Guest guest Posted May 27, 2004 Report Share Posted May 27, 2004 Maureen- Ohhhh, so sorry for your troubles, your hands have been full. I was reading your post as I myself was eating strawberries and soymilk, made me smile a little. I was thinking about the end of your post when you said the Doc's think it could be a metabolic disorder, and I have a few questions. How old is Bryn? How has her glucose been? Are there any other characteristics that stick out about Bryn? for example in her lab work, troubles you had in the past or currently have ect. ? The more symptoms you and your doc's can gather the better chance you have of finding out which if any metabolic disorder she may have. , mom to Ethan worse on diet > > Hi. My daughter Bryn has been on the diet since 4/19. We are currently > weaning off. She had a hard initiation in the hospital ( acidotic) - > but blood and urine were normal upon discharge and have been normal > since ( only some RBC in urine). She was never herself on the diet. > Speech immediately took a nose dive - typically 20-35 words in speech > therapy - on the diet she was saying 5-8 words in speech therapy. Her > personality was gone - low energy disconnected. Medications were > reduced while in hospital and then again during our 5+ weeks on the > diet. Horrible screaming began at the end of our first week home. Diet > was manipulated to 3:1 - screaming continued. The screaming at first > was not every day - we would have one or two days a week with no > screaming and then days when she would be upset for an hour or so - > escalating to days when she screamed for 5+ hours. Doctors were no > help. I gave up last Thursday when I was flying from NY to San Diego > and she screamed until that night. The only thing that soothed her was > drinking. I spoke to the dietician on Thursday and went to unlimited > fluids. With this change she was wonderful. Personality back no > crying. This did not last. Ketones were less (small to moderate) on > strips so we lowered the ratio. Crying is back. Giving some juice > helped somewhat. She comes alive. Ketones were small to moderate and > crying was still happening. Even between the crying her personality is > gone. Tuesday I threw in the towel and fed mostly keto food but added > her soy milk and some more strawberries. She woke up. I would like to > know if possible what any of this means. She seems to need more carbs > and more calories. Weirdly throughout the entire time on the diet she > has gained weight. Calories were reduced. This past week with the > unlimited drinking she has become very bloated + 3lbs. People are > asking me if she is on steroids. We are seeing the Dr. (ped) today but > you know how that goes. Neurologist is saying he has never heard of > the diet making anyone worse? The sad thing is the tonic and big drops > are gone and I know something about the diet worked. She was put on > 1:1 but she is still crying. It seems like if she doesn't eat every 2 > - 2.5 hrs. she has this altered state. She is showing no ketones. Any > suggestions? There always was a suspicion of a metabolic disorder - Do > any of you know which metabolic disorders would be worse on the diet? > Maureen > Mom to Bryn 5 900 calories 1:1 IS " 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 May 27, 2004 Report Share Posted May 27, 2004 Maureen- Ohhhh, so sorry for your troubles, your hands have been full. I was reading your post as I myself was eating strawberries and soymilk, made me smile a little. I was thinking about the end of your post when you said the Doc's think it could be a metabolic disorder, and I have a few questions. How old is Bryn? How has her glucose been? Are there any other characteristics that stick out about Bryn? for example in her lab work, troubles you had in the past or currently have ect. ? The more symptoms you and your doc's can gather the better chance you have of finding out which if any metabolic disorder she may have. , mom to Ethan worse on diet > > Hi. My daughter Bryn has been on the diet since 4/19. We are currently > weaning off. She had a hard initiation in the hospital ( acidotic) - > but blood and urine were normal upon discharge and have been normal > since ( only some RBC in urine). She was never herself on the diet. > Speech immediately took a nose dive - typically 20-35 words in speech > therapy - on the diet she was saying 5-8 words in speech therapy. Her > personality was gone - low energy disconnected. Medications were > reduced while in hospital and then again during our 5+ weeks on the > diet. Horrible screaming began at the end of our first week home. Diet > was manipulated to 3:1 - screaming continued. The screaming at first > was not every day - we would have one or two days a week with no > screaming and then days when she would be upset for an hour or so - > escalating to days when she screamed for 5+ hours. Doctors were no > help. I gave up last Thursday when I was flying from NY to San Diego > and she screamed until that night. The only thing that soothed her was > drinking. I spoke to the dietician on Thursday and went to unlimited > fluids. With this change she was wonderful. Personality back no > crying. This did not last. Ketones were less (small to moderate) on > strips so we lowered the ratio. Crying is back. Giving some juice > helped somewhat. She comes alive. Ketones were small to moderate and > crying was still happening. Even between the crying her personality is > gone. Tuesday I threw in the towel and fed mostly keto food but added > her soy milk and some more strawberries. She woke up. I would like to > know if possible what any of this means. She seems to need more carbs > and more calories. Weirdly throughout the entire time on the diet she > has gained weight. Calories were reduced. This past week with the > unlimited drinking she has become very bloated + 3lbs. People are > asking me if she is on steroids. We are seeing the Dr. (ped) today but > you know how that goes. Neurologist is saying he has never heard of > the diet making anyone worse? The sad thing is the tonic and big drops > are gone and I know something about the diet worked. She was put on > 1:1 but she is still crying. It seems like if she doesn't eat every 2 > - 2.5 hrs. she has this altered state. She is showing no ketones. Any > suggestions? There always was a suspicion of a metabolic disorder - Do > any of you know which metabolic disorders would be worse on the diet? > Maureen > Mom to Bryn 5 900 calories 1:1 IS " 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 May 27, 2004 Report Share Posted May 27, 2004 Maureen- Ohhhh, so sorry for your troubles, your hands have been full. I was reading your post as I myself was eating strawberries and soymilk, made me smile a little. I was thinking about the end of your post when you said the Doc's think it could be a metabolic disorder, and I have a few questions. How old is Bryn? How has her glucose been? Are there any other characteristics that stick out about Bryn? for example in her lab work, troubles you had in the past or currently have ect. ? The more symptoms you and your doc's can gather the better chance you have of finding out which if any metabolic disorder she may have. , mom to Ethan worse on diet > > Hi. My daughter Bryn has been on the diet since 4/19. We are currently > weaning off. She had a hard initiation in the hospital ( acidotic) - > but blood and urine were normal upon discharge and have been normal > since ( only some RBC in urine). She was never herself on the diet. > Speech immediately took a nose dive - typically 20-35 words in speech > therapy - on the diet she was saying 5-8 words in speech therapy. Her > personality was gone - low energy disconnected. Medications were > reduced while in hospital and then again during our 5+ weeks on the > diet. Horrible screaming began at the end of our first week home. Diet > was manipulated to 3:1 - screaming continued. The screaming at first > was not every day - we would have one or two days a week with no > screaming and then days when she would be upset for an hour or so - > escalating to days when she screamed for 5+ hours. Doctors were no > help. I gave up last Thursday when I was flying from NY to San Diego > and she screamed until that night. The only thing that soothed her was > drinking. I spoke to the dietician on Thursday and went to unlimited > fluids. With this change she was wonderful. Personality back no > crying. This did not last. Ketones were less (small to moderate) on > strips so we lowered the ratio. Crying is back. Giving some juice > helped somewhat. She comes alive. Ketones were small to moderate and > crying was still happening. Even between the crying her personality is > gone. Tuesday I threw in the towel and fed mostly keto food but added > her soy milk and some more strawberries. She woke up. I would like to > know if possible what any of this means. She seems to need more carbs > and more calories. Weirdly throughout the entire time on the diet she > has gained weight. Calories were reduced. This past week with the > unlimited drinking she has become very bloated + 3lbs. People are > asking me if she is on steroids. We are seeing the Dr. (ped) today but > you know how that goes. Neurologist is saying he has never heard of > the diet making anyone worse? The sad thing is the tonic and big drops > are gone and I know something about the diet worked. She was put on > 1:1 but she is still crying. It seems like if she doesn't eat every 2 > - 2.5 hrs. she has this altered state. She is showing no ketones. Any > suggestions? There always was a suspicion of a metabolic disorder - Do > any of you know which metabolic disorders would be worse on the diet? > Maureen > Mom to Bryn 5 900 calories 1:1 IS " 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 May 27, 2004 Report Share Posted May 27, 2004 Hi Maureen, did you add any new foods that Bryn could have been intolerant to? We had/have the screaming as well, definitely medical initially but now very obv aware and it is mainly behavioural, we are working on the screaming with a clinical psy. Nicola, mum to 7 1/2y, on keto diet for 6m , off all meds as from TODAY!still having myoclonics Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2004 Report Share Posted May 28, 2004 Hi Nicola, I didn't change any foods. Yesterday was the first day we had no screaming. We went from 3:1 to 1:1 to establish tolerance. She is so alert and verbal. I feel like she's just getting something that was missing - More carbs?? I don't know. She is actually better than she was pre-diet. We are having more seizures but I guess that is to be expected. She started to cry while eating yesterday but stopped - I'm wondering if it is deprivation. I broke the meals up into 5 meals and on 1:1 it is more volume. Thanks for the reply. Maureen > Hi Maureen, > did you add any new foods that Bryn could have been intolerant to? > We had/have the screaming as well, definitely medical initially but > now very > obv aware and it is mainly behavioural, we are working on the > screaming with > a clinical psy. > Nicola, mum to 7 1/2y, on keto diet for 6m , off all meds as > from > TODAY!still having myoclonics > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2004 Report Share Posted May 28, 2004 hi Maureen, Matts worsened as well after we started to wean(3m into the diet), things improved only 2 m later , it was an awful time and I did a lot of praying and nearly gave him more medication. Tomorrow is his first drug free day, we are 6m into the diet and the seizures are less. We still have a lot of work to do.Hope you do whats right for you, Nicola Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2004 Report Share Posted May 28, 2004 hi Maureen, Matts worsened as well after we started to wean(3m into the diet), things improved only 2 m later , it was an awful time and I did a lot of praying and nearly gave him more medication. Tomorrow is his first drug free day, we are 6m into the diet and the seizures are less. We still have a lot of work to do.Hope you do whats right for you, Nicola Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2004 Report Share Posted May 28, 2004 hi Maureen, Matts worsened as well after we started to wean(3m into the diet), things improved only 2 m later , it was an awful time and I did a lot of praying and nearly gave him more medication. Tomorrow is his first drug free day, we are 6m into the diet and the seizures are less. We still have a lot of work to do.Hope you do whats right for you, Nicola Quote Link to comment Share on other sites More sharing options...
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