Guest guest Posted August 27, 2002 Report Share Posted August 27, 2002 In a message dated 8/26/02 9:52:39 PM Central Daylight Time, ajb@... writes: > I'm sorry for venting so much. > - Bivens > Don't be , my heart goes out to you! Dig in your heels & don't take no for an answer in dealing with the Dr.'s We'll be praying heavily that her situation will be resolved. <hugs> Let us know what happens, K. Cody Colton Age 7 Strawberry Plains, TN. Perventricular Bipartial Nodular Heterophia & Polymicrogyria Meds. 200mg. of Dilantin & 100 mg. of Topomax per day. Balance & fine motor issues. Seizures, respiratory system shuts down to 2 - 8 breaths per minute. Loves playing with his trains, spending the night with grandparents, videos & giving all his kisses to his mother & being out when dad comes to get some. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2002 Report Share Posted August 27, 2002 Don't let the doctors talk you into anything you don't want. Hang in there. Baby and I will say prayers for Miss . Why are they insisting she get a G-tube for the diet? Many people are on the diet without that. --- Bivens wrote: > I just had down to Miami 10 days ago because > her seizures were worse. > Today she was airlifted back there. 21 seizures > today (as of 8 pm- - who knows how many more through > the night will occur.) I'm so frustrated. My local > pediatric neurologist has told me there really is > nothing else he can do to help . Her condition > is a " tragedy. " I left Miami before because they > insisted on a g-tube to put on the diet. > Today I finally had gotten a hold of 's Hopkins > (I've been trying for a week); they probably would > have done her without the tube if I could just hang > tight until they had an opening in October. > Needless to say, we are not going to make it to > October, so my baby (who eats great) will probably > come back with a g-tube. > Whoever sent in that essay about " Holland, " I want > you to know I hate it here. It doesn't matter to me > how nice people are, the camaraderie of other people > in Holland, etc. I'm tired of watching my daughter > turn blue 21 times in a day while a seizure attacks > her little body. I'm tired of watching her > personality wane day by day until my cute, laughing, > attention seeking baby can't be bothered to even > smile anymore. I'm especially tired of being at the > mercy of a medical community who refuse to > communicate and prefer protocol to patient service. > No offense to the list. I just don't like where > this condition has taken us. I even think it might > be better if had shown no promise from the > beginning. This rollercoaster ride of intermittent > periods of alertness and wellness followed by > horrible seizures, hospitalizations, and a > merry-go-round of drugs I can't stand. > I'm sorry for venting so much. > - Bivens > mother of 16 months old > with her Daddy in Miami > > > [Non-text portions of this message have been > removed] > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2002 Report Share Posted August 27, 2002 , the reason they wanted the tube is that they do a swallow study for any potential patient of the ketogenic diet at Miami. On the study she showed some laryngeal penetration with no aspiration. Their concern is microaspiration of a diet with such a high fat content. Right now they are planning on starting the diet when she's well enough. She currently is on a ventilator in Miami still seizing while on Ativan and Fentanyl. Their next step is to put her into a complete coma to stop the seizures and then try to wake her back up. - Bivens mother of , 16 months old Re: back in hospital Don't let the doctors talk you into anything you don't want. Hang in there. Baby and I will say prayers for Miss . Why are they insisting she get a G-tube for the diet? Many people are on the diet without that. --- Bivens wrote: > I just had down to Miami 10 days ago because > her seizures were worse. > Today she was airlifted back there. 21 seizures > today (as of 8 pm- - who knows how many more through > the night will occur.) I'm so frustrated. My local > pediatric neurologist has told me there really is > nothing else he can do to help . Her condition > is a " tragedy. " I left Miami before because they > insisted on a g-tube to put on the diet. > Today I finally had gotten a hold of 's Hopkins > (I've been trying for a week); they probably would > have done her without the tube if I could just hang > tight until they had an opening in October. > Needless to say, we are not going to make it to > October, so my baby (who eats great) will probably > come back with a g-tube. > Whoever sent in that essay about " Holland, " I want > you to know I hate it here. It doesn't matter to me > how nice people are, the camaraderie of other people > in Holland, etc. I'm tired of watching my daughter > turn blue 21 times in a day while a seizure attacks > her little body. I'm tired of watching her > personality wane day by day until my cute, laughing, > attention seeking baby can't be bothered to even > smile anymore. I'm especially tired of being at the > mercy of a medical community who refuse to > communicate and prefer protocol to patient service. > No offense to the list. I just don't like where > this condition has taken us. I even think it might > be better if had shown no promise from the > beginning. This rollercoaster ride of intermittent > periods of alertness and wellness followed by > horrible seizures, hospitalizations, and a > merry-go-round of drugs I can't stand. > I'm sorry for venting so much. > - Bivens > mother of 16 months old > with her Daddy in Miami > > > [Non-text portions of this message have been > removed] > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2002 Report Share Posted August 27, 2002 , the reason they wanted the tube is that they do a swallow study for any potential patient of the ketogenic diet at Miami. On the study she showed some laryngeal penetration with no aspiration. Their concern is microaspiration of a diet with such a high fat content. Right now they are planning on starting the diet when she's well enough. She currently is on a ventilator in Miami still seizing while on Ativan and Fentanyl. Their next step is to put her into a complete coma to stop the seizures and then try to wake her back up. - Bivens mother of , 16 months old Re: back in hospital Don't let the doctors talk you into anything you don't want. Hang in there. Baby and I will say prayers for Miss . Why are they insisting she get a G-tube for the diet? Many people are on the diet without that. --- Bivens wrote: > I just had down to Miami 10 days ago because > her seizures were worse. > Today she was airlifted back there. 21 seizures > today (as of 8 pm- - who knows how many more through > the night will occur.) I'm so frustrated. My local > pediatric neurologist has told me there really is > nothing else he can do to help . Her condition > is a " tragedy. " I left Miami before because they > insisted on a g-tube to put on the diet. > Today I finally had gotten a hold of 's Hopkins > (I've been trying for a week); they probably would > have done her without the tube if I could just hang > tight until they had an opening in October. > Needless to say, we are not going to make it to > October, so my baby (who eats great) will probably > come back with a g-tube. > Whoever sent in that essay about " Holland, " I want > you to know I hate it here. It doesn't matter to me > how nice people are, the camaraderie of other people > in Holland, etc. I'm tired of watching my daughter > turn blue 21 times in a day while a seizure attacks > her little body. I'm tired of watching her > personality wane day by day until my cute, laughing, > attention seeking baby can't be bothered to even > smile anymore. I'm especially tired of being at the > mercy of a medical community who refuse to > communicate and prefer protocol to patient service. > No offense to the list. I just don't like where > this condition has taken us. I even think it might > be better if had shown no promise from the > beginning. This rollercoaster ride of intermittent > periods of alertness and wellness followed by > horrible seizures, hospitalizations, and a > merry-go-round of drugs I can't stand. > I'm sorry for venting so much. > - Bivens > mother of 16 months old > with her Daddy in Miami > > > [Non-text portions of this message have been > removed] > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2002 Report Share Posted August 27, 2002 Dear I totally understand the sentiments you expressed at the end of your post yesterday. I think that the rollercoaster of emotions is so much more difficult to bear than when things are going along badly. For me, when times are tough, it seems that I have mind-set which gets me through it, although I am drained by it, but the constant change between good patches and bad ones is mental torture, never knowing what is around the next corner for my little Hannah. I too have wondered if things would have been better if Hannah had never shown any progress, as it makes the hard times for her so much more heartbreaking. This is not a nice feeling to have, but they are however very real, and it saddens me greatly to think that others are experiencing this too. I just wanted to say that I empathize +++ and hope that, in some way, the knowledge that you are not alone in this will help. Not much, I know, but sometimes it is the little things which can be the biggest encouragement. About the diet you mentioned....I assume you meant the ketogenic diet for seizures? (sorry if you have covered this recently, I havent been responding to emails much for a couple of weeks) If so, I am wondering if you could start her on the road to ketosis yourself at home, by removing some carbohydrates from her meals and offering a little more fat, such as cream and mayo etc. The keto diet email group has a number of parents who have " started " the diet at home and gradually weaned onto it without hospitalisation, and saw some improvement in seizures rather quickly. Just wondered if this might buy you some time till s Hopkins can fit you in during October? You could join the group and gets lots of info from them before starting, and they would see you through the time at least until you started with a keto team at JH. Sorry if all this is irrelevant by now, but I couldnt help thinking there might be a way around this " protocol " that you are caught up in. Hugs to you and to your darling (Hannah's mum, Australia - but also stuck in Holland against my will) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2002 Report Share Posted August 27, 2002 Dear I totally understand the sentiments you expressed at the end of your post yesterday. I think that the rollercoaster of emotions is so much more difficult to bear than when things are going along badly. For me, when times are tough, it seems that I have mind-set which gets me through it, although I am drained by it, but the constant change between good patches and bad ones is mental torture, never knowing what is around the next corner for my little Hannah. I too have wondered if things would have been better if Hannah had never shown any progress, as it makes the hard times for her so much more heartbreaking. This is not a nice feeling to have, but they are however very real, and it saddens me greatly to think that others are experiencing this too. I just wanted to say that I empathize +++ and hope that, in some way, the knowledge that you are not alone in this will help. Not much, I know, but sometimes it is the little things which can be the biggest encouragement. About the diet you mentioned....I assume you meant the ketogenic diet for seizures? (sorry if you have covered this recently, I havent been responding to emails much for a couple of weeks) If so, I am wondering if you could start her on the road to ketosis yourself at home, by removing some carbohydrates from her meals and offering a little more fat, such as cream and mayo etc. The keto diet email group has a number of parents who have " started " the diet at home and gradually weaned onto it without hospitalisation, and saw some improvement in seizures rather quickly. Just wondered if this might buy you some time till s Hopkins can fit you in during October? You could join the group and gets lots of info from them before starting, and they would see you through the time at least until you started with a keto team at JH. Sorry if all this is irrelevant by now, but I couldnt help thinking there might be a way around this " protocol " that you are caught up in. Hugs to you and to your darling (Hannah's mum, Australia - but also stuck in Holland against my will) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2002 Report Share Posted August 27, 2002 , I am so sorry that things are so hard for you right know. Try to hang in there. When it comes to care just be forceful and hold your ground. Take Care of yourself, and Kennedy(3yrs.,pmg) > >Reply-To: polymicrogyria >To: <polymicrogyria > >Subject: back in hospital >Date: Mon, 26 Aug 2002 22:50:59 -0400 > >I just had down to Miami 10 days ago because her seizures were worse. >Today she was airlifted back there. 21 seizures today (as of 8 pm- - who >knows how many more through the night will occur.) I'm so frustrated. My >local pediatric neurologist has told me there really is nothing else he can >do to help . Her condition is a " tragedy. " I left Miami before >because they insisted on a g-tube to put on the diet. Today I >finally had gotten a hold of 's Hopkins (I've been trying for a week); >they probably would have done her without the tube if I could just hang >tight until they had an opening in October. Needless to say, we are not >going to make it to October, so my baby (who eats great) will probably come >back with a g-tube. >Whoever sent in that essay about " Holland, " I want you to know I hate it >here. It doesn't matter to me how nice people are, the camaraderie of >other people in Holland, etc. I'm tired of watching my daughter turn blue >21 times in a day while a seizure attacks her little body. I'm tired of >watching her personality wane day by day until my cute, laughing, attention >seeking baby can't be bothered to even smile anymore. I'm especially tired >of being at the mercy of a medical community who refuse to communicate and >prefer protocol to patient service. No offense to the list. I just don't >like where this condition has taken us. I even think it might be better if > had shown no promise from the beginning. This rollercoaster ride of >intermittent periods of alertness and wellness followed by horrible >seizures, hospitalizations, and a merry-go-round of drugs I can't stand. >I'm sorry for venting so much. >- Bivens >mother of 16 months old >with her Daddy in Miami > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2002 Report Share Posted August 27, 2002 , I am so sorry that things are so hard for you right know. Try to hang in there. When it comes to care just be forceful and hold your ground. Take Care of yourself, and Kennedy(3yrs.,pmg) > >Reply-To: polymicrogyria >To: <polymicrogyria > >Subject: back in hospital >Date: Mon, 26 Aug 2002 22:50:59 -0400 > >I just had down to Miami 10 days ago because her seizures were worse. >Today she was airlifted back there. 21 seizures today (as of 8 pm- - who >knows how many more through the night will occur.) I'm so frustrated. My >local pediatric neurologist has told me there really is nothing else he can >do to help . Her condition is a " tragedy. " I left Miami before >because they insisted on a g-tube to put on the diet. Today I >finally had gotten a hold of 's Hopkins (I've been trying for a week); >they probably would have done her without the tube if I could just hang >tight until they had an opening in October. Needless to say, we are not >going to make it to October, so my baby (who eats great) will probably come >back with a g-tube. >Whoever sent in that essay about " Holland, " I want you to know I hate it >here. It doesn't matter to me how nice people are, the camaraderie of >other people in Holland, etc. I'm tired of watching my daughter turn blue >21 times in a day while a seizure attacks her little body. I'm tired of >watching her personality wane day by day until my cute, laughing, attention >seeking baby can't be bothered to even smile anymore. I'm especially tired >of being at the mercy of a medical community who refuse to communicate and >prefer protocol to patient service. No offense to the list. I just don't >like where this condition has taken us. I even think it might be better if > had shown no promise from the beginning. This rollercoaster ride of >intermittent periods of alertness and wellness followed by horrible >seizures, hospitalizations, and a merry-go-round of drugs I can't stand. >I'm sorry for venting so much. >- Bivens >mother of 16 months old >with her Daddy in Miami > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2002 Report Share Posted August 27, 2002 Thanks , I appreciate your concern when I know how much you and your family continue to endure. Miami is starting on the ketogenic diet tomorrow via a nasogastric tube (because she is on the ventilator and can not eat right now). Then it sounds like if the I get back is the same I sent in, they are going to reluctantly consider the g-tube. I hope the diet helps! My expectations are not very high though. More than about 3 seizures a day stops her. She won't play, smile, or do any of the things that make her who she is. If they can't control them to that level, then we have accomplished very little. Time will tell. All my best to you and your family, Bivens,FL Re: back in hospital Dear I totally understand the sentiments you expressed at the end of your post yesterday. I think that the rollercoaster of emotions is so much more difficult to bear than when things are going along badly. For me, when times are tough, it seems that I have mind-set which gets me through it, although I am drained by it, but the constant change between good patches and bad ones is mental torture, never knowing what is around the next corner for my little Hannah. I too have wondered if things would have been better if Hannah had never shown any progress, as it makes the hard times for her so much more heartbreaking. This is not a nice feeling to have, but they are however very real, and it saddens me greatly to think that others are experiencing this too. I just wanted to say that I empathize +++ and hope that, in some way, the knowledge that you are not alone in this will help. Not much, I know, but sometimes it is the little things which can be the biggest encouragement. About the diet you mentioned....I assume you meant the ketogenic diet for seizures? (sorry if you have covered this recently, I havent been responding to emails much for a couple of weeks) If so, I am wondering if you could start her on the road to ketosis yourself at home, by removing some carbohydrates from her meals and offering a little more fat, such as cream and mayo etc. The keto diet email group has a number of parents who have " started " the diet at home and gradually weaned onto it without hospitalisation, and saw some improvement in seizures rather quickly. Just wondered if this might buy you some time till s Hopkins can fit you in during October? You could join the group and gets lots of info from them before starting, and they would see you through the time at least until you started with a keto team at JH. Sorry if all this is irrelevant by now, but I couldnt help thinking there might be a way around this " protocol " that you are caught up in. Hugs to you and to your darling (Hannah's mum, Australia - but also stuck in Holland against my will) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2002 Report Share Posted August 27, 2002 Thanks , I appreciate your concern when I know how much you and your family continue to endure. Miami is starting on the ketogenic diet tomorrow via a nasogastric tube (because she is on the ventilator and can not eat right now). Then it sounds like if the I get back is the same I sent in, they are going to reluctantly consider the g-tube. I hope the diet helps! My expectations are not very high though. More than about 3 seizures a day stops her. She won't play, smile, or do any of the things that make her who she is. If they can't control them to that level, then we have accomplished very little. Time will tell. All my best to you and your family, Bivens,FL Re: back in hospital Dear I totally understand the sentiments you expressed at the end of your post yesterday. I think that the rollercoaster of emotions is so much more difficult to bear than when things are going along badly. For me, when times are tough, it seems that I have mind-set which gets me through it, although I am drained by it, but the constant change between good patches and bad ones is mental torture, never knowing what is around the next corner for my little Hannah. I too have wondered if things would have been better if Hannah had never shown any progress, as it makes the hard times for her so much more heartbreaking. This is not a nice feeling to have, but they are however very real, and it saddens me greatly to think that others are experiencing this too. I just wanted to say that I empathize +++ and hope that, in some way, the knowledge that you are not alone in this will help. Not much, I know, but sometimes it is the little things which can be the biggest encouragement. About the diet you mentioned....I assume you meant the ketogenic diet for seizures? (sorry if you have covered this recently, I havent been responding to emails much for a couple of weeks) If so, I am wondering if you could start her on the road to ketosis yourself at home, by removing some carbohydrates from her meals and offering a little more fat, such as cream and mayo etc. The keto diet email group has a number of parents who have " started " the diet at home and gradually weaned onto it without hospitalisation, and saw some improvement in seizures rather quickly. Just wondered if this might buy you some time till s Hopkins can fit you in during October? You could join the group and gets lots of info from them before starting, and they would see you through the time at least until you started with a keto team at JH. Sorry if all this is irrelevant by now, but I couldnt help thinking there might be a way around this " protocol " that you are caught up in. Hugs to you and to your darling (Hannah's mum, Australia - but also stuck in Holland against my will) Quote Link to comment Share on other sites More sharing options...
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