Guest guest Posted August 16, 2004 Report Share Posted August 16, 2004 Hi Geri, Took your advice and called them asking for Kennedy or Ferenci. First appt without ped calling is Sept. I have a call out to the ped to hasten an appt. Unfortunately I won't get anymore sleep because Zacky still needs fed at night. Cole is doing very poorly this afternoon. I can't stand seeing him fall apart. I mean I literally can't stand it. I have a video in and am just letting him be. Thank you 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...
Guest guest Posted August 16, 2004 Report Share Posted August 16, 2004 Was your ped able to get through? Kim is the name of Dr. Ferenci's nurse. I think you have to press 2, then 2 on the next message and then 0 on the next one to get her. I know it is 2's and 0's so try any combination if the first doesn't work. If she hears of the situation first hand she can probably get you in sooner. Also tell them you are willing to take any cancellation with any of the doc's or the nurse practitioners. That is if you are. The only other thing I can suggest is to take him into Children's ER. I know you have concerns about that, but Dr. Ferenci is there all the time and you would be seen that day. I usually have my ped call ahead of time to let them know I am coming and then I don't have to sit in the waiting room. They take us back right away and start IV's. I hope you get some help here soon. Call if you need anything. Geri-Anne > > > 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...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.