Guest guest Posted August 31, 2003 Report Share Posted August 31, 2003 We traveled back up to Mayo this past week. Our visit went well with Dr. Whiteman. He made a couple of adjustments to their B1 and B2 vitamins in hopes to help their myoclonics. We put the girls back on phenobarb about 6 weeks ago in hopes to stop the myoclonics but, have had no success. Dr. Whiteman feels that some could just be myoclonic jerks and not actual seizures and that is why we haven't had luck in controlling them. He unfortunately said that we may never have total control of them. Major bummer! 's potassium was low and Lindsey's was on the low end of normal. We are supposed to push foods high in potassium and see if this will help boost those levels. Does anyone else have this problem with low potassium? He mentioned another "syndrome" that could be a possibility but, we are thinking positive and hoping the diet will help things. The echocardiograms came out fine and their hearts are working great! That was good news. We follow up again in two months and he should have the results of Lindsey's skin biopsy by then. He was still very encouraging to us and told us he feels optomistic about the girls' future. That was the best news we got all day! I hope you all are enjoying your Labor Day weekend. The weather has cooled down considerably here so the girls are FINALLY getting to go outside and play! What a relief! Blessings, Kim - Mom to and Lindsey (23 months) Quote Link to comment Share on other sites More sharing options...
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