Stopping One to Start Another

Yesterday afternoon we saw Bug's pediatric neurologist, Dr. Coleman, for a regular follow-up visit. We're all trying to figure out why Rayleigh Bug continues to have 3-5 seizures a week.


We still have about 3 weeks before we will see the full results from the increase of Clobazam that Dr. Hernandez has prescribed.
Dr. Coleman agrees with my husband and I that the Phenobarbital really contributing anymore to her seizure control so we're starting to wean her completely off of it. She is on 9ml each night right now and we will take it down 1ml a week until its gone. Dr. Coleman advised that her seizures could get slightly longer as we get her off the Phenobarb so let him know if they do and we might start weaning more quickly so she can start Trileptol.

That's the other big thing we discussed this meeting. Trileptol is used to control Partial Onset Seizures which is when the seizure activity begins or happens in one part of the brain. When Rayleigh had her 3-day EEG down at Cook Children's Hospital they concluded that Rayleigh's seizures begin in one lobe of her brain and spread after a few seconds to the whole brain. We haven't tried Trileptol earlier because the side effects are higher in infancy. So it's nice to know that there is still a medication out there that we haven't tried that might control the seizures fully. She continues to have 3-5 a week about 20 minutes into her nap.

If the Trileptol doesn't work after we get her on an appropriate dose we will begin the Ketogenic Diet at Cook Children's Hospital.

We see Dr. Coleman late in April so we will know by then if Clobazam is going to get them under control again by then. She will also be just about done with Phenobarb, I think we did the math and she will still have 2ml a night then. Coleman will go ahead and write the Trileptol prescription at the appt if the ClobazamPhenobarb down.

PS: Rayleigh Bug will be 1 year old 2 weeks from today!!!

Clobazam Dose Change

Rayleigh is continuing to have 3-5 seizures a week. Each is still under a minute long. We see Dr. Coleman, her pediatric neurologist, on Friday to ask a few questions, get her weighed and have her physical.

We talked to Dr. Hernandez, her pediatric epileptologist from Cook Children's Hospital, about checking her Clobazam levels. He said that based on her current weight of 19 lbs we can go ahead and raise her dose to 1 full pill twice a day. Dose changes take a long time to take effect on her body so we need to allow 4 weeks. If she is still having seizures in 4 weeks we call back and he will have a blood test ordered through the local DLO lab to check her Clobazam levels to see if we have room to up the dose.

If there is not room to increase we may need to wean her off the Clobazam or try it in combination with a different medicine.

We will ask Dr. Coleman about Topomax (an anti-convulsant medication) and explore more about the Ketogenic Diet. Hopefully we find a medicine/dose that will get the seizures under control fully so we can avoid the Ketogenic Diet altogether. But if that diet works, we can't say no!

End of Month Update

I hadn't realized that it has been so long since my last post.

Rayleigh is now taking 1/2 pill of Clobazam in the morning and 10ml of Phenobarbital at nighttime + 1 full pill of Clobazam.

She has been on this Clobazam dose for about 3 weeks. We are seeing a decrease in seizure activity but not as much of control as we would have expected by this time. Bug is having 1 seizure every 2-3 days now. The past couple weeks she went 3 days with a seizure each day, 3 days with no seizure, 2 days with a seizure each day, 2 days without, and then she had a seizure today at naptime. There seems to be no pattern and no explanation.

We have called Dr. Coleman's office and left a message to see if there is any blood test that he can order (or have Dr. Hernandez from Cook Children's Hospital order) to check her Clobazam levels. Rayleigh is growing like a weed so we need to find a way to keep on top of her Clobazam dose increase.

If we can get them better controlled soon we will be looking into the Ketogenic Diet.

On the plus side, Bug is making excellent progress in her development. She is using her eyes much more and getting really good and watching what we put in her hands and tracking us. She is still not sitting independently yet but she is getting closer. She is, however, standing at a table or the couch all by herself!

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.

SoonerStart Evaluation

When Rayleigh Bug was about 5 months old Michael and I noticed that she was hitting her milestones, but that she was hitting them at a slower pace than expected. Our main concern being her complete lack of reaching.

We are members of the OPAT program (Oklahoma Parents as Teachers) and our parent educator, Marilyn, suggested we have SoonerStart come out and do a development assessment on Bug to see if she qualifies to have them come on a regular basis to work with her and get her better caught up.

SoonerStart has a free developmental intervention program designed to work on children's delayed areas. To qualify, the child must be younger than 3 and needs to be behind 25% in 2 different fields or 50% in 1 field.

We had Marilyn set up the first meeting with SoonerStart and Bill came as our representative from SoonerStart to do all of our paperwork and ask all the usual questions. He asked things like, "Was she premature?" No. "Where do you feel she's lacking?" Motor skills, not reaching at all and not really interested in toys. "What health conditions, if any, does Rayleigh have?" Epilepsy, nothing else. And so on.

A week later, a couple of women from SoonerStart came to do the developmental assessment to figure out how behind Bug was and if she would qualify for the free program to get her back on track. This visit was also a lot of questions but they also examined and played with Rayleigh. They checked her tracking, her interest, her head/neck/torso strength and her milestones up to date. They asked about her language so far, her eating and sleeping habits, what she enjoys looking at most, how she lets you know what she wants and what we feel she needs work on.

Rayleigh was considered appropriate for her age in all areas except motor skills. Just as we suspected.

She had just turned 7 months old the day they did the evaluation. The evaluation concluded that Rayleigh was 2-4 months behind overall in motor skills. Major things lacking at the time being her gross motor: sitting, crawling position, & raising head during tummy time.

They said that these delays could be from anything. Her Phenobarbital medicine, the seizures, an underlying thing with her epilepsy, or something different all together.

The women said the test showed that she is delayed enough in this area to qualify for a physical therapist to come weekly or however often we choose to work with Rayleigh on her motor skills. They said that Bill would call us that week to get the first meeting with the physical therapist scheduled.

I'd be lying if I said that Michael & I were not disappointed when they left. As parents, we want the best for our baby girl and want her to be as normal (whatever normal is) as possible. We are now devoted to getting her motor skills caught up, by doing whatever it takes!

Clobazam

Friday, November 12, we woke up at home after a much-needed restful night's sleep. But the work was not over. Michael and I had forms to fill out and fax and people to call in order to get Rayleigh's Clobazam prescription filled out.

Clobazam is an anti-convulsant, seizure control medicine that is not approved in the USA. Because it is not approved here yet we are using Mark's Marine Pharmacy in Canada to receive the medicine. We have to pay every bit out of pocket because insurance doesn't cover any prescriptions for non-FDA approved medicines.

We had to get a written prescription from Dr. Hernandez (epileptologist at Cook's) along with a letter explaining why she needs the medicine signed by Dr. Hernandez. Both of these need to be faxed to Mark's Marine Pharmacy along with a form filled out by us and a letter signed by us stating that Dr. Hernandez has prescribed Clobazam as seizure control for Rayleigh.

After we fax all the information we have to call them and give them payment information. We chose to only order 1 month's supply this time. You can order up to 3 at a time to save on shipping costs. But, with us not knowing if it will work we decided to do one month first so if it doesn't work out we didn't waste extra money.

Each month's supply of Clobazam is $18.99 and shipping is $15.70 for 1-3 boxes/months supply. Money well spent if it controls the seizures.

Clobazam is a pill tablet that is intended to be swallowed whole for adults. For infants and small children you must crush the pill. It can be taken with or without food or water. 

Dr. Hernandez prescribed a weaning process onto the pill for higher tolerance. Her full dose prescription is 1 pill a day, given 1/2 pill twice a day. She is still to take 12ml Phenobarbital at night. The weaning for Clobazam goes as the following:

Week 1: 1/4 tablet at bedtime
Week 2: 1/2 tablet at bedtime
Week 2: 1/4 tablet in morning, 1/2 tablet at bedtime
Week 4+: 1/2 tablet in morning, 1/2 tablet at bedtime

We had to try several different methods of giving Bug her Clobazam before we figured out the best way she liked. This pill taste like the driest, most bitter aspirin ever :(

First, with just a 1/4 of the tablet we would crush it and put it on a spoonful of applesauce or rice cereal. That worked for the first 3 days then she starting catching on and spitting it out.

Next we tried to crush it super fine and mix it with Pedialyte. She took this fine the first night we tried but then spit it out completely the next night. We also tried formula one night but she wasn't having any of that either.

Once we were on the 1/2 tablet dose I tried to just crush it up and rub it dry onto her tongue and let her drink formula to wash it down. This kind of worked, she hated the process but at least she was getting all of it down this way.

Lastly, as suggested by Michael's grandmother, we crushed up the 1/2 tablet of Clobazam and mixed in a little bit of sugar and just rubbed it dry onto her tongue (or let her suck it off my finger if she liked the sugary taste) and then wash it down with a little squirt or 2 of Pedialyte or sugared water. She continues to take it this way now and seems to enjoy it best.

The good news with this Clobazam is that she has gone from 1-2 seizures each day to 1 seizure every 3-4 days! We have already ordered 2 more months worth. We really hope that this is the solution and that it's not just another "honeymoon phase" like when Phenobarb gave us 16 days seizure-free in a row.

We have to give the Clobazam another week before we see full results. Let's hope the seizures continue to dwindle away!

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 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.

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.

And So It Continues

Three weeks ago Rayleigh had a major breakthrough from her Phenobarbital medicine and began having seizures again. They started gradually, 1 seizure every 2 days or so and then got to where we are now at 2 a day.

The seizure will generally happen about 15-20 minutes into sleep. She usually has one for naptime and one at bedtime. Today was weird, she had one when waking up in the morning at 7:30a. She did not have one during naptime today but then had one when she went to bed at 9:30p.

A couple weeks ago on Saturday, Oct 2, we did as Dr. Coleman prescribed and started giving Rayleigh 12ml of Phenobarbital a day. We were to do 6ml morning and night. Each time you change the dose of Phenobarb you have to give it 5-7 days to take effect because it has a long half-life. After 5 days there was absolutely no change. We expected to at least see them slow down if not go away on this dose.

We called Dr. Coleman and spoke with him on the phone for quite a little while. He is ordering a new EEG to see if her brain activity has changed. If so, this will give him more information on the direction we should go in. The EEG is tomorrow.

Also, he had us up her dose to 14ml (7ml twice a day). This seems like a lot to us. We took Rayleigh to get her blood drawn today so Dr. Coleman can check the Phenobarb levels to make sure they are still within the normal 20-40 range.

Dr. Coleman had a couple of points of information that were a bit unsettling:

1.) The harder the seizures are to control, the more likely we are dealing with a longer prognosis of her having seizures.

2.) He has had patients where the best you can do with medicine will still have them having a few seizures a day. It sometimes comes to the point where the parents have to make the decision to either give her a higher dose of medicine than normal range and risk developmental side effects OR keep the dose normal and prevent most of the seizures but not all.

We had to stop by Dr. Coleman's office today to pick up the paper order for her bloodwork to take to the lab. While in there, Dr. Coleman talked to Michael quickly and said that even though she's still having a couple seizures a day and today is day 5 on this new dose he doesn't want to make any changes on her medicine until after the EEG and then he asked us to come to his office right after her EEG because he will immediately have the results and he'd like to go ahead and squeeze us in so we can go over them as quickly as possible.

We know that she's not conscious when she's seizing. For her it's like sleeping and waking up feeling weird, but it is so upsetting to watch this happen to your child and know that there isn't anything more you can do for them. Sometimes we think it scares her and then she's afraid to go back to sleep which is heartbreaking.

We always tell her, "I promise we are working with the doctor to get rid of these!" And we are. We just love her so much and hate that she's going through this. No child deserves this.

Epilepsy brings out a lot of emotions and very little answers.

The Search for Information

Today started off on a bad note as does this post. Michael woke up feeling under the weather so he went to sleep in the other room so he wouldn't get Bug or I sick. Then when we woke Bug up to get ready for her doctor appointment with Dr. Coleman she had a seizure. Doesn't get much worse.

If you don't already know, our pediatric neurologist is Dr. Coleman, his office is located in the Baptist Medical Building in OKC.

Dr. Coleman said that since she is continuing to have seizures but responding to the Phenobarbital he would like to up her dose to 12ml. He wants us to give her 6ml twice daily rather than the full 12ml at night. So tonight we will give her 12ml to make up for the missing lapse that we'll encounter when switching to 6ml twice a day.

We got an explanation for why she had such a major breakthrough while on Phenobarb if he believes this medicine is the right one for her. He said that Phenobarb is an anti-convulsant medication that goes in to fix the root of the problem, often after a patient has been taking it routinely for a long period of time the body may recognize the Phenobarb as a threat and in a sense, attack itself to compensate for the work the Phenobarb has been doing.

He did his routine check of hearing, tracking and visual interest and she passed all with flying colors! We'll see SoonerCare next week to do a developmental assessment on her. Phenobarb has a nasty side effect of slowing brain development and we have noticed it in a few things like reaching and playing with her mirror image.

Dr. Coleman put in the order for her to get a second EEG done in the next couple of weeks. It is normal for a pediatric neurologist to get multiple EEGs because their brains can change, their seizures can change and the brain activity when not in a seizure can change. Rayleigh's last EEG was completely normal which means that her brain acts as any other infant's does when not having a seizure. As much as we do not want our baby to seize, if she does have a seizure during the EEG it helps Dr. Coleman determine what kind of seizure along with where in the brain it is happening.

He also had us go over to the lab and get some blood drawn to do DNA and chromosomal tests to possibly find a reason for her seizures. We'll get the results on the chromosomal analysis within the next couple of weeks and the DNA test will take longer.

The statistics say that 2 out of 3 children with epilepsy outgrow them in their adolescence, Dr. Coleman believes that Rayleigh is still within that statistic because all of her tests are coming back normal and she is responding well to the Phenobarb even with the need to up the dose.

At this point, all we can do is get those seizures under control and do the tests Dr. Coleman wants done to get more answers. Frankly, we hope these DNA and chromosomal analysis come back normal and don't show anything about why she's having seizures so that we're still dealing with something benign.

Here We Go Again

Unfortunately, we are going through a bad time right now with Rayleigh's epilepsy. On Wednesday, September 22, Bug had a seizure when waking up from a nap. We thought, "OK, maybe she had a stressful day that brought on an isolated seizure, we'll call Dr. Coleman if they continue." Then she had another seizure Thursday afternoon. Both of the seizures were under 30 seconds. We immediately called Dr. Coleman's office. He was already out for the day so we spoke with Dr. Norman, the other pediatric neurologist who was on call at the time. She told us that the bloodwork we had done the previous visit showed that her Phenobarbital level was at 30.6, the appropriate level for her age and size is between 20-40 so she was in the normal range. Dr. Norman told us Friday that we had room to bump her up to 11ml nightly. She also said that we could give Bug 12ml that night to jumpstart the dose increase. We were told to still give the medicine 5-7 days to take effect like usual.

Friday she did not have a seizure!

Saturday she had 1. Sunday she had 2. Monday 2, Tuesday 2, and 2 Wednesday (yesterday).

We didn't wait the full 5-7 days before calling Dr. Coleman's office though. We called him Monday morning to let him know about the seizures increasing and he wanted us to go into the lab and get some bloodwork done to check her Phenobarb levels since it had been done a month ago. Then we talked with him on Tuesday after Bug's 6 month well-baby visit with Dr. Albiek. Last month when we saw Dr. Coleman Bug weighted 14 lbs., Dr. Albiek's office weighed her in at 14.6 lbs. Not a major change (She's little like her momma). Dr. Coleman said that her Phenobarb levels actually went up since the last blood was taken because her weight hadn't changed much but we upped the dose to 11ml. Her level is now at 32.

We talked to him again yesterday evening about medicine options since she is still having seizures daily while on Phenobarb. He said that's its hard to tell which way to go at this current point because she had her vaccines done at her 6 month pediatrician visit a few days ago and she was running a low-grade fever. Anytime you're sick, stressed or overly tired you are more likely to seize. On top of that, she got the Rototeq vaccine which is a live virus and can bring about seizures in epileptic children.

Right now we don't have many answers but we are working on getting the seizures under control again. It feels like we're starting over, but at least we have knowledge of what hasn't and what has worked in the past and all of the tests coming back normal.

Today is a good sign, it's 4:00pm and she had not had a seizure at all today. All of the other days she has one or two by this time. She woke up happy from her nap, had a diaper change and ate and now she's playing with her seahorse toy on the floor. Maybe things are starting to look up.

Tomorrow is our monthly checkup with Dr. Coleman.

Neuroligist Follow Up

Today Rayleigh had her 5 month follow up with Dr. Coleman, her pediatric neurologist. He pretty much just wants to see how she's developing, how she's doing on Phenobarb, answer any questions we may have, check her reflexes, make sure she's tracking and get her weight.

Yesterday, at 5a, Rayleigh woke up with a seizure. It was heartbreaking. More so than usual I think, because Michael and I were really hopeful that she was outgrowing them as Benign Neonatal Seizures (that are outgrown from 4-6 months old).

When we first arrive the nurse weighs her in at 13.9 lbs. Last month at her visit with Coleman she was 13 lbs, 2 weeks ago at her pediatrician's visit she was 13.5 lbs. Dr. Coleman said that he would like us to go ahead and bump her up to 10ml. 1.) Because she has had 2 seizures in the last 2 weeks, 2.) Because she has gained weight and 3.) Because her metabolism is become more efficient at digesting the medicine. He ordered blood work to check her current Phenobarb levels at 9ml since he thinks they might now be lower than the normal range.

Next, Dr. Coleman assessed her development. He watched her track a toy and make eye contact with him. He used a metal tuning device to make sure she follows sound. He held her to see her neck, back and leg strength. He felt her soft spot and flat spot on her head. He used a light to check in her eyes and mouth (got a kick out of her when she puckered up to the light and then tried to lick it!) and lastly he checked her reflexes. He said that everything he can tell is progressing perfectly normal but if we have any concerns we can contact SoonerCare and they will come to our house and spend an hour or so with Rayleigh and check her development for free. He said this to us because we were asking a lot of questions about her development for her age being on Phenobarb which is known to slow motor skills or mental development if the levels get too high. Luckily, this is why Dr. Coleman stays on top of her Phenobarb levels and doesn't just throw out a high number dosage that will stop them for sure.

We declined on the SoonerCare offer for now because we have joined OPAT and our "parent educator" will come by monthly to do the development assessment. But that's another post for another time.

We asked Dr. Coleman, "Since she had one yesterday morning and she's now 5 months old is it looking like she does NOT have Benign Neonatal Seizures?" His answer, "The chances of her having benign neonatal are smaller now that there's only a month left for her to grow out of them. BUT, I still think there is a big probability that they are benign seizures that she will grow out of during her infancy. Meaning, anytime from now until she's 1 year old. What I would like to do is keep her on the Phenobarbital to treat the seizures and watch her. If she goes 3-6 months without any seizure at all we can take her off the Phenobarb to see if she's outgrown them." So again, we are left with a waiting game.

Dr. Coleman said that he has only seen 3 or 4 patients that have had benign neonatal but has had several infants that grew out of their seizures within the first year.

One thing that kind of got Michael and I worried was hearing that some children that outgrow their seizures young CAN have seizures come back again, usually brought on by puberty. He said he couldn't really give us a percentage or anything because there haven't been enough studies on that fact yet. Course of action for that scenario is to treat the seizures with an anti-convulsant again. Then, those seizures may or may not be grown out of again.

Also, when Michael was holding Bug so that I could take notes Dr. Coleman was checking her reflexes and watching her take in her environment and he was just kind of thinking out loud while assessing and said, "I notice here that she seems to be clinching her fists. Does she do that often? How hard does she clench them?" I answered that she doesn't really clinch them tight at all and it doesn't really seem that often. It seemed like she was just doing it in his office because she was cold. And then Michael got a little bit freaked out and asked what that means that she's making a fist and what we need to do and all that. Dr. Coleman said, "I'm sorry, I wasn't saying that with the intention of worrying you two. I was just noting that her hands have been closed more today than normal. It can be a sign of slower development mentally. But I don't think that's the case here at all because she's not clenching tight at all. Normally it's an issue when they close their fists really tight and won't let you open them. With her, I can barely touch her hand and she opens them. Also, she opens her hand sporatically and babies with that issue do not open them on their own." So that eased my mind but Michael is watching her hands like a hawk.

So overall we got some new answers, whether we like them or not, like she probably doesn't have benign neonatal, most likely has some form of benign because all tests are normal, developing normally, stress from Wednesday night (teething AND gas) caused the seizure yesterday, and we'll hope that she goes seizure free from here on out so we can wean her off the Phenobarb in a few months.

Phenobarb levels. We take her over to the Main Lab in Baptist Integris. We've also had her blood drawn in the ER there and in a different DLO lab in Baptist but had bad experiences both places. We don't blame them though, babies have small veins! We go to the Main Lab because she's been there 3 times before and they always get her with the first stick and get enough quickly. Well, this time was a whole different story. Rayleigh was already tired, she wouldn't take her morning nap, she wanted to play with Dr. Coleman instead. We go in, Bug lays on the bed, I soothe her and Michael holds her legs. The two ladies begin looking for the best vein. I'll admit, Bug's vein were impossible today. They normally get the best out of her left inner elbow or right hand. They tried to find one on her left inner elbow but you couldn't see a thing. I see a little purple spot on her right inner elbow and point it out to them so we flip Bug around for them. Well the younger of the 2, obviously new, holds Bug's arm all funky so the older can band it near her shoulder and stick her. Well, she sticks the needle in super far and all the while Bug is screaming, then she begins wiggling the needle around for a while trying to hit the vein. She sees our faces and gets the needle out. She then goes for Bug's hand, pricks this small little vein, misses, wiggles, gets out. Flips Bug around, starts tapping Bug's other hand, rubbing, tying, folder her hand down, the works. She gets one tiny one to pop up pretty well and is about to stick the needle in but the younger one isn't holding Bug very well and she wiggles and got poked in the middle of her hand! The older lady gets the younger one to hold her better and then attempts AGAIN... misses, leaves the room hollering for another lady. This lady comes in with her needle, folds Bug's arm, pricks the vein in her hand and gets the blood so quick.

Bug has epilepsy. She has a higher chance of having a seizure after being stressed. This was very stressful on her. I'm worried. Hopefully we soothed her enough after (I fed her and Michael bounced her to sleep) that it won't affect her. In the end, they got the blood they needed so that we don't have to take Bug up there again tomorrow to get it. Let me just say this, it is not fun to watch your daughter get pricked with a needle. It is not fun to watch your daughter bleed. It is not fun for them to poke her 4 times and fail. It was a not-fun experience for all who were involved.

So right now all we can do is treat the seizures with the Phenobarbital and hope to never see another one ever.

She's a strong girl and we love her so very much. More every minute every day.

As of Lately...

There hasn't been a new post on this blog in over a week; that's because there hasn't been any new news to report. In Rayleigh's case, no news is good news! Rayleigh has been seizure-free since August 5th. Which equals out to be almost 2 weeks ago!!

We had a scare a few nights ago though. Rayleigh woke up from a nightmare making a horribly scary, but very short, squeal. When Rayleigh's seizures start she makes a similar squeal, locks up, eyes turn to the right side and then the twitching begins. None of that really happened at all, but she did open her eyes and stare for about 5 seconds and then she went back to sleep. I guess because Michael and I are on high-alert we are so worried about every little thing she does now. But it's so obvious that the Phenobarbital is working!

It's just awful having to give our sweet baby girl 9ml of medicine every night. She just doesn't like it. BUT, forcing the medicine upon her every night is soo much better than her having a seizure ever again! And she's gotten much better about taking her Phenobarb. My mom bought us this neat MedBottle. We had tried a couple different medicine dispensers for babies including a pacifier and and a small bottle one but neither really worked because the medicine would get caught around the rim. Well, the MedBottle that my mom got at Walgreens is so awesome because you put the syringe right into the bottle and you squirt the medicine directly into the nipple so you never have to mess with the rim or anything like that and she takes it better from the MedBottle each night!

So, yeah, no seizures in almost 2 weeks!! This Friday is going to be a busy day! Rayleigh has a Garden Party for OPAT, then she gets the rest of her 6wk shots since we're so behind, and then dinner with Lovie & GPa (Michael's parents). We will be so tired that night that we should all 3 sleep like babies! Pun intended.

Speaking of sleeping, Rayleigh has been co-sleeping all night the last few nights. She's in bed right next to me now. She would occasionally co-sleep with us after her 3a feeding so it's not that new to her but now it's all night. We decided to do it because she is outgrowing the bassinet that is next to our bed and I'm just not quite ready for her to sleep in her own room yet. I know, I'm a crazy mom. But especially being a breastfeeding mom, it's just so much easier to have her in bed with me already when she's ready to nurse. It's so much more than that though. It's just wonderful to have her there with us and for her to wake up and have us right there for her and she sleeps so much better and I could go on and on about what we love about co-sleeping! It's not like we're going to keep her in bed with us for years and years to come. Plus, she takes all her naps in her room. My good friend, Candace, was just telling me about some other great benefits of co-sleeping like the reduced risk of SIDS and that studies show that babies who co-slept with their parents are more likely to open up to their parents as teenagers! It's so cozy. She just sleeps on her back in between Michael and I.

In other news, our Bug has been eating jarred baby foods! We will introduce a new food and have her eat just that food for 3 days and then take a 2 day break before starting a new food. This helps identify any food allergies. If you switch foods, do a vegetable and then a fruit and then a vegetable, etc., it helps keeps the child from getting a preference on just wanting fruits or veggies. So far we have tried bananas, carrots and now we're on pears. She absolutely LOVES carrots!! It's so fun to see her reactions to all the different foods. She likes bananas but not when mixed with rice cereal and breastmilk. But she's the opposite with pears, she prefers them mixed.

We're just living our lives one day at a time enjoying each phase in her life :)

Here We Go Again

Rayleigh turned 4 months old on Monday, July 26th. This was also the date of her MRI. We were told to be there by 7a and that Rayleigh was not to eat or drink anything after midnight the night before the MRI. A friend of mine is going through nursing school and had just finished OB training and told me that, for infants, studies now show and places are now telling families that they are not to eat/drink within 2 hours of the MRI. We talked about this with my sister-in-law who said the only reason they suggest not eating/drinking is because it may make you sick when going under anesthesia. We cheated a little bit but not much. I woke her up and fed her around 1:30a. She is breastfed and so I knew it would be easily digested by the time of the test but she wouldn't be so hungry that we'd have issues. 

We woke up and arrived to OK Diagnostic Imaging around 6:45. Filled out paperwork and waited. They took Michael and I into a smaller, more private waiting room off the main waiting room and a nurse came to explain what all would be happening. Dr. Coleman ordered her MRI to be with or without contrast. This means, they'll take the images in standard gray, without contrast. If the MRI doctor needed to see her brain in more detail he would have the anethetist insert an IV to do the dye/contrast which would add color to the images. The nurse also explained that the anesthesia would be given in gas-form similar to how it is given at a dentist... she'll breathe it in and go to sleep. Then the anesthetist came back and took Rayleigh and asked us to wait in the room.

Michael and I tried to keep ourselves busy in the waiting room by talking, reading magazines and playing on our phones (haha) but nothing could keep us from realizing how close Rayleigh was (2 rooms down) but how we could not be with her. Every time someone would walk down the hallway we would both stop whatever we were doing to look and see if it was our bug.

Finally, the anesthetist comes into our room and tells us that the MRI is over and that Rayleigh did great and that he did not have to insert the IV for contrast because the MRI doctor got exactly what he needed without it. He told us that Rayleigh would be awake shortly and the nurse would be bringing her in to us. We were so relieved to hear that there were no complications and that Bug didn't need the IV... poor thing has been pricked enough with needles!

He brought Rayleigh in and handed her to me and said that she was still pretty much asleep and would be waking up soon. He said I could use the curtained off section of the room to feed her when she woke. The nurse explained that she would probably be pretty groggy throughout the entire day. Michael and I were very happy that we got to have Rayleigh with us before she woke up so that she didn't have to wake up in a strange room filled with strangers. She woke up about 2 minutes later and I took her back and fed her and we gave her her Keppra. She stayed awake only long enough to eat, take her medicine and get buckled in her seat and snapped into the car. Then she was back asleep. We figured she would be, she still smelled of anesthesia!

That day she had 2 seizures. Remember in the last post that she had gone an entire week seizure-free thanks to the Phenobarbital! Tuesday she had 1, Wednesday she had 2, Thursday she had 1 and Friday she had 1. Monday, Tuesday and Wednesday she had a seizure around 10:30p Thursday and Friday's were around 6:30a.

On Friday morning, July 30, we had an appt with Dr. Coleman, her pediatric neurologist. We were anxious to hear the results of the MRI. Michael and I figured the not-needing-contrast meant 1 of 2 things: her brain is so perfect that there isn't even the slightest issue OR the issue was so evident that they didn't need to see it in contrast. We came to the appt with a LIST of questions for Dr. Coleman. Most of the questions were from Michael and I, just general concerns and new developments but a few were from Michael's dad. George had had seizures caused from a concussion so he knows what Rayleigh is going through on a certain level that none of us can relate to. His seizures are controlled by an anti-convulsant that he takes daily and has been doing so for years. He said he remembers that after a seizure he would feel like he had just been hit by a car so he wanted us to ask Dr. Coleman if she was hurting afterward. So he wanted us to ask that along with a couple other questions.

Thankfully, Dr. Coleman did not keep us in suspense. He immediately told us the results of the MRI. NORMAL, CLEAN, PERFECT! YAY!! We were thrilled. Then we talked possibilities. He told us that given all her tests being normal and that she went a week seizure free while on Phenobarb that she could have Benign Infant Epilepsy. He said that there is just over a 50% chance that this is what we're dealing with. Benign Infant Seizures go away on their own between 4-6 months! There are several forms of benign seizures, he said that there is about a 70-80% chance that she has some form of benign seizures, but he is weighing heavily on Benign Infant Seizures. Benign seizures, which are grown out of, is obviously what we are now hoping and praying this is. But only time can tell. There is no test that can be done to find out what kind of epilepsy.

Dr. Coleman wants us to wean her off the Keppra, so starting that night we were to cut her dose in half. For 5 days she was to have .8ml twice daily and then the next 5 days would be .8ml at night and then no more Keppra, just Phenobarb. Today was her last day of taking Keppra in the morning so now 5 days of only taking Keppra at night with Phenobarb and then we will no longer have to give her the additional medicine. We also upped her dose of Phenobarbital to 8ml from 7ml nightly. 

Dr. Coleman said that it was a combination of Rayleigh gaining weight and having anesthesia that caused the breakthrough seizures. He suggested having her blood checked regularly to insure we have the proper levels of Phenobarb for her weight so that we can prevent breakthroughs in the future.

Now we are caught up on the blogging!! And I am proud to say that Rayleigh has gone 3 full days and counting since her last seizure :)   

Dr. Coleman

The day before we were to take Rayleigh in to see Dr. Coleman for the first time she had 5 seizures in one morning from 4a-9a. This was by far the most she had ever had. We were scared and worried so we took her to the ER. The ER pediatrician had them take some blood to run to see if they could find something in her system that was too high, too low or too irregular that may be causing the seizures. The blood work all came back normal so he had us do a CT Scan that day. The CT Scan also came back normal.

Rayleigh first met Dr. Coleman, pediatric neurologist, when she was 2 months old. Michael and I were nervous to hear what he had to say about Rayleigh and her "fits". At this time, no one had officially confirmed what they were although Michael and I were 99% sure we knew. Dr. Coleman came in and, immediately, Michael and I could tell we would get what we needed from him. Answers and solutions. We showed him the videos of her "fits" from my iPhone and he confirmed that they are definitely seizures and she has epilepsy right away. He examined Rayleigh to check her strength, reflexes and other motor skills and said that everything with her is right on track... except that she was a bit stronger than the average 2 month old baby!

He explained to us the possibilities, the what-ifs and could-bes of epilepsy in such a young baby. He said that the blood work done at the ER ruled out some causes like magnesium, certain vitamin deficiencies and things like that that could cause epilepsy. And the clean CT Scan rules out any large issues like a tumor or malformation. Having a normal EEG obviously doesn't mean that she's not having seizures, it just means that her brain is acting completely normal between the seizures.

Dr. Coleman said that based on all the tests so far coming back normal that he has high hopes that this is a form of epilepsy that she will "grow out of". Other possibilities are scar tissue in the brain, tiny-benign tumor, or genetic epilepsy. He ordered more blood work to be done to search for more specific vitamins, plasma and also ordered a urine sample to check her liver. 

That day he prescribed her Keppra. Keppra is an anti-convulsant medication, meaning it is designed to prevent seizures. We started her on .5ml twice a day for 5 days and then 1ml twice a day. Starting on half a dose for 5 days is supposed to help infants' body's accept the new medicine and keep it from acting as a depressant (which many anti-convulsants are).  

We left his office after asking several what-if questions and felt better assusured. Our biggest things were knowing that they don't hurt her (she might be sore but she'll let us know if she's hurting after by crying or becoming irritable after), Does she know she's having them? (No, she's not conscious so she feels like she's asleep and then may wake up slightly confused), Will the seizures cause brain damage in the short or long run? (No, neither, her seizures are far too short to cause any issues in the brain). Dr. Coleman wanted to get an MRI done on her to get a closer look at her brain to find anything that the CT Scan could have missed. Michael and I were not ready for this at 2 months because they have to put her under anethesia so we opted to wait 2 months. Dr. Coleman said this is absolutely not a problem and the only reason we would need to bump the MRI up would be if her seizures became much more frequent or severe.

So we went straight to the lab to get her blood drawn and urine taken for the tests Dr. Coleman ordered. After 10 days on the Keppra we were to call Dr. Coleman if she was still having seizures. She was, but the number had gone from 4-5 a day to 1. He had us up the dose to 1.3ml twice daily. He called a few days after that to let us know that all the tests he had done came back normal.

When our little bug was almost 2 1/2 months old she got a nasty little cough. She wasn't running a temperature or being more fussy than normal but after a couple days we decided to go back to Dr. Hanes, her pediatrician, and get it checked out. We say the P.A. and found out she had bronchiolitis. It is something that can go away on it's own but would take a few weeks to do so. The other option is to put her on a nebulizer for the medicine twice a day. So we did that, but then after a few days she bagan having her seizures 2-3 times a day again. We stopped giving her the medicine because her cough was already starting to fade and we assumed she'd rather cough than seize. We called Dr. Coleman and he said that anytime she is sick, stressed or over-tired she is more prone to have a seizure - even when on an anti-convulsant. That was very hard news for me. I had a meltdown that night. Thinking, "she'll never be able to have sleep-overs or play sports or anything because we'll never know if she's going to have a breakthrough and seize!" It is hard even now thinking that other kids will not think of Rayleigh as normal. 

Anyway, we upped the dose to the max level for her weight, 1.6ml twice daily and after a few days of no change we began giving her Zonagran also. We had a horrible experience with Zonagran. First of all, it is not available in a liquid form like Keppra. It is a powder capsule. We had to break the capsule open and mix it with breast milk and dispense it that way. The pharmacist told us "do as little breast milk as possible so that you don't have to give her much... babies are smart and will taste the difference no matter how much milk you try to drown it out with and that is just that much more milk you have to try and get her to drink". OK, so this Zonagran powder doesn't mix with breast milk worth crap, the powder just sinks to the bottom. So we dispense the milk in her mouth and then have to rub our finger to get the powder on it and then rub the powder-covered finger on her tongue. That makes ONE MAD BABY! After 2 weeks of the Zonagran with no results Dr. Coleman had us wean her off it. Thank God.

When Rayleigh was just over 3 months old we had another visit with Dr. Coleman. He checked her motor skills and everything and said that she's still right on track. He still did not give us the OK to get any of her 6 wk shots and her next round of shots were quickly approaching. He said he wanted to get these seizures under control first and find a medicine for her to be taking. She starting on Phenobarbital. I had read a lot of mom's giving Phenobarb to their children with seizures from the epilepsy blogs. We were curious to see how this next medicine would work. And boy did it work! We began with 5 days of 3.5ml at night and then moved up to the full dose of 7ml each night. After just a few days we started to notice that she was only having 1 seizure a day again! We were so excited that we were already seeing results from Phenobarb. And then something wonderful happened! Rayleigh went an entire week seizure free!!!