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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!!!!