Guest guest Posted September 2, 2004 Report Share Posted September 2, 2004 Saro, No answers from hospital yet... aël is doing better, even if he vomitted yerstarday he's better, he smiled this morning and it's the best present he could give to me! We are on 2.1 ratio and I think it's really better for him, even if doctors said it's not enough, maybe some children are different and need less than others...? I cut down some calories too because aël doesn't finish his meals...so maybe it is too much for him? We are in the Douth of France in Toulouse, a city but not a big choice in neuros!!!! There only one hospital with pediatric reanimation so we have to go there , the others hospitals don't want us in case it will be too serious... aël is on trileptal 225 mg at night.... Carolyn Re: Wish Us Luck!!!/ > > > > > > Carolyn > > Since your drs know so little about the diet I would really > > question > > what they mean exactly when they say iel is having a problem > > with > > acidosis. They might be right but since the diet tends to make you > > a bit > > acidic and that is considered normal for the diet they may be > > misinterpreting the bloodwork. Is there any way you can get an > > actual > > copy of the blood gasses and post the numbers here? > > , 's mom > > > > caronath wrote: > > > > > , > > > > > > Your story sounds our... > > > aël is on keto diet since the end of july 04 and he's on > > > > > acidosis, We're now at 2.1 ratio too but he's still on acidosis, > > the > > > problem is that I don't know what to do with this, neuro from > > hospital > > > didn't say anything ....We are alone!!!! > > > I'm very scared too because Nath was a bit better but still > > have > > > tonic clonic seizures but he's so miserable that it hurts me a > > lot > > > to see him poor , tired, sick, white and his rings under his > > eyes!!! > > > I wish you good luck of course for the following and if you > > could > > > tell me more about metabolic acidosis it'll be great...I give > > you my > > > email caronath@... . > > > I give since yesterday Nath bicarbonate of sodium in powder > > but I > > > don't even know how much to give him.... > > > > > > Lots of love > > > > > > Carolyn, aël's mum > > > > > > PS/ Saro gave me the idea to ask you,thanks to her! > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2004 Report Share Posted September 2, 2004 Carolyn, Definitely better to reduce ratio if there is vomiting and lethargy etc. You can always increase it later when things are stable. You should get an accurate weight each week to determine how many calories are needed. Glad to hear that things are improving. Bill caronath wrote: > Saro, > > No answers from hospital yet... > aël is doing better, even if he vomitted yerstarday he's better, he smiled this morning and it's the best present he could give to me! > We are on 2.1 ratio and I think it's really better for him, even if doctors said it's not enough, maybe some children are different and need less than others...? > I cut down some calories too because aël doesn't finish his meals...so maybe it is too much for him? > > We are in the Douth of France in Toulouse, a city but not a big choice in neuros!!!! There only one hospital with pediatric reanimation so we have to go there , the others hospitals don't want us in case it will be too serious... > > aël is on trileptal 225 mg at night.... > > Carolyn > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2004 Report Share Posted September 3, 2004 Carolyn, I'm so glad that ael is doing better. Some children certainly do better on low ratios. Rohan was on 2.1:1 for a long time. Do you have a dietician ? You have to make sure he's getting enough calories as otherwise it can lead to more problems. If you don't have a dietician, you could post ael's age, height weight, calories and how much protein he's getting and see what the others think. Keep asking the hospital for copies of the reports or at least the test result figures. All the best Saro caronath wrote: > Saro, > > No answers from hospital yet... > aël is doing better, even if he vomitted yerstarday he's better, he smiled this morning and it's the best present he could give to me! > We are on 2.1 ratio and I think it's really better for him, even if doctors said it's not enough, maybe some children are different and need less than others...? > I cut down some calories too because aël doesn't finish his meals...so maybe it is too much for him? > > We are in the Douth of France in Toulouse, a city but not a big choice in neuros!!!! There only one hospital with pediatric reanimation so we have to go there , the others hospitals don't want us in case it will be too serious... > > aël is on trileptal 225 mg at night.... > > Carolyn > > > > Re: Wish Us Luck!!!/ > > > > > > > > > Carolyn > > > Since your drs know so little about the diet I would really > > > question > > > what they mean exactly when they say iel is having a problem > > > with > > > acidosis. They might be right but since the diet tends to make you > > > a bit > > > acidic and that is considered normal for the diet they may be > > > misinterpreting the bloodwork. Is there any way you can get an > > > actual > > > copy of the blood gasses and post the numbers here? > > > , 's mom > > > > > > caronath wrote: > > > > > > > , > > > > > > > > Your story sounds our... > > > > aël is on keto diet since the end of july 04 and he's on > > > > > > > acidosis, We're now at 2.1 ratio too but he's still on acidosis, > > > the > > > > problem is that I don't know what to do with this, neuro from > > > hospital > > > > didn't say anything ....We are alone!!!! > > > > I'm very scared too because Nath was a bit better but still > > > have > > > > tonic clonic seizures but he's so miserable that it hurts me a > > > lot > > > > to see him poor , tired, sick, white and his rings under his > > > eyes!!! > > > > I wish you good luck of course for the following and if you > > > could > > > > tell me more about metabolic acidosis it'll be great...I give > > > you my > > > > email caronath@... . > > > > I give since yesterday Nath bicarbonate of sodium in powder > > > but I > > > > don't even know how much to give him.... > > > > > > > > Lots of love > > > > > > > > Carolyn, aël's mum > > > > > > > > PS/ Saro gave me the idea to ask you,thanks to her! > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2004 Report Share Posted September 3, 2004 Carolyn, I would weigh him once a week to make sure he doesn't lose any weight. Hallie Re: Wish Us Luck!!!/ > > > > > > > > > Carolyn > > > Since your drs know so little about the diet I would really > > > question > > > what they mean exactly when they say iel is having a problem > > > with > > > acidosis. They might be right but since the diet tends to make you > > > a bit > > > acidic and that is considered normal for the diet they may be > > > misinterpreting the bloodwork. Is there any way you can get an > > > actual > > > copy of the blood gasses and post the numbers here? > > > , 's mom > > > > > > caronath wrote: > > > > > > > , > > > > > > > > Your story sounds our... > > > > aël is on keto diet since the end of july 04 and he's on > > > > > > > acidosis, We're now at 2.1 ratio too but he's still on acidosis, > > > the > > > > problem is that I don't know what to do with this, neuro from > > > hospital > > > > didn't say anything ....We are alone!!!! > > > > I'm very scared too because Nath was a bit better but still > > > have > > > > tonic clonic seizures but he's so miserable that it hurts me a > > > lot > > > > to see him poor , tired, sick, white and his rings under his > > > eyes!!! > > > > I wish you good luck of course for the following and if you > > > could > > > > tell me more about metabolic acidosis it'll be great...I give > > > you my > > > > email caronath@... . > > > > I give since yesterday Nath bicarbonate of sodium in powder > > > but I > > > > don't even know how much to give him.... > > > > > > > > Lots of love > > > > > > > > Carolyn, aël's mum > > > > > > > > PS/ Saro gave me the idea to ask you,thanks to her! > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2004 Report Share Posted September 4, 2004 aël is 6 ears old, he's 122 cm height and 19 kg. I give him 24 gr proteins /day. calories 1124/jour Thank you, I need help please because he's very bad but I don't want to spent our life at hospital , it even doesn't change anything!!!! Carolyn, aël's mum Re: Wish Us Luck!!!/ > > > > > > > > > Carolyn > > > Since your drs know so little about the diet I would really > > > question > > > what they mean exactly when they say iel is having a problem > > > with > > > acidosis. They might be right but since the diet tends to make you > > > a bit > > > acidic and that is considered normal for the diet they may be > > > misinterpreting the bloodwork. Is there any way you can get an > > > actual > > > copy of the blood gasses and post the numbers here? > > > , 's mom > > > > > > caronath wrote: > > > > > > > , > > > > > > > > Your story sounds our... > > > > aël is on keto diet since the end of july 04 and he's on > > > > > > > acidosis, We're now at 2.1 ratio too but he's still on acidosis, > > > the > > > > problem is that I don't know what to do with this, neuro from > > > hospital > > > > didn't say anything ....We are alone!!!! > > > > I'm very scared too because Nath was a bit better but still > > > have > > > > tonic clonic seizures but he's so miserable that it hurts me a > > > lot > > > > to see him poor , tired, sick, white and his rings under his > > > eyes!!! > > > > I wish you good luck of course for the following and if you > > > could > > > > tell me more about metabolic acidosis it'll be great...I give > > > you my > > > > email caronath@... . > > > > I give since yesterday Nath bicarbonate of sodium in powder > > > but I > > > > don't even know how much to give him.... > > > > > > > > Lots of love > > > > > > > > Carolyn, aël's mum > > > > > > > > PS/ Saro gave me the idea to ask you,thanks to her! > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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