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!!
August 13, 2008
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!
