Guest guest Posted November 15, 2000 Report Share Posted November 15, 2000 Rosemary, Hi. It's nice to hear from someone else who has a child with NF2. Up until two months ago I had never heard of NF. We did ask Nick's neurosurgeon how long he thought he had the tumor in his neck. He told us probably a long time since they are supposed to be slow growing tumors. How long is a long time in a six year old? He said the tumor in Nick's neck was probably there as long as the tumor in his eye. We found out Nick had something wrong with his eye when he was six months old so either he was born with it or it happened some time before he was six months old. I think part of the reason the geneticist at the NF clinic told us to learn sign language was because she was just trying to think of things to tell us. She really didn't tell me much more than I had already learned via the internet. I wonder sometimes how much the doctors know about NF2. It was kind of hard to hear the doctor say we could need sign language. I am still in the process of accepting that Nick has NF2. I was looking out the window at the hospital NF2 clinic while we were waiting to see the doctor and wishing we weren't there. Will things ever get back to normal? It is difficult trying to decide how much to tell Nick about his having NF2. My mother-in-law said she didn't think we should tell him much. That's hard to do when he hears us talking with doctors and other people about it. I think he does need to know he has it. I wouldn't not want to tell him about it like it was something to be ashamed about. I don't want to get into a lot of details about it with him either. He's only six years old. He asked me the other night if the tumor that was taken out of his neck could grow back. I told him it could, but we didn't think it would. When he first found out he had a tumor in his neck he couldn't understand it. He thought everybody should have a tumor in their neck. He has asked why we need to learn sign language, too. So we are giving him some information, but not too much. What have you told your son? Take care, New member > welcome to the crew. > I have a7 year old son, youngest of three, who is also a new genetic > alteration. > We have a very similar story. Diagnosed around the same time, and the > geneticists also said presumptive Nf2 and a specialist at an Nf clinic said > via email " almost certain Nf2 " . > Louis has eye symptoms as well as two meningiomas (one excised in August and > second to be removed on Dec.5).They are/were huge!!!! > > I'm wondering if your surgeons passed any comment on how long Nick's tumors > had been growing?? > > Our first clue to any of this was Louis having headaches over a period of > weeks back in July. Apart from this, louis is a very exuberant, mischievous, > energetic and gorgeous ratbag...... > > Your drs recommendation for the family to learn sign language infuriates > me....whilst i think learning sign language should be taught in all schools > and in itself is a very valuable thing, in this context, I consider it to > be a pathetic, premature admission of incompetence. How dare they!!! > This would only make sense to me if Nick already had advanced An's for which > surgery seemed extremely complicated. > > Every one needs hope, parents in particular. > Whilst I'm praying for a cure and a stay on further complications, I'm also > actively searching and ASKING for it far and wide. > > I believe this is a very curable disorder, but I think like everything in > life, if you don't work towards to it, it isn't going to fall into your > lap. > Sorry, I'm a little strident this morning, i can be quite nice, I > promise..... > feel free to email me privately, i guess i would like to chat about how much > to communicate to the children.....they are so young, and it is a different > situation to children who are familiar with Nf2 from their own family. > rosemary. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2000 Report Share Posted November 15, 2000 Rosemary, Hi. It's nice to hear from someone else who has a child with NF2. Up until two months ago I had never heard of NF. We did ask Nick's neurosurgeon how long he thought he had the tumor in his neck. He told us probably a long time since they are supposed to be slow growing tumors. How long is a long time in a six year old? He said the tumor in Nick's neck was probably there as long as the tumor in his eye. We found out Nick had something wrong with his eye when he was six months old so either he was born with it or it happened some time before he was six months old. I think part of the reason the geneticist at the NF clinic told us to learn sign language was because she was just trying to think of things to tell us. She really didn't tell me much more than I had already learned via the internet. I wonder sometimes how much the doctors know about NF2. It was kind of hard to hear the doctor say we could need sign language. I am still in the process of accepting that Nick has NF2. I was looking out the window at the hospital NF2 clinic while we were waiting to see the doctor and wishing we weren't there. Will things ever get back to normal? It is difficult trying to decide how much to tell Nick about his having NF2. My mother-in-law said she didn't think we should tell him much. That's hard to do when he hears us talking with doctors and other people about it. I think he does need to know he has it. I wouldn't not want to tell him about it like it was something to be ashamed about. I don't want to get into a lot of details about it with him either. He's only six years old. He asked me the other night if the tumor that was taken out of his neck could grow back. I told him it could, but we didn't think it would. When he first found out he had a tumor in his neck he couldn't understand it. He thought everybody should have a tumor in their neck. He has asked why we need to learn sign language, too. So we are giving him some information, but not too much. What have you told your son? Take care, New member > welcome to the crew. > I have a7 year old son, youngest of three, who is also a new genetic > alteration. > We have a very similar story. Diagnosed around the same time, and the > geneticists also said presumptive Nf2 and a specialist at an Nf clinic said > via email " almost certain Nf2 " . > Louis has eye symptoms as well as two meningiomas (one excised in August and > second to be removed on Dec.5).They are/were huge!!!! > > I'm wondering if your surgeons passed any comment on how long Nick's tumors > had been growing?? > > Our first clue to any of this was Louis having headaches over a period of > weeks back in July. Apart from this, louis is a very exuberant, mischievous, > energetic and gorgeous ratbag...... > > Your drs recommendation for the family to learn sign language infuriates > me....whilst i think learning sign language should be taught in all schools > and in itself is a very valuable thing, in this context, I consider it to > be a pathetic, premature admission of incompetence. How dare they!!! > This would only make sense to me if Nick already had advanced An's for which > surgery seemed extremely complicated. > > Every one needs hope, parents in particular. > Whilst I'm praying for a cure and a stay on further complications, I'm also > actively searching and ASKING for it far and wide. > > I believe this is a very curable disorder, but I think like everything in > life, if you don't work towards to it, it isn't going to fall into your > lap. > Sorry, I'm a little strident this morning, i can be quite nice, I > promise..... > feel free to email me privately, i guess i would like to chat about how much > to communicate to the children.....they are so young, and it is a different > situation to children who are familiar with Nf2 from their own family. > rosemary. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2000 Report Share Posted November 15, 2000 Rosemary, Hi. It's nice to hear from someone else who has a child with NF2. Up until two months ago I had never heard of NF. We did ask Nick's neurosurgeon how long he thought he had the tumor in his neck. He told us probably a long time since they are supposed to be slow growing tumors. How long is a long time in a six year old? He said the tumor in Nick's neck was probably there as long as the tumor in his eye. We found out Nick had something wrong with his eye when he was six months old so either he was born with it or it happened some time before he was six months old. I think part of the reason the geneticist at the NF clinic told us to learn sign language was because she was just trying to think of things to tell us. She really didn't tell me much more than I had already learned via the internet. I wonder sometimes how much the doctors know about NF2. It was kind of hard to hear the doctor say we could need sign language. I am still in the process of accepting that Nick has NF2. I was looking out the window at the hospital NF2 clinic while we were waiting to see the doctor and wishing we weren't there. Will things ever get back to normal? It is difficult trying to decide how much to tell Nick about his having NF2. My mother-in-law said she didn't think we should tell him much. That's hard to do when he hears us talking with doctors and other people about it. I think he does need to know he has it. I wouldn't not want to tell him about it like it was something to be ashamed about. I don't want to get into a lot of details about it with him either. He's only six years old. He asked me the other night if the tumor that was taken out of his neck could grow back. I told him it could, but we didn't think it would. When he first found out he had a tumor in his neck he couldn't understand it. He thought everybody should have a tumor in their neck. He has asked why we need to learn sign language, too. So we are giving him some information, but not too much. What have you told your son? Take care, New member > welcome to the crew. > I have a7 year old son, youngest of three, who is also a new genetic > alteration. > We have a very similar story. Diagnosed around the same time, and the > geneticists also said presumptive Nf2 and a specialist at an Nf clinic said > via email " almost certain Nf2 " . > Louis has eye symptoms as well as two meningiomas (one excised in August and > second to be removed on Dec.5).They are/were huge!!!! > > I'm wondering if your surgeons passed any comment on how long Nick's tumors > had been growing?? > > Our first clue to any of this was Louis having headaches over a period of > weeks back in July. Apart from this, louis is a very exuberant, mischievous, > energetic and gorgeous ratbag...... > > Your drs recommendation for the family to learn sign language infuriates > me....whilst i think learning sign language should be taught in all schools > and in itself is a very valuable thing, in this context, I consider it to > be a pathetic, premature admission of incompetence. How dare they!!! > This would only make sense to me if Nick already had advanced An's for which > surgery seemed extremely complicated. > > Every one needs hope, parents in particular. > Whilst I'm praying for a cure and a stay on further complications, I'm also > actively searching and ASKING for it far and wide. > > I believe this is a very curable disorder, but I think like everything in > life, if you don't work towards to it, it isn't going to fall into your > lap. > Sorry, I'm a little strident this morning, i can be quite nice, I > promise..... > feel free to email me privately, i guess i would like to chat about how much > to communicate to the children.....they are so young, and it is a different > situation to children who are familiar with Nf2 from their own family. > rosemary. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2000 Report Share Posted December 7, 2000 well alot of us went back on the monday after Thanksgiving.. oh welcome by the way... i figure this.. last holidays i gained ten pounds so if i can lose up till Christmas i am way ahead of where i was last year..at least i have a good head start.. and after ten days back on i feel much better and have way more energy . and besides its a healthy way to eat and stay away from all the temptations.. but its up to you if you dont want to do it you wont .. you have to want to get clean and healthy more than you want those Christmas treats.. so my vote is yes you have almost three weeks to get back on track if thats what you want to do . if not you can always start after.. but.. think of all the bad stuff you will pass up if you start now catherine ----- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2000 Report Share Posted December 7, 2000 well alot of us went back on the monday after Thanksgiving.. oh welcome by the way... i figure this.. last holidays i gained ten pounds so if i can lose up till Christmas i am way ahead of where i was last year..at least i have a good head start.. and after ten days back on i feel much better and have way more energy . and besides its a healthy way to eat and stay away from all the temptations.. but its up to you if you dont want to do it you wont .. you have to want to get clean and healthy more than you want those Christmas treats.. so my vote is yes you have almost three weeks to get back on track if thats what you want to do . if not you can always start after.. but.. think of all the bad stuff you will pass up if you start now catherine ----- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2000 Report Share Posted December 7, 2000 well alot of us went back on the monday after Thanksgiving.. oh welcome by the way... i figure this.. last holidays i gained ten pounds so if i can lose up till Christmas i am way ahead of where i was last year..at least i have a good head start.. and after ten days back on i feel much better and have way more energy . and besides its a healthy way to eat and stay away from all the temptations.. but its up to you if you dont want to do it you wont .. you have to want to get clean and healthy more than you want those Christmas treats.. so my vote is yes you have almost three weeks to get back on track if thats what you want to do . if not you can always start after.. but.. think of all the bad stuff you will pass up if you start now catherine ----- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2000 Report Share Posted December 7, 2000 Welcome to the list, Janice! The holidays ARE a hard time to diet, but then it will be even harder to lose the 15-20 pounds you are liable to put on during this month! Why not do induction for a week to get back on track and then it might give you the incentive to keep it up...what an accomplishment it would be to overcome this season! Whatever you decide to do, this group is a great support...I am like you, can't even conceive of keeping this up during such an enticing time. What I have made up my mind to do though, is to walk everyday (3 miles at least) in the hopes that I won't GAIN....and January 1, 2001 will be NO ORE EXCUSES day... Joya in Honduras who lost and gained 25 pounds too.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2000 Report Share Posted December 7, 2000 Welcome to the list, Janice! The holidays ARE a hard time to diet, but then it will be even harder to lose the 15-20 pounds you are liable to put on during this month! Why not do induction for a week to get back on track and then it might give you the incentive to keep it up...what an accomplishment it would be to overcome this season! Whatever you decide to do, this group is a great support...I am like you, can't even conceive of keeping this up during such an enticing time. What I have made up my mind to do though, is to walk everyday (3 miles at least) in the hopes that I won't GAIN....and January 1, 2001 will be NO ORE EXCUSES day... Joya in Honduras who lost and gained 25 pounds too.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2000 Report Share Posted December 7, 2000 Welcome to the list! Beth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2001 Report Share Posted January 5, 2001 Protein is certainly a big player in this diet, but so are low carb veggies. Being able to not worry so much about fat also lets you make some wonderful sauces. Without the carby stuff, all your dinner plate is really missing is a big pile of flavourless mush! CelebrateLowCarb on egroups is a great recipe resource on egroups. You don't get daily emails, just 2 themed recipe digests every month. The archives are wonderful and can be searched. There are tons of great recipes available on the web. I would suggest that you always double check the carb count on them though. Sometimes typos, misconceptions or different brands used can really impact what the true count of the recipe is. It's worth the 5 minutes it takes to verify what you are about to put in you mouth Kirstie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2001 Report Share Posted January 5, 2001 In a message dated 1/5/01 3:41:03 PM Eastern Standard Time, dawnbluemoon@... writes: << Are you not aware that many in the nutrition field consider the Atkins diet to be dangerous? IF NOT FOLLOWED APPROPRIATELY, it can lead to major organ damage (namely kidneys). >> Sorry but the Kidney damage warning is a myth. Too much protein can be hard on an already ill kidney but protein will not cause a kidney to become damaged. Hate to burst your bubble. aka Nurse Jen (Terry's name for me) :-) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2001 Report Share Posted January 5, 2001 In a message dated 1/5/01 3:41:03 PM Eastern Standard Time, dawnbluemoon@... writes: << Are you not aware that many in the nutrition field consider the Atkins diet to be dangerous? IF NOT FOLLOWED APPROPRIATELY, it can lead to major organ damage (namely kidneys). >> Sorry but the Kidney damage warning is a myth. Too much protein can be hard on an already ill kidney but protein will not cause a kidney to become damaged. Hate to burst your bubble. aka Nurse Jen (Terry's name for me) :-) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2001 Report Share Posted January 5, 2001 I am sure that you wouldn't like being compared to the savage cannibals who eat only meat because you don't eat as many veggies as I do. Here are two definitions I found for cannibal..... A person who eats the flesh of other human beings. An animal that feeds on others of its own kind. Since I am not eating other Atkids, I hardly find this comparison appropriate. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2001 Report Share Posted January 5, 2001 I am sure that you wouldn't like being compared to the savage cannibals who eat only meat because you don't eat as many veggies as I do. Here are two definitions I found for cannibal..... A person who eats the flesh of other human beings. An animal that feeds on others of its own kind. Since I am not eating other Atkids, I hardly find this comparison appropriate. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2001 Report Share Posted January 5, 2001 In a message dated 1/5/01 4:13:40 PM Eastern Standard Time, khawkey@... writes: << Is Terry out of town? >> Kirstie... That's the only thing I can figure. LOL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2001 Report Share Posted January 5, 2001 In a message dated 1/5/01 4:13:40 PM Eastern Standard Time, khawkey@... writes: << Is Terry out of town? >> Kirstie... That's the only thing I can figure. LOL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2001 Report Share Posted January 5, 2001 In a message dated 1/5/01 4:13:40 PM Eastern Standard Time, khawkey@... writes: << Is Terry out of town? >> Kirstie... That's the only thing I can figure. LOL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2001 Report Share Posted January 5, 2001 Sorry but your dietician is misinformed. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2001 Report Share Posted January 5, 2001 Didn't I read that modified low-carb - without ketosis was suggested for children with autism, or am I confusing this with something else? I've only read about it being for seizure control.....here's an article.... http://www.vanderbilt.edu/AnS/psychology/health_psychology/ketogenic_diets.htm Never heard about it being for Autistics let me know if you have an article about that.....that would an interesting read. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2001 Report Share Posted January 5, 2001 Didn't I read that modified low-carb - without ketosis was suggested for children with autism, or am I confusing this with something else? I've only read about it being for seizure control.....here's an article.... http://www.vanderbilt.edu/AnS/psychology/health_psychology/ketogenic_diets.htm Never heard about it being for Autistics let me know if you have an article about that.....that would an interesting read. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2001 Report Share Posted January 5, 2001 I'd be bored too if I ate meat all the time .. so I don't ... I eat eggs and cheese and salmon and tuna and every fish imagineable and pork (mmmmmmm the best white meat!) and chicken and turkey and veal and venison (if someone will send me some) and more eggs and cheese and ..... and every now and then I'll give in and have meat. I think mental attitude is so important here. People have happily dieted eating far less, like the grapefruit diet.... ummm to me that IS BORING! This is a great list to get ideas for recipes and such.. tink <<I am sort of confused because eating meat a lot seems it would get dull. >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2001 Report Share Posted January 5, 2001 Jerome, LOL and not laughing at the same time. Wish I had thought of that earlier (a few years ago) when my (now ex) daughter-in-law (who was basically a vegetarian) took 6 of my grandchildren and joined a religious cult. Haven't seen those children for years and one is now already 16, the baby is 5. Haven't seen any of them for almost 5 years. Makes sense to me also. Dwen Jerome Tan wrote: No, without meat doesn't make you dull, without meat is more dangerous, it really makes you dumb. Did you ever noticed why those cults don't allow their followers to eat meat? Well, some says that lack of Vitamin B12 from the meat really make one dumb, and it's easy to control those cult followers. Not yet scientifically proven, but the explanation seems logical. regards/ Jerome Tan jtan@... Mobile: +639175277928 new member > Greetings all, > > I after reading the Atkins book, I though I'd give it a try, I am > sort of confused because eating meat a lot seems it would get dull. I > do notice the cravings all go away and that sure helps, any advice? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2001 Report Share Posted January 5, 2001 Jerome, LOL and not laughing at the same time. Wish I had thought of that earlier (a few years ago) when my (now ex) daughter-in-law (who was basically a vegetarian) took 6 of my grandchildren and joined a religious cult. Haven't seen those children for years and one is now already 16, the baby is 5. Haven't seen any of them for almost 5 years. Makes sense to me also. Dwen Jerome Tan wrote: No, without meat doesn't make you dull, without meat is more dangerous, it really makes you dumb. Did you ever noticed why those cults don't allow their followers to eat meat? Well, some says that lack of Vitamin B12 from the meat really make one dumb, and it's easy to control those cult followers. Not yet scientifically proven, but the explanation seems logical. regards/ Jerome Tan jtan@... Mobile: +639175277928 new member > Greetings all, > > I after reading the Atkins book, I though I'd give it a try, I am > sort of confused because eating meat a lot seems it would get dull. I > do notice the cravings all go away and that sure helps, any advice? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2001 Report Share Posted January 5, 2001 Okay, from someone who seemingly is challenged daily, I can understand the desire for carbs, but my question would be " weren't you eating meat before? " You aren't necessarily eating more meat, you are eating less carbs. The best advice is always have something easy to fix/eat available and vary what you eat for meat so you don't get bored if you think that will be a problem for you. Jean 190/142/135 12/7/98 Re: new member No, without meat doesn't make you dull, without meat is more dangerous, it really makes you dumb. Did you ever noticed why those cults don't allow their followers to eat meat? Well, some says that lack of Vitamin B12 from the meat really make one dumb, and it's easy to control those cult followers. Not yet scientifically proven, but the explanation seems logical. regards/ Jerome Tan jtan@... Mobile: +639175277928 new member > Greetings all, > > I after reading the Atkins book, I though I'd give it a try, I am > sort of confused because eating meat a lot seems it would get dull. I > do notice the cravings all go away and that sure helps, any advice? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2001 Report Share Posted January 5, 2001 Okay, from someone who seemingly is challenged daily, I can understand the desire for carbs, but my question would be " weren't you eating meat before? " You aren't necessarily eating more meat, you are eating less carbs. The best advice is always have something easy to fix/eat available and vary what you eat for meat so you don't get bored if you think that will be a problem for you. Jean 190/142/135 12/7/98 Re: new member No, without meat doesn't make you dull, without meat is more dangerous, it really makes you dumb. Did you ever noticed why those cults don't allow their followers to eat meat? Well, some says that lack of Vitamin B12 from the meat really make one dumb, and it's easy to control those cult followers. Not yet scientifically proven, but the explanation seems logical. regards/ Jerome Tan jtan@... Mobile: +639175277928 new member > Greetings all, > > I after reading the Atkins book, I though I'd give it a try, I am > sort of confused because eating meat a lot seems it would get dull. I > do notice the cravings all go away and that sure helps, any advice? Quote Link to comment Share on other sites More sharing options...
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