Guest guest Posted August 8, 2000 Report Share Posted August 8, 2000 My name is . This is my first time with an e-mail group, so I hope I am doing this right. I have had 3 m/c's, one of which was ectopic. The last. Luckily, it was caught early enough to save my tube. I have been lurking around here for a few days and thought I would finally write and join in. I was wondering if any of you could suggest any readings or websites that I could learn more about miscarriages and ectopic pregnancies. A friend of mine passed on a site to me a few days ago and it was so nice I thought I would pass it on also. The women who wrote the website and book had 6 miscarriages and wrote a book of true stories. Here is that site: http://www.pain-heartache-hope.com Also, please let me know if any of you know any other books out or websites I could refer to. ________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2000 Report Share Posted August 8, 2000 -- Welcome to our group. There's alot of great support and info here. By the way, I like your email addy. Here are some links for you... Ectopic http://healthlinkusa.com/102.html http://www.advancedfertility.com/ectopic.htm http://www.ability.org.uk/Ectopic_Pregnancy.html Miscarriage http://www.inciid.org/mismanl.html Great for EVERYONE to read! http://www.baby-place.com/miscarriage.htm http://www.fertilityplus.org/faq/miscarriage/resources.html I'm sure this is more than enough to get you started. There are many links on these pages as well. Tricia ________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2000 Report Share Posted August 8, 2000 , Welcome to the group. I'm sorry it's under difficult circumstances. They ladies here are wonderful and very supportive. I'm sure you will find great comfort here. You are in my thoughts and prayers. Love & hugs, Jo-Ann MaCoy wrote: > > My name is . This is my first time with an e-mail group, so I hope I > am doing this right. I have had 3 m/c's, one of which was ectopic. The > last. Luckily, it was caught early enough to save my tube. I have been > lurking around here for a few days and thought I would finally write and > join in. > > I was wondering if any of you could suggest any readings or websites that I > could learn more about miscarriages and ectopic pregnancies. A friend of > mine passed on a site to me a few days ago and it was so nice I thought I > would pass it on also. The women who wrote the website and book had 6 > miscarriages and wrote a book of true stories. Here is that site: > > http://www.pain-heartache-hope.com > > Also, please let me know if any of you know any other books out or websites > I could refer to. > > > ________________________________________________________________________ > Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2002 Report Share Posted February 27, 2002 Bobbie, We are in NZ, so can't help re how to go about starting the diet over there, I'm sure others here on the list can though. Does your son have an actual diagnosis, or cause for his seizures? The ketogenic diet is for children whose epilepsy is not controlled by meds, or who have unnacceptable med side effects, even if they were controlled seizure wise. I would recommend reading the book written by Dr J. Freeman, who practices at s Hopkins Hospital in Boston. There is a fairly recent reprint, the 3rd edition. My book goes walkies whenever I need to refer to it, but I think it's titled 'The ketogenic diet, a treatment for epilepsy' (???)If you say your son is on 4 meds, it is highly likely (speaking from our own experience) that the seizures may unfortunately be aggravated by lots of meds together. Our son , 5 yrs old, started seizures at age 3 and a half, many meds did not help him, in fact many aggravated his condition, especially when the doses were too high. For instance, I remember one EEG, where like your son, it was reported that all abnormal movements did not correlate with seizure activity, that he seemed to have ataxia as well as the seizures. Little hand jerks, head nods etc. Turns out, it was the tegretol that actually caused these movements, they went away as soon as we removed that med. The pros of the diet, well...read a sample of previous posts, you will see some real miracle stories, it really does work, and fantastically well for a lot of children. One of the main benefits is being able to reduce the medication, you can almost physically see the 'fog' gradually lifting, the lucky ones who are fully controlled can have no further seizures, med free and seizure free. A lot of families do not see complete control until the meds are gone, they can actually interfere with the diet working 100%. Different neuros have different ideas on how to do this, some say not to reduce until seizure free for quite a while, but some agree that until the meds are heavily reduced, or gone altogether, the diet will not reach it's full treatment potential. I certainly would have tried weaning meds before starting the diet, had I realised this, they complicate so many things when trying to 'finetune' the diet, and we have found the withdrawl seizures from reducing the meds seem to hit harder than they did pre diet. There are some kids, though, who the diet for some reason, does not help at all, or not enough to warrant keeping them on it. I guess the answer to that one is, you have to try to know! Points against, obviously restricted food, it is very hard to see my 5 yr old watch his siblings eat a normal diet, especially when his favourite foods are involved. He understands why he can't, however, and there are ways of making the meals varied and interesting, once you get going. For the parents, it can be time consuming, all the food must be accurately weighed and calculated, but that gets easier as time goes on. You have to be even more vigilant watching the children, to make sure they dont 'cheat' as breakthrough seizures may occur. Health wise, some kids do not grow on the diet, but the ratios etc can be altered as time goes on to assist in this, and if they are lucky, the diet is sometimes only for 2 or so years. Growth will then do a 'catch up' for those who didn't grow. (My son hasn't grown in height for 5 months, but we are lucky in that he is extremely tall for his age anyway, not really a factor for him, at this stage anyway) Cholestrol, liver and kidney function etc, has to be monitored, but if you do start the diet for your son, he should have a 'keto team' (neuro, dietician etc) to help with all of that. There are not a lot on this list who would say the cons outweigh the pros, it is a fair bit of hard work, but the results can be staggering, and I, personally, would do this for the next ten years, if it keeps the seizures away, and allows to function at a normal cognitive level, and learn, without the meds or seizures halting his development. Well, that's my novel, good luck in your quest, Hill new here... > Hi > I have a 14mnth old old who has severe seizures of all kinds and > alot of his movements didnt read on the egg, well my son has been on > just about every med there is to be on for his seizrues but non of > wich has helped he is currently on 4 right now and still has up to > 100 seizures a day, i am beginning to lose hope then i heard about > this diet, but i would like to know the pro's and con's, and how > would i get my neuro to put my son on it...?????? > > bobbie > > > > " The Ketogenic Diet....a realistic treatment option, NOT just a last resort! " > > List is for parent to parent support only. > It is important to get medical advice from a professional keto team! > Subscribe: ketogenic-subscribe > Unsubscribe: ketogenic-unsubscribe > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2002 Report Share Posted February 27, 2002 My son began the diet at age 17 months at s Hopkins in Baltimore, land. He is now treated at Boston Children's and Mass General. Find a neuro who would be supportive, and who is TRAINED on implementing the keto diet. Read up on it first. I would try to find a good, well trained epilepsy center who does the diet and go for a consult. If he is still seizing on 4 meds I would think the diet would be a very reasonable thing to try. And he's still young enough that it might not be as difficult as it might with an older child. My son began the diet on 3 meds that were not helping and he improved dramatically. Where do you live and who is your neuro? Maybe some others on the list have a local reference for you. Have you read anything on the diet? Get the book by Freeman, Vining and Pillas, The Epilepsy Diet Treatment. That will get you started and give you a sense for what it's about. Do you know why he has seizures? And what type does he have? Barb Swoyer, Boston new here... > Hi > I have a 14mnth old old who has severe seizures of all kinds and > alot of his movements didnt read on the egg, well my son has been on > just about every med there is to be on for his seizrues but non of > wich has helped he is currently on 4 right now and still has up to > 100 seizures a day, i am beginning to lose hope then i heard about > this diet, but i would like to know the pro's and con's, and how > would i get my neuro to put my son on it...?????? > > bobbie > > > > " The Ketogenic Diet....a realistic treatment option, NOT just a last resort! " > > List is for parent to parent support only. > It is important to get medical advice from a professional keto team! > Subscribe: ketogenic-subscribe > Unsubscribe: ketogenic-unsubscribe > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2002 Report Share Posted February 27, 2002 Im in illinois and the seizures are caused from brain damage, i have been doing alot of research on the diet my worry is if he is going to get sick easily or not... > My son began the diet at age 17 months at s Hopkins in Baltimore, > land. He is now treated at Boston Children's and Mass General. Find a > neuro who would be supportive, and who is TRAINED on implementing the keto > diet. Read up on it first. I would try to find a good, well trained > epilepsy center who does the diet and go for a consult. If he is still > seizing on 4 meds I would think the diet would be a very reasonable thing to > try. And he's still young enough that it might not be as difficult as it > might with an older child. My son began the diet on 3 meds that were not > helping and he improved dramatically. > Where do you live and who is your neuro? Maybe some others on the list have > a local reference for you. Have you read anything on the diet? Get the > book by Freeman, Vining and Pillas, The Epilepsy Diet Treatment. That will > get you started and give you a sense for what it's about. > Do you know why he has seizures? And what type does he have? > Barb Swoyer, Boston > new here... > > > > Hi > > I have a 14mnth old old who has severe seizures of all kinds and > > alot of his movements didnt read on the egg, well my son has been on > > just about every med there is to be on for his seizrues but non of > > wich has helped he is currently on 4 right now and still has up to > > 100 seizures a day, i am beginning to lose hope then i heard about > > this diet, but i would like to know the pro's and con's, and how > > would i get my neuro to put my son on it...?????? > > > > bobbie > > > > > > > > " The Ketogenic Diet....a realistic treatment option, NOT just a last > resort! " > > > > List is for parent to parent support only. > > It is important to get medical advice from a professional > keto team! > > Subscribe: ketogenic-subscribe@y... > > Unsubscribe: ketogenic-unsubscribe@y... > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2002 Report Share Posted February 27, 2002 Bobbie, I'd say that one of the pros is that this diet holds a lot more promise for kids like your son than most doctors even realise. If you decide you really want to try it, and your child's neuro is against it or doesn't know much about it, I'd suggest finding a different neuro that believes in it.... or ask to be referred to a Keto clinic. One of the cons would be starting the diet on a combination of several meds.... it can be a tough juggling act adjusting the diet and weaning the meds. Go in and read the files here at our site and you'll learn a ton. Patti new here... HiI have a 14mnth old old who has severe seizures of all kinds and alot of his movements didnt read on the egg, well my son has been on just about every med there is to be on for his seizrues but non of wich has helped he is currently on 4 right now and still has up to 100 seizures a day, i am beginning to lose hope then i heard about this diet, but i would like to know the pro's and con's, and how would i get my neuro to put my son on it...??????bobbie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2002 Report Share Posted February 27, 2002 Bobbie.... there is one more "pro" in your favor..... doing the diet with a child who is tube fed is (I hear) a breeze. You won't have any struggles with getting him to eat all his food, etc. Patti, mom to Katera, age 5 (partial ACC, microcephaly, global delays) in Washington state. Re: new here... I guess i should of explained his condition a little more, my son has microcephaly and has been diagnosed with cp, spastic quad, HIE, fundo tube fed, severe seizure disorder the seizures vary becuase he keeps comeing up with new ones, larygnomalacia, corticaly blind, it is a long list and i just would like at least to eliminate some of the things becuz it is so hard towatch him go through this, and he is developmentaly delayed and the seizures are only delaying him more, becuz he has clusters after clusters of them, some of them are laughing spells someof them are rolling the eyse and twitching real bad, and most of them are just straight twichting non stop all day long and they even wake him in the middle of the night it interferes alot with his sleep..... Quote Link to comment Share on other sites More sharing options...
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