Guest guest Posted August 15, 2004 Report Share Posted August 15, 2004 Hello, I saw your post regarding putting a g tube in for medication purposes. I have a lot of experience with this, as our daughter Grace has a G tube primarily for medication issues. We were going through the same problems you described and hated seeing our daughter deteriorate, knowing it was because she was not getting her medications properly. Dr. Cohen actually recommended the g tube, but it took the GI to do it. We had been seeing a GI for a long time, and it still took awhile for her to go ahead with the procedure. Understandable, but she did not see the point of such an invasive tactic to take medications. Finally, after three months, she actually contacted Dr. Cohen personally and he explained to her the actual necessity of the g tube. Within a few days she had the procedure scheduled. It did take her awhile until she finally agreed that it was the best thing we could have done for her. It really took the comparison bloodwork of before and after to make our case, that we were doing what was best. I never have regretted doing it once. Hopefully Dr. Whiteman can personally recommend it to a GI. I do think if he approches a GI, instead of the parents, they will be more willing to do it. Please feel free to email me, if you want any more info on this. I understand what you are going through. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2004 Report Share Posted August 15, 2004 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...
Guest guest Posted August 15, 2004 Report Share Posted August 15, 2004 Any hints on getting a call back? Kris, Maybe you could call today and see if he's the doc on call for the weekend. If so, I am sure he would call you back. I'm sorry to hear about the difficulties you are having right now with Cole. Good luck on your trip to Mayo. I hope you are able to get everything taken care of in one trip. Kim - Mom to and Lindsey > 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 > > > > > Please contact mito-owner with any problems or questions. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2004 Report Share Posted August 15, 2004 I just wanted to throw a quick question in, I have multiple medical problems, and in the middle of it all last year I developed severe diarrhea that never went away... The doctors were all so convinced it was all part of my 'systemic problem' (that had not yet been diagnosed) that they didnt bother looking for something run of the mill... I had diarrhea for 8 months by the time i went to the Mayo Clinic (Im in Canada, so its VERY difficult to get Mayo paid for, but they didnt know what to do with me here, so they sent me down), I got many answers as far as my 'systemic issues' went (still didnt consider mito at the time though), but the best thing that came out of it was that I had a chronic bacterial intestinal infection. Run of the mill food poisoning. 8 months worth at that... they said that because everyone was so focused on the big picture they never did a stool culture when i started haveing diharrea... would have saved me ALOT of trouble... anyways, I would assume since this has been ongoing for quite some time, that Cole has probably had a stool culture done at some point, but i wanted to make sure, as it was so easily overlooked in me for so long... (they never caught it because for once i had something normal?) I hope you get some good answers out of this visit... it sounds like you all need a break! Keely > 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...
Guest guest Posted August 15, 2004 Report Share Posted August 15, 2004 Kris, If you can't get the G-T done at mayo, ask Dr. Whiteman to send a letter to Dr. Ferenci, Minnisota Gastro. He see's Wyatt and ohter doc's in his practice see kids with mito here in Minneapolis. All of my experience with Dr. Ferenci tells me he would do it in a heart beat. He put Wyatt's in knowing that we would mainly use it for meds and supplement his nutrition with it. I know you have been against doing the G-T, but think of the sleep you will get. You can run the meds at a slow rate all night:). Call if you need Dr. Ferenci's number or if you have any questions. Dr. Kennedy is also in his practice and she is fabulous too. Geri-Anne and Wyatt, Complex I > 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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