Guest guest Posted August 16, 2004 Report Share Posted August 16, 2004 Hi, They have tested him a number of times for bacteria and gut dysbiosis- --nothing has ever showed up. Kris > > Hi, > > > > Cole is going through this deal where is refusing meds while awake- > -- > > we have only ever had this problem when he is sick. We are on day > 4 > > of no meds while awake (or very little that we have down his > > throat). We get are meds compounded--they don't taste too bad-- he > > has actually seemed to like them in the past. I think this is > > behavioral. Anyway, we are at our wits end. (my husband) is > > calling Dr. Whiteman to ask him if we can have a G-T placed since > we > > will be at Mayo. We are watching him fall apart this weekend > because > > he is not getting his stuff. He has chronic diarhhea (which Dr. > > Whiteman has seen at every visit---he always says " that's not > O.K. " -- > > the only thing a GI doc has done here is put him on Zinc. Dr. > > Whiteman believes that he has some type of malabsorption issue > which > > he said he drew some labs for (and of course has not called us). > > Because of the chronic diarrhea he HAS to have his meds every 3 > hours > > (awake and asleep). We give the carnitor 1cc at a time 12 times a > > day to prevent worse diarrhea. He is also refusing all fluids > except > > some milk---but he is eating fine---so his stomach must not be > upset. > > > > Here is the questions: what do you think the likelihood is that a > GI > > doc could see us while we are inpatient on such short notice? > > > > If they see him---what is the likelihood that they will consent to > a > > G-T? > > > > If they see us and consent do you think they could just extend our > > stay and place it right away? > > > > I know you have discussed the GI docs before...I don't remember > who > > is it that we would want to see? > > > > We have done everything possible to avoid this----but he is losing > > ground just over the last 3 days (muscle tone worse, behavior > awful, > > dystonia increasing). > > > > The only thing that is saving him right now is that he is getting > > meds while asleep (my boys drink from sippies in their sleep and > stay > > asleep during the drink--usually). He is now sleeping worse > because > > he isn't getting his daytime meds. > > > > I hope Dr. Whiteman answers 's panic call tomorrow--- sometimes > he > > is not so good at that. Any hints on getting a call back? > > > > Kris Quote Link to comment Share on other sites More sharing options...
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