Guest guest Posted August 31, 2004 Report Share Posted August 31, 2004 , 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! Wish Us Luck!!! Hello all. As most of you know, we have been s-l-o-w-l-y weaning Langan from keto because of her persistent acidosis issues. We were at a 3:1 ratio for quite a while and moved down to 2:1 last Saturday. When we lowered, our neuro agreed to let us stay at a very small dose of trileptal (75 mg 2X a day) to see what happened, instead of increasing with the diet change. We saw a seizure the first night and one 3 days later and then they started tapering off. Strangely, though, Langan had low ketones when we first dropped and then they jumped to large by the middle of the week. And, unfortunately, even at 2:1 her bicarbs were 16, which is just not an acceptable level given her history. Soooo the neuro and dietician have given us an 8 day weaning schedule. And I am TERRIFIED!!! What am I going to do without the scale???? If we saw seizures with each change when we were moving at a snail's pace, how bad is it going to be at this pace? I totally agree with the neuro that it needs to be done so we can see what is going on metabolically with Langan, but at the same time I am so scared. We're staying where we are medicine- wise to see what happens and hopefully we can weather the storm and stay at a low dose. PLEASE wish us luck. We'll keep everyone posted, and I'll still be around this wonderful keto family, but I am just sooo scared to take this step. Thanks! , mom to Langan, 2 yrs old and keto kid since 11/03; weaning from keto due to metabolic acidosis, scared to death!! " 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 August 31, 2004 Report Share Posted August 31, 2004 It sounds like your child is extremely dehydrated. You should take him to the hospital or a clinic and get him properly hydrated. Don't forget that the keto diet results in an increase in acidity as the ketone bodies are acidic. Bill 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 August 31, 2004 Report Share Posted August 31, 2004 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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