films together and both agree that Evan very likely has Tuberous Sclerosis, so we have two opinions from two different hospitals already. We will be talking to both doctors as well as Johns Hopkins this week to figure out what we need to do next. Instead of going over what this disease is, I'm going to direct anyone interested to the link below. It is very informative:

http://tsalliance.easycgi.com/pages.aspx?content=247

We believe the next steps will involve additional testing to make sure he really does have TS and see where to go from there.

MRI

What a day...Yesterday we brought Evan to Children's Hospital in DC for a new MRI, and as I may have mentioned, he doesn't like being messed with. We began the day before 6am because he couldn't eat anything after that and his test wasn't until 1:30. Ever try to tell a 2 year old they aren't aloud to eat? Not fun!

Once we got to the hospital he made his presence known to anyone within earshot and protested fervently over having his blood pressure taken, temperature taken, being weighed, wearing a hospital gown, etc. He really lost it when he realized someone had put a hospital bracelet around his ankle. Just doesn't like being messed with.

As for the MRI, they sedated him which took about 10 seconds to take effect and the test itself was uneventful. We were impressed with how good everyone was in the MRI lab and the nurses were all so kind. It takes a special type of person to go into pediatric medicine. On our way out, we were handed a CD with the digital files from his MRI, which we looked at as soon as we got home. I think we'd better keep our day jobs though because nothing seemed evident to us by looking at the scans!

Keppra might be working

Well, the good news is that Keppra may be starting to control Evan's seizures, the bad news is we haven't reach the dosage that will completely achieve it yet. He went 6 days without a seizure and although that in itself doesn't sound good, it's a huge improvement from seizures every day or every other day. We will keep increasing the dosage until we get to a seizure management level or we max out on the dosage level for him. We're hoping for the first option there!

The goal is to control Evan's seizures with medication, however, when one drug fails, the chances go down that a second drug will succeed because they are all trying to do pretty much the same thing. If you haven't already heard me rattle off statistics, here they are:

50% chance first drug will work
25% chance second drug will work
5% chance third drug will work

We're on our second drug, so we're hoping Evan is one of the lucky ones.