Guest guest Posted January 28, 2006 Report Share Posted January 28, 2006 Hey, Sharon Are you also in the BIA4KIDS group? You sound familiar. I'm praying for you and your little guy to make significant progress on this diet. It has been helpful for my son. Agape, SHARON CRUIKSHANK mag5jas2@...> wrote: It sounds like you are getting him off to a healthy start. I remember once having heard of a diet that would induce ketosis in most people - very high fat - but helps forms of epilepsy. Have you heard of this? take care, Fay Fay, the ketogenic diet is the epilepsy treatment you are thinking of. While it can be very effective, it also can have a lot of nasty side effects and is not a " healthy " diet. That is why I am here, as I am hoping that SCD will help and avoid going on the keto. I posted about the SCD on the infantilespasms web group so that is why is here. , given you are just starting to feed solids, I would try following the guidelines for introducing SCD foods and avoid the illegals - wheat, dairy, starch, soy and sugar. I've been feeding SCD " Stage 1 " for a few days now with the exception of his bottle and his poops have turned a lovely light green (no, I won't post pictures!), but I believe this means that the " die off " phase is starting. I met with the keto nurse yesterday. will likely start the Keto in April, so I have 2 months to give SCD a try. The protocol they use for starting the diet is to use RCF (Ross Carbohydrate Free) formula (soy-based), microlipids and polycose for 2-3 months via g-tube - no oral feeds. I'm not too keen on this as eats/drinks orally but she said that they've had the most success with this protocol. After 2-3 months, assuming he is stable and the diet is working for him, we could start with oral keto meals (about 80% fat, 10% protien, 10% carbs). In the meantime, I need to fatten him up as he has dropped off the weight chart, so I'm going to do 50% carbs, 30% fat and 20% protein with SCD-legal foods. Wish me luck, Sharon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2006 Report Share Posted January 28, 2006 Hey, Sharon Are you also in the BIA4KIDS group? You sound familiar. I'm praying for you and your little guy to make significant progress on this diet. It has been helpful for my son. Agape, SHARON CRUIKSHANK mag5jas2@...> wrote: It sounds like you are getting him off to a healthy start. I remember once having heard of a diet that would induce ketosis in most people - very high fat - but helps forms of epilepsy. Have you heard of this? take care, Fay Fay, the ketogenic diet is the epilepsy treatment you are thinking of. While it can be very effective, it also can have a lot of nasty side effects and is not a " healthy " diet. That is why I am here, as I am hoping that SCD will help and avoid going on the keto. I posted about the SCD on the infantilespasms web group so that is why is here. , given you are just starting to feed solids, I would try following the guidelines for introducing SCD foods and avoid the illegals - wheat, dairy, starch, soy and sugar. I've been feeding SCD " Stage 1 " for a few days now with the exception of his bottle and his poops have turned a lovely light green (no, I won't post pictures!), but I believe this means that the " die off " phase is starting. I met with the keto nurse yesterday. will likely start the Keto in April, so I have 2 months to give SCD a try. The protocol they use for starting the diet is to use RCF (Ross Carbohydrate Free) formula (soy-based), microlipids and polycose for 2-3 months via g-tube - no oral feeds. I'm not too keen on this as eats/drinks orally but she said that they've had the most success with this protocol. After 2-3 months, assuming he is stable and the diet is working for him, we could start with oral keto meals (about 80% fat, 10% protien, 10% carbs). In the meantime, I need to fatten him up as he has dropped off the weight chart, so I'm going to do 50% carbs, 30% fat and 20% protein with SCD-legal foods. Wish me luck, Sharon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2006 Report Share Posted January 28, 2006 Thanks Agape, yes I am on the BIA4KIDS group too. only had one small cluster of seizures today vs. 3-4, so along with the poop, I am very happy. Re: To Fay and Hey, Sharon Are you also in the BIA4KIDS group? You sound familiar. I'm praying for you and your little guy to make significant progress on this diet. It has been helpful for my son. Agape, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2006 Report Share Posted January 28, 2006 I know there is a member from this list (may not be currently posting) who had her daughter on the keto diet for a severe seizure disorder. She had to stop because of the side effects and found that SCD was as, if not more, effective with seizure control. Maybe someone here can remember who it was? I don't know if they would be willing to share their experience but it might be helpful. Robbie To Fay and > It sounds like you are getting him off to a healthy start. I remember > once having heard of a diet that would induce ketosis in most people - > very high fat - but helps forms of epilepsy. Have you heard of this? > take > care, Fay > > Fay, the ketogenic diet is the epilepsy treatment you are thinking of. > While it can be very effective, it also can have a lot of nasty side > effects and is not a " healthy " diet. That is why I am here, as I am > hoping that SCD will help and avoid going on the keto. I posted > about the SCD on the infantilespasms web group so that is why is > here. , given you are just starting to feed solids, I would try > following the guidelines for introducing SCD foods and avoid the > illegals - wheat, dairy, starch, soy and sugar. I've been feeding > SCD " Stage 1 " for a few days now with the exception of his bottle and > his poops have turned a lovely light green (no, I won't post pictures!), > but I believe this means that the " die off " phase is starting. > > I met with the keto nurse yesterday. will likely start the Keto in > April, so I have 2 months to give SCD a try. The protocol they use for > starting the diet is to use RCF (Ross Carbohydrate Free) formula > (soy-based), microlipids and polycose for 2-3 months via g-tube - no > oral feeds. I'm not too keen on this as eats/drinks orally but she > said that they've had the most success with this protocol. After 2-3 > months, assuming he is stable and the diet is working for him, we could > start with oral keto meals (about 80% fat, 10% protien, 10% carbs). In > the meantime, I need to fatten him up as he has dropped off the weight > chart, so I'm going to do 50% carbs, 30% fat and 20% protein with > SCD-legal foods. > > Wish me luck, > Sharon > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2006 Report Share Posted January 28, 2006 I know there is a member from this list (may not be currently posting) who had her daughter on the keto diet for a severe seizure disorder. She had to stop because of the side effects and found that SCD was as, if not more, effective with seizure control. Maybe someone here can remember who it was? I don't know if they would be willing to share their experience but it might be helpful. Robbie To Fay and > It sounds like you are getting him off to a healthy start. I remember > once having heard of a diet that would induce ketosis in most people - > very high fat - but helps forms of epilepsy. Have you heard of this? > take > care, Fay > > Fay, the ketogenic diet is the epilepsy treatment you are thinking of. > While it can be very effective, it also can have a lot of nasty side > effects and is not a " healthy " diet. That is why I am here, as I am > hoping that SCD will help and avoid going on the keto. I posted > about the SCD on the infantilespasms web group so that is why is > here. , given you are just starting to feed solids, I would try > following the guidelines for introducing SCD foods and avoid the > illegals - wheat, dairy, starch, soy and sugar. I've been feeding > SCD " Stage 1 " for a few days now with the exception of his bottle and > his poops have turned a lovely light green (no, I won't post pictures!), > but I believe this means that the " die off " phase is starting. > > I met with the keto nurse yesterday. will likely start the Keto in > April, so I have 2 months to give SCD a try. The protocol they use for > starting the diet is to use RCF (Ross Carbohydrate Free) formula > (soy-based), microlipids and polycose for 2-3 months via g-tube - no > oral feeds. I'm not too keen on this as eats/drinks orally but she > said that they've had the most success with this protocol. After 2-3 > months, assuming he is stable and the diet is working for him, we could > start with oral keto meals (about 80% fat, 10% protien, 10% carbs). In > the meantime, I need to fatten him up as he has dropped off the weight > chart, so I'm going to do 50% carbs, 30% fat and 20% protein with > SCD-legal foods. > > Wish me luck, > Sharon > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2006 Report Share Posted January 28, 2006 I know there is a member from this list (may not be currently posting) who had her daughter on the keto diet for a severe seizure disorder. She had to stop because of the side effects and found that SCD was as, if not more, effective with seizure control. Maybe someone here can remember who it was? I don't know if they would be willing to share their experience but it might be helpful. Robbie To Fay and > It sounds like you are getting him off to a healthy start. I remember > once having heard of a diet that would induce ketosis in most people - > very high fat - but helps forms of epilepsy. Have you heard of this? > take > care, Fay > > Fay, the ketogenic diet is the epilepsy treatment you are thinking of. > While it can be very effective, it also can have a lot of nasty side > effects and is not a " healthy " diet. That is why I am here, as I am > hoping that SCD will help and avoid going on the keto. I posted > about the SCD on the infantilespasms web group so that is why is > here. , given you are just starting to feed solids, I would try > following the guidelines for introducing SCD foods and avoid the > illegals - wheat, dairy, starch, soy and sugar. I've been feeding > SCD " Stage 1 " for a few days now with the exception of his bottle and > his poops have turned a lovely light green (no, I won't post pictures!), > but I believe this means that the " die off " phase is starting. > > I met with the keto nurse yesterday. will likely start the Keto in > April, so I have 2 months to give SCD a try. The protocol they use for > starting the diet is to use RCF (Ross Carbohydrate Free) formula > (soy-based), microlipids and polycose for 2-3 months via g-tube - no > oral feeds. I'm not too keen on this as eats/drinks orally but she > said that they've had the most success with this protocol. After 2-3 > months, assuming he is stable and the diet is working for him, we could > start with oral keto meals (about 80% fat, 10% protien, 10% carbs). In > the meantime, I need to fatten him up as he has dropped off the weight > chart, so I'm going to do 50% carbs, 30% fat and 20% protein with > SCD-legal foods. > > Wish me luck, > Sharon > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2006 Report Share Posted January 28, 2006 Hello everyone, My name is Tom Coburn. I've bad CD over 9 years now, and I run a discussion forum called http://www.crohnsdaily.com where I give SCD and Crohn's Support Anyway, I've been on SCD for 3 years now, at one time I had symtoms pretty much from the throat on down, all my symtoms went away after the first 6 months or so on SCD, but then a year into SCD, a Fistula suddenly appeared out of " nowhere " trying to get it to go away for the last 2 years has been really trying.. 3 years now, and the Fistulas have now spread. I now have 3 external, and 1 internal Fistula. At first they looked like hemaroids, this internal one is hard to desribe, its umm, like a " hole " inside the rectal cavity somewhere, so as BM passes down thru the upper rectum, (its like a " leak " I guess would be the best way to describe it, a rectal leak) it " leaks " into both butt cheeks after every BM, so then I keep having surgery to drain the stuff out, but then it fills back up again and they have to " poke " it with a needle. Finally, they put a " seeton wire " in there until they can fix the Leak. THey tried to fix the Leak surgically by doing a procedure called a " Flap " (where they try to graf some skin over the hole to stop the leak) but it didn't work, so now there trying " Remicade " hoping that'll close up the Leak. I've had 2 Remicade infusions so far, and don't notice any difference so far, but it could be too early to tell who knows.. The infusions are $9,000 a shot! and my insurance covers maybe 80% of it, but thats it, so I owe the hospital 80% of $9,000 + the $1,500 hospital bill on top of that, for the last 2 infusions, which I have no clue at all how I'm going to pay for, but i don't know what else to do to stop this leak its painful beyond belief, you guys just can't immagine I've been fussing with it for 2 years now, some days spending literally " days " in the bathtub crying until the pain goes away, and at the same time trying to have enouch courage to stand up for 8 hours at work without screaming at the top of my lungs every day... Been dealing with this for 2 years now, and I swear, I will try anything right now, I don't care what, to get this leak to go away its worse then any pain I've ever experienced in my life, worse then the Cathetor, worse then the tube up the nose without novacane, its just beyond what I thought any human can tollerate pain wise, if nothing else, I could really use some prayer right about now. I just want to leak to close please take care, Tom Coburn (bubazoo) CD 9 years SCD 3 years webmaster: http://www.crohnsdaily.com Quote Link to comment Share on other sites More sharing options...
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