Guest guest Posted May 18, 2001 Report Share Posted May 18, 2001 My daughter Gaby (almost 6 years old), is due for othopaedic surgery next month on a turned foot. I know that the surgery will give her the best chance to fully weight bear on both her legs, which will in time also help us with transferring/moving her about, as she does not walk independently. However, her mito disease and ketogenic diet do make things a bit complcated. We have excellent support from the medical field in regard to mito and the keto diet, but putting it all together with an anaesthetic does make me nervous. I'd love to hear any words of wisdom or caution from the groups to help me prepare as best I can for this event. ne (in Australia). Mum to Gaby 5 years, mito disorder, ketogenic diet, G Tube, microcephaly, global delays, and the prettiest smile. http://gabylavender.port5.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2001 Report Share Posted May 19, 2001 Words of wisdom: you cannot bang into surgical team's heads often enough about the keto diet. No matter how many times you tell them over and over that no glucose or dextrose can go in IV, there is a good chance they will try it. I think thats most important thing to remember, keep telling them and telling them and reminding them until you feel like a fool and then still kept reminding them. Jess' day surgery went fine but I have heard of too many kids getting screwed up. Also talk to anaethesolist directly about type of sedation used re: diet. Also after fasting and then sedation, was so hungry after her surgery I gave her two suppers taht night. At midnight she started throwing up. NO matter how hungry they are, don't overfed them And don't panic, just stay on top of it and things should be fine, but you do have be on top Good luck michelle, jessica's mom Tony & ne wrote: > My daughter Gaby (almost 6 years old), is due for othopaedic surgery next > month on a turned foot. I know that the surgery will give her the best > chance to fully weight bear on both her legs, which will in time also help > us with transferring/moving her about, as she does not walk independently. > > However, her mito disease and ketogenic diet do make things a bit > complcated. We have excellent support from the medical field in regard to > mito and the keto diet, but putting it all together with an anaesthetic does > make me nervous. > > I'd love to hear any words of wisdom or caution from the groups to help me > prepare as best I can for this event. > > ne (in Australia). Mum to Gaby 5 years, mito disorder, ketogenic diet, > G Tube, microcephaly, global delays, and the prettiest smile. > http://gabylavender.port5.com > > " The Ketogenic Diet....a realistic treatment option, NOT just a last resort! " > > List is for parent to parent support only. > It is important to get medical advice from a professional keto team! > Subscribe: ketogenic-subscribe > Unsubscribe: ketogenic-unsubscribe > > > " I know God never gives us more than we can handle. . .I just > wish he didn't trust me so much. " Mother Theresa > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2001 Report Share Posted May 19, 2001 ne Can I add to the warning to be on the alert for doctors and nurses who dont listen. They just dont think twice about the keto diet and Hannah was one of the kids who got IV glucose, in spite of all that I had done to prevent it. Talk to everyone who comes near Gaby, watch everything and question everything. It is exhausting but we cant trust completely in the knowledge and/or experience of hospital staff to protect our keto kids. I visited, phoned and wrote letters to the ortho ward before Hannah's surgery. I hung a large note on the end of Hannah's bed. I spoke to every doctor and nurse, the anaesthetist and the recovery room staff before anything was given to her. In recovery she was given IV which was called Hartman's solution. Cant remember what was in it but I checked it out and it was fine. THe trouble began up on the ward when the IV bag was changed. Just ONE person had not listened carefully to me. Anyway, I hope all your preparations go well. Try to do as much up front as you can so that once you are there you can be as free as possible to observe and monitor everything. Cheers Re: forth coming surgery >Words of wisdom: you cannot bang into surgical team's heads often enough about the keto >diet. No matter how many times you tell them over and over that no glucose or dextrose >can go in IV, there is a good chance they will try it. I think thats most important thing >to remember, keep telling them and telling them and reminding them until you feel like a >fool and then still kept reminding them. Jess' day surgery went fine but I have heard of >too many kids getting screwed up. >Also talk to anaethesolist directly about type of sedation used re: diet. >Also after fasting and then sedation, was so hungry after her surgery I gave her >two suppers taht night. At midnight she started throwing up. NO matter how hungry they >are, don't overfed them >And don't panic, just stay on top of it and things should be fine, but you do have be on >top >Good luck >michelle, jessica's mom > >Tony & ne wrote: > >> My daughter Gaby (almost 6 years old), is due for othopaedic surgery next >> month on a turned foot. I know that the surgery will give her the best >> chance to fully weight bear on both her legs, which will in time also help >> us with transferring/moving her about, as she does not walk independently. >> >> However, her mito disease and ketogenic diet do make things a bit >> complcated. We have excellent support from the medical field in regard to >> mito and the keto diet, but putting it all together with an anaesthetic does >> make me nervous. >> >> I'd love to hear any words of wisdom or caution from the groups to help me >> prepare as best I can for this event. >> >> ne (in Australia). Mum to Gaby 5 years, mito disorder, ketogenic diet, >> G Tube, microcephaly, global delays, and the prettiest smile. >> http://gabylavender.port5.com >> >> " The Ketogenic Diet....a realistic treatment option, NOT just a last resort! " >> >> List is for parent to parent support only. >> It is important to get medical advice from a professional keto team! >> Subscribe: ketogenic-subscribe >> Unsubscribe: ketogenic-unsubscribe >> >> >> " I know God never gives us more than we can handle. . .I just >> wish he didn't trust me so much. " Mother Theresa >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2001 Report Share Posted June 13, 2001 Hi all... I've added all of the suggestions so far. I also made Kathy's great paper FAQ's Part 2. I set them to go out to new members upon subscription. I'll send them out to the group in another day or two incase anyone thinks of anything to add. It's in the files if you want to peek and make more comments/additions. I also added all the stuff Barb sent...hopefully I stashed it all in a way that makes sense. Keep the info coming...Nan _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com 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.