I'm glad Todd wrote the previous post for Dray because he has been silent in this blog... and he is not a bystander in all of this. Todd is very involved. I am the one that is persistent, and always pushing for more answers and more progress, Todd is the calm one that doesn't stress as much, but just shows love and concern for Dray. They have such a neat bond. Todd has to be gone for 6 weeks for instructor pilot training this summer. He was on skype with Todd and said, "Dad, I want to take you out of the computer and snuggle you!" He loves his dad!! This past week Dray has really been communicating so much more effectively. The new words he has added to his vocabulary are coming at an impressive rate. I can hardly believe the words he is picking up and repeating back to me. I have not seen him pick up new words like this since he was probably 3 years old. I know we are not totally in the clear, but if this continues I see such a great future for him.
Dray had his birthday on Friday, July 22nd. Every birthday is a time of reflection for me. On his 4th birthday, just 3 days before, he was diagnosed with LKS. I remember not being able to explain the concept of a birthday to him... he had no idea what was happening, or how old he was, he couldn't understand anything going on around him that day. I couldn't ask him what he wanted for his birthday... he didn't have the words to respond to that question. He could barely speak. But, this year has been awesome. He understands everything, and came to me with a list he had made of the presents he wanted. He could repeat back to me what we were doing for his birthday, who was coming, and he knows how old he is. This is so different than 2 years ago. What a miracle!! Only problem is that he now thinks he is old enough to do everything.... he says, "I'm 6 now, I can stay home by myself, or I can light fireworks...." Oh dear! What a sweet little boy... can you tell we love him so much? He is constantly amazing us, and we can't wait for more!
For those who might be interested... we have kept Dray on Depakote (20 ml daily, split into 2 doses), zarontin (6 ml daily), Namenda (2 ml daily), L-carnosine ( 1,000 mg daily). I know when I talk to other parents with LKS kids I always wonder what their meds are, so that's for those of you who may be reading this for info regarding your own child!
Here is a comment from Holland. My son is diagnosed with LKS two years ago. He is on high dose of hydro cortisone. And has ethosuximide (which is called ethymal in Holland) and extra calcium, vitamin D and something to protect his stomach from all the nasty medicines. He also takes a medicine to influence his behavoir in a positive way (risperdal). My son is 8 years old and since he gets this medication, he is doing really well at school. He learned reading and writing. He still has a different way of speaking and understanding, so we sometimes have to use sign language. But this is becoming much better every month. His last EEG was good, so we are now trying to lower the hydro cortisone.
ReplyDeleteElise van Keulen (from The Hague, Holland)
Hi. My name is Mandy and my daughter Morgan, 7 now had her 1st "absent seizure" at 3 1/2. She was diagnosed with LKS October 2010 at age 6 but started to show signes of verbal communication loss as early as April 2010 shortly after beginning kindegarten. I follow your post and feel like I am often in your home going through the same things you go through. We jumped over our local neurologist after the sudden prgression of speech loss and her lack of understanding simple statements such as "Please get your jammies on" She was originally diagnosed with rolandic epilepsi which after googling all nigth one night frustrated with the lack of possible treatment it became obvious that she had LKS. We ended up at the UCSF epilepsy center in San Francisco and the amazing doctors there made a diagnosis within 30 minutes which was later confirmed via EEG. They began an aggressive treatment of depekote and diazapam. It was not fun for a period of 3-6 months being on the valium as she was very lethargic and 'out of it" all the time. However it worked. She went from having almost 100% overnigth EEG activity to less than 1% in a 3 month period and our daughter was coming back to us. She was nearly 100% mute when we began treatment which came on in a period less than 2 months. She is only on Depekote now and has been for the last 6 months and she is now speaking, singing, reading and otherwise back to herself of course with a lot of thereapy. Truly a miracle. We recently went back for a 6 month check-up and they have seen 30% spikes in her overnigth EEG and have increased her depekote with additional testing/check-ups in 4 weeks. I find it helps to connect and hear from the families with similar experiences as ours. We embrace the "miracle" we have been given each and every day and I pray for your sweet boy. Where do you guys live and how was the EEG results from October 7th. Thanks for posting this blog and keep it up for all the LKS moms out there. markquez4@yahoo.com
ReplyDeleteI agree about connecting with others....such a great source of strength to get through this! All of these kids need our prayers. I'm so grateful Morgan is doing so well. Gives me hope too :) We are on our way there!
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