Guest guest Posted January 21, 2009 Report Share Posted January 21, 2009 We just got a diagnosis of MDS last week, along with a long list of Dr's that we are supposed to see (just to be cautious we were told). So far, my son is 10 months and has had no health issues/problems and very little delays. He is a little weak in the chest area and his tongue is out about 80% of the time so we are seeking therapy for that. However, we were also referred to an Opthamologist, ENT, Developmental Ped, to get an EKG, ultrasounds of the abdomen, and an MRI. Now for a baby that is developing normally thus far, do we really need to rush to get these done? Which did you all see as top priority? Also, did many of you get tested yourselves to determine if this was inherited? Any info will help at this point, as we are still in the shock/overwhelmed phase! Thanks Quote Link to comment Share on other sites More sharing options...
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