Guest guest Posted February 2, 2006 Report Share Posted February 2, 2006 Everyone, I think we can all breathe a sigh of relief, if your child has reflux. The chances of them developing Sandifer's Syndrome, if the reflux is relatively mild to moderate and they are on medication and they are older than toddlers, is pretty minimal. In fact, the GI we saw, who is this reknowned woman that works with Crohn's disease and that area of GI, was shocked that it was even mentioned for . No way, she said. In a nutshell, has several issues going on, and no one knows what is connected and what is just random. Doesn't that sound like our kids? She is still having 2-3 of these upper body movements a day. She has random off and on bad headaches. And her EEG was abnormal, in that a small area of her brain on the right side isn't cycling almost at all (only 2 times a second instead of 9-12). However.... the brain thing could be a result of a skull fracture she had when she was 4, and just " be there " not causing anything. Her headaches could be TMJ, as one of you pointed, out, grinding her teeth, etc. And the movements? Maybe involuntary? Maybe tics? Maybe nothing? So.... the MRI was normal. THat was huge. And she will have a 3-day EEG in the hospital in several weeks. For now, we are taking it easy. I met with her teachers (the 4th graders rotate between 3 teachers based on subject) and said that TWO hours a NIGHT for a 9-10 year old was insane. We agreed that she would do one hour, and that was it. I got her a timer. These schools are crazy! > > Hey . I saw you had posted a couple messages and thought I > would try to " catch " you. I have been wondering how has been > doing? Has she still been having the seizures? And, I think you had > mentioned that they are thinking that it isn't the Sandifer's now. I > was curious if you have learned anything else? I am very interested in > keeping up with her on this. I hope she is doing alright. Is she > still having her episodes? > > Jodi R. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2006 Report Share Posted February 2, 2006 , Thanx for the update on . I hope the EEG goes well. The hospital stay won't be any fun, of course, but hopefully they can come to some sort of conclusion as to why this is happening. Let us know what you find out. JR > > > > Hey . I saw you had posted a couple messages and thought I > > would try to " catch " you. I have been wondering how has > been > > doing? Has she still been having the seizures? And, I think you > had > > mentioned that they are thinking that it isn't the Sandifer's now. > I > > was curious if you have learned anything else? I am very interested > in > > keeping up with her on this. I hope she is doing alright. Is she > > still having her episodes? > > > > Jodi R. > > > Quote Link to comment Share on other sites More sharing options...
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