Landau-Kleffner Syndrome

We took our monthly trek to duPont yesterday and spent the customary five hours there. Bug Boy insisted on ordering the "kids meal" of chicken nuggets and fries, what a healthy lunch! I was glad we ate there, since we didn't leave until well after two o'clock and I had only packed snacks.

The Neurologist is fairly confident that Landau Kleffner Syndrome is what ails Bugaboo. There is no real cause and no real cure. Some kids get it before age 5 and lose the speech skills they have, often becoming aphasic once the seizures set in. Sometimes, with medication and therapy, the kids regain some of their skills. There is a good chance this will happen with Bugaboo. Most of the children diagnosed with it grow out of it. But we have no way of knowing if he has already suffered significant brain damage and cannot recover. It is so scary and confusing! And, on top of that, if he truly has this disorder it means that all of the doctors who have told me for the past two years that Bugaboo does not have autism would be right. But I feel he does. Even if he developed the seizures when we thought he did (twenty-months or so, around the time he stopped sleeping at night!) he was still a "different" kid before that. I mean, a quiet baby. Almost too quiet. And he was happy and content, but was never all there, you know? Always off on his own little planet with the happiest smile on his face. A little angel. Except for when he does his whirling dervish impersonation and destroys my house.

So the plan is to continue with meds and keep at that for three more months. Then we do a repeat EEG to see where we are, then try steroids if we have to. We have to get that brain calmed down!!!!

Bug Boy also saw the Neuro. They don't think he has this disorder but are doing some other tests because the doctor sees his spasticity and is concerned. He is going on six and is having bowel control and muscle problems. He has always had delayed motor skills. There is a chance he has a seizure disorder, has some mild (very, very mild) CP due to the cord around his neck and blueness at birth (although he SCREAMED for hours after he was born!). He was always over-stimulated easily and was spastic as a baby, so this would make sense. They will do an EMG (muscle stim test) to rule that out and also an MRI to rule out Muscular Dystrophy and other things. I don't even want to think about this until the tests are done. We won't know much until December. Hopefully overtaking will be fine and we won't have that hanging over our heads for their birthdays and Christmas!

Darling and I are slowly recovering from out recent sicknesses. I still have no energy and hope to make it back to the gym by Monday. It will be three full weeks since I have been back and I feel like a total blob. If I don't work out regularly I go nuts. I need the physical outlet! Hope the exercise clothes fit, doesn't seem like they will right now!

Okey-dokey. Time to get Ms. Procrastination in the shower and get the house picked up before the deluge of children arrives. Not until 3:30 but I still have errands to do!