Ketogenic Diet: Day 4

Thursday morning, our 4th day at Cook Children's Hospital, went really well. Rayleigh Bug slept all night and went seizure-free! She woke up still hooked up to the IV and on a really slow drip. We poured Rayleigh a bottle of flavored water and she actually sucked it down! We were so thrilled that she was taking the bottle again! She still wasn't drinking a whole lot but the fact that she sucked on it at all was a good sign. Then she had her morning medicine and some breakfast: chicken, pears, apple juice, butter, whipped up cream. She ate every bite just like a big girl!

After breakfast Jessica Holy, Bug's dietitian, stopped in to see how Bug was doing but there were 2 nurses and a girl from labs to draw blood in the room so she said she'd come back by after lunch and talk and steal us to make some meals for the next day.

Not sure if I've mentioned this yet but on the Ketogenic Diet a child's blood sugar level should be around the 60s-70s. If it drops below 45 she gets 1 ounce of apple juice. Her levels have so far been between 50-80 but she did have one time at 6am when they checked and she was right at 45 so they gave her 20ml apple juice and a couple of hours later it was up to 69 so all was well.

Dr. Malik made his rounds before lunchtime and answered any questions we had and said that he was good with us going ahead and getting discharged that day instead of waiting the full 5 days because she was taking to the diet (minus the thrush/almost dehydration) and she was drinking again and we knew what we were doing. He prescribed her 2 weeks worth of nystatin for her thrush but said that since we caught it so early, once we can no longer see the white give it to her for 3 more days and she'll be clear.

Excited with his news we still knew that Jessica had to clear us to discharge that day. While we were waiting to see her again, a diabetic educator came in to show us how to use our own glucometer and it was alot easier to learn that way than when we read our instructions! When we get home we are to check her blood sugar levels once a day for 30 days and her urine ketone levels once a day every day she's on the diet.

After lunch and medicine and Bug's nap Jessica came back around. She told us that as long as Bug is back to sucking on a bottle nipple or sippy cup and we feel comfortable with the diet than she is absolutely fine with us going home that day! So she answered a few quick questions for us like how to change foods in the Ketocalculator (so I can swap some for organic choices) and what kind of butter and whipping cream is best to use. Then I went across the hall with her to make some meals for Friday so that we would have enough until we could get to the grocery store. It was so much easier I was whipping up meals in record time!

Before we knew it it was 5:30p and we were getting prescription forms and packing our cooler with Bug's meals and loading bags on a cart and signing discharge papers and then we were on the road back home :)

It is now Friday evening and she has not had a seizure since Tuesday night, 1:30am. Knocking on wood now but it could be the beginning of something amazing!

Ketogenic Diet: Day 3

Rayleigh had a seizure Tuesday night around 1:30a. It was only 40 seconds and not as intense as usual. Then she had a really rough 3rd day. It started off with Rayleigh still not able to drink out of a bottle or a sippy cup. Her morning medicine was awful – she is on Trileptal and Clobazam both in pill form. We crush them and put them in a syringe and suck up some water in it and squirt it into her mouth. She was fighting us like crazy taking her medicine. I'd squirt some in her mouth and she'd just have it sit in the back of her throat for what seemed like an hour! It took a while but we got her to drink every ml of her medicine in the morning. We normally give her a chaser of juice or milk (milk is no longer allowed) with her medicine but as soon as we put the bottle in her mouth after medicine she seemed to almost gag. Afraid she would spit up all of her medicine we gave up.
Shortly after medicine she had her breakfast. Day 3 breakfast was egg salad, applesauce, whipped up whipping cream. She ate every bite but still wouldn't drink water after. We let our nurse know and she let our dietitian know what was going on.
Our dietitian said that we could try giving Bug some Diet Sprite or flavored water like MIO drops or Crystal Lite packs. So we found some Diet Sprite but she wouldn't drink that either. It didn't seem to be the drink that was upsetting her, it was more like the bottle nipple itself. It was then that I noticed some little white bumps on her tongue; it looked like inflamed taste buds.

Before lunch Dr. Malik made his rounds and we let him know that she's eating fine and her ketone levels were still high like they should be but she won't drink anything. He was concerned about her vomiting the night before and now she wouldn't drink anything. He couldn't confirm if they were linked or not or if they had anything to do with the new diet. He said, “Let's see how today goes before we make changes. Hopefully she doesn't vomit anymore and we can start getting her to drink. Otherwise, let your nurse know and we can work with Jessica to alter the diet ratio.”
I think let Dr. Malik about the small bumps in her mouth and he checked her out with a flashlight and said it looks like inflamed taste buds to him also but it could also be the early signs of thrash. A yeast infection in the mouth, developed when the body produces or is introduced to too much yeast. He said that it is very uncomfortable and could the reason for her not wanting the bottle in her mouth, sucking the nipple would be painful.


Bug then took a nap and got some good rest in. She woke up and had a big lunch of butter, chicken, pears and whipped up cream. She once again ate every bite and then she had her first round of thrush medicine to get that cleared up so she could hopefully start taking the bottle again.


We took her over to the playroom for a little bit to get some energy going and get her mind off of things then back to the room for more napping. Starting the diet takes a lot out of a kid and makes her very sleepy for about a week. And on top of that she'll be more irritable for the first month.
During her nap Jessica came to steal me away to make some meals for the next day while Michael stayed with Bug. She woke up while we were making meals and came to visit us and then he took her over to the playroom again. Jessica went back over to Michael and Bug to see if he wanted her to get a volunteer to stay with Bug so he could come make meals but he said he'd stay with her because she just threw up again. Oh no! He said that it was a very small amount though and went into some happy kicking and babbling after so he took her to the room to lay down but she just wanted to stay awake and hang out.


Jessica said that if it is thrush that is causing the mouth pain and the issue with the bottle and taking fluids then that could very easily be the reason for the upset stomach also. So it was down to about 4 different possible causes: diet, thrush, dehydration, eggs. Eggs are completely new to her diet and maybe her body just can't handle it yet.


That night, to prevent dehydration the nurses started an IV with fluids. The goal was to her hydrated enough to help clear up the thrush and calm her tummy. Sometimes when you're dehydrated it's really hard to sit and drink a glass of water so we used that theory with hopes to get her back into the groove of drinking tomorrow.

Ketogenic Diet: Day 2

Rayleigh's second day on the Ketogenic Diet started out really well. She had egg salad with her breakfast which was a first for her and she seemed to enjoy it. She lounged around in bed for a bit after eating and then she fell asleep on and off for a good 2 hours.

When she woke up she had a jello and cream snack and then hung out until afternoon medicine. She was pretty drowsy all day but we were told that that is very normal when your body is transitioning from burning carbs & sugars for energy to burning fats.

The VEEG techs came in and took off the EEG leads and told us that Dr. Malik received the information he needed and that they got a good read on her even though she didn't have a seizure while hooked up.

For lunch she had level 2 chicken with cream, butter and applesauce. She ate it pretty well and then we went over to the playroom to get her out of the hospital room and walking around the halls and playing with toys. She really enjoyed getting out. Our dietitian found Rayleigh and I in the playroom and asked if we were ready to go to the meal room and make and plan some meals for Rayleigh to eat for the next day. We took Rayleigh back to our room and a volunteer and nurse stayed with her while Michael and I went with the dietitian.

We learned how to use the gram scale, how to weigh out her foods, how to read the recipes and how to use the Ketocalculator. The Ketocalculator is where her recipes are stored and the dietitian enters her specific weight and her ratio of the diet (3:1) and the recipes tell us how much each portion of the meal should weigh out. It's pretty neat and makes it easier than we expected. We will be spending more time in the kitchen preparing her meals than ever before but if there is some seizure control with this diet then it's all worth it!


When we got done the nurse and volunteer told us that Rayleigh was pretty sleepy but happy while we were gone. The nurse brought in some KetoCal formula mixed with just a little apple juice and some water. She did NOT like it. We gave her some time and tried again but same result. We were getting worried that she would get dehydrated. We began trying to find ways to keep her drinking - she wouldn't drink water or the KetoCal snack all day.

She ate every bite of her dinner but she was eating a little bit slower than usual. Normally, you give the kid a bite and like a baby bird she opens her mouth and whines for more. But not during dinner last night. It wasn't that she didn't like what she was eating, it was more like she was exhausted. So we got through dinner, tried a little water with no luck and then we watched a movie in bed. Michael noted how quiet she was during dinner, that's usually her cranky period but she didn't seem to have it in her on diet day #2. After the movie, though, she was doing some good propping and sitting before medicine.

Medicine went pretty well but about an hour and a half later she was still wide awake so we thought it would be a good time to try the KetoCal formula snack a second time. Almost immediately after getting the nipple of the bottle in her mouth she threw up. It was so horrible for her. She has never thrown up like this. Yeah, she's spit up milk here and there if she gets too active after a full cup of milk but never like that night. We paged the nurse and after getting things cleaned up we began our questions: "Is she not tolerating the diet?", "Is it something new she ate like eggs?", "Will she be ok?", "Is it because she's not getting enough liquids?", "Is it the apple juice mixed with formula?". 

Pretty much all questions were half answered and we were told that we'll have to wait until the morning to talk to the nutritionist but because it was only the one time she was probably fine and it was probably a reaction to the transaction of the diet.

Her blood sugar levels were getting lower when she was checked at 11:45p but nothing to be concerned about so we all went to bed and got a decent night's sleep.

Ketogenic Diet: Day 1

Arriving to the hospital we immediately feel like, "Alright. The time is finally here. We've been thinking and talking about this day for so long. Today, we are starting the Ketogenic Diet."



Bug has an IV in right now. A standard protocal at the hospital on the EMU floor in case they need to administer rescue drugs for a seizure. She is also having a 24-hour Video EEG that she will get taken off during her second day.





Because the diet excludes a lot of sugary foods children on the diet are at risk for low blood sugar. If Bug's level drops below 45 we are to give her an ounce of orange juice or apple juice to boost it back up. Otherwise, she is not permitted to have orange or apple juice while on the diet. Going to bed the first night she was at 54. Normal blood sugar levels for a child on the diet is usually in the 60s or 70s. So her's was getting a little low but they said that that is pretty normal for nighttime if they haven't eaten in a couple of hours.



The nurses and Michael and I are also checking her urine for Ketone levels, gluclose levels and sugar gravity levels. The first few diapers her Ketones were negative but at bedtime she hit trace amounts of Ketones! Yay!


Rayleigh Bug will be on the 3:1 ratio. This means 3 times the amount of fat than carbs and protein.





Her carbs are coming from her fruits and veggies. So like, apples, applesauce, strawberry, carrots, etc. Her fat and proteins are coming from eggs, beef and chicken.


We are working closely with the nutritionalist here, Jessica Holy. She is AMAZING. Very easy to talk to and to ask questions and very informative. She came in twice on the first day. The first time was to give us the basic rundown of how the diet will be started and to meal plan. We planned out what time of day she would eat meals and snacks and what she would have.



Because Bug is so young still she was able to start onto the diet with the Ketocal formula. It's a special formula for the Ketogenic Diet that comes in the ratio (3:1 or 4:1) you need so there is no measuring out. Her Ketocal liquid formula is being mixed with water to introduce it to her body. Her first 2 bottles of Ketocal were 2/3 water and 1/3 formula and she had those at 3p and 5:30p. Then at 7:30p she had a bottle that was 2/3 formula and 1/3 Ketocal. She tolerated this very well. Then after medicine Bug had a snack. Her first solid food on the diet. Her bedtime snack was.... sugar-free jello and whipped cream! Oh boy, was she in Heaven!



So far, so well!

Cliff Notes: Ketogenic Diet

A lot of people, even people IN the epilepsy world, don't know a whole lot about the Ketogenic Diet. In a phrase, it is a diet used to control hard-to-treat seizures.

The diet is a high-fat, low-carb, moderate protein diet.

Please note that I am not a nutritionist nor have I spoken with one in depth about the diet. All of this information is from what I have been told by doctors and what I have researched online and in books. So bear with me as I don't use fancy lingo or doctor terms. After we see the nutritionist I will definitely make an update post!

Some really excellent resources about the Ketogenic Diet are below if you would like to do a little research on your own :)

FAQ in simple terms: http://www.charliefoundation.org/faq/ketogenic-diet.html

Diane Sawyer did a story on ABC about the Ketogenic Diet and follows 2 children's stories: http://abcnews.go.com/Health/Wellness/ketogenic-diet-high-fat-diet-treat-seizures/story?id=13366995

From what I understand, the Keto Diet was created because an accident was found. A wonderful accident. They were performing studies on people with epilepsy, one of those studies was fasting. They found that once the body reaches a point where it is feeding off of its stored fat rather than burning carbs, sugars, etc. for energy the seizure activity was decreased and some were seizure free. The process of your body using stored fat is called Ketosis - hint Ketogenic Diet.

So this Keto Diet mocks that process by giving your body more fats to burn than other ingredients.

Rayleigh will obviously have to take a multi-vitamin each day to keep with the deficiencies that will be in the diet. A typical meal could be 1/4 a hot dog, heavy whipping cream blended with flavoring like vanilla extract or cinnamon, 3-4 green beans and a slice of apple.

In Rayleigh's case most foods will go through our food processor to be pureed or close to since she is not yet finger feeding.

In the Diane Sawyer interview about Keto Diet (link above) she talks with 2 experts about the diet, both doctors. They state that several of their patients starting the Keto Diet have already tried several anti-convulsant medications. One of the doctors also says that they've had several children who have hundreds of seizures a day become seizure-free completely and most of the time that happens within just a few weeks of being on the diet.

The Charlie Foundation's FAQ breaks down the numbers:

• 1/3 of children on the diet get to 90% or more seizure control
• 50% of those children become completely seizure-free
• 1/3 of the children on the diet get to 50% seizure control
• 1/3 of children on diet quit the diet because it is either ineffective or not done right

Rayleigh will continue to take her Trileptal and Clobazam while on the diet. If she gains seizure control on the diet we may take her off the medicines down the road.

If the diet is successful she will stay on it for 2-3 years and then we will wean her back into "normal" food.

Most of time, whatever seizure control you gain while on the diet 2-3 years you keep. So, let's say Rayleigh would go down to 1 seizure a week rather than 1-2 a day; when she gets off the diet she would most likely stay at 1 seizure a week and not go back to 1-2 a day.

If the diet is not successful she will get off of it within 2-4 months of starting. We should see starting results of it after she has been on the diet for a full 10 days. She weans onto the diet while under medical supervision. We will be at Cook Children's Hospital in Ft. Worth, TX to start her on the diet soon.

We really need this to work for our baby girl!

1 Week; 2 Appointments

Rayleigh Bug had a fairly busy week this week. Looking back at the calendar there is not one day unmarked... except tomorrow! Maybe a good ol' fashioned morning of relaxing in bed and drinking some coffee? (Bug will of course have milk!)

Tuesday was Bug's 15 month well-child visit with her pediatrician. She is 21.2 lbs and 29" long. Getting big! Still in the 25% but she's still on her same curve so she's perfectly fine!

When her pediatrician was checking on her he found an ear infection in her right ear that we had no idea she had! She hasn't been showing any signs of discomfort, couching or tugging at her ear! Our first thought was, maybe this could explain the sudden cause for increased seizure activity!

Then we talked with the pediatrician about her diet. Because Bug is developmentally behind she is not finger feeding yet. She is currently eating level 3 jarred foods, sometimes 2 level 2 jars. She also eats mashed up food or small bites of banana or other fruits like peaches or plums. But because she isn't eating a huge variety and isn't on a toddler formula (just organic whole milk) her pediatrician recommeded going to Akin's and getting an organic multi-vitamin that contains iron. So that's exactly what we did.

He also prescribed Ammoxocillian that we picked up that evening.

She got her chicken pox shot and goes back in a couple weeks to get her Hep A shot and for her pediatrician to check on her ear.

Then today, we saw her pediatric neurologist for a routine check up. This is the last time we will visit with him in person before she goes to Cook Children's Hospital for the Ketogenic Diet. We went over several medicine choices and discussed why she isn't trying them. Here's the breakdown.

Depakote: She's too young. Ped. neuros generally don't give this to kids under 2 because they are at a much higher risks for the liver problems that are a known side effect of Depakote. Also, she would need to be checked for mitochondrial diseases before starting this medicine because it can have adverse reactions if she has a mitochondrial disease.

Lamictal: Her ped. neuro isn't against Rayleigh trying this one now that she's a little older but she's still at risk for the rashes associated with side effects and how it affects her sodium levels. This medicine has a very long weaning onto process so we don't have time to try it and see if it works by the time we start the Ketogenic Diet and he (and I) believe the diet has a better chance than another medicine right now.

Vimpat: This is a very new medicine and doctors don't know a whole lot about it yet. There haven't been enough children on it for a long enough period of time to know how it affects a growing, maturning brain like Rayleigh's. It is a medicine to consider and we are going to talk to the epileptologist at Cook Children's about it when we go down for the Keto Diet.

Dilantin: This could control her type of seizures, being partial onset seizures. But generally, ped. neuros do not like giving it to children under 3 years old. Being on Dilantin for long periods of time can cause hairiness and teeth & gums problems. Also, the body grows a tolerancy for this medicine over time so the dose would have to be increased frequently for most cases.

So other than that we discussed her ear infection and as soon as we brought it up her ped. neuro said, "I wonder if that is the cause for her having 2 seizures a day recently?" Exactly what we were thinking.

Yesterday was her last day on Topomax and her ped. neuro says it will be out of her system by Monday so if she is still having 2 seizures a day after Monday then we are going to start her back on Keppra, 2ml twice a day. She's been on Keppra before but never in combination with Clobazam and/or Trileptal. Her ped. neuro said that it controls from a different area than the other 2 so we might be able to gain control until the Keto Diet by having 3 medicines that attack from 3 different areas. Again... we'll see...

When we go down to Cook Children's we are supposed to ask her epileptologist about doing a muscle biopsy and bloodwork (POLG1) to check for mitochondrial diseases and when he might think they should be done and we will also discuss more about the Vimpat medicine.

Bye Bye Topomax

We gave Topomax a fair trial. She was on it for a total of 18 days, 13 of which was the full dose (10mg capsule twice a day). The medicine never even slowed them down. She continues to have one a day, and unfortunately had 2 yesterday. They are still only happening about 30 minutes into her nap - she wakes up, has the episode and often goes back to sleep exhausted from the locking up.

Something we noticed a couple of days into Topomax was that she went back to holding her breath for approximately 20 seconds at the beginning of her seizure. She did this on previous medicines before she started Trileptal but when she was on Trileptal & Clobazam alone she would breath fairly normal throughout the entire seizure. So holding her breath again while on Topomax concerned us greatly.

Tried calling her pediatric neurologist Friday but he had a short day that day and didn't return our call Monday morning so I called again yesterday but he was out of the office so we talked with him today. He believes that Topomax would have shown some seizure activity decrease by now if it was going to at all. SO, we are taking her off.

It's a slow wean process of Topomax so she doesn't have withdrawl seizures. She will go down to once a day tomorrow and remain on that dose for 2 weeks and then be off all together.

She has no room to go up on the dose of Trileptal right now but we can call her pediatric epileptologist down at Cook Children's Hospital to order a blood test and see where her levels of Clobazam stand. If there is room to go up we might try that since Clobazam controlled her seizures for 17 days when she first started it.

We have scheduled her to start the Ketogenic Diet in August at Cook Children's Hospital and we're eager to give it a try even though it will involve a lot more than any medicine has. That can be a whole other blog post though! And I'm far too tired for that right now!

Positive notes:
I have a good feeling about the Ketogenic Diet
Rayleigh is sitting independently for a couple of minutes at a time
Her balance is improving when sitting & she corrects herself when starting to lean 
Rayleigh cut 2 new teeth
She's tracking objects & watching toys very well now
Rayleigh's smile lights up the world

New Dose of Clobazam

The last blog post left off when Bug starting having seizures each day again. She was having one seizure a day. They were becoming unsettlingly routine; every day about 15 minutes into her first nap long nap of the day.

Though the seizures remained fairly mild, we worried every day that they would get more intense and start to become painful to her.

Over 2 weeks ago we spoke with Dr. Coleman and he reinstated that he really did not believe the dose decrease of Phenobarbital by 1ml a night would cause such a drastic breakthough and so quickly affect her seizures. He said that if the Phenobarb decrease was the culprit that the seizures wouldn't start back for a few days after the first lower dose and they would start gradually, not daily at first.

Dr. Coleman suggested we call Dr. Hernandez (Rayleigh's epileptologist at Cook Children's Hospital) to see if it is time to raise the dose of her Clobazam. Clobazam is the pill form anti-convulsant medicine that we receive through Canada because it is not yet FDA approved.

We left a message with Dr. Hernandez's office about Bug's current weight and seizure situation and they called back that same day saying that Dr. Hernandez has changed her prescription on Clobazam to 1/2 pill in the morning and 1 full pill at night. This is based on her weight gain since the initial dose of 1/2 pill twice a day.

We started that dose that night. It has now been 2 weeks. She has been 2 days seizure free. We think that we will see a gradual decrease in seizure activity from this new dose of Clobazam much like when we first started the medicine. In the beginning of Clobazam it took her seizures down to 1 every other day, then 1 every few days, then 1 in 4 days and then they went away all together for several days at a time, until she had her breakthrough... most likely from her weight gain outgrowing the Clobazam dose.

We will have to continue waiting to see if this new dose is the key. Michael and I would still really like to get Bug weaned off Phenobarb completely to see if her developmental delays improve. Hopefully that is in the cards for her soon.

Cook Childrens: Day 4

Our last day at Cook Children's Hospital in Ft. Worth, TX, started off on a good note. Our nurses, Shalyn & Katie let us know that she would be getting the EEG leads off her head in just a couple of hours and that we would be discharged that day as soon as Rayleigh woke up and took fluids after the MRI and lumbar puncture.

Dr. Hernandez, her epileptologist there, came in around 9am to discuss the day and the plan for returning home. Dr. Hernandez let us know that he would be observing the MRI results and he would do the LP as soon as the MRI is done so that she will still be asleep from the anesthesia.

Dr. Hernandez said that there is still a chance that she will outgrow the seizures based on the fact that they started so early in her infancy and because every test has come back normal.

Bug was prescribed Clobazam by Dr. Hernandez for seizure control. This medicine is not FDA approved (rumor is that the company doesn't want to pay the USA fees to get it approved) so insurance won't cover any of it. It's not too bad, about $20 a month plus shipping and handling. We can order 3 months at a time to save on S&H.

Shortly after he left Maria, an EEG tech, came in and took the EEG leads off Rayleigh's head and then Michael and I took her in the bathroom and washed her hair because it was all ucky from the oil used to get the glue off.

She was so happy to have her head free!

Then we just enjoyed a little bit of time together before they came in to take us all downstairs to start the anesthesia for the MRI and LP. We went into this small wing of the hospital that was similar to the back of a doctor's clinic with a nurses station and small rooms off a hallway.

We went into one of the small rooms and laid Bug on the bed and they brought her a warm blanket to help her sleep. They asked the usual questions, had us sign a few papers and then Rayleigh and I went into a different small room while Michael had to go wait in the main waiting room of that wing.

They laid Rayleigh on a new bed and had me hold her arm down while they started a new IV (previous one moved or closed up) and then they put a small breathing mask on her face and had me sing to her while she drifted off mid-cry. The room smelled of bananas and tears starting flowing down my eyes. Those are the things I remember most of that event. Brave little Rayleigh doing so many things that most kids never have to go through in their lifetime at 7 months old.

Michael and I were sent back up to our rooms and were told that it would be a few hours before we would see Bug again because after her MRI and LP they keep the babies in a recovery room.

A nurse came in and said that they were bringing Rayleigh up right then and Michael and I sprang to our feet and waited anxiously to see our baby girl. The nurse from anesthesia said Rayleigh did wonderful and told us that she'd probably start waking up in about an hour but that she needed to lay flat on her back for at least another 2 hours because of the LP.

Rayleigh rooted around a little bit an hour or so later but was still drowsy and pretty much asleep. She really needed the rest though, the previous days were hard on her.

When she finally woke up for good she took 2 ounces of Pedialyte and they brought in the discharge papers and then she drank 2 ounces of milk and we loaded the car and said goodbye to all the friends we made at Cook Children's Hospital.

Cook Childrens: Day 3

Rayleigh enjoyed her 3rd day at Cook Children's Hospital in Fort Worth, TX the most out of her 4 days there.

She was starting to feel more comfortable being there and also getting used to the wires from the EEG leads and "no-no" leg brace that covered her IV.

Although still not sleeping well, she was in a much better mood throughout the entire day. We played on the floor on the gym playmat several times and we got a lot of smiles out of her that day!

Resting her playmat with Daddy while he calls the grandparents to fill them in.

Mike, the paramedic, brought in some jarred baby food for Rayleigh to eat. He brought carrots, applesauce, and beef stew. Our Bug hadn't ever tasted anything beef so we thought we'd give that a try first. Oh boy! First, as soon as we opened the tiny jar of beef stew the entire room instantly smelled like wet cat food. It was awful. We thought, "Well, the green beans don't smell good either but they taste alright so maybe this won't be so bad." We got a tiny bit on the spoon and gave it to Bug. Her face squished up and the food came right back out. We scooped it back and gave it another go. Same reaction. So Bug and I talk Michael into trying a small bite himself. He almost gagged! So without hesitation we closed that jar back up and threw it away!

We gave Bug some applesauce and then a little formula and she was soon falling asleep for what we assumed was a long and much needed nap since she was feeling more comfortable. Well, that probably would have been the case had she not woken up with a seizure about 25 minutes into her nap. The seizure was the same as the ones the day and night before and so was the routine. Press button, make room for nurses, Dale (her nurse) announces her seizure activity to EEG techs on camera/microphone and attends to Rayleigh for a little bit after the seizure ends to make sure she's doing ok.

Dr. Hernandez, the leading epileptologist there, came in after things had settled back down. He was so wonderful with his bedside manner and knowledge of infants with epilepsy. He told us that Rayleigh's brain activity remains completely normal when not in the seizure and then it spikes during the seizure, calms back down with mild spikes for her myoclonic jerks coming out of the seizure and then the brain waves return right back to normal. He told us that he would like to do the lumbar puncture to check her spinal fluid because it's the best way to get an accurate reading of the fluids that move through her brain. He saw our unsure faces and told us that he would do the LP himself and that he does them several times a day! This reassured us and we decided to go ahead and have the LP done the next day right after her MRI when she was still under anesthesia.

Dr. Hernandez told us that she is back to having tonic-clonic seizures and that the Keppra she was on during her previous EEG was probably suppressing the clonic phase of the seizure and that is why the EEG read that seizure as tonic seizure without the jerking movements. Dr. Hernandez explained that the seizure activity is starting somewhere deeper in the brain and then spreading to both sides of her front hemispheres. He said that the MRI they do has much smaller slices, referred to it as an HD MRI, and could find something deeper within her brain that the previous MRI missed.

Dr. Hernandez told us he would be back the next morning to discuss more with us before she went downstairs for her MRI and LP.

About 20 minutes later a lady from labs came in to draw blood to run tests for Dr. Bassinger, the metabolic geneticist. She did great and got all she needed with one prick and Rayleigh did fine!

At Cook Children's Hospital they have a parent's lounge that includes a coffee maker, ice & water machine, a refrigerator, a microwave and a small table and chairs. This room was right next to our room so I visited the coffee machine OFTEN to keep the energy up that I wasn't getting from sleep. Cook's also has a giant playroom on the Epilepsy Monitoring Unit (EMU) floor. It has several little tables and chairs, lots of games and toys and paints and books and everything a kid can think of to play with!

Patients can visit this room as often as they want, even when they are hooked up to the EEG leads because the playroom has cameras that the EEG techs can watch the patient on and the room also has plug-ins for the battery pack that the EEG leads are hooked up to. The battery pack is for about 1 hour unplugged. This allows the patient to unplug from the room and walk around the hospital.

With that in mind, they also have red wagons you can borrow to stroll the baby around. We can take her anywhere in the hospital as long as we are plugged back in in an hour!

This was Rayleigh Bug's first wagon stroll and she LOVED it! We ended up taking her in the wagon 4 times during our stay. Her favorite trip was one night we went to the main entrance area of the hospital that has a super tall ceiling with a old town theme and mirrors and lights and lots of colors.

Day 3 was definitely our favorite day in Cook's with Rayleigh! She was less stressed out so, in turn, we were as well!

Cook Childrens: Day 2

Our second day in Cook Children's Hospital, Ft. Worth, TX, was much better than the first. That being said, we were mentally and physically exhausted from the day and night before. Rayleigh slept for a couple of hours and then woke up with a seizure. This startled her very much and kept her from going back to sleep. So Michael and I kind of took turns that night staying up and rocking her in the chair or getting up to soothe her if she would fall asleep in the crib.

At Cooks they suggest you be up and dressed and ready by at least 8am for the doctors, nurse staff and any specialist that may need to see you. We had our nurses, Shalyn & Katie, checking on Bug at least once every hour through the night and into the morning. At 7a we met the new nurse for the day, Dale, and at his 8 o'clock check he briefly went over the day with us. Mike was our paramedic again that day and he came in while Dale was with us to get Bug's vitals. Dale let us know that we would see Dr. Perry again that day to go over the EEG from the first day. Bug would also have some blood drawn later in the day for some tests that Dr. Coleman ordered with Dr. Bassinger (metabolic geneticist).

Dale said that most of the day will be just us hanging out. And that's exactly what it was! Bug was feeling more comfortable on her second day there but still wasn't napping for us. Cook Children's was so wonderful and provided everything we needed. Bottles, diapers, wipes, shampoos, highchair and even a gym playmat so Bug could get on the floor and play with her toys!

They also provide a DVD player and a Wii in each room so Michael was occupied with that for a little while which kept him from going too stir crazy!

Dale came in around 11a and brought in lidacaine to apply to Bug's inner-elbows to numb it a little bit for the needle to take blood. This was AWESOME! Rayleigh Bug didn't even feel the prick when the lab lady came in about 30 minutes later to draw the blood!

Our Bug started getting fussy around noon and we could tell she was just so tired it was starting to hurt so we rocked her in the recliner and she dozed off after some time. Then about 20 minutes into the nap she had a seizure.

We pressed the button on her EEG pack and Dale came in and announced her seizure behavior while the EEG techs had the camera on her and microphone listening. The seizure lasted almost 2 minutes. It was very hard to watch. They all are.

After it was over you could see on her face how confused and tired she was :( and there was nothing we could do to help get her back to sleep. She just wasn't having it.

The day continued this way, Rayleigh tired but not wanting to sleep. So we would rock her for a little bit so she could get some rest or a 5-10 minute nap and then we would entertain her by playing or sitting in the highchair to eat.

During all this chaos, Dr. Perry came in for about 2 minutes. He said that based on the previous day's EEG he confirms the episode as seizures. (we already knew that, but moving on) he said that he wants to take a closer look at the EEG to see where the seizure activity is starting and spreading from. And that was about it. He was very busy.

Around 6 o'clock that night Michael ordered some pizza to be delivered to our room. Rayleigh also started drifting off so we thought it would be perfect for her to get some sleep while we get some food!

Didn't work out that way. Unfortunately, the pizza guy knocking on our door to deliver the pizza startled Rayleigh awake and she then had a seizure about 25 seconds after waking up. I press the button, Michael goes out in the hall with the pizza guy to get out of the nurse's way and they do the announcing of activity, check on her for a little while after she comes to and leave the room.

At least after this one she wasn't so shaken up. She hadn't been asleep very long and the seizure, although the same length as the earlier one, wasn't very severe on her muscles. She didn't go back to sleep but she wasn't upset or unsettled so she sat on my lap while I ate some pizza. Although starving from not eating that day, we didn't have much of an appetite from what happened.

After dinner there was a nurse change and we got Shalyn & Katie back. We were very happy to see some familiar faces again and even Bug seemed to enjoy their company. More like friends than doctors to her!

Later in the evening, around 8:30 they brought in her medicine. She's down to half a dose of Phenobarbital the entire trip so they can catch more seizure activity than if she was on the full dose. Nurses have to administer the medicine so I hold Rayleigh in the cradle position like we do at home while Shayln squirts the Phenobarb into her mouth little by little. She eventually takes it all, but not without putting up a good fight!

We can't get her to sleep that night. She seemed most comfortable cuddling with one of us at a time on the couch/bed but we know we aren't allowed to co-sleep on it. When Shalynh one of us at a time on the couch/bed but we know we aren't allowed to co-sleep on it. When Shalyn & Katie came in for the 10 o'clock check on Bug and noticed that she was still awake I asked them if we could get the consent form to sign and get the adult bed in the room instead of the cage-crib so I could sleep with her in the bed.

Shalyn came back and said, "I am so so sorry but the patient has to be at least 1 year old to co-sleep."

This was a pretty big bummer because Michael and I knew that we would all get the best sleep if we could just co-sleep. We snuck in one hour of her and I sleeping on the couch/bed together and then moved her to the cage-crib. She continued to sleep for 2 hours but then woke up with another seizure. Pressed button. Nurses came in and announced activity and stayed with her for a bit after. They left. Rayleigh stayed awake. So did Michael and I. She fell back asleep around 3:30a but woke up about every hour whimpering so we would get up and soothe her back to sleep with singing and her pacifier. It was a hard night, but we made it through!

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.



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.