Cook Childrens: Day 1

Monday morning we get to Cook's Children's Hospital at 7:45a. Go straight to registration, then immediately taken to the EMU (Epilepsy Monitoring Unit) of the hospital. It's the 4th floor of the neurology wing.

We get in our room, about the size of a smaller guest bedroom with a small table, 2 chairs, 1 recliner, 1 crib (cage) and a sofa. There is a bathroom that is almost as big as the room itself. A TV mounted on the wall, a built in closet and a space near the door for the nurses.

Let me just say that the first day is very overwhelming for the baby and the parents.

First the nurse comes in, introduces herself and gives a quick run by of the day and week's events to come. Then about 15 minutes later the nurse practitioner, ours was Jericho, comes in and asks a lot of questions that we've probably answered 20 different times now so why not 21 times? Like, was she full term? Yes. When did the seizures start? About 2 weeks old. Diagnosed at 6 weeks. What type of seizures? Usually tonic-clonic, Keppra makes them just tonic seizures though. What medicines has she tried? and so on...

Rayleigh starts drifting off to sleep after Jericho leaves. I buzz the nurse in and let her know that Rayleigh is falling asleep and will most likely have her seizure (normally one a day, at naptime) and ask her what we should do since Rayleigh doesn't the EEG hooked on yet. She said to go ahead and let her sleep and just take the chance because she's sure that Rayleigh will have a seizure sometime during the 3-day EEG. Sure enough she has a seizure. Michael pages the nurse to let her know and she makes note of it.

She then brings in these various sheets. One of which we have to check the times for when she eats, what she ate, and how much and then check the time for each diaper change. They weigh the diapers to see the difference of how much goes in vs. how much comes out. Another sheet was for us to describe each seizure as we see it so they can compare to what the EEG and video shows.

Next Maria comes in to put on the EEG leads. Maria is the Video EEG technician along with another technician that stays in the control room watching the videos, they do up to 6 at a time. Rayleigh has had 2 EEGs before but this one is totally different since she has to have the leads on for 3 days instead of 30 minutes. They use the conducting cream, the lead and then a small piece of gauze drenched in a watery type of super glue and use a cold air blowing tool to apply it. It is very cold and very uncomfortable. Maria gets 5 of the 25 leads on while Rayleigh is still asleep but then she wakes up screaming and so mad that I'm almost in tears holding her down and letting them do this. But knowing that this will give them answers keeps me pushing through and staying strong for my little Bug.  

Not long after Maria leaves Rayleigh starts falling back asleep... then the nurse comes back in with the paramedic, Mike. Mike checks her vitals and then starts the IV. This is standard for the EMU of CCH. They do an IV so if a child has a seizure longer than 2-5 minutes (depending on the child) they will use a rescue anticonvulsant to stop the seizure. Inserting the IV woke Rayleigh again. Screaming, sad, tired. Every time she falls asleep she gets a rude awakening. This kept up for most of the day.

We met one of the epileptologists for about 1 minute. He was pretty much just letting us know that first we need to confirm that she is actually having seizures before we go into the details of anything else. He also let us know that he wouldn't be our epileptologist but he was the only one there that day.

Dr. Coleman warned us that we wouldn't get much face time with the epileptologists while we were there and he was spot on.

Rayleigh was so out of her element that night. They took her Phenobarbital level down from 12ml a night to 6ml so that they would have a better chance at catching seizure activity. After the medicine we fed her and she normally drifts right off after eating. Well, not here. She would scream anytime we lay her in the crib cage thing. She was only comforted by one of us rocking her or laying on the couch/bed with me.

We co-sleep at home for nighttime so I thought maybe I could just lay with her until she falls asleep and then move her into the crib but she just wouldn't sleep. You could tell on her face that she knew this wasn't home.

Around 11:30p after several minutes of rocking with Daddy we finally got her fed again and off to sleep and in her crib.

Well, then at 2:30a she woke with a seizure. This is definitely a change due to the medicine because she never wakes up in the middle of the night with one anymore. There is a red button to push on the VEEG pack when she starts a seizure so we press that and then the microphone is on in the room and the nurses come in and start describing loudly what she is doing, "arms tensed and pulled into body" "hands clutched" "legs tensed" "face reddened" "labored breathing" "coming out of it" "myoclonic twitching" "shes done."

Then Rayleigh begins crying, waking up in a strange place with several people in her face. I pick her up and quietly soothe her on the couch on the other side of the room to let her know that Mommy and Daddy are still here and that everything is OK.

It took a long time for her to go back to sleep but she eventually did so we put her back in the crib and tried to get a couple more hours of sleep on the couch bed before day 2 started.



Rayleigh with gauze wrapped around the EEG leads so she doesn't pick at them and a "no-no" boot cover over the IV.



Ft. Worth

Michael and I always talked about Rayleigh's first trip out of state. We figured it would either be a quick weekend down to Texas for some fun at the beach or amusement parks or to visit my family in Florida. We never thought her first trip would be to a children's hospital.

We knew we had to be at Cook's Childrens Hospital in Ft. Worth, TX by 7:30a to "check-in". Ft. Worth is about 3 1/2 hours from our home. We could have made the drive but we would have been exhausted and stressed out. Thankfully, Michael's parents got us a hotel room in the Hampton Inn just outside of downtown Ft. Worth (where the hospital is located).

This was Bug's first hotel stay. We were so excited to experience another first with her! And it was going to be so great to have a nice relaxing evening in the hotel before the hospital stay.

We made 1 stop for gas and some fast food shortly after getting out of the city and then we had to stop on the side of the highway twice to change diapers.

We arrived to Ft. Worth around 4 in the afternoon and checked in to Hampton Inn.

That reminds me of how much our lives have changed since Rayleigh Bug arrived! First its the diaper changing in the car, something I never thought I'd be doing! And then there's the packing. Michael and I can pack for 5 days in 2 suitcases, including all clothes, books, laptop, everything. The trunk of our SUV was literally full, also had the diaper bag and a bag of snacks in the backseat!! Babies come with sooo much!!

In our hotel room you could tell that Bug knew we weren't at home but she didn't seem uncomfortable. I broke out her Bumbo chair and tray and some of her jarred food to feed her in the room. She's not used to eating this way but she did pretty darn well!

After she ate I went to the gym, literally right next to our room! Michael and Bug played the whole time I was gone and she didn't cry once! She sure does love her daddy-time!

When I came back we figured her tummy was settled from eating so we put on our swimsuits and headed to the indoor swimming pool for some relaxing fun time before settling in for the night.

Back in the room we each showered (I held Bug in the stand up shower while she cried during her whole bathtime!!), gave Bug her medicine and then we snuggled up in the king size pillowtop bed, Bug took a bottle and fell asleep so fast we thought she liked that place better than home!

Michael and I had a quick dinner, watched some tv and followed Bug's lead to sleep.

Woke up at 6am, got ready, loaded the car, all went to the lobby for breakfast and checked-out of the Hampton Inn to go check-in to Cook's Childrens Hospital.

A Referral

We keep Dr. Coleman, her pediatric neurologist, updated on Rayleigh's seizures via e-mail and phone calls in between visits. So we called him while she was taking the Phenobarb+Keppra to let him know that her seizures and frequency hadn't changed. After 2 weeks of trying this combination he called to check in and we decided then to take her off the Keppra.

Dr. Coleman put in a prescription for Rayleigh to start taking Clenazepam. Clenazepam is a wafer tablet that dissolves in her mouth. It is used as an anticonvulsant, also can be used as a muscle relaxer. We have been giving her one tablet a day (at nighttime to reduce fatigue during the day) and she has been taking it very well. No side effects to report. We started the night we talked to Dr. Coleman, so Bug has been taking it for a week and a half now.

Dr. Coleman let us know that he received the results of the chromosomal analysis and the DNA test that we had blood drawn for last month. Both came back normal in regards to anything epileptic or neurological. There was a slight abnormality though. Bug has a gain, or extra material, on the P32.2 band of her DNA. This can lead to different cholesterol issues, but she shows no signs of that now and it's unlikely that this will ever turn into a problem based on its current state.

The biggest piece of information Dr. Coleman told me was that he put in a referral for Bug to go down to Ft. Worth, TX and be examined at the Cook Children's Hospital.

Cook Children's Hospital has a special, top ranked pediatric epilepsy center. One of the best in the country, if not the best!! While there, she will be seen by Dr. Saleem Malik. His page on the Cook Children's Hospital website is impressive. We look forward to meeting him and getting a second opinion from an epileptologist.

Rayleigh Bug will have a 3-day EEG done when we first arrive to Cook. The last day, day 4, she will have another MRI. They may not need to do this after they view the MRI she had done 3 months ago. The chances they will want to do their own is about 50/50. Their MRI machine is more powerful and will see more clearly and thoroughly into the brain. Her brain has matured since her last MRI so we think they'll probably want to do their own test. Other than that, she will have more blood tests done to check metabolic levels for Coleman and a few blood tests of their own. We will also talk with a nutritionist/dietitian and a metabolic geneticist.

As I'm sure you can imagine we are anxious, excited, nervous and ready to get this done. Hopefully we can get some answers out of this trip.

Keppra's Second Chance

The first medicine Rayleigh tried as an anti-convulsant to control her seizures was Keppra. This was when she was 6 weeks old. Keppra took her number of seizures down from 4-6 a day to 2-3 a day but never decreased the number from there, even with dose increases. After a few weeks on Keppra we added Zonegran. Zonegran is a capsule form medicine generally used to treat partial seizures in combination with other medications. Adding Zonegran didn't change anything so we stopped giving it to Rayleigh after 10 days and proceeded to Phenobarbital. While she was taking Phenobarb we weaned her off Keppra so she was taking just Phenobarb. She went seizure free for about 16 days and then had a breakthrough almost 2 months ago.

We have since been trying increased doses of Phenobarb, taking Phenobarb twice a day rather than just at night and then added Keppra twice a day. Adding the Keppra made no difference in her seizures. She continued to have 2 daily. Once at naptime and once at bedtime.

We were told by Dr. Coleman, her pediatric neurologist, to give the Keppra+Phenobarb combination 2 weeks to see results. During these weeks we noticed Rayleigh eating less and not taking her solid food well at all. At first, we attributed this to a cold she had been getting over but once the cold was out of her system and this eating issue continued we realized it was more likely a side effect of the Keppra.

The 2 weeks came and went and she was still having 2 seizures a day. No improvement with the Keppra+Phenobarb combination.