Hi all- sister Cindy and I have a friend, Rosa, whose son has LKS. It's a type of seizure disorder, marked especially by speech loss. Deep inside I know the reason the ped wants an EEG is because of LKS. So I emailed Rosa to ask some questions. Not sure I like her answers, but see her response below. Like I said, this is something I had already thought about. I am now considering bringing Connor with us on our next trip to Boston. Keep you posted....
Jen,
I think it is very, very important that Connor have this EEG.
Some children with LKS never show clinical seizures. Zander didn 't have a clinical seizure ( that I noticed) until about 2 years after he began showing symptoms, and I just happened to see it because I was laying next to him in bed, it happened while he was sleeping....
Yes, LKS does have a specific EEG pattern associated with it, and more often than not a child with LKS is mis-diagnosed with PDD, Zander was. He is 100% not autistic. However when this illness first reared its ugly head he began to fit the profile of "autism spectrum". He was also mis-diagnosed with hearing loss, because of the auditory processing problems that go along with LKS..
Please set that EEG up as soon as possible. If Connor has an abnormal EEG, that has to be addressed immediatly before it causes clinical seizures....
The pediatrician is not reaching...I am very impressed that he thought of that because, especially in this area, LKS is very rarely thought of...or at least mentioned...
Please keep me updated... and if you have any questions at all don't hesitate to ask...
Rosa
About Me
- JSmith5780
- I am a wife and mom of 3 little boys. My oldest is 6 and had Infantile Spasms and clonic seizures. His seizures are currently controlled by Vigabatrin, a non-FDA approved drug. My twins are 5. One is a typical, energetic little boy and the other has been diagnosed with Asperger's, an Autism Spectrum Disorder. This blog tells of our everyday lives and our struggles to get the best care and services for our boys. I also work full-time as a contract Materials Engineer.
1 comment:
Hey Jen,
Wow, does he really think that Connor might have a sz disorder too? I agree with Rosa....get the EEG. It's not invasive, and it does tell them a lot. Call your neurologist....let them help you. I've read medical studies that discuss the relationship between autism and epilepsy and how it's misdiagnosed. And I've also heard of a family who never heard their son talk until he was put on an AED, and then he talked a bunch! They were told he had autism....so even if it isn't LKS, the EEG could tell them if it's something that can be helped.
Thinking of you and Jeff......keep us posted.
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