Guest guest Posted December 1, 2005 Report Share Posted December 1, 2005 To me it smells like nail polish remover (the acetone). Others say it is a fruity smell. Once you smell it, you never forget it. Whenever I have my nails done, an alarm always goes off in my head. I must be programmed like Pavlov's dogs! Jodi Z Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2005 Report Share Posted December 4, 2005 Jodi, That is funny, because it is the same for me. I walked into the main office of my school the other day and I smelled the ketone smell and thought where is Jonah? I course he was not with me. Then the nurse tells me that she just cleaned the main board with an alcohol like cleaner... , Jonah's mom Re:Ketone smell > To me it smells like nail polish remover (the acetone). Others say it > is a fruity smell. Once you smell it, you never forget it. Whenever > I have my nails done, an alarm always goes off in my head. I must be > programmed like Pavlov's dogs! > > Jodi Z > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2005 Report Share Posted December 4, 2005 , At least I know I'm not the only " neurotic " one. I guess once you go through it, you never really forget. My husband thinks I have the sense of smell of an animal - I smell everything. It's really a curse. Jodi > > Jodi, > That is funny, because it is the same for me. I walked into the main office > of my school the other day and I smelled the ketone smell and thought where > is Jonah? I course he was not with me. Then the nurse tells me that she > just cleaned the main board with an alcohol like cleaner... > , Jonah's mom > Re:Ketone smell > > > > To me it smells like nail polish remover (the acetone). Others say it > > is a fruity smell. Once you smell it, you never forget it. Whenever > > I have my nails done, an alarm always goes off in my head. I must be > > programmed like Pavlov's dogs! > > > > Jodi Z > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2005 Report Share Posted December 4, 2005 I had noticed recently that Brockton had bad breath and after reading these posts about Ketones, I finally caved and bought some test strips. I checked his urine this morning when he woke up. (Thanks for the cotton ball advice! It worked great!) His stick was negative. He's had a bit of a boogery nose for a couple days so now I'm thinking the bad breath must be because of that. UGH. He's been eating really good too. There is nothing wrong with this childs appetite! He ate about a 1/4 of a fish filet and a chicken nugget and about 8 french fries just for supper! Plus he had a 4 oz. bottle right after that and drank about 3 oz. of that. Do most children with RSS have Ketones? Are they existent from the beginning or do they start later? Do they come and go? Obviously I know nothing about it! I was just wondering how often I should check his. The bottle of sticks I bought has ALOT in it. Thanks! Jeanie (mother to (18) and Brockton (15 mo. RSS) Jodi Zwain wrote: , At least I know I'm not the only " neurotic " one. I guess once you go through it, you never really forget. My husband thinks I have the sense of smell of an animal - I smell everything. It's really a curse. Jodi > > Jodi, > That is funny, because it is the same for me. I walked into the main office > of my school the other day and I smelled the ketone smell and thought where > is Jonah? I course he was not with me. Then the nurse tells me that she > just cleaned the main board with an alcohol like cleaner... > , Jonah's mom > Re:Ketone smell > > > > To me it smells like nail polish remover (the acetone). Others say it > > is a fruity smell. Once you smell it, you never forget it. Whenever > > I have my nails done, an alarm always goes off in my head. I must be > > programmed like Pavlov's dogs! > > > > Jodi Z > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2005 Report Share Posted December 4, 2005 The ketone issue can come up at any unexpected time, unfortunately. If you ever see that Brockton has not eaten well, is cranky, just not himself, then check for ketones. This is especially true if he has a stomach virus. Please print out this message and save it just in case. I hope you don't need it, but better to be prepared..... RSS kids spill ketones before their blood sugar drops. This is called ketotic hypoglycemia. This means that their stores of glycogen/sugar are all used up and the body is not using muscle to burn for fuel. Remember, RSS kids are missing a layer of fat and don't have much on them to begin with, so anything that stresses the body could cause this to happen. The brain is an organ that will do whatever it can to survive, at whatever cost to the rest of the body. It is imperative that it get the nutrition it needs to prevent learning disabilities that could occur. With our kids' larger heads, this can happen very quickly. If your child is spilling ketones and they are moderate to large, he must be admitted to the hospital and put on an IV with 10% dextrose, or D10. This must be continued for as long as he is sick and spilling ketones. The ideal issue is to rehydrate and flush out those ketones and keep them away. Most doctors will tell you that just taking him to the ER for rehydration is enough. It is not. This process can take 4-5 days at least. (Or, if you're Max, about a week....) The child must first be rehydrated, have no ketones and then begin eating. A 24 hour gut rest is first. Then it is time to reintroduce food. Usually this means that he will start slowly with clear liquids. Stick to this for a minimum of 6 hours, but usually 12 is necessary. If those clears are being tolerated, then you can move on to soft foods. But the IV must stay in at a maintenance rate to keep the hydration going. After 6 hours or so (you can do this part a little faster if tolerated), you can graduate to other foods as tolerated. Once he is eating back to normal and can be off the IV and still have no ketones for 6 hours or so, then you can go home. You have to know what you are talking about, have a plan and be able to explain it. Most doctors are not aware of this protocol and may not be supportive. But there are enough of us who have been there/done that to know it is necessary and true. I believe that the MAGIC Foundation has some documents to support this as well. Jodi Z Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2005 Report Share Posted December 5, 2005 Jeanie, I know Jodi Z answered you and gave you all the info. I just wanted to add my two cents. My son Jonah does not have a feeding tube because he does eat too, but he is very thin and spills ketones at the drop of a hat. We have to be so vigilant and we test him all the time. We are usually able to keep it under control, but sometimes it gets away from us. If he is not sick, we can get them back under control, but we tell him that he does not have a choice, he must eat something; a banana is really good. If they are moderate to large, which is rare, it takes longer, but I know that we can deal with it as long as we can get him to eat. If he is sick and not eating that is whole different thing. When Jonah is active, he spills them so easily. It is a real balancing act because we don't want to stop him from his activity and always have to push food, but those ketones must be controlled. Hope this helps a bit. , Jonah's mom Re:Ketone smell > > > > > > > To me it smells like nail polish remover (the acetone). Others > say it > > > is a fruity smell. Once you smell it, you never forget it. > Whenever > > > I have my nails done, an alarm always goes off in my head. I > must be > > > programmed like Pavlov's dogs! > > > > > > Jodi Z > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2005 Report Share Posted December 5, 2005 Jodi - I'll make sure to take a shower then when I eventually get to see you. LOL - H > > > > Jodi, > > That is funny, because it is the same for me. I walked into the > main office > > of my school the other day and I smelled the ketone smell and > thought where > > is Jonah? I course he was not with me. Then the nurse tells me > that she > > just cleaned the main board with an alcohol like cleaner... > > , Jonah's mom > > Re:Ketone smell > > > > > > > To me it smells like nail polish remover (the acetone). Others > say it > > > is a fruity smell. Once you smell it, you never forget it. > Whenever > > > I have my nails done, an alarm always goes off in my head. I > must be > > > programmed like Pavlov's dogs! > > > > > > Jodi Z > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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