Re: Return from Mayo (Kleins)

[Guest guest]

Darla, Yikes! what a lot of info to digest! But I am glad to hear you are getting some answers. I will continue to keep you all in my thoughts and I sure hope Asenath and Zipporah stay as healthy as possible, and you too!

I also wanted to let you know I have not forgotten your request for info about Chelsea's seizures. I have been mulling details over in my head and am trying to put them together so that it will make sense. We have also been dealing with illness over here, and whatever it is , it does not want to let go! UGH! Chelsea is just getting over Bronchitis after almost 2 weeks, Jeff has had an ear and throat inf, was sick for a week and is still having pain and pressure, and I have felt poorly since Fri, being the burnt out super mom!

Something that is sticking in my head about the loss of function in her left limbs. . . .the loss was very gradual, I started noticing it around 2 1/2, also about the time she was dx'd with epilepsy. I do believe her neuro felt the loss was due to seizures, I have also read that uncontrolled seizures can cause peripheral nerve damage/neuropathy(also a side effect of phenonbarb) as well as stressing certain areas of the brain, particularly the hippocampus. The loss of fuction became severe and very noticable after her bouts with aspiration pneumonia. I suppose it is possible that, as sick as she was, that she did have an SLE, it was just never mentioned to us. However, her progress in regaining function of her left limbs has been VERY SLOW. She had the pneu at 3 and now at nearly 7 has regained good movement and minimal use of the left arm and hand. I remembered what you had mentioned recently about recovery from SLE's and strokes, that with SLE's, regaining function typically happens within months and is rarley permanent and with strokes, whatever hasn't been regained in a year is usually permanent? My thought, is that with her extremely slow progress, it is probably due more to peripheral nerve damage from seizures. Control over her seizures can vary, but she has much more notable progress when she is doing well and will stagnate when having many seizures. I will get back to more on the appearence and course of her epilepsy. Meanwhile, you get some more rest!

e, Chelsea's mom(nonspecific mito)

PS, Mon was the 1st day in a week that Chelsea got out of bed. I layed her on the floor to rinse her neb parts, when I came back, our dog was licking her hand profusely and she was holding up her arm and giggling! It was just the cutest thing, thought I would mention it since my freak dog has made you laugh before. He still hates the mailman and the UPS man=)