Apointment with Neruologist

Well, we met with our neurologist, Dr. Kornblum on Tuesday. I had a huge list of questions which he did his best to answer. And we left feeling more than a little down.

Basically, because there are so few cases of this a lot is not known. And I hadn't considered the possibility that maybe nothing, not even surgery would stop her from seizing. I did have it in my head that maybe we should skip to surgery, since I know it can have a very high success rate in eliminating seizures entirely - but my expectations were brought back down to earth. The Dr. said he would not want to operate until she was a bit older, like 6 or 12 months old. And that was only if, at that time she was a strong candidate for the surgery, which would involve another hospital stay, in depth testing and possibly getting a second opinion (in depth testing included) at another hospital (he suggested John's Hopkins or Harvard Medical School).

It is really hard to sit here and watch her have an episode, especially when she screams every time she has the spasm (which can be 20-40 times in 8minutes). Researchers beleive that these spasms aren't harmful, the problem is they prevent the brain from it's regular learning which can slow developement, and after a seizure people tend to be confused for a bit and then want to sleep. Dr. Kornblum says that it isn't the spasm that can cause autism, epilepsy or development problems, it is the thing that is causing the spasms.

I emailed out the link to this blog to my family and friends and almost right away my cousin Julie got back to me. It turns out someone she knows has a child with a very similar diagnosis. So I'm looking forward to talking with her. On her blog about her son Ty, she had this link about surgery as a cure for Epilepsy. http://www.msnbc.msn.com/id/18786765/from/ET/ I thought you might find it interesting. Of course, we are still hoping that the medicine she is taking will help. Cross your fingers. The Dr. just doubled the dose, so hopefully there will be some improvement.

As far as the chiropractor goes, the neurologist is strongly against it. He said it won't help and it could hurt. Acupuncture is the other thing we were looking into, and he supported that although, he feels the needles would be really uncomfortable for Marleigh and that you always have to be careful not to expose her to infection. I think there is also a kind of pressure point massage they can do, and I like the spiritual aspect of it. We are going to avoid herbal treatments for the time being, aside from the vitamin B6 that is. As for me, I'm still going to make a chiro appointment ;)

Keith is doing good. I think it is hard for him to be back to work with all this going on. But he has enough vacation that he can take days off when she has an appointment.

Dylan is also well. He has a lot of fun at his preschool and enjoys being a Big Brother. He was pretty worried when we were at the hospital, asking a lot of questions about the wires on her head and the IV. But now he seems better. He likes to lay on the blanket with her under the play gym.

And finally, Marleigh is actually doing great. When she is not having a spasm she seems totally normal. And today, for the first time, she smiled back at me. She had been smiling, but this time I know it was in response to my smile. That gives me some hope that she'll be OK.

Looking for Answers

Well, we have been home from the hospital for more than a week. At first we felt like maybe something would happen right away with the medicine, even though they said the dose she was on was very weak (Zonegran 12mg, 2x a day). But, we couldn't help but feel hopeful after the relatively optimistic diagnosis by our doc. He said and I quote, "This is my favorite result". By that he meant that of all the bad news, finding the problem was a small spot in Marleigh's brain was the best of all the possible bad causes. The only other potentially good outcome would have been to find no cause for the seizures, because often the undiagnosable seizures resolve themselves with no later complications. The other good news is that the surgery would happen at UCLA and our Dr. would be the one to do it.

I'm not one to sit still, especially when I'm watching my little girl have up to 20 seizures a day. So I made an appointment with a holistic Chiropractor. We met on Monday (8/25/08) with Dr. Tom Tatasciore, DC and he said that Marleigh's spine was way out of alignment, especially at the very top where the skull connects to the spinal cord. He did some gentle massage and adjusted her. I thought he was fantastic and I'm going to make an appointment for him to treat my neck too. He said he considers himself a healer and got a good feeling from Marleigh. He didn't think anything he could do would help reduce her seizures but I feel like anything to keep the overall health of the body is good. And we are worried that she is in pain during her spasms because she usually begins screaming about half-way through each episode.

So far the medicine hasn't helped much. After we meet with the neurologist on Tuesday I'll have more info.

The beginning

Hello Friends and Family.  We are creating this blog to help keep you updated on Marleigh's progress.  I'll start with the background.

August 14th is when I started to feel like something was wrong.  I noticed that Marleigh was behaving strangely.  It looked like she was being startled (the Moro reflex, in babies a tendencyto throw their arms out and grab for things when they're surprised by a loud noise, for example.)   but it kept happening over and over.  I showed Keith when it happened again later that night and we were both concerned.  The next morning, I started writing down how many times she had this jerky movement, and it was about 30 times in about 8 minutes, but with a little break of approx 8 to 10 seconds in between.    I called her pediatrician, Dr. Marna Geisler, for an appointment but she was at lunch.  About 2 hours later (now approximately 3 pm) she had her nurse call me back with the phone numbers of 3 pediatric neurologists.  I was a little disappointed that she didn't call me herself, but the nurse said she had no experience with seizures.  

I called the first one on the list, and thankfully they took our insurance.  I asked to speak to the Dr. so I could get a feeling for hour serious this was.  The receptionist said the Dr. doesn't talk to you until you have an appointment.  I was a little annoyed but I made an appointment.  - it was scheduled for two weeks later!  This is what I hate about the Medical Industry At this point I did not realize how serious her condition was, mostly because when she was not having the strange behavior she seemed completely normal, happy and healthy.  So because her pediatrician didn't speak to me, nor did the neurologist, I started to wonder if I was overreacting.  Good news for Marleigh... I'm just not satisfied until someone hears me out and then tells me I'm overreacting.

Keith got home around 5:30 and by then I was growing more and more concerned.  Primarily because I was watching her constantly for any signs of seizure and noticed that it was happening roughly every 2 or 3 hours.  By 10 p.m. that night we decided to go ahead and call Dylan's old pediatrician.  (Side Note: We left that Dr. because they went out of network and we couldn't afford to pay out of pocket for the office visits - but we LOVE them, and you will too, read on).

I called the emergency line, and requested we be called first thing in the morning.  Dr. Jenna Roberts called us and after a brief account she told us to come into the the office right away.  By then I had managed to video a couple of "episodes" because I was afraid she wouldn't do it while we were there (she did have an episode at the office).  Dr. Roberts was concerned and she paged both the neurologist that I made the appointment with and another neurologist.  They both told her the same thing, "Send them to UCLA Medical Center right away."  She mentioned it might be Infantile Spasms, but at the time I didn't know the implications...

Keith, Dylan and I went straight to the ER, where three Doctors were expecting us, thanks to phone calls that Dr. Roberts made on our behalf; the ER Dr. plus two Pediatricians who work in the ER.  The staff there was amazing, and even though we did have to spend about 8 hours in that tiny, loud ER room Marliegh was already equipped with the EEG leads, EKG wires and had an IV all being monitored before we got moved to a private room.  

She had the EEG leads glued to her head through Monday, they did were doing video telemetry, which means they video taped her so when there was interesting brain activity in the EEG they could see what she was physically doing on the video at that moment.  The found that she is having 'Infantile Spasms' but was not displaying the Hypsorythmia pattern (this is good because that is an indicator of West Syndrome, and it would be better if Marleigh did not have that).  If you are curious about Infantile Spasms you can read the basics on Epilepsy.com.  

Dr. Harley Kornblum is one of Pediatric Neurology specialists at UCLA (currently ranked #3 best hospital in the nation).  He is one of a team of 4 that are working on our case.  Plus we have several Residents working with us as well.  On Sunday morning Dr. Barton (a resident) stopped before the morning meeting prior to rounds and checked in on us.  Later he was back with Dr. Kornblum to give an initial assessment and look her over in person.  On Monday, we had about 15 Dr.'s in our room to see Marleigh.  It was prior to the MRI that Dr. Kornblum thought he saw an asymmetrical smile, which would indicate a problem with the brain.  I guess he wanted the residents to see this.  I figure the more people working on helping her the better.

The hospital moves pretty slowly on the weekend so we couldn't get in for an MRI until 1:00 pm on Monday.  This was only scary because they don't let you stay in there with her and she had to be sedated so she would keep still enough for them to get a good scan.  Before they sedated her she had to go 6 hours without food.  She was pretty groggy the rest of the day.  The up-side is the anesthesia tends to decrease seizure episodes, so at least she got a little break from that.  Around 5pm Dr. Kornblum (our neurologist) came in to talk to us.  He said they did find an abnormality in her front left cortex. He called it a focal Cortical Displaysia.  This is surprisingly good news, because in 1/2 to 1/3 of all cases of infantile spasm they do not find out what is causing it.  So if none of the medicines we try stop the seizures then at least we have the option of brain surgery.   This diagnosis also spared Marleigh from a spinal tap.

Basically, we got discharged a few hours  later, with a prescription for Zonegran and B6 and an appointment with Dr. Kornblum for one week later.  We are writing all of our questions down to hopefully get some more detailed answers then.