Guest guest Posted August 9, 2004 Report Share Posted August 9, 2004 I have a sad update on my son, Gavin. I just joined this group, but as of Saturday my son was taken off the KGD diet. He had only been on it for ten days. We just got home from the hospital again. His ketones got very high, then he was vomiting and couldn't keep anything down. He went into acidosis again and this time it badly effected his kidneys, and they weren't working. He is doing better now, but we are once again battling seizures. I had such hope for this, as it had made a big difference in just the short time he was on it. I would like to thank all of you for you advise. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2004 Report Share Posted August 10, 2004 Your situation is not unusual. The diet can be hell at the beginning. Obviously some mistakes were made with your sons care. This can easily happen as each child reacts differently to the diet and it is a huge stress on the body. I don't think that I could be on the diet myself. It is typical for vomiting to cause dehydration and severe stress on the body and then the diet has to be stopped and the child stabilized. When you start the diet again you will hopefully have learned from this experience and be able to keep things better controlled and the diet will be a great success. You might consider using a lower ratio and more smaller meals and of course watch the fluids with any vomiting. Did you see a decrease in seizures with the diet? Bill emily00212001 wrote: > I have a sad update on my son, Gavin. I just joined this group, but > as of Saturday my son was taken off the KGD diet. He had only been > on it for ten days. We just got home from the hospital again. His > ketones got very high, then he was vomiting and couldn't keep > anything down. He went into acidosis again and this time it badly > effected his kidneys, and they weren't working. He is doing better > now, but we are once again battling seizures. I had such hope for > this, as it had made a big difference in just the short time he was > on it. I would like to thank all of you for you advise. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2004 Report Share Posted August 12, 2004 Hi Bill- Yes, the diet had helped my sons seizures quite a bit in only 2 weeks. I was in contact with his dietition everyday, but just couldn't seem to get him any better. I don't know what I was doing wrong or I couls have done differently. Now his neuro is saying no more, that he wouldn't even consider putting him back on the diet. I am considering getting a second opinion, what do you think? Thanks for your input. - In ketogenic , Bill Barber wrote: > Your situation is not unusual. The diet can be hell at the beginning. > Obviously some mistakes were made with your sons care. This can easily > happen as each child reacts differently to the diet and it is a huge > stress on the body. I don't think that I could be on the diet myself. It > is typical for vomiting to cause dehydration and severe stress on the > body and then the diet has to be stopped and the child stabilized. When > you start the diet again you will hopefully have learned from this > experience and be able to keep things better controlled and the diet > will be a great success. You might consider using a lower ratio and more > smaller meals and of course watch the fluids with any vomiting. > > Did you see a decrease in seizures with the diet? > > Bill > > emily00212001 wrote: > > I have a sad update on my son, Gavin. I just joined this group, but > > as of Saturday my son was taken off the KGD diet. He had only been > > on it for ten days. We just got home from the hospital again. His > > ketones got very high, then he was vomiting and couldn't keep > > anything down. He went into acidosis again and this time it badly > > effected his kidneys, and they weren't working. He is doing better > > now, but we are once again battling seizures. I had such hope for > > this, as it had made a big difference in just the short time he was > > on it. I would like to thank all of you for you advise. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2004 Report Share Posted August 13, 2004 , I am not a medical person, but a second opinion is always recommended. Certainly, the diet can be dangerous and has to be monitored very closely. There are many things that can go wrong even when the person is healthy and adapting to the changes that the diet brings on. AED's can make things worse. It's not that you were doing anything wrong. You might be able to do things a bit differently based on what you have learned from your first experience. Most neuros know very little about nutrition or the diet and nobody knows how the diet works. Good luck, Bill emily00212001 wrote: > Hi Bill- > Yes, the diet had helped my sons seizures quite a bit in only 2 > weeks. I was in contact with his dietition everyday, but just > couldn't seem to get him any better. I don't know what I was doing > wrong or I couls have done differently. Now his neuro is saying no > more, that he wouldn't even consider putting him back on the diet. I > am considering getting a second opinion, what do you think? Thanks > for your input. > > > > > > > - In ketogenic , Bill Barber wrote: > >>Your situation is not unusual. The diet can be hell at the > > beginning. > >>Obviously some mistakes were made with your sons care. This can > > easily > >>happen as each child reacts differently to the diet and it is a > > huge > >>stress on the body. I don't think that I could be on the diet > > myself. It > >>is typical for vomiting to cause dehydration and severe stress on > > the > >>body and then the diet has to be stopped and the child stabilized. > > When > >>you start the diet again you will hopefully have learned from this >>experience and be able to keep things better controlled and the > > diet > >>will be a great success. You might consider using a lower ratio and > > more > >> smaller meals and of course watch the fluids with any vomiting. >> >>Did you see a decrease in seizures with the diet? >> >>Bill >> >>emily00212001 wrote: >> >>>I have a sad update on my son, Gavin. I just joined this group, >> > but > >>>as of Saturday my son was taken off the KGD diet. He had only >> > been > >>>on it for ten days. We just got home from the hospital again. >> > His > >>>ketones got very high, then he was vomiting and couldn't keep >>>anything down. He went into acidosis again and this time it >> > badly > >>>effected his kidneys, and they weren't working. He is doing >> > better > >>>now, but we are once again battling seizures. I had such hope >> > for > >>>this, as it had made a big difference in just the short time he >> > was > >>>on it. I would like to thank all of you for you advise. >>> >>> >>> >>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2006 Report Share Posted September 5, 2006 --I want you to know that I just prayed for your sweet son and family. God hears you and feels your pain. I know that it is hard to imagine why things happen, but allow it to draw you and your family even closer to Him and do not let the suffering be in vain. Allow God to do his work for whatever reason. Be strong, have faith and whatever you do RESIST THAT URGE TO CRAWL UP INTO A BALL IN THE CORNER OF YOUR ROOM AND NEVER COME OUT! It does no one any good. I know this because I speak from experience. I have suffered and continue to suffer with my child on her illnesses. Let God hold your hand and protect you in the fire. He never promised us a pain free life, but He did promise us that He'd never leave us. Okay, enough preaching to you. I just came from a Beth Bible study, so I am overflowing for God right now. Yeah God! Bless your son! - In SillyYaks , kerri bren wrote: > > Hi all - I know I've promised to contact several of you (especially ), but a family crisis has kept me very busy. Our 17 year old son - who looks the very picture of health - was officially diagnosed with Burkitt's Lymphoma last Thursday. We were in the oncology center at Denver's Children's Hospital this weekend where he had surgery and many tests done. We're home for several days and will return to the hospital on Wednesday for him to begin a difficult 6 month chemotherapy regiment. Despite the rough treatment, this does have a 90% cure rate - thank goodness. I'll be in touch as soon as things settle down. Please send all of your good thoughts my 's way. Kerri (p.s. This is not the kind of lymphoma associated with celiac disease - his celiac workup was negative and the oncologists assure me that Burkitt's is not caused by celiac disease.) > > --------------------------------- > Stay in the know. Pulse on the new Yahoo.com. Check it out. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2006 Report Share Posted September 7, 2006 Dear Kerri, I'm sending positive thoughts to you, your dear & your family. I will pray for a speedy recovery. Michele - In SillyYaks@yahoogrou ps.com, kerri bren wrote:>> Hi all - I know I've promised to contact several of you (especially ), but a family crisis has kept me very busy. Our 17 year old son - who looks the very picture of health - was officially diagnosed with Burkitt's Lymphoma last Thursday. We were in the oncology center at Denver's Children's Hospital this weekend where he had surgery and many tests done. We're home for several days and will return to the hospital on Wednesday for him to begin a difficult 6 month chemotherapy regiment. Despite the rough treatment, this does have a 90% cure rate - thank goodness. I'll be in touch as soon as things settle down. Please send all of your good thoughts my 's way. Kerri (p.s. This is not the kind of lymphoma associated with celiac disease - his celiac workup was negative and the oncologists assure me that Burkitt's is not caused by celiac disease.) > > ------------ --------- --------- ---> Stay in the know. Pulse on the new Yahoo.com. Check it out.> How low will we go? Check out Yahoo! Messenger’s low PC-to-Phone call rates. Quote Link to comment Share on other sites More sharing options...
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