Mixed Emotions

Ok, so tonight as I sit up late with Rayleigh, I have some things to get off my chest. This post is not necessarily about Rayleigh. It is about me. Her mom, the mom of a special needs child, the mom of a daughter who seizes every day, the mom who must move to an entirely new state to get her child the medical treatment she needs. 

I must admit, I'm not in the best of places tonight. I have been extremely stressed the last few weeks. When we first made the decision to move our little family to Colorado and try medical cannabis oil it was bittersweet. I can tell you that part of me was excited to get there and start this new adventure! A new home (smaller yes, but I prefer to think quaint), new friends, new things to do and see, change. 

Of course, missing family was and still is the forefront of our woes about moving. We are tight-knit and they are very involved in Rayleigh's care.

That woe is followed by establishing a new team for Rayleigh in Colorado. Y'all might not understand, but we LOVE her team right now. Her pediatrician, her specialists, her therapists, and her school. Oh, her school feels irreplaceable today. I talk to her teacher and the aide every day for just a few mins to discuss Bug's day and how she's doing. I have both of their cell phone numbers, I can contact them any time I need to and I feel so confidant knowing they are qualified to take care of Rayleigh while I'm away and that they are happy to have that time with her, and the other students of course! I pretty much the same feeling about Bug's pediatrician, she is so wonderful and calls to check in between appointments and always remembers what's going on with Rayleigh! The entire team genuinely cares for Rayleigh and I'm terrified that we may never get that again. 

There are undoubtedly positives to moving. I mean, it's not like we're moving to some terrible place! Colorado is beautiful, I've always loved that state. There are several welcoming families that we will meet and bond with and lean on in times of need. And of course, the state has the medical cannabis oil that Rayleigh needs. More great things: My very dear friend and her daughter (Rayleigh's very dear friend) already made the move to Colorado so we will be close again! AND big news y'all: 
Rayleigh's pediatric neurologist is moving to Colorado!!!

This is huge! Rayleigh has seen this neuro since the beginning, the first EEG, the first medicine, every hospital stay, every test, every seizure type. It's gotta be kismet. He is not moving there for anything related to medical cannabis, he got a teaching job there and will have a small practice, too. 

But still, it is difficult. Michael and I, and Rayleigh, all have so many friends here. I know, I know, we can make new friends, but that doesn't mean that we are happy to move away from the friends we have made here. 

I think I'm starting to sound petty. I'm just frustrated. The state of Oklahoma is letting me down. I have always LOVED the great state of Oklahoma! The people are strong and loving. But it's hard to feel that love when the legislators here are not willing to do anything to get my daughter the medical cannabis oil she needs. 

Maybe that's where a lot of this is coming from. Maybe this is some sort of "acceptance" period. Accepting that there is nothing I can do to change the laws in Oklahoma, not in a timely manner that would save Rayleigh. 
Accepting that the oil we need is not available in this state, causing us to move. Accepting that this doesn't have to be permanent.
Accepting that it might have to be and I have little to no control over that.
Accepting that the Federal Government of the United States is in no rush to legalize medical cannabis. 
Accepting that we are moving to Colorado. 

All of my sadness aside, I am excited to be in a state that provides better opportunities for special needs families. Nursing is very difficult to get here in Oklahoma. In fact, we were denied and in the process of appealing before we made the decision to move. Rayleigh, denied a nurse. But that really could be an entire post on it's own. Nursing is more readily provided in Colorado. Also, Medicaid programs and waivers seem to go into effect quicker (we did paperwork for a year before getting approved here, there it is around 3 months at most).

At the end of the day it boils down to this, we are moving because it is necessary for Rayleigh. We will make the best of the situation like we always try to do. 

We will miss our family, friends, and Rayleigh's team so dearly it hurts.

Thank you for your support.

Uncertain Why

Michael and I are at a loss. Over the last few weeks we have noticed Bug's seizure activity changing. At first it was just like her partial onset seizures at night were going away and were being replaced with 1-3 atonic head drop seizures. Her upper body would just kind of collapse for a split second and then she would pop right back up. This is different from the myclonic spasms she was having a year ago where her arms would spread out wide and she would quickly bend down so we (her neuro, Michael and I) do not think it is epileptic spasms again which is good because those are so difficult to control.

When the atonic head drops started we weren't too super concerned because were confidant that raising the strength of her VNS pulses and changing the duty cycle, discussed in the previous post, would zap away those last few drop seizures. Well, changing the cycle has seemed to completely control the partial onset seizures (fingers crossed!) but now the atonic head drops are increasing and coming in clusters.

I've been keeping all of the notes in Bug's seizure journal as usual and I just don't know what to make of it. We started a medicine a few weeks ago to control excessive drool but the neuro doesn't think that would attribute to the increase of drops.

I had a sickening feeling that he is going to want an EEG soon and Rayleigh just does NOT do well with the sleep deprivation involved with an EEG and doesn't always nap once we get there for the appointment. But if it is necessary then we will do it!

We see the neuro this week and I am really hoping that he believes we can tweak the settings on the VNS and get these drops under better control. After a cluster of 3-5 drops within a 3 minute period Bug gets fussy. She sounds uncomfortable, not scared or hurt, but as a mom you still want to "fix" whatever is ailing your child.

I really hope we can fix this issue before it gets any worse. She is my angel, my world.

--------------------------
Current meds:
Onfi 10mg, 1 pill, 3 times a day
Vimpat 50mg, 1/2 pill morning, 1 pill night
Banzel, 2ml twice a day
Kuspova (drool med), 2.5ml twice a day

VNS set at 1.25 out of 2 strength, on for 30 seconds every 3 minutes

Our Experience with Banzel

Maybe you're thinking that the title of this should be "Bug's Experience..." but let me tell you, any time we make a change for Bug, we all go through it! You'll see what I mean in this little story.

Banzel is a medication designed to control seizures in combination with other medicines. Rayleigh Bug started taking Banzel on November 13th. We began with 1ml twice a day for one week, then 2ml twice a day for one week and then reached her goal dose of 3ml twice a day. She is also taking Clobozam/Onfi and Vimpat for seizure control.

Not long after she had been on the full dose did we start noticing mood changes. I mean, she hadn't been her happy, bubbly self since Lamictal months ago, which she stopped taking at the beginning of November - but this change was awful. I don't mean to be the gray rain cloud over all this but it was bad! She literally woke up cranky making whiny noises, irritable, kicking, uncomfortable, flailing, and such.

So we figured, "Ok, this is probably just her system adjusting to the new dose of Banzel. It will wear off as her body gets used to it. I hope."

2 weeks passed and we couldn't stand it any longer. Our little girl was not happy. BUT she had the best seizure control she had obtained in months! Before Banzel she was having 2-4 tonic seizures a day. A tonic seizure being where she would tense and curl her limbs in with good breathing or sometimes labored breathing and her eyes would look off, no shaking or jerks. Each tonic seizure lasted about 60-70 seconds.

With the full dose of Banzel in her system, Bug was only having a few tonic seizures a week and had started having absent seizures. An absent seizure for Rayleigh involves her looking off, usually to her left, for 1-2 seconds and then coming right back to. She was having about 2-3 of these new seizures a day after Banzel.

I contacted Bug's neuro and gave him our list of pros and cons and he explained that everything I was describing were side effects of Banzel. He prescribed us to lower the dose of Banzel from 3ml to 2ml twice a day and wait a few weeks for changes to be seen.

So we waited.

And we waited.

And we kept waiting.

I am very very very happy to report that her mood has MUCH IMPROVED these last couple of weeks! She's laughing, giggling, making eye contact, waking up and snuggling instead of kicking and she is just happy!

We're still not sure if it was the Banzel finally adjusting in her system with the smaller dose or if the VNS being activated had something to do with it but we are so grateful that she is feeling better!

So anyway, my advice to parents considering Banzel: The first few months are tough so make a glass of wine and let it pass and do whatever makes them happy (for Rayleigh during those first months we would drive around, the motion would momentarily calm her) and if you see seizure control then try and stick with Banzel and the irritability should wear off, eventually ;)

Surgery & Healing

Rayleigh Bug's surgery to get the Vagus Nerve Stimulator (VNS) put in was on Thursday. We were to check in at 5:30a and the surgery would start at 7:15a. Of course, Miss Bug thought it would be a great idea to start the day at 2:30a! So, needless to say, we were dragging our feet to the hospital at 5:30!

We arrive and check in and shortly after that they take us back to the "holding room" where they explain how the day will go and we get Bug's gown on her. Dr. Yaun, the neurosurgeon, came back to let us know what to expect and answer any last minute questions and then the anesthesiologist came in to do the same.

After an hour in that room it's time to take her back and start anesthesia. She had fallen asleep in the holding room so they expected no issues at all getting anesthesia to her. They would do it through a breathing mask which she tolerated very well the last couple of times she went under anesthesia. Michael and Lovie went straight to the waiting room but I got to walk with Bug until they took her to the next room to prepare for anesthesia.

 

It's a wierd feeling in that room. You've mentally prepared yourself, you are confident in the surgeon, but you find yourself with this small nervous feeling or something. I started tearing up and telling Bug how strong she is and explaining what will happen and how she'll feel when she wakes up but that I will be right there when she does and that Dr. Yaun and the nurses will take extra good care of her and I give her lots of kisses. Then I compose myself and head to the waiting room.

Once I'm back in the waiting room I'm feeling pretty good again. I know she's in good hands and that the surgeon has done this surgery without complications every time!

About 40 minutes into the waiting I receive a phone call from the nurse letting me know that anesthesia went perfect and Dr. Yaun started 20 minutes and it was going very well and that Dr. Yaun will be in once she's finished to let us know how it goes.

So we wait, and wait, and wait. We see families come in and wait, crying or showing no emotion. We see doctors come in one after another to let families know how their child's surgery went and then the flood of relief on that families face.

Then after 2 hours in the waiting room we see Dr. Yaun coming past the glass wall and as soon as she turns the corner and finds us she starts beaming and our flood of relief begins before she even speaks! And she says that it went perfectly and Rayleigh had the perfect skin and muscles for VNS placement and the leads attached right onto the vagus nerve like they should! She said that they turned the VNS on to do a couple test pulses and it did exactly what it should!

A little bit later a nurse comes and gets me to see her in Recovery. She is still in and out of sleep and very groggy but she's there, my strong baby girl! Only one at a time is allowed in Recovery so I take my time with my Bug then trade spots with Michael so he can see his baby goo, too!

Then they take us to a Step Down area which is just little rooms with curtain doors to stay until they discharge you. We are all allowed in the Step Down room so now Lovie gets to see her, too! We're calling and updating family members and making sure Bug tolerates juice and then they release us around noon.

She did very well the rest of the day at home, still a little groggy but not really sleeping anymore. Then Friday we continued doing Tylenol/Ibuprofen every 3 hours to manage pain but she was doing great! She was moving around and laying on her side and not too fussy. She is so strong.

Dr. Yaun told us we could take the bandages off on Saturday so we did that yesterday afternoon and I was like "Whoa, they cut my kid open!" haha

She should be feeling great for Christmas and then the next week we will see her neuro to activate the VNS and start the pulses very slowly.

Thank you to everyone who thought about, prayed for, and sent well wishes for a successful surgery and quick recovery! We love you all - Bug is blessed to have all of your support :)

Catch Up Post

Wow. I cannot believe it has been over a month since I've posted anything. Not many new things have been happening for me to post about, I suppose.

Well, that's not entirely true. We've made some changes. Bug is still on a 4:1 ratio on the Ketogenic Diet and trying new foods all of the time! She's still such a good eater! Bug is also still on the same dose of Clobozam, 1 pill 3 times a day. The change is that we added Vimpat about a month ago and then raised the dose of it about 2 weeks after starting it and that's when we started seeing improvements. The head drops decreased. But she has been having partial seizures.

A partial seizure happens in a specific side of the brain (left side for Bug), the body generally tenses up, arms will extend with clutched hands, legs will extend with curled toes and face will redden. Bug breaths well the entire time for most of these seizures, she also looks off to the left side with her eyes and occasionally smacks her lips throughout the seizure. Hers only last 15-45 seconds, and sometimes it's less than 10 seconds.

While a partial seizure isn't as harmful on the brain as infantile or epileptic spasms, it is still scary and definitely something we want to fully control. Infantile or epileptic spasms can be worse because they cause a lot spike and slowing activity in the background of the brain along with spike activity during the actual spasm. With partial seizures, her brain activity is more normal between seizures allowing for more development.

That being said, we still have not made many new milestones. She can now take the sippy cup to her mouth from the tray on the highchair if we put her hands on it. And she will take it to her mouth when you put the cup in her mouth while she's propped up or being held every time. She's still arching and resisting the sitting position, we're getting Theratogs that might help (that will surely be it's own post). And she doesn't have the same muscle tone in her legs that she used to. Bug outgrew her Jumperoo and her walker over a month ago and the Lecky Squiggles stander that we ordered is still not in. So the only standing she's getting done is when we hold her up and at 27.6 lbs we can't hold her very long but we're working on it!

We just increased her Vimpat again on Wednesday because she was still having 2-4 partial seizures a day. Before raising the levels (a week before, actually) we took her up to get her blood drawn so labs could check her Vimpat levels.

Her level was low + continued partial seizures = raising the dose.

So, the worse part about raising Vimpat is this: Every time we raise the dose we go through a rough couple of weeks. There are side effects with all medicines that affect children differently so this is just our experience.

Week 1 of the raised dose comes with insomnia. Insomnia comes with crankiness and both of those lead to more seizures. It's bizarre that she has more seizures when we raise a medicine that is meant to control seizures.

Week 2 of the raised dose involves drowsiness and irritability. The drowsiness only really becomes a problem for her physical and occupational therapies, all she wants to do that week is sleep through them all. The irritability is pretty bad though, she acts like a full on 16 year old girl and it seems like nothing I do makes her happy. But the week after those 2 are over things really settle down and we get the chance to see how the new dose is acting. So give me 2 weeks before I report any change on that :) Hopefully I'll have good news to share!

2 Weeks Left on Sabril

Rayleigh Bug is now down to her last 2 weeks on Sabril (Vigabatrin). She will be on this medicine for a total of 2 months, give or take during the weaning process, when it's all said and done.

Last week Bug had her mandatory vision test. Eye exams are required by the FDA for any patient taking Sabril. For Bug, because she's only on the medication for 2 months, she was required to have one during the medication period and then she will have to have a second one done in August - a few months after she's done with Sabril. These eye exams are required because Sabril has several different side effects on vision.

The most common side effect on the eyes from Sabril is the loss or decrease of peripheral vision. If there is a decrease or loss to the peripheral vision due to the Sabril then it is permanent damage and will not be restored.

Other side effects include damage to the rods and the cones in the retina (that read light and darkness, black & white and color), overall decrease in vision and total loss of vision.

So, back to Bug! Last Tuesday she had an ERG (electroretinagram) on her eyes. Her pediatric neuro-opthomologist had her under anesthesia and placed small electrodes on her eyeballs. She sits in a dark room for 30 minutes to get a base reading on her rods and to calm the entire retina. Then they have a red light on to see how her eyes process that. Next is a soft white light, then a brighter white light, then a strobe light.

The test itself was really easy on Bug. She wasn't sore or anything for the electrodes and she wasn't nearly as groggy throughout the day like we thought she would be.

The ERG has to be evaluated by a trained person, computers cannot read it - yet, and it takes a while so we had a follow up appointment with her ped neuro-opthomologist (what a mouthful!) for that Friday.

During the exam Dr. Mike and his nurse used different lights and contrast tools for Bug to recognize and track and she did better than she usually does so that was enlightening! They also noted that her nystagmus has really calmed down, her eyes didn't shake once during the exam. It's very occasional now.

Dr. Mike explained that Bug's rods in her retina are responsible for seeing in the dark and seeing black and white images. Her rods are at 100%, so they're perfect and not affected by the medicine at all!

Then he said that her cones, responsible for seeing light and bright objects, are 1/3 to 1/2 depleted. He said that this could absolutely be caused by the medicine. He's not able to tell us for sure because she didn't have an ERG prior to starting Sabril so he doesn't have a previous test to compare these results to and see if it's something new or was always there. We really hope that the depletion was caused by Sabril because if it is then there is a good chance they will heal back to 100% after she's done taking Sabril.

We have an appointment with her ped neurologist this week and our main question to him is this: Bug has had increased headdrops, at least one a day, for the past week now. She is also cutting teeth bad and getting a small fever about every other day that we are treating with Advil. That being said, should we stay at this level of Sabril for the last 2 weeks or wean it off in case it damages her eyes further, or should we increase the dose for the last 2 weeks to control these head drops?

Long Overdue Update Post

Rayleigh is 1 month into her Sabril medicine. This is the new medicine she's on specifically designed to treat infantile spasms. She is responding really well to the medicine. It's a pain in the butt to give her, but she's responding well so we'll push through! It's only for 2 months - only 1 more month to go! She won't be on the Sabril (aka Vigabatrin) for longer than 2 months because of the side effects on her eyes. The longer she's on the Sabril, the higher her chances of poor vision.

She had her EEG a couple Fridays ago. This EEG was to compare her brain waves on the Sabril to the EEG in December. The December EEG was when we discovered she was now having infantile spasms - abnormal brain activity even when not having a seizure.

The most recent EEG shows improvement!

The Sabril is helping her. She is having less spike activity and way less spasms. In fact, the only spasms we've seen recently were head drops and they were only on days that she was teething pretty bad (stress on her body allows for breakthrough seizures/spasms).

Her brain activity is better but not all better. It is unlikely that the Sabril will completely normalize her brain activity since she's already been on it for a full month but it could still show more improvement.

Once her 2 months on Sabril is over we will wean her off Sabril.

Next plan of action could be 1 of 2 things: Increase Ketogenic Diet ratio to 4:1 (she's currently on 3.5:1) OR Start her on Vimpat, a different seizure control medicine.

Ideally, we'd love to go up on the diet ratio and give that a chance but that's all about whether her body can handle the added fat or not.

Rayleigh has an ERG scheduled at an eye surgery center at the end of this month. An ERG is an electroretinography or electroretinogram. It's to test her eyesight. Visual exams are required by the FDA during the course of taking Sabril. The ERG will be done at 6am under anesthesia. They will place small electrodes to Bug's eyeballs to measure electrical responses to the eye to look for any abnormalities. So I'll be posting again after that.

She's such a strong little girl and we love her with all of our hearts!!

Starting Sabril

Bug started her new medicine for infantile spasms last Monday. It's called Sabril, also known as Vigabatrin. It's a powder that we mix with water and dispense to her through a syringe. For the first 3 days she was on a half dose of 6ml worth of Sabril and then on day 4 she started the full dose.

She will only be on Sabril for 2 months. The longer you're on Sabril to more likely you are to encounter the side effects. A common side effect with Sabril is vision loss or vision impairment. We will be  seeing Bug's neuro-opthomologist once a month for the 2 months she's on the Sabril so he can monitor her eyes.

The first few days that Bug started Sabril she was so drowsy, sleeping more than 15 hours a day. But that wore off and she gained her energy back... with a vengeance! She is now going through a little bout of insomnia. It's another side effect of Sabril but is supposed to wear off with time as she gets used to the new medicine in her system. In the meantime her neuro, Dr. Coleman, suggested we give her 1mg of Melatonin at night (along with the Clonodine) to help her sleep. Melatonin is a natural hormone the body produces to help you sleep, it's just an over the counter supplement at pharmacies. It's really helping! I mean, she's still not back to sleeping through the night but she's sleeping more than she's awake overnight now and that's a huge improvement since 2 days ago!

Bug's neuro also that he talked to the epileptologist here in Oklahoma and he suggested we try Vimpat if Sabril doesn't work. So it's nice to know we have another option before steroids.

Bug will have an EEG the first week of February to see if her background activity has changed. From what we can tell her seizures/spasm activity has gone way way down!
We'll see...

Record-Breaking Seizure Control

That's right, Bug has now set a new record on her seizure-free consecutive days! Her previous longest streak was 17 days (when we first started Clobazam) and now she is at... wait for it...

27 days seizure-free in a row!!!!!!!!

When we had our check up with her pediatric neurologist last week he said that if we went until October 17 (tomorrow) seizure-free than we can start weaning the Trileptal down. The weaning process will be 5 months long. It is a very gradual process so as not to disrupt anything the diet is doing. She is currently on 2 1/2 pills a day so we will take it down by 1/2 a pill a month. We're really hoping that once this gets down to a better level she will seem more alert and not so drowsy throughout the day.

Bug sleeps an average of 9-10 hours at night and then takes a morning nap for 45 mins - 1 hour and then takes an afternoon nap for usually 2 hours. That's a whole lotta sleeping and doesn't leave room for a whole lotta physical therapy and learning activities!

She is still making good progress on her development. Every week at Jim Thorpe with Miss Rachel helps more and more! We are also still working with an occupational therapist that also does some physical therapy from SoonerStart in home once a week.

I read in an excerpt from a book that there is not really a "honeymoon" phase with the Ketogenic Diet. Usually once you gain good seizure-control it is not temporary. If breakthrough seizures do occur it can be traced back to something specific like a "cheat" in the diet or the child being sick or something of that nature and you can almost always get back to ketosis to control seizures. Gosh, I really hope that's true!

Oh, and one more small note: Rayleigh's pediatric neuro looked at her weight gain and percentiles and her BMI, which is at 91% and said that we should call our dietitian at Cook Children's Hospital to lower the calories so that the meals are smaller (but still the same ratio of 3:1) so she doesn't gain too much weight too quickly. We spoke with her last week and she updated the meals Friday so she's been on a smaller calorie intake over the weekend already.

Diet Update

We are 2 months into the Ketogenic Diet and Rayleigh is doing so well! She has taken to it like a champ from the beginning eating every bite every time whether she's tired, full, fussy or whatever. Through September she was still having about 1 seizure a week. Today we are on day 16 seizure-free! KNOCK ON WOOD

She's showing more personality now than ever before. Even friends and family that don't see her every day are noticing the change. It's small and gradual but it's there. She lights up when she sees people she loves, she reacts to things more now, she vocalizes a lot more now. Bug is also making some strides in development. She's doing way more propping during tummy time and rolling all over! We're still working on getting her to sit independently and reach for toys on her own but we're making progress with her.

Rayleigh Bug has tried hot dogs and spaghetti squash (two different meals, not together!) in the last month and loves both. It's so exciting to see her trying new things!

Bug had a well-baby check up yesterday and she is currently 29 1/2 inches tall and just about 24 lbs. She is now on the 5-10% for height and 50% for weight. Her pediatrician doesn't think it's anything to worry about at this point and she looks healthy :)

In the last couple of weeks Rayleigh has been doing what we call "head drops". It mostly happens when she's tired and is usually in her Bumbo but she's also done them while we're carrying her. What she does is, her upper body will just kind of fall forward for a split second and then she'll pop right back up. We took a video of them and showed them to her pediatric neurologist and he doesn't think they are seizure activity. He thinks they are behavioral. Bug has her monthly check up with him Monday so we will talk more about that and discuss whether to get an EEG or not (right now, probably not).

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.

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.

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.

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!!!