Guest guest Posted September 8, 2004 Report Share Posted September 8, 2004 I've been away a week or so, and what a pleasant surprise I've come home to. I quickly scanned recent postings, and forgive me if I am missing something, but the news of our kids seems to be particularly good the last few days. Stella, Langan, and even despite pneumonia, , are experiencing seizure free days lately. And , too, I think. Let me add Ethan to the list. School started for Ethan yesterday. Even last week I was dreading the start of school, fearing the worse, since he was still having 2- 3 'freezing' episodes each day. But he hasn't had any either yesterday or today, and almost as good, he is really excited about school, dashing off to be there. That has not happened since he restarted medication in 2nd grade (3 years ago.) His psychologist believes that perhaps resumming normal activity will be the best therapy for stopping these 'psuedo seizures,' and perhaps he is right. Looking back, I can kind of see how these things started. Initiating the diet and weaning medicine were so emotionally and physically tormoltuous (wish I could spell) that his brain just sort of 'checked out' at times. I reinforced these episodes by giving in and not making him do the things that triggered them. It is something his brain learned to do, and they are completely subconscious. We always noticed that when he was feeling good and happy, they didn't happen. Well, now he is feeling good and he is very happy and these episodes are not occuring. I think the big difference in his emotional well-being is that he is off those high doses of medication that made everything pertaining to school so difficult. As soon as we can schedule an IEP I think we'll say thank you and so long to his full time academic aid. I'm sure there are parents reading this who are in the middle of great struggles. If it helps, use our stories to keep the hope alive. I know there are no guarantees in life, but with this diet, there is every reason to hope! Thank you everyone for your wonderful support. I am thinking, praying and hoping for the best for evey single one of your kids. Langan, enjoy that Mcs meal, and think of Ethan when you eat a fry! Gretchen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2004 Report Share Posted September 9, 2004 Gretchen, What a wonderful, upbeat message. Thank you so much!! I am sooooo happy that Ethan is doing well! That is fabulous news! Please keep us posted. Even though we are techinically keto alumni now, I will always feel like a part of this family. And who knows if/when we'll give keto another shake down the road. Langan still hasn't been to Mc's- she slept through the time I had away from work yesterday afternoon- but we'll get there. We had our first family meal EVER last night and it was wonderful to be together. I know many parents manage to eat with their keto kids but it was too hard for her to see us eating and so we usually ate separately (my husband and I) while the other one watched Langan. Not really the kind of " togetherness " we wanted, but Langan was too little to understand about the keto meals and too much of a food lover not to complain. So last night we all ate the same meal, and it was really nice. So far, knock on wood, seizures have taken a break. Other than a possible partial late last week, it has been 9 days. They could rear their ugly head any day now, but for now we are just so thankful that she has the break from them. In the meantime, she is happier by the day, discovering the joys of foods she never got to try before (Nilla Wafers being her new favorite) and getting so strong that it amazes me when I think of what the acidosis did to her little body. I have this strange guilt about not measuring her meals any more, and I am still keeping my compulsive little list of everything she does from when she sleeps to when she poops to how much/what she eats and drinks. Some habits are hard to break.... Take care and hug sweet Ethan for me! , mom to Langan, 2 yrs old and keto kid from 11/03 to 9/7/04 but forever a keto kid at heart!! > I've been away a week or so, and what a pleasant surprise I've come > home to. I quickly scanned recent postings, and forgive me if I am > missing something, but the news of our kids seems to be particularly > good the last few days. Stella, Langan, and even despite pneumonia, > , are experiencing seizure free days lately. And , > too, I think. Let me add Ethan to the list. > School started for Ethan yesterday. Even last week I was dreading > the start of school, fearing the worse, since he was still having 2- > 3 'freezing' episodes each day. But he hasn't had any either > yesterday or today, and almost as good, he is really excited about > school, dashing off to be there. That has not happened since he > restarted medication in 2nd grade (3 years ago.) His psychologist > believes that perhaps resumming normal activity will be the best > therapy for stopping these 'psuedo seizures,' and perhaps he is > right. > Looking back, I can kind of see how these things started. > Initiating the diet and weaning medicine were so emotionally and > physically tormoltuous (wish I could spell) that his brain just sort > of 'checked out' at times. I reinforced these episodes by giving in > and not making him do the things that triggered them. It is > something his brain learned to do, and they are completely > subconscious. We always noticed that when he was feeling good and > happy, they didn't happen. Well, now he is feeling good and he is > very happy and these episodes are not occuring. I think the big > difference in his emotional well-being is that he is off those high > doses of medication that made everything pertaining to school so > difficult. As soon as we can schedule an IEP I think we'll say > thank you and so long to his full time academic aid. > I'm sure there are parents reading this who are in the middle of > great struggles. If it helps, use our stories to keep the hope > alive. I know there are no guarantees in life, but with this diet, > there is every reason to hope! > Thank you everyone for your wonderful support. I am thinking, > praying and hoping for the best for evey single one of your kids. > Langan, enjoy that Mcs meal, and think of Ethan when you > eat a fry! > Gretchen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2004 Report Share Posted September 9, 2004 Gretchen, What a wonderful, upbeat message. Thank you so much!! I am sooooo happy that Ethan is doing well! That is fabulous news! Please keep us posted. Even though we are techinically keto alumni now, I will always feel like a part of this family. And who knows if/when we'll give keto another shake down the road. Langan still hasn't been to Mc's- she slept through the time I had away from work yesterday afternoon- but we'll get there. We had our first family meal EVER last night and it was wonderful to be together. I know many parents manage to eat with their keto kids but it was too hard for her to see us eating and so we usually ate separately (my husband and I) while the other one watched Langan. Not really the kind of " togetherness " we wanted, but Langan was too little to understand about the keto meals and too much of a food lover not to complain. So last night we all ate the same meal, and it was really nice. So far, knock on wood, seizures have taken a break. Other than a possible partial late last week, it has been 9 days. They could rear their ugly head any day now, but for now we are just so thankful that she has the break from them. In the meantime, she is happier by the day, discovering the joys of foods she never got to try before (Nilla Wafers being her new favorite) and getting so strong that it amazes me when I think of what the acidosis did to her little body. I have this strange guilt about not measuring her meals any more, and I am still keeping my compulsive little list of everything she does from when she sleeps to when she poops to how much/what she eats and drinks. Some habits are hard to break.... Take care and hug sweet Ethan for me! , mom to Langan, 2 yrs old and keto kid from 11/03 to 9/7/04 but forever a keto kid at heart!! > I've been away a week or so, and what a pleasant surprise I've come > home to. I quickly scanned recent postings, and forgive me if I am > missing something, but the news of our kids seems to be particularly > good the last few days. Stella, Langan, and even despite pneumonia, > , are experiencing seizure free days lately. And , > too, I think. Let me add Ethan to the list. > School started for Ethan yesterday. Even last week I was dreading > the start of school, fearing the worse, since he was still having 2- > 3 'freezing' episodes each day. But he hasn't had any either > yesterday or today, and almost as good, he is really excited about > school, dashing off to be there. That has not happened since he > restarted medication in 2nd grade (3 years ago.) His psychologist > believes that perhaps resumming normal activity will be the best > therapy for stopping these 'psuedo seizures,' and perhaps he is > right. > Looking back, I can kind of see how these things started. > Initiating the diet and weaning medicine were so emotionally and > physically tormoltuous (wish I could spell) that his brain just sort > of 'checked out' at times. I reinforced these episodes by giving in > and not making him do the things that triggered them. It is > something his brain learned to do, and they are completely > subconscious. We always noticed that when he was feeling good and > happy, they didn't happen. Well, now he is feeling good and he is > very happy and these episodes are not occuring. I think the big > difference in his emotional well-being is that he is off those high > doses of medication that made everything pertaining to school so > difficult. As soon as we can schedule an IEP I think we'll say > thank you and so long to his full time academic aid. > I'm sure there are parents reading this who are in the middle of > great struggles. If it helps, use our stories to keep the hope > alive. I know there are no guarantees in life, but with this diet, > there is every reason to hope! > Thank you everyone for your wonderful support. I am thinking, > praying and hoping for the best for evey single one of your kids. > Langan, enjoy that Mcs meal, and think of Ethan when you > eat a fry! > Gretchen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2004 Report Share Posted September 9, 2004 Gretchen, What a wonderful, upbeat message. Thank you so much!! I am sooooo happy that Ethan is doing well! That is fabulous news! Please keep us posted. Even though we are techinically keto alumni now, I will always feel like a part of this family. And who knows if/when we'll give keto another shake down the road. Langan still hasn't been to Mc's- she slept through the time I had away from work yesterday afternoon- but we'll get there. We had our first family meal EVER last night and it was wonderful to be together. I know many parents manage to eat with their keto kids but it was too hard for her to see us eating and so we usually ate separately (my husband and I) while the other one watched Langan. Not really the kind of " togetherness " we wanted, but Langan was too little to understand about the keto meals and too much of a food lover not to complain. So last night we all ate the same meal, and it was really nice. So far, knock on wood, seizures have taken a break. Other than a possible partial late last week, it has been 9 days. They could rear their ugly head any day now, but for now we are just so thankful that she has the break from them. In the meantime, she is happier by the day, discovering the joys of foods she never got to try before (Nilla Wafers being her new favorite) and getting so strong that it amazes me when I think of what the acidosis did to her little body. I have this strange guilt about not measuring her meals any more, and I am still keeping my compulsive little list of everything she does from when she sleeps to when she poops to how much/what she eats and drinks. Some habits are hard to break.... Take care and hug sweet Ethan for me! , mom to Langan, 2 yrs old and keto kid from 11/03 to 9/7/04 but forever a keto kid at heart!! > I've been away a week or so, and what a pleasant surprise I've come > home to. I quickly scanned recent postings, and forgive me if I am > missing something, but the news of our kids seems to be particularly > good the last few days. Stella, Langan, and even despite pneumonia, > , are experiencing seizure free days lately. And , > too, I think. Let me add Ethan to the list. > School started for Ethan yesterday. Even last week I was dreading > the start of school, fearing the worse, since he was still having 2- > 3 'freezing' episodes each day. But he hasn't had any either > yesterday or today, and almost as good, he is really excited about > school, dashing off to be there. That has not happened since he > restarted medication in 2nd grade (3 years ago.) His psychologist > believes that perhaps resumming normal activity will be the best > therapy for stopping these 'psuedo seizures,' and perhaps he is > right. > Looking back, I can kind of see how these things started. > Initiating the diet and weaning medicine were so emotionally and > physically tormoltuous (wish I could spell) that his brain just sort > of 'checked out' at times. I reinforced these episodes by giving in > and not making him do the things that triggered them. It is > something his brain learned to do, and they are completely > subconscious. We always noticed that when he was feeling good and > happy, they didn't happen. Well, now he is feeling good and he is > very happy and these episodes are not occuring. I think the big > difference in his emotional well-being is that he is off those high > doses of medication that made everything pertaining to school so > difficult. As soon as we can schedule an IEP I think we'll say > thank you and so long to his full time academic aid. > I'm sure there are parents reading this who are in the middle of > great struggles. If it helps, use our stories to keep the hope > alive. I know there are no guarantees in life, but with this diet, > there is every reason to hope! > Thank you everyone for your wonderful support. I am thinking, > praying and hoping for the best for evey single one of your kids. > Langan, enjoy that Mcs meal, and think of Ethan when you > eat a fry! > Gretchen Quote Link to comment Share on other sites More sharing options...
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