Guest guest Posted December 16, 2003 Report Share Posted December 16, 2003 In a message dated 12/16/2003 5:19:05 PM Eastern Standard Time, kiddietalk@... writes: I just hope it's all a misdiagnosis -I pray is going to be fine! Please pray for Sending good thoughts to and . Stay positive. Dana `s mom 4-ACC, SOD, HYDRO(SHUNTED), CHIARI(DECOMPRESSED), SBO,GTUBE,SEIZURES,CDLS..and a VERY smart cookie!!! ALSO, ALI 6, MIKE 15,JOHN 17, AND AMANDA 18 WIFE TO KEVIN-who is battling cancer Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2003 Report Share Posted December 16, 2003 Hi everyone. I have some very sad news and a prayer request for 's son . She asked me to post this for him as this is a very hard time and she is understandably devastated. She is taking for a second opinion on Tuesday -however there are very few that are knowledgeable about the condition is diagnosed with. In fact the new testing procedure I posted about was developed by 's doctor -and had that test which showed flat line for movement in the gut. The test itself was just horrible. is going to call the researcher I posted the information about yesterday -and is appreciative for anyone that has any support or advice for her and . has read all the research -and there are quite a few children that die from the diagnosis she was given for , and told me she just can't research it like she did apraxia. She can't stop crying....and that's not the scariest part. told me to let everyone know that was tested for another condition which they fear may have caused the one he was diagnosed with (she doesn't want anyone sending her info on it just yet unless it's positive because she can't even look at it) If tests come back positive -it has no cure. It's a progressive disease of the gut. said to me either way it's bad -they are both grave diagnosis but of course the second one we can't accept it will be. Either way is going in for the surgery which will help prevent further blockage -and she will need to inject a liquid into the plastic tube in his stomach each day. and Tanner went to preschool together -and Tanner still remembers him. He's a cute little boy who is doing so well in school. I was crying as said to me " He's come so far and is doing so well with the apraxia, sensory issues and all -and now this...it's just not fair " It's not fair. They won't find out the results for the second condition until sometime next week ...right before the holidays. I just hope it's all a misdiagnosis -I pray is going to be fine! Please pray for . ===== Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2003 Report Share Posted December 16, 2003 They definitely have our prayers. It is also good that she has you, for tremendous support. Thank you. Carolyn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2003 Report Share Posted December 17, 2003 Poor . Prayers being sent his way. Quote Link to comment Share on other sites More sharing options...
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