December 29, 2006

Vigabatrin Mix Master

So, I forgot to mention that Vigabatrin doesn't come in a chewable form so we have to crush it and put it in something. The first day I mixed it in orange juice and put it in an oral syringe--I felt pretty proud of myself as Evan drank it up. Yesterday Evan was less interested in the tainted OJ but still took the medicine. Today he flatly refused, so I tried putting it in a medicine cup he could take himself--no go. My next choice was to put it in a regular glass so I asked him if he'd like some orange juice--no. He asked for cranberry juice, so in went the Vigabatrin. Success! We'll see what tomorrow will bring.

As for the seizures, they continue. We have a few scheduled increases of Vigabatrin until we reach what should certainly be a working dose, so we'll see what happens.

December 28, 2006

We started Vigabatrin

I guess Rob and I were both dragging our feet about starting Evan on Vigabatrin. It arrived 10 days ago and we finally gave Evan his first dose. The package sat unopened on the kitchen counter for days and yesterday we took the plunge. We wanted to wait until the craziness of the holiday died down a bit because when Evan gets excited it sometimes triggers seizures. So, now that things are closer to calm, I guess we're out of excuses.

Yesterday morning we gave him the Vigabatrin and he only had one small seizure that evening. This makes us hopeful, but it's too soon to say anything about it's effectiveness yet.

So, keep your fingers crossed!

December 18, 2006

Vigabatrin Arrived

Evan's Vigabatrin arrived from Canada and we find ourselves wondering if this drug is going to work or if we will add it to the list of the ones that don't. Evan really hasn't had much success with any of the meds stopping his seizures so it's hard to remain optimistic and believe that this one might be different. But, this one might be different and wouldn't it be wonderful to have an end to the seizures!? I'd even be happy with a good reduction at this point.

We'll probably start him on the Vigabatrin this weekend so we'll both be around and be able to see any possible side effects he may have with the new drug. Merry Christmas Evan, here's a new medicine. Do you think Santa can bring Evan a seizure-free life? I'd give anything to stop watching him go through this.

Good TV: Surgery Saved My Life

A few days ago Rob and I watched the show, Surgery Saved My Life on the Discovery Channel. The show was about a teenager who underwent epilepsy surgery and had a very positive experience--it's been 5 months since his surgery and he's still seizure free. I can't hear enough of these positive stories, but I need a box of tissues while I hear them!

The story was pretty amazing, although the narrator was a little too sensational at a few points. The family is Native American and the mom is a medicine woman. It was fascinating to see the surgeon willingly work with the family to combine two vastly different methods of healing.

December 09, 2006

Waiting for Vigabatrin to Arrive

After we got all the paperwork together to get Vigabatrin sent to us, it took me three days to fax all the info to the pharmacy in Canada. This is the side of me that I truly dislike--the procrastinator. In this case it was a mix of procrastination and dread though. I guess I still had a mental block to get over. It's a huge thing to decide to put your child on a medication that could leave him with permanent vision impairment and even after Rob and I made the decision to go with this drug, my heart just isn't in it. I believe we are making the right decision, it's just hard to believe that something that sounds so wrong is now the right decision.

I also spoke with the pharmacist in Canada and he seemed very nice. We got a smaller amount of the drug than what Dr. Pearl prescribed because we don't want a 6 month supply of the stuff in case it doesn't work, especially since it's not cheap and not covered by insurance. We requested enough tablets for about 2 1/2 months and we should see some results within a month if Vigabatrin is going to have any positive effects on Evan's seizures. If this works we'll be equal parts elated and terrified!

November 26, 2006

Bye-Bye Dilantin

Well, we weren't crazy about the possible side effects with Dilantin, but it looks like that won't be an issue for Evan--the Dilantin is really not working. We have seen no decrease in seizures--he's actually had more seizures than usual but he's also got a sinus infection so that's not a big surprise (Evan tends to have more seizures when he's sick). Last month he had about 55 seizures and in the 3 1/2 weeks he's been on Dilantin he's had about 75 seizures. Our thought is to pull the Dilantin. I sent an email to Dr. Pearl to make sure he agrees with that, but I expect that he will.

Although we weren't happy with the idea of Dilantin, we're even less happy with the next drug, Vigabatrin. I haven't written too much about this drug because I was really hoping we wouldn't be seriously considering it. But here we are with a kid that won't stop seizing and we're running out of good options so now we're onto the not so good ones.

Vigabatrin has been around for several years and has some good results for TSC patients with infantile spasms. Evan doesn't have infantile spasms, he has complex partial seizures, but there is some thought that this might be a good drug choice for him. Even though Vigabatrin has been around for a while, it is not FDA approved, probably because it has the horrible side effect of possible permanent loss of peripheral vision. We cannot get this medication in the U.S. and will have to mail order it from Canada or go to Tijuana to get it in person. If Vigabatrin works for Evan, Dr. Pearl has recommended not having him on it for more than a year to protect his vision--the soonest anyone has had vision impairment after going on Vigabatrin is 11 months. So if it works he may go on and off Vigabatrin and they will monitor his vision closely.

November 18, 2006

Back to Johns Hopkins

We met with Dr. Vining at Johns Hopkins again--we figured it made sense to talk to her after our Detroit trip. Whenever you make an appointment for a second (or third, or fourth, etc.) opinion with a doctor they always look at you and ask why you're there and this time Rob and I didn't sit there looking blankly at each other...

We wanted to get an opinion on Evan's case from a different hospital and hear what Dr. Vining's next course of action would be if he were her patient and we wanted to hear her position on the next drug option, the Vagus Nerve Stimulator (VNS), the Ketogenic Diet and Brain Surgery.

That's pretty much every medical option on the table for Evan right now. Dr. Vining doesn't think the VNS is a good option for Evan and doesn't particularly like any of the drug options available after having gone through four without much success. I joked that at this point Rob and I are equally qualified as any neurologist to choose the next drug and she agreed--it's pretty much a crap shoot.

Johns Hopkins has a lot invested in the Ketogenic Diet and although we've been resistant to trying such a radical treatment, it's better than surgery. We already knew Dr. Vining would recommend this and she didn't disappoint our expectations. It looks like we're going to be on their schedule to begin the diet in February but don't have a set date yet. Basically, Evan will be admitted to the hospital for 4 days where they will begin the diet and put him into ketosis. We will be trained on how to administer the diet too. This is basically the Atkins on steroids--no sugar, no starch, heavy protein and all food items must be measured to make sure Evan eats exactly the correct amount per day. The portions are small so he won't like it and chocolate will no longer be a part of his daily routine--I don't know how we'll reward him for using the potty!!

So that brings me to surgery--none of the doctors are thrilled about surgery but all admit we may likely end up there. Everyone is hoping something will work that will keep us out of the offices of Neurosurgeons. That's pretty much the gist of the appointment--in cliff notes.

November 10, 2006


GoodSearch logo

So I don't know how many people have heard of this, but I just came across it this week and I thought I'd share what I found out. Yahoo has powered an Internet search site called that donates money to designated charities or schools every time you do an online search through them...


  • The search results are the same as if you use Yahoo and approximately one cent is donated to the designated charity for each search. I hope you'll give it a try and support the cause that you care most about, and if you don't have a charity in mind, please consider the Tuberous Sclerosis Alliance. They've raised almost $300 this year already, which may not sound like much, but every little bit helps!

    The more people who use this site, the more money will go to those in need. So please spread the word to your friends and family.

    Epilepsy Symposium

    Yesterday I went to an Epilepsy Symposium hosted by Children's Hospital in D.C. Unfortunately Rob had a shoot this week so he wasn't able to attend. It was pretty incredible---an entire day full of lectures and events. The day was informative, emotional and overwhelming to say the least.

    The morning was filled with lectures from doctors on topics covering the basics of epilepsy and seizures, medications and side effects, alternative drugs and therapies, learning disorders, behavioral disorders and psychological disorders. So it was a pretty intense morning with a lot of not so uplifting information. I found myself fighting back tears at many times.

    When we broke for lunch there was a panel of teenagers with epilepsy who talked about their experiences. They were so well-composed and thoughtful answers and I felt very emotional as they spoke. Many of them have learning disabilities and some have had seizures in school. Some have told their friends they have epilepsy and others felt it was to private to share with classmates. What really struck me was how positive all the kids were. They all just want to be treated like everyone else and want to be encouraged to follow their dreams. I really admire all of them.

    Most of the sessions after lunch were topics surrounding advocacy: how to deal with the school system, utilizing the Epilepsy Foundation, helping teens with epilepsy transition into adulthood and parent discussion panels.

    It was quite an event. I met a lot of doctors and parents and even bumped into a few people I already knew, but afterward I was exhausted!

    November 08, 2006

    Guarded Optimism

    I know it's been a while since I posted anything and it's only because I'm tired. We haven't had any down time since before we went to Detroit and life has just been crazy!

    We started Evan on Dilantin and it seems to have reduced the seizures. Evan is now having on average 1-2 seizures a day instead of 4-5. So that's improvement at least. There have been a couple days with no seizures and he had 8 one day. So, the road continues to be rocky but we are trying to remain optimistic.

    October 24, 2006

    Ashley Has Seizures Now Too

    So who is Ashley you ask? Evan's imaginary pet dinosaur of course! She's just a baby and very small but she's having a lot of seizures.

    I'm not sure if the right response is to laugh or cry as Evan declares that Ashley is having a seizure, but it really is cute and you can't help but snicker a little. He turns all his attention to her or holds her while she has a seizure. He also talks to her while she has the seizure and lets us know when it's over so we can tell him how long it lasted. Poor little Ashley has cluster seizers and can easily have 10 of them in a row, but they are quick...10-40 seconds.

    Evan's seizures are not traumatic experiences for him so I tend to think this type of imaginary play is really just a reflection of what is normal to Evan.

    October 23, 2006

    Appointment with Dr. Pearl

    Today we went to see Dr. Pearl for Evan's 3-month appointment and follow-up from the AMT Pet Scan. We came away with quite a bit of information--more than I had expected.

    Dr. Pearl was disappointed by the results of the AMT PET scan because it showed a larger area involved than originally expected. We had all hoped the test would pinpoint the tuber(s) as the trigger for Evan's seizures, but instead, a large area is identified as having increased activity and it is no longer such a "simple" brain surgery.

    Because Evan is so "high functioning", Dr. Pearl doesn't feel surgery is a good option at this time because the seizures aren't effecting Evan's cognitive abilities. His opinion is to wait and see how things go and keep monitoring Evan to make sure he continues to develop at the same rate. If the seizures begin to have a negative cognitive effect, Dr. Pearl said he would feel differently about surgery.

    He agreed with Dr. Chugani about trying Dilantin or Vigabatrin for the time being. So, our next drug is Dilantin and we're going to give it a two week trial to see if it reduces the seizures. If not, we'll move onto Vigabatrin and we'll probably give it the same amount of time for a trial. We're not thrilled about either drug and both have some nasty side effects that can occur after 6-12 months of usage. So, I guess we only have to worry about that if one of them works.

    October 20, 2006

    Preliminary AMT Pet Scan Results

    From my extensive neurology studies, I'd have to say it looks like the results from the AMT Pet scan are inconclusive. Not the best results. There were no surprises, but no real new information that I can tell.

    I emailed with Dr. Chugani and he said "The scan shows increased activity over a large area on the right side, including temporal and parietal cortex. That whole area should be covered by grid electrodes, and what should be resected will depend on what the grids show. This is a useful guide as to where to put the grids...Certainly, the AMT scan showed a larger area then I would have suspected, and that's why this should all be covered by grids."

    So, when he mentions grids, he's talking about having brain mapping done to see exactly where the seizures are starting to see what area of brain should be removed (resected). This test is a small surgery of it's own and the grids are put directly on the brain. This test would only be done once the decision to have surgery has been made.

    We're starting to get into more hairy discussions about possible courses of action for Evan and surgery comes up in every conversation with doctors now. We'll meet with Dr. Pearl on Monday and it'll be interesting to hear what he has to say about the AMT Pet results, medication choices and surgery.

    October 16, 2006

    AMT Pet Scan

    The hotel we were staying at in Detroit filled up and I had a hard time getting back on the computer they had in the business center so I am updating this from home.

    Evan did really well with the AMT Pet Scan on Friday. This test is the one that will hopefully identify which tuber(s) trigger his seizures. The test was two hours long and he was sedated for it. I was able to stay with him the whole time and Rob took Aria to the Ford factory tour for an outing.

    Evan had the best pediatric nurse I've ever encountered and she was amazing to watch. I told her Evan is somewhat phobic about getting his vitals taken and she was able to get everything she needed without Evan fighting her or even crying! She just took her time and got down to his level--she gave him about 20 stickers that he quickly covered himself in and I think that helped break the ice! She also gave him some control and he pushed the blood pressure button. When Evan came out of sedation he was like a drunken soldier, staggering around and falling a lot, but that improved after he got something to eat. We don't have any results yet but are hoping to know more soon.

    On Friday night Linda, Claire, Casey and Molly showed up and it was great to have some time to see them and catch up! We spent all day Saturday together and the kids had a blast playing with each other. They interacted so well with each other it was hard to believe they had just met! On Saturday night Linda hung out with all three sleeping children while the rest of us went out for a night of gambling--I thought we were due some good luck, but no big windfalls to report!

    October 12, 2006

    Big Doctor Day in Detroit

    It's been a long day and my whole family is asleep--and it's only 8:00 pm! Evan had an EEG, a Pet scan and an appointment with Dr. Chugani today.

    We knew this was going to be the hardest of all the tests, primarily because Evan couldn't be sedated for it and he's not the most cooperative patient. We were expecting shrieks of terror as medical staff held him down, swaddled him and put the EEG leads on his head.

    We did our best to prepare him for the test and arrived equipped with lots of Thomas the Tank Engine paraphernalia and early birthday presents from Auntie Rosette, Uncle Bryan, Quentin & Sasha. Before they began the EEG prep, we asked if we could try to see if he'd cooperate before they swaddled him, although, even I wasn't sure it would work! As we began the process, Rob took Aria out of the room to explore the hospital--no need to have two freaked out kids! So, I began doling out the birthday gifts in the attempt to distract him, and amazingly, it worked! I won't go so far as to say that he was happy with the whole experience, but they didn't have to swaddle him. I read to him, sang to him and told him stories as they worked.

    After the EEG leads were on his head they gave him an IV, which was no picnic, but they got the vein on the first try. Next they wrapped a towel around his neck (like Rocky) and taped him to the bed--several pieces across his chest and a couple across his legs which were covered in a blanket. They did this because they didn't want him to move around or pull at the EEG leads. Once they began the testing, he had to lay still and I wasn't supposed to interact with him for the full 30 min. test. He did really well and his arms weren't restrained, so I held his hand through the test and calmed him when he cried a little. When the test was over Evan and I were both really glad!

    Pet Scan
    Immediately following the EEG, we walked across the hall to have the Pet Scan. Before getting the sedation, Evan had a seizure while they were taking his blood pressure--too much stress for him I think. Everyone in the room seemed to feel really bad that he had a seizure and decided they didn't need the blood pressure. I think they thought I would be freaked out too, but I'm pretty used to the seizures at this point and it was the fourth one today. While they sedated Evan, I was able to hold him in my arms as they put the drugs directly into his IV site. He gently fell asleep and we put him on the table to have the Pet scan. This test was also 30 min. long and he slept through the whole thing.

    When the test was over and Evan woke up, Rob and Aria joined us in one of the exam rooms and we washed all the EEG goop out of Evan's hair, got him dressed and headed to the cafeteria for lunch.

    Dr. Chugani
    After lunch we met with Dr. Chugani for a consultation appointment. We were very impressed with and him and since he was already familiar with Evan's case, he pretty much knew what we were going to ask before he walked in the room.

    So, basically, the whole reason for having the testing in Detroit is because Evan is a candidate for brain surgery. The hope is that the AMT Pet Scan tomorrow will identify which tubers are "hot" and causing seizures, that way if surgery is the only option, they know which one to remove.

    Dr. Chugani said he thinks the tuber most likely to be hot is the one right next to his motor strip and removing it would most likely leave Evan with a permanent impairment of his left hand--maybe a little, maybe a lot. Because Evan is not suffering in terms of cognitive development, Dr. Chugani recommended trying one or two more drugs first. The two drugs he mentioned are Dilantin and Vigabatrin and we're not thrilled with either, but if one of them works, it's better than surgery. It's also possible that one of the other two tubers are the cause of Evan's seizures, but unfortunately the Video EEG results point to that one too.

    So I guess we continue our dance with the conversation of surgery and drugs for a little while and hope that when we have to make a decision, we make the right one.

    October 09, 2006

    Look out Detroit, here we come!

    We leave day after tomorrow for our Detroit trip. We've thoroughly researched the goings on in Detroit and I'm happy to say that it looks like there's actually quite a bit to do there! We will have downtime on Wednesday after we arrive and all day Saturday. Evan's test on Friday is three hours long so one of us will probably take Aria to do something during that time as well.

    What is there to do in Detroit you ask? Well, we focused on kid-friendly things and came up with a pretty good list:

    Ford Factory Tour
    Greenfield Village
    Detroit Science Center
    Detroit Children's Museum
    Belle Isle
    Westview Orchards
    Holiday Inn Pool (this one might get a LOT of use!)

    We won't be able to do everything, but it gives us some good options!

    On Friday, my cousin Claire, her husband, Casey, their daughter, Molly and my Aunt Linda are all joining us in Detroit for the weekend! Since Indianapolis is only 5 hrs. away, they decided to make the trek. We're hoping to have adjoining hotel rooms too. I'm really looking forward to seeing everyone, and it's so nice to have the family support too!

    October 07, 2006

    New Findings: Chocolate Milk Prevents Seizures!

    Ok, I'll qualify this--new findings at the Moss house, and purely unscientific. We have been giving Evan a LOT of chocolate milk and he hasn't had any seizures in two days! Although there may not be a lot of scientific evidence here, it is an uncanny correlation! And it has the added benefit of making Evan (and Aria by default) very happy. I'm also happy to report that Aria hasn't had any seizures while on the chocolate milk therapy--she is the control group.

    October 02, 2006

    We're going to Detroit!

    It's been a whirlwind getting the appointments in Detroit scheduled because we have three appointments to schedule while we're there and it's a lot to organize! But we got everything worked out this morning and we'll be in Detroit next week! Here's the rundown of appointments:

    Oct. 12
    9:15 am -- Glucose Pet scan with EEG
    3:00 pm -- Consultation with Dr. Chugani

    Oct. 13
    12:00 pm -- AMT Pet scan

    We'll arrive in Detroit around noon on Wed. and will leave Sun. morning. We plan to check out the Ford Museum on Sat. and hopefully have some fun while we're there!

    Dr. Gaillard

    Yes, we have another new doctor to add to our collection of neurologists! We met with Dr. Gaillard at Children's Hospital in D.C. this morning and he seems like yet another impressive doctor on staff there.

    There wasn't much new information today, but it's always interesting to hear another perspective in our information gathering. Evan is quite "famous" in the Epilepsy Center and he was more than a little familiar with Evan's case. Apparently they review his case almost every week in the big meeting they have every Thursday. Hmmm, should we be flattered or scared that 25-30 doctors talk about our son every week?

    These appointments get increasingly harder, logistically speaking, especially with Aria in school 5 mornings a week! This morning David came over early and shuttled Aria to and from school. He and Gretta are in the process of remodeling their house, so he was also happy to have a place to do some laundry and it was a huge help to us!!

    September 25, 2006

    Normal Life

    Last weekend Evan had a seizure and it was clear that he had an aura (feeling indicating a seizure was coming) prior to the seizure. We were playing outside and he told me he was having a seizure. He didn't look like he was having one so I asked him to come over to me--he walked normally with no obvious seizure occurring. I picked him up and sat down with him on my lap and 10 seconds after he told me he was having a seizure, it began.

    The seizure itself was pretty typical for Evan. He shook on the left side, had a goofy smile, never lost consciousness and was able to talk during it.

    As soon as I picked him up, Aria said she needed to go into the house to get something and she was off. In no time she was back, wearing her watch--a craft kit Claire sent her to do while Evan was in the hospital last month. As soon as she reached Evan and I, she looked at her watch and asked me if his seizure was over. When I told her it was, she looked at her watch again and asked me how long it lasted. I told her it was a minute and 15 seconds. "Ok" she said with one more glace at her watch and then she was back to playing and Evan hopped off my lap and joined her.

    I found myself fighting back tears. A 2 1/2 year old shouldn't know what a seizure is and a 4 1/2 year old shouldn't know you have to time a seizure. Neither of them were moved by this exchange--it's normal for them.

    September 22, 2006

    How's Evan Doing?

    Seems like such a simple question and yet this is one of the hardest questions to answer. I never really know what people are asking with such a simple question. This is what runs through my head:

    What is the real question here? How is Evan doing in a general way? He's fine, great actually! He started school and loves it! He's developed a solid obsession with Thomas the Tank Engine and it seems to be what his world revolves around. Or is the question more daunting? How is he doing in a medical sense? Hmm? What is really being asked? How many seizures is he having? Too many, that's for sure! He's having seizures almost every day and usually anywhere from 1-7 seizures in a given day. He had one at school too, so the teachers have something new to get used to. Maybe the question is really about surgery...we really don't know yet, there is some more testing that needs to be done, but we are certainly exploring that possibility. Is the question about medication? We still haven't found one that effectively manages his seizures and the chance that any med will work is drastically reduced--I'm not trying to be a pessimist here, but we're on the third drug and three is the magic number--if the third one doesn't work, subsequent drugs aren't likely to. Or maybe the question is about his walking and balance issues? He's still having PT once a week and is making good progress but he's probably got a lifetime of PT ahead of him.

    So, all this runs through my head in about 2 seconds and then I give the answer "He's doing good."

    September 19, 2006

    Follow up w/Dr. Pearl

    We had our follow up appointment (from the video EEG) with Dr. Pearl and he was more interested in talking about surgery than he ever has been in the past. It appears that all the seizures are starting from the same tuber and it is accessible. So there it is, we're back to the conversation about surgery. I guess we never really left the topic, but it seems to be creeping to the forefront.

    Our goal remains the gain control over the seizures, hopefully through medication. The disappointing part is that it isn't working yet and he is still having almost daily seizures. So the new plan of action is to change Evan's medication schedule to three times a day instead of twice a day. He consistently has seizures in the evening, so the thought is that he may be metabolizing the medicine too quickly between dosages.

    The next test is still the AMT PET scan in Detroit and we're waiting to get that scheduled.

    September 16, 2006

    Speech Evaluation

    So we took Evan for a speech evaluation on Friday to get a developmental baseline and explore the possibility of speech therapy. He has a very large vocabulary but is difficult to understand. The question is: Is he hard to understand because he's not quite three years old or does he need therapy? They are basically on the fence about it and gave us a vague answer about therapy...we could persue it now or wait 6 months and see if he seems to need help in that area.

    Whle we were at the hospital for the testing we ran into one of the neurosurgeons we met with and rounded another corner and bumped into Dr. Conry, a neurologist we saw for an additional opinion a few months ago. Kindof funny to see both of them in the hospital hallways!

    August 28, 2006

    AMT PET Scan

    We have had a lot of questions about the schedule for the AMT PET scan in Detroit, and we are hoping to get it scheduled as soon as possible. Unfortunately, Detroit is the only hospital in the country that does this test and Dr. Chugani (at Detroit) is the only doctor who can order the test.

    So, to make a long story short, Dr. Pearl has to send Evan's records to Detroit and talk to Dr. Chugani, then the hospital in Detroit will contact us about scheduling the test if Dr. Chugani agrees that Evan should have it. In the process of finding this out, someone at the hospital in Detroit mentioned sending an email directly to Dr. Chugani, so I did that too and CC'd Dr. Pearl. I am amazed at how many specialists will willingly give out their email address--hopefully they don't regret giving it to us! We do take full advantage of it!

    Developmental Evaluation

    Today Evan had a Developmental Evaluation at Children's Hospital in D.C. This is basically so they will have a baseline of all his developmental milestones to make sure he continues to develop at the appropriate pace. We were there for about 2 hours while they tested him through play activities and he's basically doing really well.

    We got some good feedback and tips but were also told to cut out TV completely and get rid of the sippy cups. Uh oh, I see some resistance coming our way! He doesn't watch that much TV, but he likes his sippy cups!

    August 25, 2006

    Video EEG -- Day 5

    We're home--all of us are home!!!! Evan was released from the hospital today around lunchtime and was so happy to be home! He immediately started running around the house and playing with the toys we didn't bring to the hospital.

    Dr. Pearl thinks he got enough seizures on tape even though we missed the "whopper"--Evan saved that one for us at home tonight at the dinner table. Oh well.

    So, we'll get an official report with the results in a few weeks, but from the preliminary information it looks like all the seizures are starting in the same place. Since there are three tubers on his brain that are possible suspects, it's good news to hear that it appears only one is the culprit. This could mean that he is a very good surgical candidate, with extremely optimistic results. This by no means indicates he's going to have brain surgery, but if that's our only option, it could be a good one.

    Up until now, one of our big concerns involved a tuber that appears to sit right on his motor strip. If that one is causing the seizures (which it doesn't appear to be), surgery is daunting because the possible deficit could be pretty major--never being able to make a fist and having an impaired gait. It's huge to hear they don't think that's the case. We don't want to jump at that conclusion too much though because an EEG is only a snapshot in time, and all we really know is that in 5 days all the seizures seemed to originate in the same place.

    Our next step is to go to Detroit to have an AMT PET scan done. This very specialized test is able to distinguish between epileptogenic and non-epileptogenic tubers in Tuberous Sclerosis patients and would give confirmation of the EEG findings. So we'll be calling next week to schedule that test.

    August 24, 2006

    Video EEG -- Day 4

    Here they are hanging out at the hospital watching Bob the Builder. Oh, and yes, that's a sticker on the gauze wrapping around his head. It says "You're Awesome!"

    We are sooooo ready to be done with this hospital stay, but Evan has been such a trooper! He is such a happy little boy and is always ready with a smile whenever anyone comes in the room. It's amazing he's in such good spirits because he's been confined to his hospital room this whole stay with EEG leads glued to his head and a video camera recording his every move. He's been having a great time actually, but it's tiring keeping up with him! The walls in his room are covered with his paintings and drawings and it really does give the place a cheery look.

    He didn't have any seizures yesterday but he had a couple today. Unfortunately, we're still waiting for one of his big seizures and probably won't go home until he has one, so from the looks of things, we'll be at the hospital until Saturday morning.

    Video EEG -- Day 3

    Sieze, baby, sieze has been the mantra of the week as we anxiously wait for a longer seizure. The doctors want to try to get examples of each different type of seizure he experiences and the "whopper" has been annoyingly elusive. Tonight we're going to pull one of his meds in the hopes of helping things along.

    After the 12-pack of doctors came through, the physical therapist visited and brought Evan an exercise trampoline to play with all morning. He had a great time with that! Evan had a much needed nap before Grandma Mabel and Aria arrived for the daily play date. They've been coming every day and staying until about 7:00. Aria has been great through this experience and actaully looks forward to coming to the hospital to play, hang out and have dinner with Evan.

    Grandma Mabel has been transformed into "Soccer Grandma" and brings Aria to soccer camp every morning before heading over to the hospital with her. Apparently Aria takes soccer pretty seriously and is in dire need of a bath after camp every day! It's been great seeing the two of them together and I don't know how we would have pulled this all off without the extra help.

    August 22, 2006

    Video EEG -- Day 2

    Today was a very busy day in room 4122, and we might suggest the hospital install a revolving door! Dr. Pearl came in with about a dozen additional white coats--medical students, residents and fellows--and I told Evan we were having a doctor party! We were also visited by 2 physical therapists, the child life specialist, the EEG tech and multiple nurses. That was before lunch!

    We had a family party / luncheon when Auntie Mary, Liza, Miriam & Samuel arrived. Evan had a great time playing with everyone and the diversion was good for all of us! It wasn't long before Grandma Mabel and Aria arrived and as my mom said, "the world stopped for Evan when Aria walked in". He was so excited to see her and his face was beaming, especially when she handed him a soccer ball from her soccer camp! The two of them are so close I can't help but smile just thinking about them together!

    As Mary and crew left, I took Aria to play "Hospital Bingo" while my mom, Rob and Evan played with trains. Aria and I are true Bingo sharks and returned to the room with 4 prizes! I suppose I should mention here that we were the only two participants that showed up, but winning is winning!

    Evan and Aria spent the rest of the day playing together--trains, painting, trains, trains, legos, trains, coloring, trains, stickers, trains, movies, trains, etc. After dinner my mom, Aria and I went home for the evening. Rob and I are taking turns sleeping at the hospital and I hope his night goes better than mine did! Evan seemed to sleep well but I tossed and turned all night--I hate sleeping in hospitals.

    As for the seizure report, he had at least 3 again today, but we're still waiting for one of the longer ones (60-90 sec.) before they'll send us home. We haven't seen one yet, but we're hoping for one tomorrow--now that's a switch, hoping for a seizure!

    Video EEG -- Day 1

    Evan did extremely well on the first day and impressed us all! He seems to have conquered his fear of the medical establishment for the most part and now spends his time charming everyone that walks in his room!

    Having said that, I'll admit, the first part of the day was rough. He had to be sedated because of his high freak-out factor--there's no way he'd willingly let anyone put EEG leads on his head!! While he was under sedation he also had his eyes examined to make sure he doesn't have any retinal lesions which is sometimes an issue with Tuberous Sclerosis patients. I'm happy to say that he got a clean bill of heath from the opthamologist.

    Evan was pretty freaked out when he came out of sedation and we were scared about how the rest of the trip was going to be, but before long, we settled in and he was pretty much back to normal. When the Neurology resident came in to examine Evan, he started telling her knock-knock jokes--a little ladies man already!!

    Evan had at least 3 seizures in the evening, so if we're lucky, they'll get the information they need and let us leave before the whole 5 days are up!

    August 14, 2006

    Video EEG Scheduled - Aug. 21-25

    Well, I guess things are going to get a little crazy for us next week when we go to Children's Hospital in D.C. for a 5-day Video EEG. Basically, Evan will be hooked up to an EEG monitor and videotaped for 5 days. He won't be able to leave the room which may be a little intense, but we're trying to come up with activity ideas to keep him occupied. I think he'll actually be fine, but I'm not going to predict the state of mind for Rob and I after this!

    Grandma Mabel is going to fly in from Minnesota to take care of Aria while Rob & I are in and out of the hospital with Evan. He needs to have a parent with him at all times, so we'll take turns giving each other breaks, as well as take turns sleeping there--ugh!

    It shoud be interesting, I just hope we're not sharing a room with another kid!

    July 24, 2006

    Renal Ultrasound

    Last week we took Evan to have a renal ultrasound and much to our surprise, he was completely calm through the entire appointment. It's not that they were doing anything painful, he's just been so freaked out at all doctor's appointments lately. So, the purpose of this appointment was to examine his kidneys to check for any tumors that would be consistent with a Tuberous Sclerosis diagnosis.

    Up until today we have been told he most likely has Tuberous Sclerosis and unfortunately, today it was confirmed. After looking at the ultrasound results, they determined that he has a small tumor (an angiomyolipoma) on his left kidney. The good news is that only one kidney is involved and people are sometimes even born with only one kidney.

    The tumor is about 6mm and they don't get worried until they are get to 5cm. Because the tumor has the potential to grow, Evan will have renal ultrasounds every 1-2 years to monitor it. Apparently this type of tumor doesn't tend to grow until or after puberty, so if it follows the rules we won't have to think much about it for a while.

    Not the best news today, but it could have been worse and I'm thankful it wasn't.

    June 19, 2006

    Alopecia Areata

    Ok, so I'm starting to feel like Evan is collecting diseases and disorders. About a month ago we noticed he has a small bald spot, about the size of a quarter on the back of his head. We didn't think too much of it but had his pediatrician look at it when Evan was being seen for something else. She recommended having a dermatologist do a scraping to see if it was caused by something fungal.

    So, today we were off to yet another specialist. The dermatologist doesn't think it is caused by a fungus--it's possible but unlikely. He thinks it's more likely Alopecia Areata.

    Latin Translation:
    Alopecia--hair loss

    Makes sense to me. So he gave us a topical steroid cream to put on it and he's having the hair follicles tested, so we'll see what happens. Here's more info than you ever wanted to know about Alopecia Areata:

    June 05, 2006

    More Testing

    The last few weeks have been pretty crazy for our schedules and I think it will continue to be hectic until the end of July when we'll be able to finally catch our breath again. I've been asked a lot of questions about additional testing, and this is pretty much the breakdown of what we're looking at having done:

    Developmental Evaluation
    This will give baselines for where Evan is developmentally to include fine motor, gross motor, language skills, social skills, etc. It is important to have this baseline for the doctors to refer to when determining if the seizures are creating any kind of deficit. Evan is ahead of age on everything except gross motor and they want to make sure he continues to progress accordingly.

    Week-long Video EEG
    We are not looking forward to this one. Evan will be hooked up do an EEG in the hospital and video taped the whole time. The goal is to see where the seizures are originating and how many areas are involved once a seizure starts. This will also reveal if he's having more seizures than what we're aware of.

    Renal Ultrasound
    This is pretty basic, non-invasive and involves no painful procedures so I would like to think it'll be pretty easy. Unfortunately, Evan freaks out as soon as he sees an exam table, so I'm dreading even this simple test. Because the kidneys are often affected in Tuberous Sclerosis patients, this would be a test that could confirm a diagnosis of TS. If there are any issues with his kidneys, that is something that would have to be closely monitored.

    Eye Exam for TS
    Again, another simple test that would be dreadful for us. This one we'll probably hold off on for as long as we can though. The benefit is that it could give a TS diagnosis because the eyes are often affected, but if the eyes are involved, it usually doesn't cause any vision problems, so we're having a hard time giving the green light on having a test done that will freak Evan out and not change anything in terms of his medical treatment.

    May 31, 2006

    Rob's Parents

    I know it's been a while since I posted anything--it's been really crazy in our house lately. Rob has a photo shoot for three weeks and his mom and Bill came up to watch the kids for two weeks before they go to Ethiopia with Becky and her family to finalize their adoption of three kids. I guess the entire family is pretty hectic right now!

    It has been so helpful having Betty and Bill here and has made things so much easier on us. Poor Betty has been watching sick kids almost the whole time, and we've run the gamut---fevers, vomiting, stitches and a sinus infection! I don't know how we would have managed all the illnesses if they hadn't been here.

    I know the kids are wearing them out (they wear us out too) and we are just so grateful for all the help. Having them here reminds how fortunate we are.

    May 21, 2006

    Seizures or no are kids!

    We had a busy day yesterday, with the TS Clinic all morning, and since we're not the sort of family to slow down and take it easy, we spent the evening in the ER with Evan and a split chin that required three stitches. He slipped and smacked his chin on the side of the bathtub, so we rushed off to an ER full of parents with small children (by this I mean boys) with minor head wounds. Ironically, all the parents looked exhausted and had blood-stained shoulders while the kids ran around with lots of energy and checked out the vending machine offerings. The next day Evan proudly displayed his stitches to anyone who asked to see them while declaring "I'm tough!"

    Tuberous Sclerosis Clinic

    We took Evan to a Tuberous Sclerosis Clinic on Saturday where we met with several doctors for about 2 1/2 hours. They take a multi-disciplinary approach to managing TS and it was interesting to talk to experts in different medical specialities.

    Evan still doesn't have a concrete diagnosis of Tuberous Sclerosis, and it will require more testing to come to a firm diagnosis. The tests will either confirm that he has it or leave us all wondering if it's TS (which is the most likely diagnosis) or if (although rare) he had multiple brain malformations in utero.

    We have begun the process of switching Evan off Keppra and onto Lamictal. The seizures didn't stop as he maxed out on the drug, so it is clearly failing to control his seizures. This will be the third drug we are trying and statistically speaking, there is only about a 5% chance it will work, so I wouldn't take those odds to Vegas, but it's the best we've got for the time being. At least there is a chance it'll work, and that's better than where we are with Keppra.

    May 16, 2006

    Seizures, Seizures, Seizures

    We have upped the Keppra for the last time and are waiting to see how Evan does. He was starting to have up to a dozen seizures a day and he has gone one day without one so we'll see what happens. It's not the best commentary to be hopeful after one day of no seizures, but that's where we are!

    Dr. Conry

    We waited three months to see Dr. Conry so we kept our appointment with her even though we have had a lot of neurologists weigh in on Evan's case already. She does a lot of work with the Vagas Nerve Stimulator (like a pacemaker) so we wanted to talk to her to see if she thought this was an option for Evan. She said he is not a candidate for the VNS but agrees that he may be a candidate for brain surgery--more tests will reveal that. She also said this is not something we need to rush into but we could likely be making that decision when he's 4 years old.

    May 03, 2006

    Keppra Might Not Be the Answer

    Just less than a month ago I posted that Keppra might be working to control Evan's seizures after he went almost a week without a seizure. Now we're think the medication is failing to control the seizures. He's having seizures almost every day and also having more clusters of seizures. The clusters are usually 3-7 seizures about 15 min. apart, and he's having a cluster every 2-3 days or so.

    We have been increasing the Keppra every week and can only increase it two more times before we max out on the amount Evan can have for his weight. I'm not typically a pessimistic person, but I'm not very hopeful that we're going to see a remarkable improvement on the medication in the next two weeks. Dr. Pearl talked about switching Evan to Lamictal if the Keppra doesn't work, so we may be trying that later this month.


    Last week we took Evan to pick up his orthotic braces--another miserable experience! He really doesn't like being messed with, as I have mentioned, and that's all these people want to do! The poor thing cried and screamed as we put the braces on while attempting to bribe him with chocolate covered raisins--the therapy for that will start years from now, so we're not worrying about it for the time being!

    In the end, we got them on him and he has to wear them every day for gradually increasing intervals until he is able to wear them for 8-10 hours a day. The hope is that they will improve the way he's walking and he's been much more willing to put them on since the initial introduction to them. I think having us do it at home made a huge difference for him.

    As for how they look, I hate them. They are a reminder to me that something is wrong with Evan and I really don't like that fact. He has one for each foot--the right one comes up to about his ankle and the left one to mid-calf. They try to make them as cute as they can--Evan chose dinosaurs to embellish the velcro straps--but they are what they are.

    April 26, 2006

    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.

    April 25, 2006

    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.

    April 21, 2006

    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!

    April 14, 2006


    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.

    April 11, 2006


    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.

    April 09, 2006

    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:

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

    April 07, 2006


    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.

    March 31, 2006

    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!

    March 30, 2006

    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."


    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.

    March 25, 2006


    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.

    March 21, 2006

    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.

    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.

    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.

    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.

    March 20, 2006

    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.

    March 17, 2006

    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.

    March 16, 2006

    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.

    March 15, 2006

    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.

    March 14, 2006

    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.

    March 11, 2006

    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:

    March 08, 2006

    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.

    March 06, 2006

    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.