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November 6, 2008

We are officially at 40 days! Wow, God is good! Kenzie does once again have a cold and is on her 2nd round of antibiotics. Her pediatrician thinks she may have allergies, just like the boys and me! How did they all get Wayne's good looks and my stupid allergies! How funny! We are doing really well! Her behavior is a little bit off, but I imagine being sick and the Topamax isn't helping either. We have her IEP coming up on the 18th of this month . We will be talking about getting her evaluated for kindergarten next year. Can you believe it! She is getting so big!

I have finally figure out how to put a slide show on here, I hope you all enjoy it!

I have signed up (as well as the rest of my family) for the National Walk for Epilepsy! I will be sending everyone an email inviting you all to join us on March 28, 2009. I'm so excited! This is such an awesome experience! Last year there were over 8,000 people and over $2 million raised! This year our team goal is $5000 and I am faithful we will reach it! So watch for my email!


Kenzie's Bday

October 27, 2008

Wow! God is so good! Kenzie has officially been seizure free for ONE MONTH!!! How amazing! She is doing really well! So well, she has new words! She said Corey for the first time yesterday, of course it was because she wanted something. She is amazing! When ever I am on the phone she runs up to me and says "hi" telling me she wants to talk. She will get on the phone and say hi really softly. She will say hi louder than start laughing. It's so great to see her so happy!

She had gotten a pretty bad cold about a week after her last seizure. It had me on pins and needles thinking for sure she would have a seizure, but she didn't. She is feeling so much better in more ways than one.

Our family went to Cox's Farm last Sunday as we always do every fall. We get our pumpkin and the kids play on the slides and whatever else they have there. They have goat farm. You can feed the goats and pet them. Kenzie as well as the boys really enjoyed that. They also had pony rides. Kenzie loves horses. So we got her ready to get on the pony and she freaked out! I couldn't believe it! She wouldn't go near that horse. She was scared out of her mind! I guess there goes her doing the therapeutic horse back riding. She is on a waiting list, it's suppose to be about a year waiting list. Well, next month is a year. We will see how that pans out.

Ryan's team is in the playoffs! I am so excited for him! They are 4-3, but I have faith that they can win the whole thing! Not sure if there first playoff game will be on Saturday or Sunday, we will see! I have signed him up for wrestling again and we start that next Tuesday! Can't wait!

Corey is signed up for basketball. He has never played regular season basketball, just summer league. What a crazy winter it's going to be!

November is Epilepsy Awareness Month!!!!! Now I hope all of you will get your purple ribbons (I have some email me for one!) out and wear them all month long and your wrist bands too! We need to erase the stigma and get the word out!

  • Epilepsy effects 3 million people in the United States and over 40,000 of them are children under the age of 15!
  • About 200,000 new cases each year!
  • 70% of new cases no cause is apparent!
  • More people are diagnosed with epilepsy or seizure disorders than with Parkinson's disease, cerebral palsy, multiple sclerosis and muscular dystrophy combined!

October 7, 2008

Wow, PRAISE GOD! We are on day 11 and no seizures! I just can't believe it! Kenzie is doing so well! She is "talking" and letting everyone know she is feeling good! She was up some of the night last night coughing, so I'm praying that she gets better. When she gets sick, she tends to have more seizures, being sick lowers her seizure threshold. So be praying for her to get well soon!

We celebrated her 5th birthday on Saturday! I can't believe she's 5, it seems like just yesterday she was born! We had her party at Burke Lake Park in Burke and she had a blast! They have a train and carousel. Kenzie loves the train, it's her favorite!! Most of the adults rode the train with her! You know it's just amazing how many people love this one little girl! Grown men she has wrapped around her finger, she's a very lucky little girl! We are lucky to have her!!

October 3, 2008 THE BOYS

So much to cover, and I forgot the boys! Sorry! Corey loves school! He is doing so well! I just got his interims today and he is getting all A's & B's! I'm so proud! He is so big and he knows it! I can't believe how mature he has gotten in such a short time!

Ryan is doing great! School is good, but it's hard for him. He struggles with his reading, but makes up for it in math! He is doing so good in football! He's such a leader! His team is 3 - 0! WOW! I'm so proud of my boys!!

October 3, 2008

I know it's been a while, my computer has been down and I haven't been able to update, and our lives have been a little crazy! So I will just catch everyone up!

Shortly before Kenzie started school this year she started having myoclonic seizures and break through complex partials. So between the atonic, myoclonic and complex partials, things have been really bad! We have been just praying for Kenzie and staying in close contact with her neuros and her teachers. We had an appt with her neuro Marian on September 8th. Told her everything that was going on with her and she introduced us to Dr. Joan Conroy. Dr. Conroy just happened to be the doctor who read her last EEG. She confirmed that Kenzie has Lennox-Gastaut Syndrome and was very interested in have her do a clinic trial of Clobazam. The only catch was she had to be on the same dose of meds for 4 weeks. We were scheduled to up her dose of Lamictal the next day. So with a lot of prayer and seeing to we couldn't take the chance of her being put on a placebo dose. Her seizures were really bad! So Marian and Dr. Gaillard gave a a prescription for Topamax to help with seizure control along with the Lamictal. We decide to go that route. The next week (Wednesday September 17th) she had what looked to me to be a tonic-clonic (grand mal) seizure! I called her neuro, he thought it was a complex partial. (WHATEVER!) Ryan saw her have this one and I think that may have been the worst part!! It's hard for me to see this, but I hate that Ryan had to witness this! The following week on Tuesday (the 23rd) I was driving to work and saw an ambulance go by me, while waiting at the light. Needless to say I missed the light, which at the time was my biggest concern! (How selfish!) Once the light turned I saw where the ambulance was going, into the school where Kenzie goes!! I called Wayne to put my heart at ease and it didn't! Her teacher called him from school and the ambulance was for MY BABY!! I pulled into the school (I was right there, THANK YOU FATHER!) ran inside following some of the EMTs and saw my daughter crying, bleeding in her teachers arms! I scooped her up and just held her, talked to the ENTs and held it together! (That was all GOD, there is no way I could have done it myself!) She had just got to school and walked over to the sand table, her head dropped and she fell to the ground. She started shaking, her lip was bleeding (she hit it on the sand table when she fell), her eyes rolled and then she stopped breathing! It was for about 30 - 40 seconds, but a lifetime to the teachers! We took her home she slept for 5 hours, just exhausted. I called her neuro and they said to keep an eye on her and call them if she had 2 more or stopped breathing. We were lucky she only had her typical myoclonic and atonic for the rest of the day. The next night at 10pm she had another tonic-clonic, for about 2 minutes (it seems liked FOREVER!), she didn't stop breathing, but it was so scary! For the first time in a while, I just held her and cried! I prayed, that's all I could do! I know God has a plan for us, but it's just so hard to see your baby girl go through all this! I hate that the boys have to endure this as well, although they are so much nicer to her when they see a seizure. At least for a few days!!

On Friday September 26th, I had a women's retreat to go to for our church. I really didn't want to go, with everything going on with Kenzie, I was scared!! But, it was 20 miles from home, so I could be home ASAP, if needed! I know God wanted me to go, I had to lead the small group portion for my girls!! It was a really awesome retreat! Our speaker Sharon Glaskow, was just awesome! On Saturday evening after the retreat was done, I spoke with Sharon. I told her about Kenzie and she was just floored! I cried while telling her our trials with Kenzie! She prayed for Kenzie, she was so powerful! Sharon prayed for Kenzie to be healed, not only of her seizures, but for her to developmentally catch up with her peers! For her to become a young prosperous women! WOW! We have only been asking prayers for her relief from seizures, we never thought to ask for a miracle!! God is in the miracle business, so why not ask! After she was done praying, I just knew something amazing was going to happen!

When I got home from the retreat I told Wayne how awesome it was, then I asked him how Kenzie's seizures were that day. NOTHING!!!! Kenzie DID NOT have ANY SEIZURES on Saturday September 27th! It was a miracle! She had a few on Friday, but NOTHING on Saturday! PRAISE GOD! Which brings us to today, we are celebrating day 7 of NO SEIZURES!!! I have noticed such a change in her! She is more aware and she has new words! I am so THANKFUL! I know God is in control!!

Mackenzie will be 5 years old tomorrow! We had decided to only have family and close friends come and celebrate with us, for the fear of her not having a good day (her seizure activity). So tomorrow we will not only be celebrating her birthday, but the fact that we have had this time to be SEIZURE FREE! PRAISE GOD!

August 13, 2008

The visit to Johns Hopkins was great! We had an appointment with Dr. Eileen Vining and we were very happy with her! Dr. Vining has been practicing for 30 years! She said the course of treatment we are getting at Children's is what she would do. So for the time being to stay at Children's, but when it's time to get on the Ketogentic Diet we should come back to Hopkins. Dr. Vining also took a look at her last EEG and said it looked terrible! Kenzie was having seizures the entire time, with the exception of a few seconds rest! Her seizure pattern was characteristic of Lennonx-Gastaut Syndrome, but she is not a classic case. She has 2 of the required symptoms, but in order to be diagnosed with LGS, she has to have all 3 (characteristic EEG, 2 types of seizures and mental retardation). She does not feel at this time Kenzie can be said to have mental retardation. But, Dr. Vining wants her to be part of the new research study called the Epilepsy Phenome/Genome Project. Even though she has no siblings with Epilepsy, she does have some of the LGS symptoms. If that makes since. So Hopkins should be contacting us to set all of that up. All in all it was nice to have the confirmation from them that the treatment we are receiving from Children's is what Hopkins would do! What made it nice to was, Dr. Vining also knows both Kenzie's neuro and nurse practitioner personally! Dr. Gaillard (Kenzie's neuro at Children's) trained at Hopkins. So I think it went really well.

Kenzie is currently on Lamictal 25mg 2x daily and Depakene 2cc 2x daily. We are weaning her off of the Depakene and hoping to be done with it in 2 weeks. I do have a call in to her Neuro. Her seizure activity has increased. Over the weekend she had 26 a day! Yesterday she had a complex partial just a few seconds and 19 atonic seizures. We were doing so well!!

Friday was a very ugly day! I had a conference for church both Thursday and Friday. I had no cell service. Friday morning I was enjoying the speaker and my name flashed across the screen! I called Wayne, he was on his way to Fairfax Hospital. Kenzie had a seizure at school and hit her head! She end up needing 2 stitches and glue. The doctor in the ER, I was not pleased with. After it was all over I told Wayne how proud I was of him for not punching the doctor in the face!! Kenzie felt every stitch. Every time he went to "sew" her up she would scream at the top of her lungs! It was truly heart wrenching!!! I told Wayne it was as bad as watching her have a really bad seizure!! From now on we will go to Children's for her ER needs! I wish I would have listened to my gut and had them put her to sleep! So Kenzie did not finish her last week of school! I will just stick with her teachers during the school year and no more summer school!!!!

Corey is done with basketball and he had a great season. We are very proud of him! Now he wants to play basketball in the winter, it'll be a stench with wrestling, but we can do it! His school Open House for school is the 27th. He will get his locker and his schedule. He is so excited, and a bit nervous!

Ryan has started football! His positions are middle linebacker and running back! Look out LT! Wayne is the defensive coach this season! His Open House for school is on the 29th! I know he's not excited, but I know I am! Crazy as always around here! But that's just what we do!!

July 17, 2008

WOW! I know it's been a while, but I have some exciting news! We have an appt with Johns Hopkins on July 29th! I can't believe how quick we are getting in! I can't wait to hear what they have to say about her. We also have since had an appt with her neuro at Children's. We have changed her dosage again with her meds. We will weekly increase her Lamictal and decrease her Depakene. She is currently on 3tabs (15mg) 2x daily and 6ml (250mg per 5ml) of Depakene a day. Next week, we lower the Depakene to 5ml and continue that pattern until she is off the Depakene. The Lamictal we increase her pm dose then the following week we increase both am and pm dose. I know it sounds confusing, but her doctor wrote all this down and I have it all on the calendar! She has her good days and her bad days with her seizure activity. She is still having anywhere from 8-14 a day. Which is good, but needs to be better!! So that is where we are right now with the meds and the doctors.

Kenzie has been doing really well with her speech therapist! I have seen some improvement with her trying to communicate. Her therapist has also taught me some things as well! It's been a really good experience for both of us! Kenzie also starts summer school on the 28th of this month. She will ride the bus to and from school. I just have to get her back on a school schedule! She has been sleeping a lot more lately, but I know that has a lot to do with her meds changing weekly. I have to say though it's really nice to sleep in!!

We took a trip to the beach for a couple of days, just to get away. Kenzie really liked playing in the sand, and she even played a little in the water! We all had a great time! I wish we could have stayed longer!! I will try and put some of our beach pictures on here soon!

Corey is playing summer basketball and loving it! He scored 2 baskets at his last game and had 3 steals! I think we are going to try and work it out for him to play in the winter! Ryan wrestles so it's gonna be stretch!

Ryan goes to wrestling camp next week, just in the evenings at South County High School. He is really looking forward to that. He also has football practice once a week, and Wayne is coaching football this year! The two of them couldn't be more excited! Just busy as always here at our house!

June 27, 2008

Well, I wasn't able to post a soon as I had originally thought, but go figure! It's not like I have anything going on at my house!!! We have offically up Kenzie's dose of Lamictal to 20mg a day! I am seeing a difference with her seizures. She is averaging about 10 a day. She is also more sleepy than usual. I have to admit, it's nice that we sleep in until 9am now! I know I will have to get her on a better schedule once summer school starts. I am waiting to here from her neuro to see when we are going to start lowering her Depakene.

The genetics appt went really well. Dr. Tifft had a few other things she wants to test Kenzie for, I honestly can't remember what the test where for. By the end of the appt she had said that she did not want to rule out Angelman Syndrome just yet. It's still just a wait and see thing. Also, waiting to see what these other test results say. Although, she was very interested in the fact that Kenzie has a new type of seizure! I had brought up to her, what if the fact is Kenzie has Epilepsy and that's her dx?! That she may have been having seizures all along and we never picked up on it until she had her first big seizure. She did agree with that thought as well. I also mentioned to her about the EEG pattern and told her who read the EEG. Dr. Tifft said that if the doctor who read it (she is THE neurologist in reading EEGs) said that her spike and pattern was suggestive of Lennox-Gastaut, chances are Kenzie has Lennox-Gastaut Syndrome. Her neurologist have not given her that dx, saying she is not a classic case?! Not sure what that really means.

Wayne and I really had a neat experience on Thursday (the 19th). We had a conference at the Epilepsy Foundation in Landover about VNS thereapy. When we got there we were the only HOPE mentors there (HOPE is Helping Other People with Epilespy) so we had a chance to talk with the VNS representives. One of the women there was from Johns Hopkins!! I told her about the whole LGS thing and the medicine issue we have been having. I truly just want to get a second opinion. She took our information and I heard from her yesterday. She is trying to get us in with Dr. Kossoff (I was given his name by a family from the Walk for Epilepsy). I am very excited to see what he has to say. So hopefully the next blog will be about our trip to Hopkins!!!

June 14, 2008

Summer is officially here at our house! Everyone is out of school and ready to live at the pool! Boys' are done with baseball (summer basketball will start next month as well as practice for football!) Corey is officially a 7th grader (if you can believe that!!!) and Ryan is now a 3rd grader! Where has the time gone!

Well, I think I spoke to soon! I always seem to do that! Kenzie has been having about 13-21 seizures a day since my last post! We had to increase her Lamictal to 1 1/2 tabs a day (15 mg a day) and I'm not sure if that is playing into this seizure increase or not. She has also been really sleepy the last few days. I'm sure the increase in seizure activity doesn't help. On Thursday she woke up at 8am then went back to sleep at 10am and slept til 12:30. She then wanted to go back to sleep around 5! All day she was really clingy and sleepy. She would have her burst of energy (during Doodlebops!) but crawl back into my lap (or Wayne's). I do plan on calling her neuro on Monday if this keeps up. I have started using the really cool website to track her seizures (I will put the link on her blog). The website asks for seizure detail and med info. Then you can print out the info and take it to her doctor. You can even email the report to your doctor if you want. The site also gives you a graph to show you increase in seizure activity and medication levels. It's really nice and helpful! I would recommend it!

Kenzie also had her first speech therapy appt on Tuesday. It went pretty good. She was having a bad day that day, very sleepy. Her speech therapist said there is a lot of hope for her to talk. She uses words appropriately (Kenzie does confuse yes and no!) and she interacts with you (or anyone that will listen for that matter!) Her speech therapist also said she too, does not see autism as a dx for her. Kenzie does have some autistic tendencies, but doesn't have autism. According to her developmental pediatrician at Children's, her neuro and now her speech therapist she doesn't have autism. I believe in my heart of hearts she doesn't have autism. Every time I entertain that thought, I have some one else tell me they don't believe she is autistic. Some days I wish she would get a dx (not just Epilepsy), other days, I just want to get through the day! Time will tell! God is really working on my patience! It is all in His time, not mine! I just keep praying for strength, wisdom, and His guidance! Without Him, I can do nothing, with Him I can do anything! I just pray that I keep this perspective. Don't get me wrong, I have my days, but God will not leave me, He is with me! Even when Kenzie is driving me crazy and I just feel like I can't do it anymore, God is with me and He won't leave me, I just have to keep reminding myself of this fact! Thanks for reading! I will post again after her geneticist appt on Tuesday!

June 8, 2008

Wow, it's been a while since I have updated the blog! So sorry, things are just a bit crazy here! The boys baseball is winding down, well kind of! Both of their teams are in the playoffs, so we are juggling that along with our church co-ed softball team! Kenzie's last day of school was the 6th (my bday) so summer has officially started for her! I am happy to report that Kenzie's seizure activity is slowing down! We are now averaging 10 seizures a day! How awesome! So now we have to get through the boys' last week of school, then summer is here for our family! It will be so nice not to rush in the morning and go to the pool! Kenzie loves the water! So do the boys! I am hoping that things will go better this summer, now that she is off Keppra! Kenzie will go to summer school from July 28th - August 15th. She will receive services (ot, pt and speech) when she is in school and she will also see other kids her own age. That will also be a nice break for her.

On Tuesday Kenzie has her first speech therapy appt! I am very excited about this! We have never search out speech out side of school before. Our insurance would only pay $1500 lifetime max! Which is just crazy! The benefits changed this year to year max and I thought it's something we should try even if we only do this over the summer. The therapist came highly recommend by a few moms I know and I really think this is going to be good for her!

On the 17th we have a follow up visit with her geneticist. This will be her first time seeing Kenzie since she has started having atonic seizures. I'm anxious to see what she will think about these new seizures! We shall see!

I will do my best to update the blog every 2 weeks, sorry it's taken me so long! Thanks for your patience! Until next time!!!!

May 20, 2008

We had such a busy weekend! With both the boys having baseball games both Saturday & Sunday, then church Sunday morning! Kenzie really didn't have such a great weekend. On Sunday she had 21 seizures, which is a lot for her lately. I'm so thankful that Jess stayed with her Sunday while she napped so we could go to the boys games. She slept for 4 hours! She was pooped from Saturday. It may sound crazy letting her sleep like that, but I know her seizures take a lot out of her even if they don't last that long. Yesterday they were down to about 15. Her behavior is better, so I am thankful for that, we are working on her not hitting. What a power struggle that is! She really hates to be told no, but I can't blame her, who likes to be told no!?

Yesterday I called our insurance to find out about our appeal letter we sent and never heard anything back! Found out the letters will not go before the board until July! I am fighting to get her dental procedure covered by our medical insurance and I'm fighting to get them to cover her genetic testing. The insurance wants a letter stating that her meds hurt her teeth and how the course of her treatment would change with the results of the genetic testing. It's just stupid! For those of you who don't know that story: Kenzie had to have 10 junior root canals and 10 crowns put on her teeth. One day at the dentist she had a few "spots" on her teeth, then a few months later she had holes in 2 of her teeth. When they put her under the dentist did xrays and found 10 of her teeth were full of cavities! So on November 1, 2007 she went under for a 2 1/2 hour surgery just on her teeth! The best part no dentist in our insurance plan will see her, so we take her out of network to Children's Hospital, and they don't take our insurance. It's just a mess! The genetic testings is being done to rule out Angelman Syndrome. The test did come back neg (as did all of the others for AS) but her geneticist still says there could be a chance she could have AS. We have an appt with her in June. Hopefully, because of her new seizures, she may have an idea of what road to go down next?! Sometimes, I just wonder if these doctors will ever come up with a diagnosis for Kenzie! I also wonder if we are suppose to get a diagnosis! I guess if things in life were as simple as we think they should be, then maybe we wouldn't have a story to tell. We would miss all those experiences that in turn could help others. It's really hard to keep that perspective. I just keep praying and asking God for strength, patience, and wisdom. Apart from Him, I CAN NOT do this!

May 17, 2008

Wow, what a day! We started at about 8am this morning, Corey had a baseball game at 9. After Corey's game, we went to another baseball game for their cousin Sami. Ryan's game was at 5:30, didn't start until 6! Finally got home at about 8pm! Wow! Long day! Kenzie did get to take a decent nap at home in between the games. She has been quite irritable lately. Not sure if it's the meds or just been a busy couple of days. Hopefully tomorrow won't be so bad. After church she can nap before the 3pm & 5pm games. Her seizures seem to be increasing again. She went from 20-30 a day to 10-15! Cut them in half, but now since we added the Lamictal her seizures are up to 17 or more a day (she had 17 today and the seizures seem to be so much more intense) Please keep praying for us! Her behavior seems to be getting a little worse. I'm just hoping that it's just been a crazy couple of days and she will get back on track!

May 16, 2008

So Kenzie is now on both Lamictal 5mg daily (2.5mg tabs 2x daily) and the Depakene 8cc 2x daily. We are praying this will work for her! Her neuro wants to increase her dose every 2 weeks, because of the possibility of developing a rash! (which increase when you taking these 2 meds together) He said it will take 2 months to really get an idea if the Lamictal is working or not! Her neuro also told us what next 2 drugs he wants to try then the Ketogenic Diet will be put into play, and if all that doesn't work we are looking at VNS! (Vagus Nerve Surgery) WOW! It was a lot to take in on Monday but, I know it will all be ok! All I keep thinking about is the verse Jeremiah 29:11 "For I know the plans I have for, plans to prosper you and not to harm you, plans to give you hope and a future." I know God is with us in all of this! He will not give us anymore than He knows we can handle! Although, I have to say there are days I really think God's got us confused with some other family!

We are well into baseball season! I know the boys wish the rain would stop long enough to play a game! It seems like forever since their last game! I was able to talk Wayne out of be a coach (manager, board of directors, league director, etc) this year! It's been really nice to have him with Kenzie and I in the stands! This is Corey's last year in the league, he will go up to Babe Ruth next year! Doesn't seem like I should have a rising 7th grader! Ryan is playing AA this year! I can't believe how big all the kids are getting! What a blessing all three of them are! Corey & Ryan are such good big brothers!

Welcome to Mackenzie's Walk : May 15, 2008

Mackenzie, we call her Kenzie, is a spunky little 4 year old! She loves her two brothers Corey and Ryan. She loves her puppies Zoey and Cloey. Kenzie has never met a stranger! Everywhere she goes she greets them with a "hi" and a beautiful smile! Her speech is limited, but she will do everything she can to get your attention. Honestly, its hard to miss Kenzie! We started seeing issues with Kenzie when she was about a year. She wasn't meeting regular developmental milestones and honestly I put it off for a while. Thinking it was because we really never let her do things on her own. She was the baby and only girl grandchild on both sides of the family! She started walking at 22 months. We had her evaluated by Child Find (special education for preschool aged children) and she qualified for services. So she started in the preschool program in November 2004, she just turned 2. She was showing mild progress, but in October 2006, was when things changed. October 9, 2006 Kenzie had her first seizure! After taking her to the ER, and seeing her neurologist, with nothing more than some blood test, CT scan and an order for an EEG, we went to Children's National Medical Center in DC. WOW, they were AWESOME! We went through the ER and things really started happening. They did a spinal tap, (NEG), another MRI (NEG, she already had an incidental finding of a Chiari 1 Malformation, non-symptomatic) and an EEG. Her EEG was abnormal (she had a seizure during the EEG) and she was then diagnosed with epilepsy, having complex partial seizures. After 3 days in the hospital she was put on Keppra 1cc 2x daily and sent home. We did have to up her Keppra to 3 cc once home, because of some little break through. Kenzie was seizure free for almost a year. In October 2007 (almost to the day!!) she had a break through seizure! Up her Keppra to 4cc with a few break through, but things were going ok. We had notice Kenzie falling down a lot. At first we thought she was tripping, but later we saw her fall and there was nothing to trip on. I started doing research on the internet and saw a description for atonic seizures! WOW! Then one day at school she fell 6-8 times for no apparent reason. We knew she was having atonic seizures (drop attacks). Called Children's and was told to bring her to the ER right away! When she was seen it was late and they just sent us home with her Keppra raised to 5cc 2x daily (1000mg). That was the first time I was really unhappy with Children's. Followed up with HER neurologist and they order another EEG. Came back, abnormal and she was actually having atonic seizures. Taken off of the Keppra (we had to ween her off) and put on Depakene. Kenzie started having about 20-30 seizures a day while on the Depakene. Which brings us to the present