Guest guest Posted June 2, 2004 Report Share Posted June 2, 2004 I forgot to mention in my last post that Caeden has been low energy lately and symptoms have been much worse than ever lately. We had a almost normal boy till about a year and half ago when everything happened and it was purely blamed on him being a preemie and having cerebral palsey. humph so not true all along its been the mito. He does not sit roll or walk at all. He is nearly 3 years old now. He is wheelchair bound but cognitivly hes fine which is harder as he knows what he wants but has no way to do it other than us do it for him or with him. Our genetics guy said yesterday since none of the vitamins work anymoe like they did in beginning there is no sense to continue them.So we are only staying on L-Carnitine. It seemed like when we started the meds he did so great then after 2-3 month no more gains only step backwards. I guess I am just down about this. I know it may not be an immediate death sentence, but I guess my thinking is if there isn't any more treatments for him then why dp we keep putting him through more tests and blood work. arggghhh sorry needed to vent. The doc said it was very important to keep therapy going so he doesnt stiffen or contract, he so floppy now and 2 years ago we thought we were carrying around a board. He so lovable and fun the thought of not having him around kills me. Thanks to all who are hear every day to ehar all of our gripes whines and stresses I dont know what I would do without all of you. (mom to Caeden 2 1/2 mito myopathy NOS, Laiken 9 year old not yet tested but many problems and Josh 15 epileptic and ADHD) Quote Link to comment Share on other sites More sharing options...
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