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.

Meeting Their Neice for the First Time

Rayleigh has a ton of people who truly care and love her. Unfortunately, there are some who are not as close to Bug as we would like. Geographically, that is. My mom, younger brother and younger sister (all of whom I am super close to) live in Florida now. My mom was here in OKC for Rayleigh's birth but had to get back home after a few days :( My brother, Charlie, and sister, Sierra, had never met Rayleigh. They had heard her cries or coos in the background when we're all on the phone but with them in school we would just have to wait a few months until summer break.

Towards the end of July Mom brought the kids here to meet little Bug! It hadn't even been a year since the last time I saw them but MAN how they had changed!! I saw pictures of them throughout the school year but they couldn't really show the difference I suppose. Charlie, now 14 years old, is such a teenage boy. A guy's guy who plays football, texts girls nonstop, and wouldn't been seen in the mall walking with his older sister (me) and a baby stroller! All this aside, Bug drew him in like a magnet. He is already a wonderful uncle to her!

Sierra, who turns 9 tomorrow, already acts like a teenager! On Mom's cell phone all the time talking to her girl friends back home. Dressing up, doing her hair, playing the Wii, putting on makeup, playing on her iPod and arguing. Those are the things she would be doing if she wasn't playing with Bug... which she was most of their trip.

Which brings us back to my mom, Rayleigh's grandma. My mom would get Rayleigh and hold her and play with her for all of about 5 minutes before one of the kids took her away to play on her mat or sit on their lap. Poor Mom. I think she maybe got to hold Rayleigh for a total of 1 hour the entire 10 days they were here.

It was so great to have them here and for Charlie and Sierra to meet their neice who they so obviously adore. We tried to get out and do things that we normally would do but it was just too stinking hot for a lot of things! We took them to the zoo, to hike Martin Nature Trail Park, bowling with Uncle Dan, swimming at GPa's apartment's pool, and shopping at the mall. But other than that, we mostly stayed in and hung out! We would hang out at my house where they were staying or we would go over Aunt Debbie & Uncle Dan's house (Mom's sister and brother-in-law). It was so great to all get together like that. Just like old times.

Aunt Debbie & Rayleigh Bug

Uncle Dan with Bug

Charlie's "Seriously? You have the camera out AGAIN?!?" face.

And then time went by too fast like it usually does and it was the day for them to leave. I must have cried 15 times. Just knowing that they won't get to see Bug on a normal basis like the other grandparents and aunts/uncles breaks my heart. I'm thinking of getting a webcam for my laptop so we can maybe at least do some video chat... right now all we do is phone, e-mail and send pictures! I'm hopeful that someday down the road they will move back home to Oklahoma and we can all be together again because it was the best week of the summer by far!!

I love you, Mom. Rayleigh is doing so much better and I can't wait for you to see her again! Give the kids hugs for me, I'll call Sierra tomorrow to wish her a Happy Birthday!!!

Breakthrough or Isolated???

Yesterday morning at 8:20a I had a rude awakening. Literally. Rayleigh woke up with a seizure. A small one lasting 32 seconds. She woke up, made a squeal/grunt noise, locked up and then relaxed but her face was still in the seizure. She made the noise for about 3 seconds and was locked up for about 10 seconds and then the rest of the time her eyes were looking to the right and blinking and she kind of smacked her lips. When it was over she relaxed for a few seconds and then woke on up, ate and played for a little while. This one didn't hurt her at all, didn't make her tired or irritable. We called Dr. Coleman and left a message with the receptionist and waited for his return call. And waited. And waited. It was really only a few hours but when you're waiting for something like that it always seems like days have passed!

Michael talked to Dr. Coleman and explained what had happened and asked a bunch of questions (like we always do!) like "Is she having a breakthrough?", "Do we need to get her back on Keppra?", "Is it time to increase her dose of Phenobarb?" and "Is this brought on by stress of teething?"

Dr. Coleman believes that this was an isolated event brought on by stress or maybe a small fever from teething. He said to call him if she has another seizure and we may need to up the dose of the Phenobarb. We do not need to add Keppra, as it was not doing anything for her. Dr. Coleman doesn't think that this is a full on breakthrough because is responding well to the Phenobarb and it was the only one in that day and it was not an intense seizure compared to her previous ones. He still thinks that the Phenobarbital is the medicine she needs to stay on because she went so long without a seizure while on it. He said that anytime she is sick, stressed or overtired she is more likely to have a seizure. So we just have to wait and see if she has anymore to determine if we need to up her dose of medicine or switch or have more tests done.

She only had the one yesterday at 8:20a and has not had any today so that's a good sign and shows that yesterday's was probably just an isolated seizure do to the stress or maybe a small fever from teething.

Today she had 2 shots, HIB and PVC, so hopefully the stress from that doesn't bring on another seizure. She only cried for the initial prick of the needle and hasn't been fussy since so there's another good sign!

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 :)

More Information on Cloth Diapering

My mom and my sister-in-law both cringed at the fact that I wash out Rayleigh's poopie diapers in our kitchen sink! So, this post is to clarify a few things. First of all, Rayleigh is breastfed. Breastmilk is more easily digested than formula so her poop is a lot more like liquid. If you are formula-feeding your baby you can most often just shake off the poop into your toilet as it is more solid. Alternatively, you can rinse the poopie cloth diapers in your shower or washroom sink if you have one. And, people, I obviously clean my sink after using the spray nozzle on the cloth diapers! Below is the washing instructions information from the form that Green Bambino provides:

 "Every manufacturer has their own recommended instructions for washing diapers, but Green Bambino believes it's important to keep the wash routine simple. Here are our instructions:

Prewash your diapers before the first use. Natural fibers such as cotton and hemp should be washed separately from synthetic fibers at least 3-4 times in hot water. Synthetic fibers can be prewashed once in warm water. Once diapers have been prewashed properly, all diapers except wool can be washed and dried together.

Regular wash routine: Using as much water as possible, run a quick cold wash or prewash with a very small amount of detergent. Then run a hot wash (not a sanitize cycle) with the recommended amount of residue free detergent or 1/2 the recommended amount of other detergents (1/4 the recommended amount if you use a HE front loader). Bleach can void warranties, but if you must use it, 1/8 cup is plenty. Either hand your diapers to dry in the sun or dry them in the dryer on a low to medium setting.

Tips: Don't use anything with additives such as softeners, dyes, perfumes, or enzymes. These can decrease the absorbency of diapers. Don't overfill your washer with diapers. Diapers need plenty of room to swish around in so use plenty of water. If you still see detergent suds during the rinse cycle, rinse again. If your diapers still smell stinky after washing, wash them again (some babies produce stinkier diapers than others). Stripping your diapers is rarely necessary, but we can tell you how to do it."

Back of Flip cloth diaper starter box

One of the ladies at Green Bambino told me that she does not need to rinse her poopie diapers very often, only does so when they are full of poop. She just throws them in her diaper pail (such as a Diaper Genie or Diaper Champ) and washes them all at the end of the day. Everyone is different. Me, personally? I like to rinse them off in hot water and then set them in the sun before washing at the end of the day. I think it helps them come out cleaner and so far mine have never smelled coming out of the dryer!

I use the organic inserts that you have to fold yourself and the stay-dry inserts that are in the pictures below. The stay-dry inserts just need to be folded to length. For girls put the folded part in the back and put the folded part in the front for boys for absorbency reasons!

Cloth Diapering for the Modern Mamas

Rayleigh Bug has been in cloth diapers for about a month now. At 3 months we started her on cloth diapers because that's when babies stop pooping 8 times a day and it's mostly just pee diapers. I had considered cloth diapers when I was pregnant because it keeps diapers out of the land fills and I love being green to the planet. I hadn't really ever thought about it again until a good friend of mine started using them on her little girl and so I got to hear her experience and see them first hand. What really sold me are these 2 simple things: they are more comfortable for Rayleigh and YOU SAVE A TON OF MONEY!!!!

We headed to Green Bambino (a local cloth diaper and organic goods store) to meet Candace, fellow cloth diapering mama, and get our first cloth diapers! We spent $100 and got 3 cloth diaper covers and 8 inserts. We chose to go with Flip! Cloth Diapers. We like that with Flip! you don't have to change the cover every time you change the diaper, only if it gets soiled, too. Also, Flip! is a one-size cloth diaper so you never have to buy a size up as she grows, you just adjust the snaps! We don't use the cloth diapers overnight, we just use her Pampers disposables now and then change to the cloth diapers in the morning.

We change the cloth diaper about 7 times daily. That saves us 49 disposables a week. At least 196 disposables a month. A pack of 180 Pampers diapers for Rayleigh's current size is $42. SO, 2 1/2 months worth of disposables cost the same amount that I spent on cloth diapers and I never have to buy more!!!

Cloth diapering is much easier than I would have suspected! Her wet diapers I just put in a plastic bag and "poopies" I take to the kitchen sink, turn the hot water and use the spray nozzle with pretty high pressure and blast the poopie off and then either ring it out and put it in the plastic bag or set it out in the sun. At the end of the day I wash all the inserts along with the cover(s) she used that day in the washer on hot with the presoak cycle, no softener and throw them in the dryer; line dry the covers. It's super easy and saves lots of money, not to mention its soo environmentally friendly!

In her pink Flip! cloth diaper :)

We love cloth diapering and plan to do it until she's potty trained! If you have any questions or want to check them out just let me know!

4 month well-baby visit

Since Rayleigh's last visit with Dr. Coleman on Friday, July 30th, she had a seizure the following day at -6:30a. Then she went Sunday-Wednesday seizure-free! Yesterday she had a seizure at 9 am. We called the neurologist's office and they said that her current Phenobarbital level was in the normal range but at the lower-end of the normal range and that we could easily raise her dose to 9ml from 8ml with no problems and it will better help prevent seizures. So we started that dose tonight.

Now rewind to this morning. Rayleigh had her 4 month well-baby visit. For those of you who don't know, a well-baby visit is a regularly scheduled visit with the pediatrician where they will weigh the baby, measure the baby, check eyes, ears, nose and mouth and then ask questions about her feeding, schedule, and progress along with answer any questions and let you know what to expect within the next few weeks like teething or diaper rashes.

We had finally gotten clearance from Dr. Coleman to get Rayleigh's 6 week shots done so we started those today. It is best for us to spread her vaccines out rather than get several at one time. Personally, I feel that this is the way to go regardless of the condition so that you don't overload the baby but especially for Rayleigh with her epilepsy. Side effects of some vaccines includes seizures or fevers (which increase her chances of having a seizure) so spreading them out lowers the chances of these. Today she got her Rototeq for the Rotovirus bacteria and a combined shot that included Polio along with 2 other bacteria preventing vaccines. So she had one shot that had 3 vaccines in it and then Rototeq is a liquid medicine she drinks.

Her well-baby visit with Dr. Hanes went very well. Rayleigh is right on track for weight and length for her age: 13.5 lbs & 24 1/2" long!! Our little bug is getting big! We talked about her feeding schedule and how she's still doing really well breastfeeding and eating more at a time so not eating as often during the day. Dr. Hanes said that now that she is 4 months old we can begin giving her jarred fruits and veggies. Dr. Hanes explained that it is best to give her one fruit for 3-5 days and then switch to a vegetable for 3-5 days. You should do each new food for this amount of time so that if she has an allergic reaction we will know what food it is to. We should also alternate between fruits and vegetables so that she doesn't get a preference to either one. No meat or full-dinner jarred foods for a few months though. Rayleigh eats rice cereal every once and a while and Dr. Hanes said that we should start by added jarred fruit to her rice cereal to begin the transition. So we're going to go this weekend and pick her out some great starter fruits and veggies! I also plan to get the little baby food processors and make some of our own organic foods for her!

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!!!

The Nightmare Begins

Rayleigh is a wonderful baby girl! Very normal. That's the one thing I want people to get about epilepsy more than anything. Her first few weeks home were amazing! Just trying to get the hang of being new parents and everything about her excited us - when she'd open her eyes and look around, make little oohs and aaahs, use her neck strength so early on and even her sweet little baby cry.

We had a 2 wk visit with the pediatrician and she asked if we had any concerns after doing her well-baby check and we described these little jerky movements she would make for a few seconds and then go on about whatever she was doing. The pediatrician told us that this sounds just like a baby thing that a lot of babies go through their first few weeks out of the womb just adjusting to the new world. It wasn't until 6 wks old that we started really noticing them as an issue. My sister-in-law is a nurse and saw one of her "fits" first hand and said to us that it looks like a seizure. I had used this word to describe the "fit" to my husband before so it was haunting to hear it again from someone more knowledgable.

That is when the research began. We had a 6 wk well-baby visit with the pediatrician that week so knew we needed to bring it up with her first thing. We were online reading mommy-blogs, forums, medical sites and infant epilepsy research on several other sites. My husband and I did more research on epilepsy for our daugther than we did for any school assignment ever. In a few of the forums, I saw that the parents would take a video of the episode to the doctor which proves more helpful than describing. So I began using my iPhone to video one each time I was able. She was having these fits about 3-4 times a day at this point. Always the same, she would be waking up or falling asleep and then she'd open her eyes, turn to the right, look the right, lock up, turn red (sometimes) and then after a few seconds locked up she would begin to jerk her arms and legs, smack her lips and blink her eyes. She would breathe the entire time. When the jerking ended she would be exhausted and go right to sleep. They lasted about 40-50 seconds at this time.

So at the well-baby visit we told our pediatrician that we think Rayleigh is having seizures and showed her the video. She said that this could be a "baby thing" - her neuro system developing or it could be more serious. She then send in an order for us to have an EEG done ASAP. ASAP was almost 2 wks later, the next available time.

The EEG was done at 8 in the morning. We were waiting for them to come get us for the EEG in this small little waiting room. We were the only ones in there at the time, not even someone at the desk. Then, Rayleigh has one of her "fits" right there in the waiting room. Not more than 20 minutes later the nurse comes to get us. She says that only one of us can go back to the room with Rayleigh and then she'll need to sleep during the first part of the test. She's already exhausted from lack of sleep the night before and from the seizure she just had but I opt to go back with her so I can BF her to soothe her to sleep if necessary. My husband stays in the waiting room and I take Rayleigh back to a small room, swaddle her up and lay on the bed with her. She falls right to sleep and the EEG technician begins putting the little receptors all over her head and a couple on her chest. The first 10 minutes or so is just us in the dark room while Rayleigh sleeps, the technician outside of the room watching from a computer. Rayleigh wakes up slightly a couple times but I get her back to sleep quickly. After a few minutes the technician comes back in and says that the strobe light part will begin, it will go on 4 times for about 30 seconds each, getting quicking each time. So she leaves the room again and the lights begin. Rayleigh sleeps right through it. The technician comes back in and says we're all done. Normally they finish with about 5 minutes of the baby awake but she said she got what they needed from the couple of times she woke up during the first part.

We get a call later that week that the EEG came back normal. We were sooo relieved!

Our pediatrician had decided not to have the 6 wk shots given to Rayleigh until we had the EEG done. So we call the pediatrician and let them know the news so we can schedule her shots but the pediatrician feels we should get more answers first. So she refers us to Dr. Coleman and that's when we start hearing what we need to hear........