Guest guest Posted October 11, 2003 Report Share Posted October 11, 2003 One suggestion, ask your dr to " humour " you and give you a prescription for the stix. Then they should be covered under insurance, from what others have said, under " durable medical " or something like that, same as for diabetic Worth a shot Glenna Steele wrote: > Hi all, > I tried to post this before, but it didn't show up. If it pops > up as a duplicate later, sorry for the confusion. > I need some help from anyone who wants to jump in. We have come > to the conclusion that we need to be doing glucose monitoring. I e- > mailed my daughter, Macie's, doctor and he responded today. When I > asked about the need for it, he said that if we are being meticulous > about the diet and she isn't getting extra food, he doesn't think it > would be beneficial. We are trying desparately to figure out why > she started having seizures after nearly two years of complete > control.....sooooo, as much as we hate to start the sticks, we are > willing to do it to see if it helps us figure this out. > I bought a glucometer today (Freestyle brand), and it came with > 10 sticks. I saw that refills are VERY expensive, so I need to get > my act together. Hopefully I can figure out in 10 sticks how to do > it without screwing them up, and figure out if Macie's glucose does > get out of whack. > I'd appreciate any info any of you can give about how often you > test and when, and what ranges you are looking for. I printed off > some old posts of 's and Sandi's that included some numbers. > Any advice on technique? > Macie is 22.5 kg, 3.0:1 ratio, and 1550 calories in case it makes > any difference. > > > THANKS A BUNCH! > > > Glenna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2003 Report Share Posted October 14, 2003 What do you mean by protein slant? Bil Glenna Steele wrote: > Thanks, Sandi, for taking the time to help.... > No, Macie has pretty much maintained since the adjustments. They > were only done right at a month ago, so it may be too early to tell > as far as weight gain and growth. Overall, her seizures were much > better last week than in a while, but this week brought a cold and > diarrhea, so we kind of went downhill. I guess that might be > normal, but this never caused problems before. I'm anxious to see if > the glucose readings give us some insight - sure hope so. Since I'm > pretty much making these changes on my own and with the good advice > I'm getting from you all, I constantly second guess whether I'm > doing the right thing (raise or lower ratio/calories/protein?????) > In my simple mind, I would rather Macie have a protein slant, > because otherwise the ratio would have to be met with carbs. They > definitely go straight to her system, as protein produces " some " > glucose when it is burned. Maybe I'm not looking at it the right > way. I know it is very much trial and error, and I'm so thankful > that I realize that now and didn't throw in the towel for meds...but > WAITING really is the hardest part! > > Anyway, thanks again. Don't know what I'd do without all of you > out there watching out for Macie. > > Glenna > > > > > > >>Did Macie grow taller & /or gain wt--since her calories and protein > > were > >>adjusted? >>I know it is a trial and error--to either increase or decrease > > calories, > >>ratio or protein >>Zara was increased in protein--thinking her high glucoses were > > from not > >>enough protein and taking from lean muscle--then we took away 50 > > calories--this was > >>all done very slowly >>She will be 10 yrs old in a month >>wt 59# (26.8 kg) ht50 " (127 cm) >>protein was upped from 25 gms to 26 gms >>Calories=1575 >>3.5:1 ratio >> >>Let me know how the glucose readings are >>Sandi >> >> >> > > > > > " 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 > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2004 Report Share Posted January 11, 2004 Hi Joanne, Our dietitian and neuro don't use glucose monitoring either. I read a lot about it on the group here, and from my understanding many centers do use it on a regular basis. My interest in it came from Macie's urine ketones...always high no matter what. One of the parents on the group found out her daughter was cheating by eating marshmellows, she was having breakthrough seizures, but her ketones never reflected the extra sugar she was burning. I'm sure someone else could explain it better than I, but I think basically they look for sugar levels right before a meal (or first thing in the morning), and then wait 90 minutes or so after a meal, when they should be highest, to see what the levels are. There are target levels that keto centers have found to offer the best seizure control, and the glucose readings should offer help in making adjustments in the meals and calories to get those target numbers. We tried this with Macie to see if we saw any patterns, but unfortunately they were all over the place. We were doing this on our own, but this kind of reinforces my theory that something is out of whack with her metabolism. I will definitely be asking about glucose testing at our visit with the new epilepsy center. Hill e-mailed me several bits of information about glucose monitoring and target levels for some of the centers. I believe she contacted them directly to find out. I have your e-mail, so I'll forward them all to you. I hope it helps! Glenna > Hi Glenna, Can you or anyone else shed some light on glucose > monitoring...what can you learn from it? Are there any patterns that > you would see? Our dietitian never said anything about this and I'm > wondering if we should be monitoring. Thanks! Joanne > ] Quote Link to comment Share on other sites More sharing options...
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