Thank You, Dr. Albiek

After spending Sunday in the ER with Bug and following the doctor's instructions we weren't getting any better so we gave Dr. Albiek, her PCP, a call. His nurse got us an appointment for that afternoon. We saw him and he was genuinely concerned and wanted to get to the bottom of this. He was worried that she would be malnourished and dehydrated from vomiting for 8 days straight. He went over the notes and tests that were done in the ER and he checked her ears, nose and throat. He said that her throat was red and her gums and tongue looked sore. These are all signs of someone in pain from vomiting so much and he took a swab to test for strep. No strep so he recommended Prevacid.

He believes that the vomiting may have started as a common gastritis but then after continued vomiting along with her high fat diet she was producing too much acids and now with the soreness in her mouth and throat she would gag easy and it would be painful to swallow.

He said to give her Advil as needed for her mouth and throat pain, Prevacid once a day and lots and lots of fluids.

He send us upstairs to the DLO lab to draw some blood to check basic levels and check for dehydration. This was around 4:30p, the end of a work day for him.

Dr. Albiek said that if her levels were abnormal or she showed to be dehydrated he would have Bug admitted straight to the pediatric floor that night to get this resolved.

He called us at 6:30p to let us know that her levels show that she was slightly dehydrated. He asked if she took her Prevacid (Yes, at 5p) and if we have tried to give her fluids orally (Yes, we got 2 ounces in her since we got home and then she fell asleep and was still asleep when we were on the phone with the doctor). He said he would call back at 8p and for us to try and get a few more ounces of water in her and to try and feed her if she wakes up.

We were able to get Bug to drink 3 more ounces of water by the time Dr. Albiek called. He said that was wonderful news and that we would NOT have to take her to the hospital if she was keeping the water down. He told us to just do water and Powerade Zero for the rest of the night and to try a Keto yogurt snack in the morning. The Prevacid should fight the acid for 24 hours and he wants us to continue that once a day for one week and then to talk to Bug's dietitian about continuing it for the duration of the Ketogenic Diet.

Dr. Albiek called again the next morning around 10a to check in on Bug. I let him know that Bug had successfully eaten a snack and was now drinking from the bottle on her own again (when her mouth was sore she wouldn't suck on the bottle so we had to squirt the water and Powerade Zero into her mouth). He said that that was great news and to just do 2 snacks that day with lots of water and Powerade Zero and continue with Prevacid and gradually work our way back to 3 full meals.

Today I am happy to announce that she ate 3 full meals!

She hasn't gagged or vomited or anything since Dr. Albiek prescribed Prevacid. He is such a wonderful doctor and knew to tackle a few things at one time (acids, throat/mouth pain, dehydration). I cannot thank him enough for making my baby girl feel better and could not recommend a better pediatrician!!

A 1-year Well Baby Visit

Rayleigh had her well-baby 1-year old checkup with her regular pediatrician last week. First off, let me say that Dr. Albiek is so amazing with Rayleigh!

Our little Bug now weighs about 19.5 lbs! She is in the 25% of height & 10-25% of weight. She has remained on the same growing curve the whole time! Dr. Albiek said that her muscle tone is pretty weak for her age and he believes it could be neurological - something that goes along with her epilepsy maybe? That explains why she still, to this day, hates tummy time... it bothers her because she's not quite strong enough. She's getting better every day, we just have to do it consistently so her muscles develop more! We are so not worried about her leg muscles though, just her upper body. Lots of forced tummy time coming up!

She also was checked for anemia and received one shot. It was a pretty basic visit all things considered.

On to other news, Bug is sadly up to at least 1 seizure a day. There have been 2 days in the last month that she has had 2 seizures in 1 day. The seizure itself has been anywhere from 35 seconds to 1 min 20 seconds. She doesn't take a breath in until about 20 seconds into it, which is the scariest thing we've been dealing with! Bug has also had myoclonic jerks after each seizure that are about 2 seconds apart and last for 1-2 minutes.

We have been keeping her pediatric neurologist posted as they increase in either time, severity or frequency. We were weaning her Phenobarbital by 1ml a week. He now wants us to wean 1ml every 5 days to speed it up slightly. We are down to 4ml Phenobarb right now. She is also still taking her Clobazam twice a day.

We start Trileptol TODAY! Her ped. neurologist wants to wean her slowly so we will begin giving it to her 3 times a day so that it does not make her drowsy. Once she's off of the Phenobarb we will probably reduce to twice a day.

We are so hopeful that this Trileptol is the answer. Mostly because it is our last resort before the Ketogenic Diet. Trileptol will be different from the other medicines because it protects from a different part of the brain - kind of like attacking at a different angle. It's obvious that the brain has formed an immunity to whatever side of the brain Phenobarb, Keppra, Topomax and the other meds we've tried are coming from. Also, Trileptol specializes in Partial Onset seizures which is what hers start as.

Wish Buggie luck on this new medicine! We all need it.

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.

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.

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........