Hospital Holidays

Happy Holidays to everyone. We are happy to report that Marleigh is doing well after another stay at the hospital. This time we were at Cedars-Sinai (which, in case you didn't know, is where Julia Roberts had her twins *Fun Fact).

Marleigh has had really low sodium because of the new blood pressuer medicne she was on (Lasiks). We thought that she was doing well, but we knew that there was a chance this diuretic would pull her electrolytes from her system. So she had a blood test 1 week after she started the drug. The result was that her sodium and chloride was very low. The Drs all thought it would be OK if it did not continue to drop. Unfortunately it did drop, much more and more quickly than we anticipated. Suddenly we were packing and heading into the hospital. When you loose sodium it can be very bad for your system and even cause siezures. Because she lost it slowly over 2 weeks her body had become accustomed to less salt so they couldn't add it back quickly, it had to be slowly raised over many days. We found ourselves spending 3 days in the hospital, mostly just hanging out in the room. Keith and Dylan stopped by during the day and there was a cot in the room for me to sleep in at night.

Since we missed Christmas, we had it a day later - Dylan didn't know the difference, thankfully it is easy to keep the fantasy alive with a three year old. He doesn't even question when the gifts from Santa are wrapped in the same paper as the other presents. And he didn' question us when we returned one of Santa's gifts to Toys R Us and exchanged it for one that worked. We had to take at least one photo of Marleigh in the hospital with that cute Santa hat. Especially since she didn't get a photo with Santa.

She has a terrible cold, they x-rayed her chest while we were at the hospital and thankfully she is not developing pnemonia. She does have an ear infection and it looks like she may have started teething. Needless to say her mood has not been the sunniest - but hopefully she'll be feeling better in a few days.

We are now on a new BP medicine (Amlodipine) and she is doing very well now that we are home. We have another blood test on Monday to make sure she is in good shape and only a couple more weeks of the ACTH. So far so good. We can only hope that the seizures do not return.


The firefighterswere bringing in gifts to all the kids in the hospital. They gave her a hippo stacker. And I gave them a hug!


Marleigh and Daddy at Dylan's Holiday Party. I'll post something from this on the other blog.

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.