August 28, 2006


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!