We Thought We'd Have Some Answers By Now

Well, the title pretty much sums it all up. Rayleigh is 2 1/2 years old. We've been on the epilepsy road for over 2 years with no explanation of why. We finally found a genetic disorder that she really seems to fit (CDKL5) but the results are taking FOREVER! Or at least it feels like it.

I've been calling the epileptologist's office twice a week, every week, for the past month to check on the status or see if they've gotten the results and every time I hear the same thing "We have the results for the Rett Syndrome test and they are negative, we are not showing any other DNA results back."

Then I have to go through and explain the specific EIEE test that we had saved and earned money for to get Bug tested for CDKL5 along with 2 other rare genetic disorders.

I did this last Friday and his nurse said, "There's a DNA test result in here, has Dr. Ng called you with the results?" I informed her that the only results we've received were through the mail and were negative Rett test and normal glucose levels. She said that she would flag that test and have Dr. Ng call us.

Then she called us today and said that Dr. Ng reviewed all of the test results on her file and she is negative for Rett. I was thinking "Are you kidding me?!? I get it. No Rett. That is not what I have been calling about." So I politely asked if there are any other genetic tests that have come back and explained exactly which test results we were waiting on and she said that those results weren't in there but she would talk to the epileptologist and get back to us shortly with either the results or the status of the testing. She didn't return my call today so I'm expecting to hear back from her tomorrow morning - or I'll be calling again, the nagging patient gets the results (my father-in-law always says "The squeaky wheel gets the oil").

I just don't understand what could be taking so long and why there is so little I can do from my end. I am one frustrated mommy tonight.

I keep trying to reassure myself by saying things like "What's one more day? It's been this long already." But seriously, I want to know yesterday!!! That being said, I went ahead and joined the CDKL5 group on Facebook as suggested by a friend and they really feel like family already. So I'll keep focusing on the positive and nagging nurses and waiting (impatiently) until those results come in. And I promise to keep you posted :)

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Bug's current medications & control:

• Ketogenic Diet 3.5:1 ratio
• Onfi/Clobazam, 10mg: 1 pill 3 times a day
• Vimpat, 25 mg once at night 
• Lamictal, 25mg: 3 pills twice a day - just started this dose today, full dose 

Unfortunately, Bug's seizures are still at 2-5 seizures a day, they continue to happen mostly at night after she falls asleep. She has not been napping as a side effect of going up on Lamictal. We hope to get naps back after she has stabilized on the full dose, we'll see.

Early Infantile Epileptic Encephalopathy Test

Rayleigh's next test that is needed is called the Early Infantile Epileptic Encephalopathy (EIEE). This will test for these rare genetic disorders, each on 2 different levels: CDKL5, ARX, and STXBP1.

Information on this test provided by Athena Diagnostics Quick Guide:

The Early Infantile Epileptic Encephalopaties (EIEE), including Ohtahara Syndrome and early myoclonic epilepsy, are a group of severe epilepsy syndromes characterized by intractable early-onset seizures (generally in the first months of life) and a highly abnormal "burst-suppression" EEG pattern.

EIEE typically presents with treatment-resistant tonic spasms, focal seizures, and rarely, myoclonus. Over time, 40-60% of EIEE patients evolve to West syndrome, characterized by infantile spasms and a highly disorganized "hypsarrhythmia" EEG pattern. In general, many of these patients evolve to Lennox-Gastaut syndrome (often, but not always, between ages 3-6), which presents with mixed seizure types. Testing is indicated for individuals presenting with the above symptoms (tonic seizures, abnormal EEG, and myoclonus).

Reasons to test for EIEE:
Genetic testing can:

• Provide a confirmatory diagnosis
• Genetic testing for STXBP1, ARX, CDKL5 was rated "very useful" and "highly accurate in correct clinical context" by International League Against Epilepsy (ILAE) guidelines
• STXBP1 is mutated in 36% of patients with Ohtahara Syndrome.
• Provide important inheritance and genetic counseling implications
• ARX is an X-linked disorder that is seldom inherited, providing important inheritance implications
• Determine appropriate treatment options
• STXBP1-associated seizures in EIEE may respond better to Vigabatrin

This test is over $10,000. Insurance is willing to pay for some of the cost but we will still owe $2,100 ourselves. We are now on a mission to raise enough money so that Rayleigh can get tested as soon as possible.

Below is the link to a fundraiser I have set up to collect some of the costs needed, please share it with anyone who may be able to help Rayleigh Bug!

If that doesn't work, try this direct link to the Fundrazr: http://fnd.us/c/eKEyc

1 Month Down, 23 To Go

First off, I am so sorry to my active followers for the super long delay on this update! Rayleigh has been keeping me very busy with her diet and physical therapies!

All of that aside, Rayleigh is doing great. The first few weeks on the diet were very up and down with results and consistency. After those weeks she went 7 days without a seizure and then she started having them once every 3 days. While disappointed that they had started getting more frequent we were still happy for her to get a couple days of break between a day with a seizure. So she had gone from 1-2 seizures every day to 1 every 3 days. Improvement but not completely controlled.

We currently stand at 1 seizure a week. We went 6 days seizure-free and then had a seizure on Monday at 5:30am and then we went 6 days seizure-free and she had one this morning (Monday at 3:30am). 2 seizures in 2 weeks is waaayy better than 1-2 every day.

The best part is that she just seems happier. She's starting to show more of a personality than ever. Baby steps is the key here and I think we are making them. Hopefully within a year or two I will mean literal baby steps but for now I mean small strides towards a big goal.

Bug's seizures still only happen during sleep. She wakes up, has a blank stare, tenses up with arms extended out, makes a grunting noise as the lungs contract and then draws her arms to her body and stays tense and labored breathing for about a minute before she relaxes fully.

So this Ketogenic Diet definitely seems to be doing some good and helping out a great deal! We will be talking with her pediatric neurologist this week to see if we can start weaning her Trileptal off so that she is just taking the Clobazam while on the diet. If we get better seizure control on the diet we could take the Clobazam off as well!

Rayleigh's development is slowly improving but I doubt we will see any major changes until we get consistent seizure control. Once that happens her brain will really be able to maintain what she learns through therapies and further interest and improve eyesight! Lots of goals for one little girl but we will never give up on her!

Down to the Last Options

So in short, Trileptal is no longer working to the potential we expected. Rayleigh is on 2ml Trileptal 3x a day and 1 pill of Clobazam in the morning and 1.5 pill of Clobazam at night. She continues to experience 1-2 seizures a day.

We called Cook Children's Hospital today because I am ready for her to start the Ketogenic Diet. My husband is ready, too but wants to wait a few months to exhaust one more option first. Topomax.

We spoke with Dr. Coleman and let him know that Cook's said the earliest available we could go down to start the diet would be August. He said that we aren't out of options as far as medications go, to try meanwhile. He said that Topomax would be the perfect medicine to start now because if it works we can cancel her Keto appt and if it doesn't then we have to stop that medicine when starting the diet anyway.

With the Keto diet, Rayleigh would still be on medicine throughout the course. If the diet controls her seizures she will be on it for 2-3 years. The Ketogenic Diet is a high-fat, low-carb, moderate protein diet... a stricter Atkins Diet. It teaches the brain to burn fat rather than food which uses the Ketones. Other than that, scientists don't know why it works... just that it does. Rayleigh pretty much has a 1/3 chance of success with the diet.

We start Topomax tomorrow or the day after (depending on the pharmacy). She will start with 1 capsule a night for 5 days and then 1 capsule twice a day for 7 days. We are to call her neurologist back in 2 weeks to report how Topomax is working. If it isn't we'll simply stop the medicine then.

In other news, Rayleigh now sits by herself for a minute or 2 at a time. Enjoys tummy time much more. Holding the bottle all by herself everytime. Stands at the table using her hands for a couple of minutes. AND takes a couple of steps when I hold her up by her arms!!! Yay physical & occupational therapy!!

Don't Know What's Going On

Rayleigh started Trileptal on April 14th. She then had 3 seizures over a 2 week period. A major improvement from the 3-5 per week she had been experiencing. Then, the first week of May she had 3 in one week. This past week she had one almost every day :( Yesterday she had 2. One at 6a and a second at 3:30p. Both about 20 minutes after falling asleep. Today she had one at 6:05a and a second one at 4:20p. I got the last one on video so we can show Dr. Coleman (her ped. neurologist) the changes. He may want to see if we can get an EEG to see if there are any changes in the brain where they are starting, etc.

Dr. Coleman is not the on-call doctor this weekend so we will be calling him first thing tomorrow morning.

There is a range of numbers they use when testing blood for medicine levels. When Rayleigh was on 4.5 ml a day her levels tested at the low in of the normal range. Last week when her seizure activity picked up we bumped the dose up to 5ml a day (spread into 3 doses a day). This hasn't improved anything.

We will see if we need to up the dose more or maybe try a different medicine combination with Trileptal. Right now she's on Clobazam & Trileptal. We may have just gone through a "honeymoon stage" and this might not be the medicine for her. Will post tomorrow after we hear from Dr. Coleman.

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.

Stopping One to Start Another

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


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

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

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

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

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

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.

High Hopes

This month has been a major roller coaster for our family. Rayleigh had a seizure on New Years Eve, December 31st, around 7pm that lasted about 40 seconds. It looked like her usual seizure: face reddened, arms locked up and pulled into body, legs locked up and curled in, labored breathing and then her deep release sigh and some myoclonic jerks as she was coming out of the seizure. It was intense and awful.

Then we started to notice her going several days without a single seizure. In December Rayleigh was having 1 seizure every 2-3 days. In the months prior to that she was having 1 seizure every day, maybe even 2 seizures a day but then late November she started the Clobazam anti-convulsant medicine. So starting January 1, 2011 Rayleigh went a full week without a seizure, then it was 8 days, 9 days, 10, 11, 12 days. 12 days with no seizure. Rayleigh was more alert and in a better mood all around. Michael and I were less stressed during naptime and when she would wake up.

Then around January 12th Rayleigh and I got sick. We were both running fevers and feeling awful. On that night Rayleigh got practically no sleep and ended up having a seizure around 2:30am. The seizure was very small and short and Rayleigh didn't seem to be in any pain from it. We were upset that she had a seizure because a small part of Michael and I had thought she was outgrowing them but at the same time we knew it was likely. Dr. Coleman, Rayleigh's pediatric neurologist, had told us before that anytime she is stressed, sick or sleep deprived she is more likely to have a seizure than other times.

Then she went a few more days without a seizure. By January 19th she had only had the 1 seizure. Michael and I were ecstatic. We were sharing the news with everyone, "Rayleigh has only had 1 seizure in 19 days!"

Maybe we jinxed it.

On January 20th we had a regular checkup with Dr. Coleman. We told him the news and asked about weaning Rayleigh off the Phenobarbital to see if the Clobazam was doing all the work. Phenobarbital has a lot of side effects that we think are affecting Rayleigh's development and would love to have her off Phenobarb completely. Dr. Coleman thought the request was more than reasonable and said to wean her off slowly, 1ml less each week. Rayleigh was on 12ml a night at that point so that night we took her down to 11ml.

She takes her medicine each night around 8:30pm.

At 11:30pm that night Rayleigh had been asleep in her bed for 15 minutes. I went in there to adjust the monitor before going to sleep myself and saw that Rayleigh was waking up. I bent over to give her the plug-plug (pacifier) and she went into a seizure. My heart stopped. I grabbed her hands to make sure that she didn't scratch her face and called to Michael.

It was not very intense like her old ones were. She didn't make any noise going into it, her face didn't really redden too much, arms and legs locked up and curled into body, the whole thing only lasted 20-25 seconds though. We brought Rayleigh into bed with us and she fell asleep shortly after. No whimpering or crying at all and didn't appear sore.

Michael and I were shocked. Is this from the dose decrease? Would we really see results that fast? Was she sleep deprived today? Was she stressed? What brought on this seizure?

The next day at 1:30p Rayleigh took a nap so I had her in the same room with me so that I could watch her. With how quiet the one the night before was I knew that I wouldn't have known she had one if I wasn't in her room at the right time so I wasn't going to have her sleep out of my sight. Sadly, she woke up and had a seizure about 5-10 minutes into her nap. It was identical to the one the night before and she went to sleep right after. I called Michael to let him know and he called Dr. Coleman.

Dr. Coleman told us that he can't really verify what's bringing them back on all of a sudden and doubts that the medicine dose decrease would affect Rayleigh so drastically so quickly. He told us to keep an eye on her and let him know if she continues to have them throughout this week and if so we'll increase her dose back to 12ml and see if that controls them again. Rayleigh has also gained a few pounds in the last couple of weeks so maybe she was outgrowing the dose of Phenobarb as we decreased the dose and it was just too much at once.

We will be taking her to get her blood drawn for Phenobarbital level testing this week to see if she is still in the normal range.

Rayleigh had one again this afternoon during naptime.

We went from 1 every 2-3 days to 1 in 19 days and now daily. We are feeling discouraged but are working hard to get her seizures controlled again.

Plageocephaly

Every doctor that Rayleigh has seen since she was about 3 months old has noted her plageocephaly. Plageocephaly is a flat spot on the skull. Rayleigh would never do tummy time for us and slept on her back at all times up until she turned 6 months old to prevent SIDS.

During her awake time we would try to keep her off her back but that was her favorite way to look around. When we would put her on her tummy she would scream and throw a fit until she would be back on her back. She learned to roll over very quickly so that she could get out of tummy time on her own. Once that started, we would have to turn to the Bumbo chair or have her sit on our lap to keep her from laying on her back. But still having her sleep on her back all the time gave her a flat spot on the back of her head, on the right side more than the left.

Dr. Albeik and Dr. Coleman both suggested we go to Hanger and get her a helmet to round out her head. You have to provide Hanger with a written prescription so Dr. Coleman faxed them one that day.

A helmet for plageocephaly is not covered by most insurances. Plageocephaly is considered completely cosmetic because there have been no researches done proving that having a flat spot causes any developmental delays or health issues in life. Plus our insurance is probably still upset about Bug's $38,000+ hospital bill from Cook Children's Hospital!

We went for her first appointment in November to make sure that she would be a candidate and get her measured. Jennifer is Bug's certified orthotist and did the measuring. She said that she is definitely a candidate but that her flat spot is really not severe. So much so that she has virtually no displacement on her face from the flat spot on the back. You can see examples of that if you look up images of plageocephaly on Google.

We went in for a followup appointment to get Rayleigh's head measured and scanned for the helmet. Jennifer put a little box on the top of Rayleigh's head and put a pantyhose sock over her head like a shower cap and used a scanner (like the ones used in retail stores) and clicked-and-dragged over Rayleigh's head in every angle. Then an image of Rayleigh's head popped up on the computer screen and looking from an eagle-eye view you can see the flat area on her head. Jennifer sent the image in to have the helmet made and we picked a fabulous leopard print for the helmet to be done in. From here, you have 2 weeks to decide if you are sure you want to get the helmet and when you are you call and give them the OK.

Michael and I debated whether we should get the helmet or not for about 3-4 days. The helmet costs $1,500 and we are already swimming in hospital bills. But we really don't want to give anyone down the road further reason to make fun of our beautiful baby girl! Plus we're always hoping that there is some miracle that rounding out her head will stop her seizures or at least help her development. Not likely, but it would be awesome...

Anyways, so we obviously decided to go ahead and get the helmet. I went and picked it up a couple of weeks later and it fits great. The way it works is that where her head is already rounded the helmet will touch the skin and it will hollow space between her flat spot and where the helmet is. It allows the skull to grow to its environment.

Rayleigh hates the process of taking it off and putting it on but once it's on she's just fine with it, thankfully!

At the 1-week checkup Jennifer said that Rayleigh is looking good, no red spots or anything like that. She also told me that because Rayleigh is small for her age (25th percentile) and her head is still pretty soft that she doesn't see Rayleigh wearing it as long as the average 8-9 months. We're shooting for 4-5! She has to wear it for 23 hours a day but she can take it off for special occasions as long as we keep her off her back during the time it's off.

It's only been a couple of weeks but Michael and I can already tell a big difference! Maybe she'll just hit a growth spurt quickly so her head will round out from it and she won't have to wear it long at all!

Clobazam

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Cook Childrens: Day 4

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

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

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

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

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

She was so happy to have her head free!

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

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

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

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

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

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

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

Cook Childrens: Day 3

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Cook Childrens: Day 2

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Cook Childrens: Day 1

Monday morning we get to Cook's Children's Hospital at 7:45a. Go straight to registration, then immediately taken to the EMU (Epilepsy Monitoring Unit) of the hospital. It's the 4th floor of the neurology wing.

We get in our room, about the size of a smaller guest bedroom with a small table, 2 chairs, 1 recliner, 1 crib (cage) and a sofa. There is a bathroom that is almost as big as the room itself. A TV mounted on the wall, a built in closet and a space near the door for the nurses.

Let me just say that the first day is very overwhelming for the baby and the parents.

First the nurse comes in, introduces herself and gives a quick run by of the day and week's events to come. Then about 15 minutes later the nurse practitioner, ours was Jericho, comes in and asks a lot of questions that we've probably answered 20 different times now so why not 21 times? Like, was she full term? Yes. When did the seizures start? About 2 weeks old. Diagnosed at 6 weeks. What type of seizures? Usually tonic-clonic, Keppra makes them just tonic seizures though. What medicines has she tried? and so on...

Rayleigh starts drifting off to sleep after Jericho leaves. I buzz the nurse in and let her know that Rayleigh is falling asleep and will most likely have her seizure (normally one a day, at naptime) and ask her what we should do since Rayleigh doesn't the EEG hooked on yet. She said to go ahead and let her sleep and just take the chance because she's sure that Rayleigh will have a seizure sometime during the 3-day EEG. Sure enough she has a seizure. Michael pages the nurse to let her know and she makes note of it.

She then brings in these various sheets. One of which we have to check the times for when she eats, what she ate, and how much and then check the time for each diaper change. They weigh the diapers to see the difference of how much goes in vs. how much comes out. Another sheet was for us to describe each seizure as we see it so they can compare to what the EEG and video shows.

Next Maria comes in to put on the EEG leads. Maria is the Video EEG technician along with another technician that stays in the control room watching the videos, they do up to 6 at a time. Rayleigh has had 2 EEGs before but this one is totally different since she has to have the leads on for 3 days instead of 30 minutes. They use the conducting cream, the lead and then a small piece of gauze drenched in a watery type of super glue and use a cold air blowing tool to apply it. It is very cold and very uncomfortable. Maria gets 5 of the 25 leads on while Rayleigh is still asleep but then she wakes up screaming and so mad that I'm almost in tears holding her down and letting them do this. But knowing that this will give them answers keeps me pushing through and staying strong for my little Bug.  

Not long after Maria leaves Rayleigh starts falling back asleep... then the nurse comes back in with the paramedic, Mike. Mike checks her vitals and then starts the IV. This is standard for the EMU of CCH. They do an IV so if a child has a seizure longer than 2-5 minutes (depending on the child) they will use a rescue anticonvulsant to stop the seizure. Inserting the IV woke Rayleigh again. Screaming, sad, tired. Every time she falls asleep she gets a rude awakening. This kept up for most of the day.

We met one of the epileptologists for about 1 minute. He was pretty much just letting us know that first we need to confirm that she is actually having seizures before we go into the details of anything else. He also let us know that he wouldn't be our epileptologist but he was the only one there that day.

Dr. Coleman warned us that we wouldn't get much face time with the epileptologists while we were there and he was spot on.

Rayleigh was so out of her element that night. They took her Phenobarbital level down from 12ml a night to 6ml so that they would have a better chance at catching seizure activity. After the medicine we fed her and she normally drifts right off after eating. Well, not here. She would scream anytime we lay her in the crib cage thing. She was only comforted by one of us rocking her or laying on the couch/bed with me.

We co-sleep at home for nighttime so I thought maybe I could just lay with her until she falls asleep and then move her into the crib but she just wouldn't sleep. You could tell on her face that she knew this wasn't home.

Around 11:30p after several minutes of rocking with Daddy we finally got her fed again and off to sleep and in her crib.

Well, then at 2:30a she woke with a seizure. This is definitely a change due to the medicine because she never wakes up in the middle of the night with one anymore. There is a red button to push on the VEEG pack when she starts a seizure so we press that and then the microphone is on in the room and the nurses come in and start describing loudly what she is doing, "arms tensed and pulled into body" "hands clutched" "legs tensed" "face reddened" "labored breathing" "coming out of it" "myoclonic twitching" "shes done."

Then Rayleigh begins crying, waking up in a strange place with several people in her face. I pick her up and quietly soothe her on the couch on the other side of the room to let her know that Mommy and Daddy are still here and that everything is OK.

It took a long time for her to go back to sleep but she eventually did so we put her back in the crib and tried to get a couple more hours of sleep on the couch bed before day 2 started.



Rayleigh with gauze wrapped around the EEG leads so she doesn't pick at them and a "no-no" boot cover over the IV.



A Referral

We keep Dr. Coleman, her pediatric neurologist, updated on Rayleigh's seizures via e-mail and phone calls in between visits. So we called him while she was taking the Phenobarb+Keppra to let him know that her seizures and frequency hadn't changed. After 2 weeks of trying this combination he called to check in and we decided then to take her off the Keppra.

Dr. Coleman put in a prescription for Rayleigh to start taking Clenazepam. Clenazepam is a wafer tablet that dissolves in her mouth. It is used as an anticonvulsant, also can be used as a muscle relaxer. We have been giving her one tablet a day (at nighttime to reduce fatigue during the day) and she has been taking it very well. No side effects to report. We started the night we talked to Dr. Coleman, so Bug has been taking it for a week and a half now.

Dr. Coleman let us know that he received the results of the chromosomal analysis and the DNA test that we had blood drawn for last month. Both came back normal in regards to anything epileptic or neurological. There was a slight abnormality though. Bug has a gain, or extra material, on the P32.2 band of her DNA. This can lead to different cholesterol issues, but she shows no signs of that now and it's unlikely that this will ever turn into a problem based on its current state.

The biggest piece of information Dr. Coleman told me was that he put in a referral for Bug to go down to Ft. Worth, TX and be examined at the Cook Children's Hospital.

Cook Children's Hospital has a special, top ranked pediatric epilepsy center. One of the best in the country, if not the best!! While there, she will be seen by Dr. Saleem Malik. His page on the Cook Children's Hospital website is impressive. We look forward to meeting him and getting a second opinion from an epileptologist.

Rayleigh Bug will have a 3-day EEG done when we first arrive to Cook. The last day, day 4, she will have another MRI. They may not need to do this after they view the MRI she had done 3 months ago. The chances they will want to do their own is about 50/50. Their MRI machine is more powerful and will see more clearly and thoroughly into the brain. Her brain has matured since her last MRI so we think they'll probably want to do their own test. Other than that, she will have more blood tests done to check metabolic levels for Coleman and a few blood tests of their own. We will also talk with a nutritionist/dietitian and a metabolic geneticist.

As I'm sure you can imagine we are anxious, excited, nervous and ready to get this done. Hopefully we can get some answers out of this trip.

Keppra's Second Chance

The first medicine Rayleigh tried as an anti-convulsant to control her seizures was Keppra. This was when she was 6 weeks old. Keppra took her number of seizures down from 4-6 a day to 2-3 a day but never decreased the number from there, even with dose increases. After a few weeks on Keppra we added Zonegran. Zonegran is a capsule form medicine generally used to treat partial seizures in combination with other medications. Adding Zonegran didn't change anything so we stopped giving it to Rayleigh after 10 days and proceeded to Phenobarbital. While she was taking Phenobarb we weaned her off Keppra so she was taking just Phenobarb. She went seizure free for about 16 days and then had a breakthrough almost 2 months ago.

We have since been trying increased doses of Phenobarb, taking Phenobarb twice a day rather than just at night and then added Keppra twice a day. Adding the Keppra made no difference in her seizures. She continued to have 2 daily. Once at naptime and once at bedtime.

We were told by Dr. Coleman, her pediatric neurologist, to give the Keppra+Phenobarb combination 2 weeks to see results. During these weeks we noticed Rayleigh eating less and not taking her solid food well at all. At first, we attributed this to a cold she had been getting over but once the cold was out of her system and this eating issue continued we realized it was more likely a side effect of the Keppra.

The 2 weeks came and went and she was still having 2 seizures a day. No improvement with the Keppra+Phenobarb combination.

And So It Continues

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

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

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

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

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

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

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

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

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

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

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

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

The Search for Information

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

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

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

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

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

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

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

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

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

Here We Go Again

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

Friday she did not have a seizure!

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

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

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

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

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

Tomorrow is our monthly checkup with Dr. Coleman.