Guest guest Posted August 17, 2004 Report Share Posted August 17, 2004 Why does she have the gtube? I know a lot of mito parents use polycose but I am not sure about dosages and how you give it...I just know several of my mito-mom friends use it. Have you tried this? deb...mom to three great kids and wife to one amazing guy!http://www.lifeofloveproject.org/http://www.heartliftersgallery.com/ Crazy Lizzies!! PURSES! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2004 Report Share Posted August 17, 2004 Hi - Sorry to hear Gracie's having problems again. I don't have any suggestions, but will keep her in prayer. lbregra@... wrote: Well, I am back to the beginning, again, regarding Gracies hypoglycemia. She is always low, but we do pretty good maintaining during the day. Her problem is that she drops so low in her sleep. We originally did the cornstarch, worked for a while but we had to keep increasing the dose. Eventually it became to constipating for her and we had to stop. Then we switched to a high complex carb diet all day, which also worked well for a while. Now she is back to the beginning, waking up about every hour during the night in a sweat. I have started giving her a big complex carb dinner as late as possible. Now I am feeding her dinner around 6:30 to 7 and she falls asleep usually around 8. This is giving her a few hours of good sleep, but then around 12 she is up every hour again. I do give her something to drink when she is up and it does put her back to sleep, but it does not last. She is also waking up in the morning and headed straight to the fridge. On average she eats two breakfasts a day. I am at a loss. She does have a g tube, but it is not for feeding so I hate to resort to putting her on a pump all night. I am hoping someone has any good suggestions, so we don't have to resort to this. Also I don't know if we will get good reception from the GI if I do ask for a pump. She is determined to keep her off any type of enternal feeding, fearing that she will only want to be fed that way, and the fact that she is maintaining herself quite well on her own (and a little help from Periactin, twice a day). I completely agree with her GI, but wonder if there is any more options. Sorry this got long. Thank you in advance. Please contact mito-owner with any problems or questions. Ann (mito), mom to (3 ys) - asthma, seizures, tremors, milk intolerance, reflux, ptosis, *speech has improved greatly, suspected mito__________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2004 Report Share Posted August 18, 2004 She has the g tube primarily for medication use. She just takes so much that she was refusing food because it had medication in it. We were also not able to be sure she was getting the right doses, because she was spitting them out. It is also there for fluids when needed. I have heard of the polycose, but we have never tried it. I really don't know much about it, other than the name. Is this something I can get OTC, or do I need a prescription? Thanks for the suggestion. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2004 Report Share Posted August 18, 2004 , We give a bolus feed every night at 2am.We talked about a pump but the doc said it is better to bolus. It is better for the liver (I don't know why). this keeps her from being hypoglycemic. It was hard for the first few yrs.I did it every night-I ended up having my health decline because of lack of sleep. We now have nursing every night that does it and her meds.It definately helps. We started waking her and feeding her (before the tube) and that was very difficult. Now with the tube it is a 30 min deal. We used portegan (low fat with MCT). We also put in her meds and miralax at that time too! Dawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2004 Report Share Posted August 18, 2004 , I just wanted to bring up two thoughts for you. One would be a pain in the caboose, which is wake up and give a small bolus of ensure. Since you are having to wake up with her anyway this may not be such a big deal. The other is have you checked breathing? Billy had the night sweats and his pulmonary doctor said this was something she sees a lot with people who are having trouble breathing. Billy was already on night feedings at that time and had been for several years. She said that the sweat was from having to work so hard to breath. This might be making the blood sugar go low since the usage is higher. Twana > hypoglycemia... Now she is > back to the beginning, waking up about every hour during the night in a sweat. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2004 Report Share Posted August 18, 2004 Good thought on the respiratory idea! She has been having a hard time with her asthma lately. I will have to pay closer attention to that tonight. I am pretty sure she will have a rough night because she refused to eat most anything today. She also kept trying to have me put fans on her, even with the AC on, so I know she is already getting uncomfortable. I may try a dose of albuteral to see if it helps. Thanks again. Quote Link to comment Share on other sites More sharing options...
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